ROLL CALL 2024

CivilMatt

How is everyone doing, I hope all is well with each of you. I hope you are recovering nicely from

your cancer treatments and are returning to your life as it was prior to your diagnosis. Well, this

will be my last time running the entire Roll Call by myself. Over the past few years I have

continued to fall further behind on what I feel the roll call is all about, which is members sharing

their stories about their cancer, their treatments and their final outcome and if the information

gleaned herein helps others, that’s all the better.

A popular H&N member most of us know will be taking over most of my duties as the manager of

the Roll Call. That member is wbcgaruss Currently, Russ is watching from the side lines as I show

him all the ins and outs of the Roll Call and what makes this newsletter important to me and

hopefully to you, those members who have been participating in the Roll Call over the years (since

I took the reins from HAWVET), know how passionate I am about the Roll Call.

To be honest and to come clean with the members of the Roll Call (who do not know), I must

confess I am suffering from Parkinson’s disease, And, it is the side effects from my PD which I

blame directly with my roll call struggles over the past few years. From trying to get the Roll Call

out on time, or making periodic updates. Russ can help me with the day-to-day operations of the

roll call, then maybe, I could work a little harder at recruitment of new members and

improvements to the content of the roll call. Moving forward, I encourage H&N members who

would like to join “the gang” at roll call or have questions about the roll call to contact CivilMatt

or wbcgaruss . And that is my big news. Please, give Russ a big H&N Roll Call welcome and your

support to the man of the hour.

Thanks to all who helped me, CivilMatt

ROLL CALL 2024

Acknowledgment, rules and guidelines will remain active “as is” for the Roll Call 2024 – First

posting

Acknowledgment - Roll Call is dedicated to the memory of HAWVET, whose curiosity to know and

to share a little bit about members of the Head and Neck Form inspired him to start and run this

thread (2008 thru 2014). Thank You, HAWVET. It also inspired CivilMatt to volunteer and to step

in and take over the Roll Call (2015 to present).

How to Enroll in the Roll Call. A H&N member will be enrolled in the current and active Roll Call on

the date they leave a post on the current (active) Roll Call or by sending me, CivilMatt or

wbcgaeuss a PM asking to be included on the Roll Call. If you do not want to participate, just ask

me and your name and information will be removed. Otherwise, just provide the information

asked for, then sit manager of the roll callback, put your feet up and I will do the rest. It is just

that easy

Example of an active and current Roll Call - ROLL CALL 2021 – December 28, 2021 (read, enjoy

and submit!)

Example non-active and current Roll Call (about to be updated) - ROLL CALL 2021 – November

26, 2021(CLOSED), read, enjoy and DO NOT submit!

Roll Call - Information Required for Enrollment-You should be signed up on the CSN website and

be a member of the H&N forum. It is desirable to have prospective Roll Call members include

their CSN name, the state they live in (or country) and their diagnosis for their description. Please

do not include any real names, or descriptions which may be deemed too personal or descriptive

to who you are, or where you live.

If you see a question mark by a name it means something is missing from that member’s

description or a (OM) means one of the 17 original members from 2008.

Example: CivilMatt (?) Jkinobay (OM)

Information needed at updates on checking in - When you’re checking in, just continue your story

about your recovery to date and any information you wish to share with other members. You do

not need to repeat what you said in previous check-ins unless it is something new or continuing. I

have preferred to take a “laissez-faire” approach to the content of what members submit but I will

edit what you submit, if needed.

Roll Call Maintenance -Please feel free to enroll or check in whenever you see the ROLL CALL

thread. I will update the Roll Call periodically throughout the year. Remember, an update is for

inclusion of new members or information and edits are for problems, poor grammar, mistakes and

errors which I have found or which members have lead me to. I consider each of the Roll Call

members to have a little bit of copy-editor in each of them and I look forward to working with you

and I truly appreciate your help. Finally, if I missed your inclusion to the Roll Call, I am sorry and I

will do what is necessary to correct this type of error.

Roll Call general information about edits and updates - Edits will be made during the periodic

UPDATES to Roll Call. The reason for this is the size of the Roll Call can make minor edits a

nightmare, no kidding. BUT, I promise to try and correct any problems brought to my attention,

immeidately.

ROLL CALL 2022 and ROLL CALL 2023 FINAL STATUS: Well, the numbers are in and we had

fifteen (15) members who enrolled or check back in during 2022; of that number seven (13)

were existing members and two (2) were new members. For those who took the time to join or

check in on ROLL CALL 2022, and for ROLL CALL 2023 there were a total of fifteen (15) existing

members and one (1) new member CivilMatt thanks you very much. Please check out the

Participation Summary for more information with regards to the number of members over the

previous years of the Roll Call.

CivilMatt side note:

I did get my first request to have a members name deleted from the Roll Call during the 2022

year. I felt bad about their decision to leave and part of their reason was my fault. Some how I

had got the correct spelling of their name mixed up and they thought I was making fun of them. I

mentioned to them that I have copies of 99% of everything I have ever up loaded to this forum

and I could not find any mention of me misspelling their name. Also, I mentioned I have never

changed anyones name on the H&N forum and I was very sorry for this “name mistake” to have

happened. By the time I was given a chance to respond their mind was made up and I honored

their request. If any member sees anything out of order, please, let me know. I only signed

myself up (volunteered) for the Roll Call because I really liked it and the friends I have made.

I am trying to figure out how I can increase the Roll Call participation. I have been trying to get

more members to check in or enroll since I took over the reins of the Roll Call. The revised format

at CSN has been a challenge for me to figure out and anticipate what the RC document will look

like on-line. I do believe this is an important thread to those who participate (members or not,

cancer or not). After all, we only go around once and I think you should be heard.

I appreciate those members who take part in the RC and this is another reason why CivilMatt

considers the Head and Neck forum to be the best on the CSN website, bar none!

As always, the ROLL CALL thread is completely voluntary and just for the enjoyment and

information it provides. Leave your mark, share your stories, you matter!

ROLL CALL PARTICIPATION SUMMARY

With this summary I am bringing all the member names and information submitted to the Roll Call

since the beginning on August 5, 2008 to present. Other than the editing of the Roll Call to comply

with the CSN request, bringing all the data together in this summary has been an entertaining

challenge for me. I believe I have enough information from the pre-CivilMatt days to produce an

accurate Summary Table but, HAWVET and CivilMatt have one major difference in the way the Roll

Call year is timed and member participation counted. HAWVET timed his years from August to

August and CivilMatt likes to go from January 1st to December 31st each year. This is no big deal,

but it is interesting to sort things into their correct years. I have left HAWVET’s information just

how he intended it to be and I only added ROLL CALL 2008 because I wanted to show the first

Enrollment of 17 H&N members who had submitted their information during the 2008 calendar

year. ROLL CALL 2009 is HAWVET’s designation as the first year of the RC. Anyway, inclusion of

RC 2008 may make more sense for those who read that HAWVET administered the RC from 2008

– 2014 and wanted to know about the 2008 members.

I realize that assembling this is summary table has consumed many hours and may seem as an

unnecessary addition to the RC by many members but, this is what happened and why. It seems

that many H&N members hang-their-hat on numbers. Number of PEGS, number of rads, number

of days since you lost your taste. Well, just call this some more numbers for your Total Cancer

Analysis.

CivilMatt

H&N MEMBERS

aak16, from Pennsylvania. Enrolled February 12, 2018, 30 years old and Diagnosed with SCC of

the vocal cords in June 2017 after laser removal of some of the growths. Completed 29 radiation

treatments in July-August 2017. Radiation kicked my butt and while I had the summer off

because I'm a teacher, I took 5 weeks off of work once school started at the end of August to

recover. My 3-month post-treatment CT scan was clear. Right now I'm 5+ months out and my

problem is that my voice is very weak because my vocal cords aren't vibrating. A Laryngologist

told me there's no fix for it but we should wait until the one year mark to see if some fo the

function returns after my throat has had more time to heal.

ADBWanderer, from Arizona. Esthesioneuroblastoma polyp surgery June 2018, dx June, surgery

August 2018 in Tucson AZ. , getting cisplatin every third week and radiation M-F for 6 weeks.

Doing pretty well with fatigue as the main symptom. I am the caregiver.

Adventurebob, from California. joined forum June 2010, enrolled August 21, 2010. DX’d NPC,

Stage IV, with mets to lots of bone. In May 2010. Checked in January 20, 2011. MIA in 2012

checked back in March 2013. Lots of chemo/radiation in 2010, more in August 2011 for bone mets

in right hip, more chemo/radiation Sep 2012-Jan2013. Married in bottom of Grand Canyon

October 9, 2012 and now doing well.

AJW1966, from Maryland. Joined forum November 2012, enrolled March 7, 2013, DX’d August 12,

2012 w/SCC left side HNC. Treatments completed November 30 and still have difficulties with

after effects, but slowly improving.

Akotke, from Alabama. Joined forum March 2011, enrolled August 12, 2011. DX’d Stage IV, right

tonsil in November 2010. Was MIA until checked back in February 12, 2013. Still NED, working full

time and attending school for Nuclear Medicine. Still w/constant pain from radical neck dissection,

dry mouth and some trouble swallowing.

Alpinelife (?) Enrolled February 4, 2019 I’m still here. I began my cancer journey late 2013 with

Stage 0 (or carcinoma in-situ) tongue cancer. Have had two recurrences, the last in Oct 2017 as

stage IV tongue cancer. Treatments ended in Feb 2018, since then have been NED. A tough

journey, but life remains good.

AndrewP16nose, from New Zealand. Enrolled July 19, 2015, Diagnosed Sept 2014. Invasive SCC

nasal septum extending into maxilla. Incomplete excision Oct 2014. Radio and chemo for 35 days.

PET scan April 2015- NED. Facial reconstruction surgery with fibula free flap June 2015.

Recovering prior to tidy up surgeries.

Andy13460, from Republic of Ireland, Co Mayo. Enrolled April 22, 2017, Hi I started with a sore

throat end of August 2016, visited a G.P. first week in November. G.P. finally sent a referral letter

to an ENT consultant

on January 12. 2017. I got to see the consultant on February 28, 2017; he felt around my tongue

and said there and then “there was a growth inside my tongue at the base right hand side.” On

March 6. 2017 I had a Head & Neck MRI scan; CT scans head, chest, abdomen & pelvis. On

March 13, 2017 I received the results of the scans, i.e. 2.2cm tumour with what looks to be 1

lymph node so it came up as T2:N1:M0 (CT chest, abdomen & pelvis nothing showing up) He

couldn’t do the biopsy to far back so he referred me to a colleague who could, 1st appointment

27th March2017 with this consultant and biopsy arranged for 29th April under a general

anaesthetic. Results in for the biopsy 7th April 2017 SCC HPV+, to far back for surgery so it will be

3 Cisplatin day 1, 22 & 44 with 7 weeks IMRT radiation. Back to the present time I see a radiation

oncologist 25th April and treatment hopefully will start around the 15th of May. I'm 241 days from

first symptoms. Checking in July 11, 2017 Now 2 weeks after treatment finished. Home in the

west of Ireland3 Cisplatin & 35 IMRT zaps T2:N1:M0 BOT HPV16+ Going back to work in just

over 2 weeks’ time, off meds and getting back to eating and tasting food again. Checking in

January 5, 2018, All Good up to now 6 months out of treatment. Eating is normal taste is 100%

back Saliva is about 90% back. No pain slight amount of mucus still nothing to bother about.

Running 60 to 70 miles a week completed a marathon in November in 3:30 (2nd overall), half

marathon next Saturday & another marathon end of March. I’ve nearly managed to get the weight

off that I put on for treatment!! Checking in February 4, 2018, All Good 32 weeks out of

treatment. No issues everything back to normal apart from the slight loss of hearing due to

Cisplatin. Running 80 plus miles a week and will race my 2nd marathon since treatment finished in

another 6 weeks’ time I'm actually quicker now than I was before I hadtreatment. Checking in

June 14, 2019, still here nearly 2 years out of treatment.

AnotherSurvivor, from Colorado. Enrolled Feb 19, 2017, Retired, 64 y.o., married to an incredibly

strong and intelligent woman. Stage III T-3, N-1, M-0 +HPV SCC confined to right tonsil. DX

10/25/16. 35 IMRT treatments with 7 Carbol/Taxol chemo treatments. First treatment

11/15/16. All treatments at Kaiser Cancer Center in Colorado. I found Kaiser to be phenomenally

effective; I would rely on them for treatment again without hesitation. My chemo and my Rad

oncologists are as good as you can find, including at places like MD Anderson, The quality of

their support staffs are perfect, the Infusion Center at Kaiser became almost a second home. On

12/07/16, after repeatedly passing out on the floor, I was admitted to emergency care in the

hospital where 3 pulmonary embolisms were discovered. Total of 10 days of in/out

hospitalizations destroyed any sense of continuity. Full treatment for my cancer continued during

my hospitalization, they wheeled me to the beam in a bed. It was hard at the time, but I finished

1 day later than originally scheduled. Sentenced to 12 months of daily subcutaneous Lovenox

injections in my belly for the embolisms. Completed cancer treatment 01/03/17. No PEG, I did

get a PICC during the first hospitalization. Started at 218 lbs., ended at 177 lbs.

Today, I just completed week 7 of post-treatment, slightly over 100 days since diagnosis. Weight

is usually +181 lbs., I consistently get down +2,000 calories, but it's pretty much just nutrition

shakes. Mixed blessing, current weight is considered a healthy weight and my vital signs say I'm

very healthy, but my muscle mass is gone, simple tasks are a challenge. Overall, everything is

improving, none-the-less my general life confidence is pretty well trashed. Some days are better

than others, but my main concerns today are dry-mouth, lack of taste, spotty sleep. Some days I

am constipated, I'm doing powdered fiber and Senna, and eventually that works. Right now I'm

simply trying to heal up my last mouth sores, figure how to deal with dry-mouth, and start

sleeping. Spring is coming, and I need to push myself to be more active. PET is still 5 weeks

out, but I feel pretty good about my odds. Overall, I feel more numb than lucky.

armana, from Texas. Enrolled January 6, 2018, 3 years 2 months post treatment for Stage III

SCC in tonsil with one lymph node, HPV+. Treatment included surgery to get the tonsil out

followed by 6 1/2 weeks of radiation but no chemo. I am doing great with the exception of some

dry mouth back to normal

Arndog64, (?). Joined forum March 2011, enrolled husband in April 18, 2011. DX’d left tongue

base tumor w/lymph node invasion on January 28, 2011. After MIA, reported back on February 5,

2013. Husband doing well but still has throat pain and teeth starting to deteriorate.

Avisemi (caregiver) from Washington, DC. Enrolled July 15, 2015. My husband was diagnosed

with Nasopharyngeal squamous cell carcinoma Stage III or IV depending on doc on Sept 2014.

Finished treatment in February of this year. First post treatment scans were NED. Next ones are

next month. One of the favorite tips I learned here: "if Jeff can do it, so can I do it".

Backachedp, from Minnesota. Joined forum October 2009, enrolled July 24, 2010. Husband DX’d

as unknown on September 29, 2009. NED May 23, 2010. MIA in 2012 and checked back in March

13, 2013. Was doing OK but with swallowing problems. Having lung issues due to aspiration. Dr

recommending feeding tube. Checked back June 22, 2013. Surgery on May 20 and

swallowing/coughing gotten worse. Also have back problems. God bless and saying a prayer for

him.

Barbaraek, (caregiver) from New York. Joined Sep 4, 2015. Diagnosed 5/26/15, NPC Stage IVa

T4N1M0, 35 radiation tx with 2 concurrent Cisplatin, currently attempting adjuvant chemo

Cisplatin + 5FU. Finished treatment September 2015 - was only able to tolerate one round of

adjuvant chemotherapy. Great news was NED on October 2015 PET scan. Will now receive regular

scans. Check in July 12, 2016, scans today are NED! Monitoring will now be every 6 months. Dry

mouth is still a big challenge, but eating is getting better, and energy is returning. Chemo port,

PEG, and all pain meds are gone...and hair is back! Diagnosed with Stage IV nasopharyngeal

tumor 5/15. Checking in, February 8th & 18th, 2019. We are still NED 3 1/2 years post, (yay!) but

have had significant complications from the radiation. The latest is bilateral vocal cord paralysis

which is affecting breathing, swallowing and speech. A tracheostomy seems to be in our very near

future. Nonetheless we still consider every day to be “icing on the cake” and just celebrated our

34th wedding anniversary.

Bart T, from New York. Joined 03-2013, enrolled 12-31-2013, DX’d 03-2012 w/tongue cancer.

Hemiglossectomy, radiation & chemo. All clear at time of enrollment and back to 100% on

activities and life style, but with minor but annoying side effects. Check in Aug 12 & 13, I recently

posted about 4 years since my last treatment, so now is as good a time as any to check in. The

short story, 4 years out, no cancer, doing everything just like before cancer, but do have a batch

of annoying side effects, mostly from the radiation. I complain a bit now and again, but very

happy to be here. Checking in May 24, 2020, Now about 8 years since I started treatment. I got

to retire and move with my wife to an over 55 community and enjoy retirement. My annoying side

effects have not resolved but got a little worse, but I’m still happy to be here.

BeagleDad from Arkansas. Enrolled and checking in October 15, 2020. Diagnosed with Stage III

tonsil cancer that went into left lymph today. So, here I am for your roll call. Awaiting biopsy to

determine if HPV related. Fingers crossed. Still investigating and figuring out this roll call, pages,

and discussions. Not real happy right now. (But not depressed or nothing ..... just

bummed)Thank you Beagledad

Bebo12249, Mississippi, Enrolled Oct 29, 2015 SCC HPV+ of the tonsil with positive lymph nodes

July 2015. Tonsillectomy followed by seven weeks rads and Cisplatin. Completed treatment on 10-

22-15. Thanks to everyone for their comments, support and knowledge. Check in, Aug 12, 2016,

Had a 10 month post treatment scan today - NED!! Checking in Feb. 18, 2017 had 16 month post

treatment scans - NED! Checking in March 2, 2019. March 1, 2019. 3-year 4 month scan was

NED and all is otherwise well. Thanks for everyone’s support. Checking in April 21, 2021.I Had my

final 5-year scans in Summer 2020... NED! No lingering effects except occasional cramping of

neck muscles at radiation site. Otherwise all is well. Never give up.. CivilMatt, thanks for all you

do and I just read about Phranne51 - so sorry..

Behindthepen, from Massachusetts. Enrolled October 26, 2016. Bottom of Tongue with metastasis

to lymph nodes. Just finished 15/33 rads and 36 chemos at MGH. Throat starting to give me

trouble, eating has become work instead of pleasure, but still playing hockey, so I'm not beat yet.

Billie67, from California. Joined forum July 2012, enrolled October 24, 2012. DX’d stage IV

laryngeal SCC with few lymph nodes. PET/CT NED on September 28, 2012. Checked in January 3,

2013. Updated 01-01-2013.

Billbo Baggins, (?) from Maine. Enrolled February 13, 2018. I have Stage IV, HPV+, I’m done

with treatments 35 radiation and 3 chemo. Wasn’t told about dep medication ression until it hit

me last week so I called the nurse and got on some for I t. Now I’m getting of my counseling and

this is part healing process from the depression. I will share my story soon.

big G from South Carolina. Enrolled Diagnosed in Aug 2018 SCC bot- I had neck dissection, with

60 plus nodes removed on both sides. Left side was clean with several positive nodes right side

noextracapsular spread. Tors surgery,33 IMRT tx. I couldn't eat solids for 2 weeks after Tors

surgery, took the rad tx fairly well except the normal lost taste buds, dry mouth, etc. I now have

about 80% taste buds back, everything healed very well, still have dry mouth and turkey neck but

getting better. I have first C-T scan of the head, neck, and chest on 3-5-19. Dry mouth, eating

well although will be 1 getting esophagus stretched soon surgeon recommendation. 12-12-19 was

my year checkup and NED!.. I am thankful for this site and wish everyone a speedy recovery.

Checking in February 15, 2020, Doing ok so far some tightness in neck ,chin area, taste back to

85% or so eating good but will be getting a throat dilation next month recommendation of my

ENT/Surgeon. Back to work a year next month. Checking in October 7, 2021 overall doing good

and thankful for this site that helped me get through it and life is good for me at the current time.

currently near 22 months since last treatment. Thanks to the fine people on this forum for

encouragement, sharing and caring. I would like to mention Phrannie51's NGU (never give up)

demeanor was an inspiration to me as well as others on this forum and she will be missed.

bild, from Nevada. Enrolled Dec 21, 2016. Diagnosed in the last days of 2015 with

Hypopharyngeal SCC. First trach and feeding tube in end of 2015, my feeding tube has just

celebrated it's first (and last) birthday. 8 cisplatin, 44 rads, then in October a

laryngopharyngectomy (I'm not proud that I can spell that). I now have a permanent trach, can't

smell anything, but I can eat and expect to lose feeding tube soon. Taste is not the same, but it's

not too bad, and this eating thing is way better than Jevity. Can't talk, but maybe soon, with a

voice implant if all goes well. Haven't had a PET scan since surgery, so I can't claim NED, but

soon, maybe. So, in 2016, 2 trachs, feeding tube, medi-port, 2 pneumonias, surgery and no food

for 12 months, but I had my cancer removed, so all-in-all, a good year!

Bjohn, from Illinois. Joined forum October 2011, enrolled January 22, 2013. Husband DX’d

w/olfactory neuroblastoma in May 2011. Recurrence in neck in May 2012. Good response and

feeling well at time of enrollment. Updated 01/22/2013

Boardwalkgirl, from Indiana, joined forum June 2012, enrolled February 10, 2013, DX’d April 26,

2012 with SCC in lymph node on side of neck. Treatment completed and clear PET scan on

October 27, 2012, Still struggling with lack of saliva and taste buds.

Bob Watt, from New Zealand. Enrolled Jul 14, 2017 Finished treatment for Tonsil, Lymph Node,

HPV+ Stage IV, 21 April. Had a rough ride for first few weeks post, but now taste buds have

returned, eating reasonably well, and dry mouth is a plague from the desert, I'm sure. Lost a bit

of weight, but heck, I'm alive, what more can one expect. Checking in October 28, 2017 d

husky voice now means I can sing as good as Lee Marvin ("I was Born Under a Wandering Star")

Bughunter (OM) From Tennessee, 2007 Stage IV tonsilar cancer. Last treated on March 28, 2007.

Bunnymom, from Illinois. checking in May 22, 20114 Tongue cancer. Starting chemo & rads June

8th. 12 week treatment plan. Thanks to everyone for their support! Checking in Sept. 22, 2016 2

years NED. Thanks to all that have been kind and supportive. Made all the difference to me.

CajunEagle, from Louisiana. Joined forum October 2009, enrolled February 3, 2010, DX’d Stage

IV, left tonsilar cancer in 2009. Enrolled on February 3, 2010. Reported back in March 7, 2013 and

still doing well. Checked in January 6, 2013. Checking in Jan 14, 2014 and doing quite well.

Thanks to all. Checking in Aug 17, 2015 After 6 years post treatment…I’m still around. Thank

you. Checking in Jan 2, 2016, Coming up on my 7th year since treatment.for cancer. Doing well

in that regard. Underwent 3 full-blown surgeries for intermediate Melanoma on my right ear

(between lobe and sideburn) in February, 2015. After reconstruction of ear area, all is well except

for numbness in that ear area. Currently undergoing 30 dives of Hyperbaric Oxygen treatment for

removal of a molar on my left lower side. 20 prior to extraction, and 10 after. Extraction was 8

days ago with absolutely no pain, and I have only 3 dives remaining. All this due to radiation

from 7 years ago. Each session of HBO has a duration of two hours per day. Takes one heck of a

commitment. Check in July 11, 2016, After all the other stuff I've been through up to this point,

on May,12th 2016, I was informed that I had a re-occurrence of Melanoma in my right ear area.

Long story--short, I lost my entire right ear and ear canal. I now have a flap over that area that

was taken from my right thigh. Surgery was 14 hours long with a team of 3 of the best on this

earth. Eight days in ICU. SOBs tried to say I was aspirating and placed a feeding tube through

my nasal passages to my stomach. Wanted me to intake Jevity....which I did for 3 days at home.

They wouldn't release me till I agreed. Surgeon from 09' stepped in and removed it and gave em

hell. New side effects...1) Droopy right eye ( to be fixed Aug.12th). 2) Nerve damage to right

side of mouth. It "may" return to normal over time. 3) Very sore right lower jaw and burning

around throat and former right ear area. 4) And back to slow eating issues. Only been a month

and a half, but I'm ready to get this over.

Cardoza33, from California. Enrolled June 26, 2016. Age 45. Diagnosed Nov. 23, 2015 w/ SCC

Tonsil Stage IV. Two cisplatin and 6 weeks of rads. finished treatment Feb. 3, 2016. In May I had

first NED scan. Feeling good. Eating is a chore, ringing in my ears and some nerve issues, but

otherwise feeling good and happy. Checking in May 15, 2017, Vastly improved over last time I

checked in. No complaints back to100%

caregiverwife (?) Enrolled February 3, 2019. Help, CivilMatt needs more information to do this

H&N member justice.

Carolinagal4, from North Carolina. Enrolled July 26, 2015 diagnosed Stage IV SCC of the tongue

(side of tongue) with lymph node involvement in April 2015. Finishing up 35 radiation treatments

with concurrent chemo (Cisplatin) now--one more week to go! The cancer has shrunk

considerably so far and I am hopeful that it will continue to shrink (if so, I may avoid surgery).

This site has so much great info and people on it--I feel lucky to have found it! thanks so much to

everyone who takes the time to reply--You make a difference! Checking in Jan 18, 2016,

Unfortunately, PET scan revealed that my cancer was the aggressive type that had grown back. I

had sub-total glossectomy and selective neck dissection in November 2015. Currently dealing with

dry mouth, sore throat--hopefully these will be temporary. Since I lost my entire oral tongue (the

part that moves) and was only left with the base of tongue, I have very limited mobility with the

flap that replaced my tongue (from my arm). Some days, I can speak well enough to be

understood although it always sounds like I have a mouth full of something, other days my voice

is so hoarse that I can barely make a sound--this seems to be related to the dry mouth and sore

throat issues. I have not been able to resume eating and survive on a peg tube. I am also having

difficulty drinking, although this seems to be improving and I am in swallow therapy. I do have

lymphoedema in neck and massage is helping.

catfish_58, from Texas. Joined forum February 2013, enrolled July 30, 2013. DX’d SCC left tonsil,

HPV+ Stage III. 33rads and 7 weekly chemo's of Cisplatin, Started treatment in 2-25-2013.

Treatment completed April 20, 2013 and scheduled for PET on July 31st. Am 9 months post now,

Saliva very little, taste almost back to normal. Check in Jan 13, 2014. Checking in May 20, 2016.

just checking in and doing pretty good, Thanks to al l members of CSN for the words of

encouragement and all info. Checking in January 15. 2020 Checking in, Sorry to hear about the

losses, Especially Phrannie51, helped me out numerous times, Update on treatments am taking

Keytruda for Stage IV tongue cancer, seems to be keeping it at bay, not shrinking but not growing

or spreading, hope everyone had a great year, take care

Catluver96 (?) Jan 15, 2014, Diagnosed July 2012. Tongue cancer Stage III. Radical neck

dissection. 1/3 of tongue removed. Skin graft from thigh for side of tongue. Chemo (Cisplatin) and

33 rads started October 1, 2012 finished November 15, 2012. Doing well. Eating good, have most

of taste back. Read forum often. Best wishes to all.

CatPerson (?) Enrolled February 4, 2018, Hey folks, New to the boards and hope to see you all

periodically. I'm newly diagnosed with olfactory neuroblastoma as of December 2017 and have yet

to receive radiation. Currently awaiting 2nd surgery to remove hopefully all of the mass as the 1st

surgery was mostly for diagnostic purposes. Also awaiting another CT scan of neck to see if it's

metastasized. Well wishes to all. Peace and long life.

CathyHorner, from Tennessee. Joined 11-2013, enrolled 12-29-2013. DX’d Stage III, Laryngeal

cancer in June 2013. Clear pet scan in 11-2013. Need trachea for breathing and difficulty

speaking.

Charlize, Alberta (?)

CherieLW, from Ohio. Joined forum May 2010, enrolled dad on June 4, 2013. DX’d cancer of

sinus w/one affected lymph node. Undergoing treatment at time of enrollment.

Chillg8r (?) from North Carolina. Joined the H&N forum on July 8, 2021. Included in the Roll Call

on October 29, 2021. I was diagnosed in January 2021 by an ENT at UNC hospital while

investigating swelling in my jaw, just below my right ear. 7 weeks of daily radiation and weekly

chemotherapy. My wife has taken all of the communication with friends and family on, very

helpful. I’ve learned that I can handle very tough treatments but that nothing is guaranteed.

Christmas (OM) from California. Joined forum May 2005, enrolled July 8, 2008. DX’d NPC

Nasopharyngeal in 2004. had been absent but back in. Last check in July 14, 2013 and life has

been good. Dealing w/problems and completed 10 years from DX. Checking in May 21, 2014

Sorry I missed the roll call. I have been very busy with work. Lots of demands and deadlines

requiring 12 hour days. Can't complain except that I don't have much time for anything else.

Good news to share - I have a new grandson who is now four month old. Unfortunately, he lives a

six hour drive away. It's been nearly eleven years since my diagnosis. I feel very fortunate. Very

minor complaint - dry mouth an issue because people have difficulty understanding my speech.

Still no other meds aside from a low dosage of synthroid. Lots of infections - eye, bladder. Lots

of dental problems. Other than that life is GOOD! Just getting older. Checking in, September 21,

2016, Sorry, have been too busy to check in. Grandchild #2 arrived a month ago. Still working

long days. Health good except for more dental problems. Checking in May 25, 2017, The

adventure continues. Focusing on dental care and dental work. I had the hyperbaric treatments

in December and had two lower right molars removed with no problems. Now I have to look into

lower left molars. The problem is NO saliva or bad saliva, so there is no good bacteria to keep my

teeth healthy. I now have a referral to see a dental specialist/oral surgeon at Stanford Medical

Center. The appointment is several weeks ago. Staying healthy-14 years since my NPC

treatment...Best to all! Checking February 21, 2018, Everything is fine, but still having lots of

dental work. The teeth are going fast! Good thing that I can still work to pay all those dental

bills. Fourteen year survivor! Checking in January 18, 2021. Hi! Wishing everyone a wonderful

2021! I'm a sixteen year NPC survivor still spending most of my money on dental work. Despite

the pandemic, I am fortunate that I get to enjoy a new granddaughter who was born in June.

Wishing everyone a safe and healthy new year! Christmas

Chriswick, (?) Enrolled and checked in September 4. 2020, DX Submandibular Nodule, Going

through implant surgery and got a boil/infection in gum on right side rear mandible from implant

removal closer to the front. ENT says it may have been from novacaine injection. Went to ENT -

he sent me for CT scan and ultrasound. A 1.5 cm nodule was incidentally discovered in the

submandibular triangle on the left. I have had extensive reconstructive dental surgery meaning

crowns and root canals which lasted 20+ years until they started leaking and abscessing. Biopsy

was done this week. Three good samples although ENT was worried about them really being able

to get into node. ENT office secretary called today and sounded anxious saying he wants to see

you Tuesday AM. Now I will be freaking out all weekend. Was wondering if this could be from all

the extensive dental procedures or something more? No other symptoms with this.

Chucka21, from Kentucky, joined forum April 2013, enrolled May 21, 2013. DX’d February 21,

2013 w/SCC unknown primary. Modified neck dissection March 5, 2013. Tonsillectomy April 14,

2013. Undergoing radiation at time of enrollment.

cid817 caregiver to husband, from Virginia. Enrolled July 24, 2015 Husband was diagnosed August

2013 – SCC of epiglottis with 2 lymph nodes, Stage 4b - HPV negative. Completed treatment end

of November 2013 – 35 rads, weekly cisplatin (6 total), no surgery. Did our research and 3

consults before treatment. Walter Reed suggested surgery to remove epiglottis along with the

tumor and put in a temporary trachea tube, then chemo and rads. Was told that the rads would

destroy epiglottis and that is why they would remove it. Local ENT suggested chemo and rads, no

surgery. Local radiologist was furious that we were told rads would destroy epiglottis; said they

were trying to save it, not destroy it. Went with local ENT, radiologist and oncologist. Were

shocked with the differing opinions of treatment! Here we are, almost 2 years later, NED. Second

PET scan will be in November. Issues with dry mouth and taste, some swallowing/slight choking

issues, occasional flair ups of the radiation site. Every day is a gift. Checking in July 28, 2017

Coming up on 4 years, doing well. Trying to encourage hubby to retire so we can travel in our

motorhome....Donfoo, maybe our paths will cross on the road or in a campground... Checking in,

March 11, 2019. Hubby NED as of November 2018 PET scan. The 5 year mark! YAY!!!! Still having

swallow issues. Doc did throat stretching and Botox in spring of 2018, but the botox did not work

well which caused more swallow issues. Once the Botox wore off after a few months, things got a

little better. Life is great! Hubby just retired and we are getting ready to cruise the USA in our new

motorhome. Positive thoughts and prayers to all.

CivilMatt, Oregon, enrolled October 22, 2012. DX December 23, 2011 w/Stage IVa, SCC, BOT,

HPV+ & l lymph node on left side of neck (surgery, radiation & Erbitux). 660 days post, lost 43

lbs, gained 20 lbs, saliva, dry mouth and taste challenged. I am on the standard H&N plan

seeking maximum recovery. I see life differently now, wonder and tragedy are but a heartbeat

away. My H&N friends help keep me grounded. You are all special in your own way. Time is

precious. Checked in January 19, 2013. Check in January 12, 2014, Check in July 13, 2015.

Checking in Jan 1. 2016 All is nice in my new-normal world, eating is a cautious and very

enjoyable. Trying very hard to maintain a strong immune system. Lots to do. Checking in Jan

30, 2017, coming up on 5 years in March. That is a number I have been waiting for. Thank you

to H&N members for all you do. Checking in January 1, 2018, life is good, but it challenges me

daily. The cancer which brought me here is gone, but other bad things are out there. Checking

in on June 1, 2019. I am still here and kicking with 7y 2m 8d (post) under my belt on my cancer.

I really wanted to go and have my tongue “looked at” by my ENT, but I have not. I don’t think

there is truly anything wrong, but I do have a heck of a time trying to keep my tongue clean. I

brush with 3d tooth paste, rinse with bubble gum mouthwash and use a full glass of the good ole

soda and salt mixture to rinse and gargle till I am blue-in-the-face, trying to get my tongue clean.

I like to snack on popcorn in the evening and it really messes up my tongue. By the way, I have

liked popcorn since (almost) the start of my post cancer time. My life in Oregon is pretty good. I

am retired now and working on home projects and such. I would have met Phrannie51 last

summer, but she did not call me and say she was in town. Woe is me, maybe next time we will

get together. Everyone, please take care. Checking in January 23, 2021, I am still above ground,

but I sometimes wonder about my life. I do have issues which drag me down, but cancer is not

one of them. I will talk to you later. On December 4, 2021 CM says, “I am about to go online with

our revised Roll Call and I hope the members like it. I will tell more later, when I get brave

enough to talk.

CJK from Pennsylvania Joined June 5, 2017 Hello. I am a head and neck cancer survivor from

Pennsylvania and I just joined this forum. I was diagnosed with Stage IV squamous cell

carcinoma (HPV+) in June 2016. The primary tumor was in the right tonsil and I had metastases

to 15 lymph nodes in my right neck. I had a neck dissection to remove 41 lymph nodes in July

followed by robotic surgery to remove my tumor along with my left tonsil and a retropharyngeal

lymph node in the back of my mouth. The surgeries were successful but, during the neck

dissection, they found that one of the lymph nodes was attached to the accessory nerve to my

trapezius muscle. They cut the nerve and did a nerve graft using a sensory nerve to my ear area,

which helped to return some functionality to my shoulder but also resulted in extensive and

prolonged numbness in the side of my face/neck. In Sep/Oct 2016, I had 7 weeks of

chemoradiation (35 radiation treatments and weekly Cisplatin). During treatment, they saw

another lump at the tail of my parotid gland so used a very high dose of radiation to the area.

Overall, I recovered fairly quickly from the treatments other than pain from my shoulder and

residual pain around my right jaw where the high dose of radiation was supplied. My 6-month

post-treatment scan was clear, although the lump on my parotid gland is still present but not

active cancer according to the PET scan. I would be happy to provide more info on my experience

or thoughts on treatment options and I would welcome any insights from others who had a nerve

graft to their trapezius muscle or very high doses of radiation to the jaw area with residual effects.

My best wishes go to all of you as you continue your fight and I look forward to contributing to the

forum.

CLRRN, from Maryland, joined forum June 2010, enrolled July 13, 2010. Reporting for partner

Mike. DX’d SCC left tonsillar basaloid. Checked in August 7, 2011. MIA and checked back in June

3, 2013. Reported good news…some ailments but NED. Checking in Jan 8, 2016, I joined when

my partner Mike was dx w/Stage IV, SCC tonsil in 2010. He remained NED and doing great. He

had all his teeth extracted (what he had left) in 2014 and got full dentures. Aside from his

hoarseness and has no complaints. Forever grateful to everyone for the support to me and all the

helpful hints/suggestions to allow me to be a better caretaker.

Connieprice1 (?) Enrolled Nov 8, 2015 Stage IV BOT with 2 lymph nodes involved HPV+

Completed Chemo & 35 Radiation treatment 4/2011. So far so good! Please add to survivor list. I

was sorry to read that some of my good friends had not survived. Some I communicated with

directly and some I always read their posts. To: Barefoot Bob, Delnative, Jim and I, luv4lacrosse,

To be Golden, Wolfen and Trinks May you All Rest in Peace and that Heaven is Everything we

dream it to be. To Everyone that has lost a loved one here, I pray for the caretakers and families.

Corleone, from Ontario, Canada. Joined forum July 2012, enrolled February 1, 2013. DX’d NPC

Stage III on June 14, 2012. Treatment completed December 1, 2012. Check-in July 10, 2015, on

14-Jun-2012 ,Last checkup May 2015, complete remission. Corleone: I made Cancer an offer it

can’t refuse

Crazymom, (?) Checking in Sep 8, 2015 I had left tonsil and two left lymph nodes. I have been

cancer free for 3.5 years. I am doing well and enjoying life. Checking in March 11, 2017. Five

years Out Just checking in...FEb 2017 got my CT scan and all is good. I am feeling good and am

happy. Had to start on thyroid medication because of fatigue and hyper thyroidism, but now seem

to have that under control and feel good.

CSmiley, from Arizona. enrolled April 30,2017 Diagnosed 3 February, 2017 w/ Stage III SCC

(moderately differentiated) BOT (HPV-) Pre Surgery Staging - T1N1M0. One tumor, BOT, left

side/center, 2 cm in diameter. Initially... one lymph node found, region III/IV, 2 cm, & necrotic.

Surgery completed on April 12, 2017: radical, bilateral neck dissection and partial glossectomy.

Post op pathology report indicates negative (good) margins from the tumor removal. 84 lymph

nodes removed, 3 tested positive (left side) for SCC (no extranodal extension). Post Surgery

Staging - Stage IVa (T1N2bM0). Follow-up treatment (begins 15 May, 2017). Chemotherapy

(Cisplatin) 6 treatments (once a week for 6 weeks). Radiation, 30 treatments (5 treatments a

week for 6 weeks). So far, lymphedema is really bad. Tongue has healed well, but I have lost the

ability to enunciate my words and eat without biting myself and/or loosing my food within my

mouth.I am active duty military (17 years) (United States Air Force). I'm more than happy to

share with others my experience. Checking in January 27, 2018, Life is getting back to normal. I

am seeing a physical therapist twice a week for scar tissue and lymphatic message. I also recently

began using a Tactile Medical lymphedema message unit designed for the head and neck. The

battle against dry mouth and neck fibrosis is on-going. The ringing in my ears has lessened, but

not yet completely gone. I am still an active participant in a medical drug trial, which requires me

to receive a single round of chemo every three months. The chemo has a way of taking me back

to when I was at my worst. My most recent scan came back clean. I am disease free as of now. I

am still pending a medical review in the military. I do not know yet if I will be forced to medically

retire or continue my pursuit towards my twenty-year goal. Good luck, and God Bless!

Cureitall66, (caregiver to husband) from Michigan. Joined 12-2012, enrolled loved one on October

23, 2012. DX’d on August 21, 2012 w/Stage IV, SCC, BOT, HPV=, 1 lymph node n left side of nect.

Still undergoing treatment at time of enrollment. Tx ended Nov 2012 No surgery, Chemo

(Carboplatin & Paclitaxel) once wk for 7 wks, Radiation 5 days wk for 7 wks Reported back 12-30-

2013 that NED after treatment. Doing well w/minor issues. Checking in July 20,2015 Latest

check up 07/16/2015 – NED. Back to Golfing and riding his Harley! Enjoying Life! Checking in

November 16, 2017 Hi All! Sorry not on here much anymore. Wanted to let you know we just met

his 5 year mark this month and was told he is now considered cured! Life has been very good for

us. We've done a great deal of riding the Harley this summer and when he's not riding, he's on

the golf course! I wish you all the best! Checking in February 28, 2019 It has been 7 yrs NED! He

still continues to get check-ups just for peace of mind. He is doing great and there is nothing that

stops him these days. We enjoy riding the Harley, he loves to golf, and we are currently buying a

different home and he's doing most of the remodeling. Life is good. I'm sorry we are not on here

much anymore. I am currently preparing for RN nursing clinical at the age of 53, my prerequisite

are done after 4 yrs. of school. We're super excited for this next adventure. Love you guys!

CivilMatt

Curlyn (?) Enrolled February 12, 2018, Hi All, I joined Sept 11, 2017. Stage lll, HPV+, BOT

primary (less than .19") with mets to lymph nodes in neck. Surgery and chemoradiation. After a

year of watching had the neck surgery, BOT surgery a month later, 8 wks later the

chemoradiation. 13 wks since treatment. Worst 17 months of my life! Will life get better? Who

knows, I am not going to sit around to find out because enough time has been wasted. Going to

meet it head on. Best of luck to all of you!

Cwcad (?) Joined forum November 2009, enrolled January 31, 2010, state unknown, checked in

01-31-2010, DX’d Stage IV BOT in February 2007. MIA list and checked back in on February 10,

2013. Neck spasms irritating, but not bothersome. Had heart bypass surgery. Doing well.

6Cyn (?) caregiver for Husband Enrolled Aug 7, 2015 He was diagnosed in August 2013 with stage

IV Head and Neck cancer, left tonsil and three lymph nodes on same side. 35 rad treatments and

3 cisplatin’s did the trick. This site is a wonderful support and full of information. Thanks to all His

words, "Hold on tight and do the fight!"

Cyfont from SE Texas. Enrolled December 24, 2019. Developed a lump on left side of neck and

sore throat. As a teacher, I wasn't too concerned because i routinely come down with various

bugs. Early November 2018, I went to my MD for a medication recheck. She immediately noticed

the lump and sent me to get an Ultrasound. The Monday before Thanksgiving 2018, I had the

Ultrasound and was told not to expect results until after Thanksgiving. Well, on Wednesday, I

received a call saying it was suspicious. My MD referred me to an ENT. In December 2018 I was

scoped and then set up for needle biopsy. Right before Christmas 2018, I was dx with stage IV

Oropharyngeal Cancer, HPV16 on the left side. I was scheduled for surgery to do a tonsillectomy

and remove lymph nodes on 12/26/18. I came out of operating room and was able to go home.

They chose not to do tonsillectomy and took tissue biopsy instead. The following day I found out

my insurance does not cover IP for the hospital where I was treated!!! So, I basically had to

scramble and find a new ENT who worked out of a hospital that was covered on my insurance.

Thankfully, a ENT whom I set up an appointment with called me the morning of my appointment

and told me my case was too complicated for her. She recommended an ENT she went to school

with. I called and explained my situation and was able to get an appointment the next week. This

ENT was a Godsend! He decided to do a Neck Dissection, place a chemo port, feeding tube and I

had teeth removed. On 2/6/19 I awoke in the recovery room and as I felt the left side of my neck,

I panicked. There was still my tumor.I thought maybe they went in their and thought there was

nothing they could do! I was kept overnight for observation, NPO. My ENT decided against neck

dissection and opted for me to do chemo and radiation. I had 3 Cisplatin chemos and 35 radiation

treatments. I had sever burns and mucous with my radiation, and my chemo treatments left me

with a dx of CKD stage 3 and anemia. When I was first diagnosed 12/6/18 , I weighed 307

pounds. I had a lot of trouble eating and with my peg tube. As of today, 12/24/19 I weigh 195!

This part of my cancer battle has been a blessing! In November, I had a CT scan and it showed

fluid, scar tissue and dead cancer cells. My ENT said I could wait another 3 months and see if

there is change or go ahead and have a Neck Dissection and not have everything removed and

have peace of mind. I asked my ENT if I was his sister what would he recommend? He said,

surgery. 12/10/19 I had a modified neck dissection in which 20 lymph nodes were removed. I had

a drain inserted and stayed 2 days in hospital. I developed a Chyle Leak. This is a milky fluid that

becomes discharged. It is pretty uncommon, but can happen especially on the left side and when

you have been radiated prior to surgery. The Thoracic Duct is damaged and that's where the leak

is from. On my 1 week post op visit, ENT removed the drain tube and placed me on a 2 week Fat

free diet. This has been challenging, but considering the gift of a pathology of "no active cancer" it

is worth it! Merry Christmas to all and a healthier new year!

Dagney1 (?) Hello, I'm. Glad I found this forum. There years ago my dentist saw a lesion under

my tongue and told me I should have it checked out. I immediately went to an ENT and the

biopsy came back benign. I went back every nine months, he looked at it, and said it looked ok,

until June. Had another biopsy and it was no longer benign. I had a hard time finding a doctor

that would excise it and take my insurance but finally found one in Abilene. So I had it excised

and believed I was done. The two week checkup there was more cancer cells. He sent me to a

radiologist. The radiologist explained the awful side effects and said since my cancer was so early

stage surgery would be my best option. Here I thought radiation would be like having a few

exrays and the cancer was gone, pain free! So I had my surgery October 15, and opted to have

some lymph nodes removed in case the cancer returned. I had no idea how bad the side effects

are! And the doctors keep telling me I'm doing better than most. They did find a few more cells

under my tongue I had removed yesterday. I had just gotten to where I could eat a hamburger.

But hopefully I can eat pain free on Thanksgiving. I'm thankful I can still eat and not have a

feeding tube. I found this forum while I was still in the hospital. And reading the posts here has

put my problems in perspective and given me encouragement. And I have gotten a crash course

on how ugly cancer is.

Daisynbax from Florida. Enrolled October 30, 2016, I was diagnosed with SCC (lateral tongue) on

Wednesday. I go for my consultation at Moffitt on Nov. 9. Since I am just at the beginning of this

road, I am basically absorbing as much information as I can.

DarcyS (caregiver) from Michigan. Enrolled in H&N forum in October 2015. Joined RC 2019.

Diagnosed in June 2012 with Piriform sinus cancer with 2 lymph nodes, stage iv. 6 weeks

chemotherapy with Taxol, cisplatin and cetexamaub. Clinical study with everolimous. 50 radiation

treatments with imrt, inpatient with concurrent chemo, 5fu, taxol and hydrea. 3+ year NED.

Checking in February 10, 2019 My husband just had his 6+ year checkup and all is well. Life is

good with minimal side effects. His diagnosis in 2012 as a non-smoking 55 year old: stage 4 ssc

of the piriform sinus with 2 lymph nodes affected. T1N2bM0. His treatment included 6 weeks of

chemo followed by 10 weeks of inpatient radiation and concurrent chemo, alternating weeks on

and off. We're still here and thankful for all of you. Checking in October 22, 2019 (Life’s good)

7+ years and my husband is still doing great! We're enjoying life and wish you all health and

happiness. Thanks for all the great advice and support! Checking in October 6, 2020, 8+ years

after my husband's diagnosis of Stage IV ssc of the pyriform sinus. We're enjoying life with

minimal side effects. Thanks to all for great advice and support! Checking in December 12, 2021,

9+ years after treatment for stage IV SCC of the piriform sinus my husband continues to enjoy life

with minimal side effects.

Dave K from Illinois. Joined and checked in on March 8, 2019 Hello. I'm new, but old. Will be 10

years since last Rad. session come the 1st week in April for Stage III NPC w/unknown Primary.

Noticed the two lymph nodes protruding from left side of neck a couple weeks before I turned 54

in 2008...then the diagnosis w/scans and wait...then the concurrent Cisplatin Chemo and Rads in

20 places/session x31, followed by only 5 places the last 4 sessions...And just turned 64 late last

November without any return bouts with C! Forum helped me a lot way back when, with

Delnative's advice on mouth and teeth issues, for instance, and Sweetblood22 when she was

active. So, knowing how this Roll Call works, though I be old, consider me enrollled as of now.

And, for everyone in difficult time of tx, and wondering if you'll make it; or, to those just

diagnosed- Believe you can and will survive. There are many who have survived H&N years longer

than I have, and so will you...Believe. Checking in December 12, 2019, Aspiration, due to Rad

damage at base of throat and scar tissue around esophagus aperture and failed swallowing test,

made installation of a permanent G-tube necessary on 8/6/19- 10+ years after my last Rad

session. ENT Dr. scoped my throat and said, "I see scar tissue everywhere." Got 68Gys at base of

throat and 60 up to chin. Just turned 65, and never to use my teeth to eat again, or drink using

the mouth.

dfs56, from NY. Enrolling November 28, 2017, Had surgery for what was believed to be a polyp,

but turned out to be an olfactory neuroblastoma in Sept 2014. Came back and resection was done

in May 2016. Returned and resection done Aug 2017. Will begin IMRT on Dec 7th for 30 sessions.

Hoping and praying for positive results for myself and for all on this site

D Lewis from California, joined forum January 2010, enrolled February 5, 2010. DX SCC base on

tongue, January, 2010, checked in July 23, 2010. . PET-CT NED in October 2011. No snot, no spit,

no tears, but otherwise living life to the fullest and having a great time. Updated 02-01-2013.

Check in Jan 17, 2014 Still hanging in there. It will be four years from end of treatment in May

of 2014. No snot, spit, tears; impaired taste; still got teeth; starting to have some minor issues

with radiation-induced cataracts, and radiation-induced fibrosis in neck muscles and lungs. Still

living life to the fullest and trying not to sweat the small stuff. Damned glad to be here. Damned

glad you are all still here as well. Checking in Aug 16, 2015 I passed the 5-year milestone in

May 2015! Side effects continue unabated for me, but it beats the alternative. Still alive, grateful

to be here and loving life! Thank you all for being here. Checking in Jan 18, 2016, I passed the 5

1/2-year milestone in December 2015! Side effects continue unabated for me, no snot, no spit,

no tears, but it beats the alternative. Still alive, still got teeth (mostly), grateful to be here and

loving life! Thank you all for being here. Checking in January 15, 2018, Still Here! Still doing well!

I'm still working and playing in the Sierra foothills of California. Still healthy, with no recurrances,

but a few long-term side effects, as we all have. I hope everyone here has a happy and healthy

2018!

DaveJay, Geneva, Switzerland, joined 12-2013, enrolled 12-28-2013. DX’d Nov 2013 lingual tonsil

spread to left lymph node. Surgery completed; Radiation/Chemo to start in January 2014.

Dazey, from New York. Enrolled January 31, 2010. DX’d SCC unknown primary in summer 2009.

Finished treatment end of October 2009. Checked in October 23, 2012 and all remains clear NED!

Checked in February 1, 2013 and NED continues. Check in Jan 17, 2014 Very pleased to report I

continue with NED. Have had some interesting late blooming side effects (starting about 9

months ago) no sense of taste or smell; there is occasional swallowing difficulties and have had

some dental issues but overall, doing very well and very happy to be able to check in here each

year. No matter what, it is a blessing to be still here. Peace to all. Checking in Aug 17, 2015 Dx

6 years ago, tx finished the end of 10/09. NED continues (hooray), side effects continue(yuck),

but doing, really, really, really well! Many thanks for continuing this thread. Check in July 29,

2016, It has been seven years since diagnosis. Wow, what a journey! I am doing very well with

no recurrences. I do have annoying post treatment issues that are a constant reminder of this

journey. I completed my treatment the end of October 2009. I am very grateful for all I have

and can live with the post treatment issues. I have major dental issues since tx. - Full upper

and we are working on the best pathway for lowers this month. I occasionally have difficulty

chewing and swallowing - absolutely nothing y! Food is definitely not a highlight which is okay

since I can no longer smell or taste. The only thing I can actually smell is Pine Sol........my house

is really clean! After testing, the neurologist was unable to find out a reason for these losses and

told me I just have bad luck. I prefer to think I have great luck and am very happy to have

survived the dx and tx. Good wishes for all who are starting this path and those that are looking

back on the journey. Checking in December 14, 2017 Very delighted to be able to update that I

am still free and clear since the end of October 2009. Eight years since treatment, living with

some side effects, but nothing that keeps me from living life! Best wishes for all who continue on

this challenging journey. Good days and bad days, but so happy that I have days! Checking in,

March 31, 2019, Very pleased to say I am still here, doing well, and continued NED. I was

diagnosed and treated the end of 2009, so the end of this October will be 10 years. Best wishes

go to all who are struggling with this disease. There is hope, no matter what!

debbie10, from Britsh Columbia. Enrolled February 3, 2019 Dx’d tonsil cancer. Treatments

started on July- Aug 2017..had a tough time with side effects, feeding tube, and getting on with

life in general. Hard to believe it's been almost two years! Still can't shake this feeling of waiting

for the other shoe to drop! Checking in October 11, 2020. Hi CivilMatt. I am still here! 3 yrs and

still have annoying side effects, but nothing that stops me from enjoying life. Take care everyone

Debbie10

Debi16043 (?), enrolled November 13, 2016. Scc gum cancer spread to mandible diagnosed

2011. I had 16 hour surgery MD Anderson. Removal of all teeth, and scc gum cancer that spread

to mandible. Stage IV. Had 8 implants put in, free flap fibula to create new jaw bone. Radiation.

Removal of 72 lymph nodes onone side. Staging was T4, N0, M0. Radiation complications to date

include carotid artery stenosis but still working and killed thyroid so i take meds for that. Recovery

went well but 3 years after initial surgery an xray found new jaw bone, fibula free flap, as well as

titanium plate had broken in 2 places. Advised to redo surgery. Sept 7, 2016 i went thru same

surgery again at MD Anderson this time using my other fibula. after week in hospital, one month

with feeding tube... not even a drink of water for a month im finally recovering. Its been 2

months and feeding tube is removed along with my trach... my leg wound from fibula removal

hasnt completely closed but im riding my bicycle again... im out and about attending football

games.. leg is still sore.. not much feeling in top of foot or jaw. This time they replaced from

under my right ear to one inch past chin, a large area.... feel free to ask me any questions. I’m

not on here much but you can email me at debi16043@gmail.com with questions or if you want

me to text a picture of what i look like after 1st surgery in 2011 and now following 2nd surgery in

Sept 2016.

debbiejeanne, Ohio, joined forum January 2010, enrolled July 11, 2010. DX’d larynx cancer in

August 2009. Cancer returned in February 2,2012. Last check in June 23, 2013-doing well and

NED in October 2012. Follow-up on 12-31-2013 on swallowing problem and nerve damage on left

arm. Checking in July 26, 2015 It is a very rough road but its a fight you can win!! Hang tough!

Check in Sep 2, 2016 still alive and doing ok for the most part. No health problems except

depression. Somedays worse than others. This is a great place to be so if you've found your way

here, you're in good hands. I don't check in much anymore but the people on this site are always

in my prayers, even if i don't know you. God bless you and make you cancer free!!! Checking in

February 28, 2019 Debbie Jeanne, doing well. 7 yrs. cancer free TODAY!! yay me. 8/2009

Larynx cancer. 35 rads no chemo. 2/2012, cancer came back. total laryngectomy. very rough

road for the next 3 yrs. but today I’m happy to say, I am doing great. Like you, i still have many

side effects, and i stretch my throat myself every other day to keep me able to eat. Wow, it has

been too long since I've been here. I see all the names i recognize and I realize what I’ve been

missing, my friends!! So to those who know me, it is so good to see you again. To the others, let

me introduce myself, I'm Debbie and i look forward to getting to know each of you but i''m sorry

you need to be here. God bless you all. Man, it is GREAT to be back!! Thank you CivilMatt!!

Checking in December 30, 2019, hi, I am checking in. I live in the condo complex where i used to

feed the stray cats until someone reported me and i was told to stop immediately. Oh, such is

life. I will be 8 yrs cancer free on 2/28/20. Happy new year all!!

Denistd (?) Enrolled Nov 2. 2015 Diagnosed March 2009 with stage III larynx cancer, had 35 IMRT

blasts and 3 cisplatin Hi dose chemo. Told by ENT in July of 2014 he considered my larynx cancer

cured, not having any problems with it, saliva good, did lose my teeth and thyroid croaked but all

is well. Still under active surveillance for prostate cancer, have been since June 2013, cancer is

stage one and has not grown at all in two years. Denistd. Checking in April 3, 2019, Still Here,

had a radical cystectomy last November, not for cancer but bladder quit, took out prostate as well.

Doing good right now.

Dennis (?) from Kansas, Something is missing, but not a bad post. Joined on January 23, (?back

to the new normal. It has been a real fight but it is worth it as I can enjoy life again, so if your

new and having problems the people on this site will do their best to help you.

Dlygoblue, from Texas, Joined forum March 2012, enrolled March 8, 2013. DX’d Olfactory

Neuroblastoma in May 2011. Living cancer free.

Ditto1, (?). Joined forum March 2012. Posted on February 4, 2013 that it is almost one year since

DX’d. Still here. DX with Base of Tongue stage 4 in March 2012. Chemo and Rads, no feeding

tube. Kansas. I agree this site got me thru the treatments, along with God and my wife. Not

sure what we would have done without it. Check in July 14, 2015. Checking -in Jan 8, 2016, still

here.

Dolphinswa (?) Joined October 18, 2019 I had my two year anniversary (nasalphrengeal) in

September too! I don't like sweets as well especially my old all-time favorite ice-cream like you.

I've gained 36 pounds and actually have no need to gain the last 26 pounds because I'm now

officially overweight by a couple of pounds. LOL, I went back to work last year but decided to

retire because I no longer had the energy to teach 24 Kinder babies. I live in the land of leisure

but bored out of my mind. So what do I decide to do? Volunteer to help teach 24 Kinder! I have

many side effects but as long as I stay in remission, won't complain. I'm just so appreciative that

I'm still here to support my children who aren't quite cooked yet. Gotta gnet the last one out of

college. Blessings to everyone.

Donfoo, from California, joined forum December 2012, Enrolled in RC January 2014. Posted in

2013 Roll Call. DX’d BOT SCC T2N2bMx, Stage IVa, HPV+, multiple nodes, one tooth out. Tumor

board-induction TPF (3 cycles), seq CRT Apr-June 2013. Fully recovered after six months and

feeling great. Checking in July 29, 2015just crossed two years post tx. Overall in better shape

mentally and physical than before. Got tight muscles in the neck and my head sweats now when

eating hot stuff. Just hope the long-term side effects stay far away. Checking in February 28,

2016. March 2016 - Last visit with ENT moved check ins to 6 months, a good sign. Also confirmed

that my BOT HPV+ diagnosis puts me at 3 years out past the main worry about recurrence.

Whew!!!! Tight neck muscles still a near daily issue. Big improvement on eating "hot". Yippee.

back to tolerance for hot - Love it. Still getting head sweats on hot-hot but not bad. All in all -

everyday, thank God for good fortune! Don. Check in Aug. 29, 2016, doing fine at 3 years post.

Crossed the 3 year post mark in June 2016. Doing great and living large every day! Checking in

July 2017 - 4 years post June 2017. Fibrosis in the neck still a pain in the neck. Otherwise, still

doing great and living large every day! Bought a motor home and taking some trips. Checking in

July 16, 2018 (5 years NED – cured!) Passed the 5 years post early June 2018. NED so all good.

New normal = old normal except for one long term side effect. That is, tightness along the neck

muscle from ear, through jaw, to shoulder on side where radiated. Regular neck stretching and

jawing (big yawns) settles things down. Enjoy every single day, never take today or tomorrow for

granted. Life is great! Checking in February 24, 2019 Passed 5 years last summer. Nothing has

changed except older. Very thankful that I'm living well, enjoying life each day, no meds, and

the only long term side effect is the fibrosis in the neck and jaw area. Even thyroid seems to be

holding up. Checking in October 6, 2020, Hi Matt, Thanks for keeping the roll call going. Not

much change for me since checking in last year. Live is good and enjoy every day. Checking in

October 24, 2021. Ditto the last one. Just older, healthy, and enjoying life. Only long term side

effect is the neck and jaw fibrosis. Thyroid still hanging in there too.

Downinthemouth, from Nevada. Enrolled February 18, 2016 Caregiver. Husband was diagnosed

12-31-2015. He has base of tongue, left lymph nodes and left tonsil stage IV. He has just

completed his 18th radiation treatment of 35. 5th chemo of 7. . It's hard to see him in such pain,

unable to eat and enjoy food (which was one of his favorite things to do). We moved to a small

community two years ago after retiring. We have some good friends but none that really

understand what is involved with this type of cancer. I'm hoping to find some help in how to deal

with different situations. I thought I would reach out to those who have lived with this type of

cancer and those who have been the caretakers.

Dr.Ed, from New York but lives in Texas. Joined forum January 2013, enrolled February 11, 2013.

DX’d Stage IV, BOT, tonsils, throat and nodes (HPV driven). Treatment completed and tough road

at this time on road to recovery.

Duggie88, Pennsylvania, joined forum February 2010, enrolled May 8, 2013, DX’d throat cancer

November 22, 2009. At the Hospital at the University of Pennsylvania I had a full neck dissection

a week before Christmas removing part of my tongue, epiglottis, lymph nodes, and uvula.

Radiation February 16, 2010 through March 30, 2010. January 2015 I was told I was cured but

my wife reminded me and the Doc only of cancer. Enjoying the day and look forward to

tomorrow. I have often said it was the hardest thing I ever had to endure in my life but if I can

do it anybody can do it. I now live happily ever after spending the kid’s inheritance. Life is

good .Check in Jan 13, 20114, July 14, 2015. Checking in Jan 13, 2016, THE GOOD THE BAD

AND THE UGLY. Trying not to be good because as Billy Joel sad only the good die young. Doing my

best to be old, bad and ugly as I battle cancer for the second time, this time prostate. Jeff.

Checking in March 1, 2019 I am doing well. Last year they found by accident that my throat

cancer spread to my right lung which means I was told three times now I have cancer. ( I am

hoping I don't run out of fingers and toes to count on) So in July of 2018 I received 6 new tattoos

and began radiation soon after. They took care of the spot but two others showed up which they

thought was from the radiation and the end of January of this year I am spotless. However, since

the cancer did come back they told me I will never be cured and they will have to monitor me for

the rest of my life. (Now they have their work cut out for them) I will try to swing by more often

and throw in my $.03 (inflation)Enjoy the day, I do, every one of them.!

Thanks CivilMatt

Dunedintech, Singapore, joined forum 04-2013, enrolled 12-16-2013. DX’d 01-07-2013 SCC

front left of tongue. 27 lymph nodes removed. Lost 23 kg (50.6 lbs) during treatment. NED on 04-

09-2013. Ticking along OK as at 15 July 15. Check in July 14, 2015. Checking in February 28,

2016 - Still based in Singapore. Had a checkup recently and all NED. Three year scans / MRIS etc

in March so hoping all trending NED. Don't post as much as I used too but still read the boards

daily. One day at a time.

dvr99174, from Florida. Enrolled Oct. 20, 2016, Stage 1 squamous cell cancer behind and below

left ear behind jaw bone. In May I was diagnosed, didn't get surgery until August 9th. I lost 30lbs

because I could not open my mouth enough for solid food. I lived on ensure and yogurt...... Yum i

had a second surgery on September 13 to repair tissue damage, my jaw bone was exposed. I had

a tissue graft from my left chest to replace what was taken during surgery. Also, had tissue taken

from my left temple for repair during the 2nd surgery. this Tuesday I start my radiation

treatment.

Ekdennie, from Oklahoma. Enrolled January 17, 2011. DX Mucoepidermoid carcinoma of hard

palate w/growth into maxillary sinus-June 30, 2010. Enrolled on January 17, 2011. Checked in

January 7, 2013 & doing great w/no sign of regrowth. Welcome back! Check in Jan 16, 2014 I

am still doing great! I had a couple of scary moments and had to undergo extra tests, but

everything appears to be fine! no sign of regrowth and I am working with my new normal. Check

in Jan 9, 2015 I am still doing great! I have had some issues with narrowing of my esophagus,

but I am doing well...busy enjoying being a mom and wife!

Elaineh, from Texas. Enrolled July 21, 2015, diagnosed with Stage III SCCA right piriform sinus

in March 2014. underwent two courses induction chemo with 5FU, cisplatin and taxeotere then

seven weeks of carboplatin and radiation. NED since YEA !!! bad side effects of treatment include

45 pound weight loss, laryngitis, recurrent aspiration pneumonia and replacement of feeding tube.

I've had nothing but ice chips by mouth for one month. Inability to talk and eat or drink have led

to social isolation and depression. Really enjoy this site. It gives me great hope to see how all

others have dealt with adversity!!

Elenanic (?). Enrolled January 15, 2018, I just wanted to say hi. I am glad I've found you! You

are giving me hope...When one finds out the diagnostic one fears the worst...:(Tears every

day...But learning to thank God for the gift of life He offered me! I was diagnosed with MEC (hard

palate) in October 2017 after a second surgery. The first surgery followed by a biopsy showed a

benign lesion or maybe a lot of incompetence... The first wound never healed and after 6 months

I went to the Hospital and asked them: what on earth is happening with me, why there is still a

lesion in my mouth and not a scar. They removed it immediately and analyzed it by 2 laboratorycarcinoma

was confirmed. They say it was low grade with no neural invasion. Unfortunately, the

margins were less than 1 mm. You know what this means...I am so afraid that my lymph nodes

were affected. I am very much aware about every breath I am taking about every little pain or

small twitch that appears anywhere in my body. Sometimes I get a bit dizzy or itchy-and a

thought crosses my mind: could it be a recurrences? We do not have clear protocols in our

country and I trust not so many people to talk about this. I haven't told anyone at work and I do

not intend to let them know about that due the stigma cancer induces and due to all that

negativity and compassion that I cannot handle properly for the time being. I wish I hear more

from those who had a low grade MEC of the hard palate and didn't remove it immediately. Are you

OK now? I have lived with it for as long as 18 months- starting from the first day I became aware

that I had a cyst on the upper side of my mouth that appeared out of nowhere. (It didn't give any

symptom until December 2016 when it burst causing me a lot of pain for about 2 to 3 days).

Ending with the second surgery which will be probably followed by a third one due to positive

margins. All the best to all of you

ERomanO, from Ohio. Enrolled September1, 2018. My GP noticed swollen glands at my yearly

physical in Jan 2018. Two weeks later there was increased swelling of lymph nodes, followed by

multiple needle biopsies, then finally a diagnosis in March - SCC on BOT, HPV+. RO told me that

had I been diagnosed prior to Jan 2018 I would have been considered Stage IV, but due to their

success rate in treating and eradicating my cancer was considered Stage I. I began my 35 rads

and 3 rounds of cisplatin on April 30 and finished on June 18. As I've said elsewhere, treatments

were a relative breeze. I had the constant foaming saliva and horrible phlegm, but swallowing

was never a problem (until the 5 days following my last treatment). In fact, up through my 7th

week I still enjoyed 4 eggs and a pile of bacon for breakfast every day. But I was still hard

pressed to get my 2000 calories a day and was essentially on an Adkins diet because all carb

foods tasted awful. I lost 30 pounds through the summer, but my taste buds roared back to

within 80% rather quickly and I've gained almost all that lost weight back. Ongoing side effects

have been a roller coaster, and even daily they tend to wax and wane, but overall I feel quite

good.

EsGirl (wife), husband (patient), from outside of DC, Enrolled on February 14, 2020 (Happy

Valentine’s day to Danika Hi Everyone, We are cancer newbies and looking for any advice/tips we

can get. My husband’s location is a weird one, SCC in the nasolacrimal duct.

He had his surgery 12 weeks ago and just finished up radiation with chemo (cisplatian) 4 weeks

ago. We live outside of Wash. DC with our two youngest ones (10 & 13) and our two older boys

are not too far away at college in VA. The side effects of everything are really getting to him.

Usually he is super positive and very funny. Lately he has understandably been a bit depressed.

He also has been having a lot of side effects. Tear drainage, nose issues, loss of taste,

forgetfulness, night sweats, nausea, I guess the usual fun stuff. Any advice/tips you have are

greatly appreciated!) Thanks, Danika

Estelle, (?) Enrolled Aug 13, 2015. Still alive. Civilmatt would like a little more information,

pretty please.

Eversteve, (?) checking in June 27 2015 Excellent idea. Do you mind if I join the club? CivilMatt

says “Not if you share a little bit about yourself”.

FamilyLov, (?) Enrolled November 6, 2017 Stage 1V tonsillar squamous cell carcinoma. One

lymph node. Diagnosed Jan 2016. Radiation twice a day (64 total) 2 Cisplatin. Lost 50 lbs. Had

to have feeding tube for about one year. My throat closed up from radiation and I have had

multiple egd's with dilatation. I still get them every 4 months or so to keep it open. I also have

trouble opening my jaw. I can't eat a lot of the foods I used to love but I am grateful for what I

am able to eat. Mostly soft foods with lots of water. Hopefully one day it will be back to normal. I

All pet scans came back NED. I am thankful for every day I have with my family.

Fire34, (?) Enrolled January 21, 2016, 6 years post, SCC unknown primary HPV+, clinical trial at

the University of Chicago. Trial consisted of 8 weeks induction chemo with Erbitux and taxol.

Followed by weekly Erbitux and 5 alternating weeks of twice daily radiation (don’t know the dose)

with 120 hrs of 5FU and hydroxyurea.My side effects were numerous I was never home for the 5

weeks I should have been. The 18 weeks total I was in treatment I believe I made it home for

maybe 5 days. PEG tube, dual lumen port etc. Wish I would have found this site while going thru

treatment. Wishes & prayers for all still going thru treatment Checking in November 17, 2016 Still

checking in once and a while 7 years post now, everything is going fine now, still a little dry from

time to time.

Fisrpotpe, from Illinois. Joined forum August 2010, enrolled December 29, 2010. Dx’ed SCC 5

golf sized node around carotid on January 19, 1996, radionecrosis, or radiation necrosis

of pharynx in July 11, 2008, SCC back of tongue on February 5, 2009, broken neck March 5, 2006

in accident. Reported by

Longtermsurvivor on October 25, 2011 that he is still around. Checked in January 4, 2012. Had 4

teeth removed, 4 checkups and continued NED. Updated Feb 1. 2013. Checking in Jan 15, 2014

Had 4 teeth removed, 4 checkups and continued NED. Update as of 1-15-2014, the year 2013 was

not all that fun.... teeth are really bad, a couple i had removed 3-4 years ago have now lead to

necrosis of the mandible. soon to be 18 years on the 19th. Checking in July 21, 2015 (fisrpotpe

= forced into semi-retirement put out to pasture early), last checkup showed nothing to be

concerned about with cancer

Fishmanpa"T", from Virginia. Joined forum January 2013, enrolled February 1, 2013. Diagnosed

Nov 2012 - SCC dx N2b Stage IV HPV+ , Selective neck dissection - 23 nodes removed two

cancerous - 6 weeks chemo 30 rads. Treated at Johns Hopkins Feb - April 2013. 2 years post

April 24th - Still NED. Positive thoughts and prayers. Check in July 13, 2015. Checking in Jan

13, 2016, Still Kicking! a little over 2.5 years out....doing OK. I go next month for my 6 month

follow-ups and expect to say hi to Mr. NED. Living life in the "new normal". Positive thoughts and

prayers. Checking in February 29, 2016, NED as of Feb. 2016. Going on three years out (4-24-

2016) and doing well. next "poke, scope and prod" August 2016. Positive thoughts and

prayers."T". Checking in April 26, 2017, Yesterday 4-24-17 was my 4 year anniversary finishing

treatment. I'm NED. I have 2 more appointments. One in Sept. and then in Feb 2018 at which

point I will be deemed "cured". Side effects are rough at times but it sure beats the alternative! :)

Positive thoughts and prayers. Checking in September 10, 2019 I had my two year anniversary

(nasopharyngeal) in September too! I don't like sweets as well especially my old all-time favorite ice-cream like

you. I've gained 36 pounds and actually have no need to gain the last 26 pounds because I'm now

officially overweight by a couple of pounds. LOL. I went back to work last year but decided to

retire because I no longer had the energy to teach 24 Kinder babies. I live in the land of leisure

but bored out of my mind. So what do I decide to do? Volunteer to help teach 24 Kinder! I have

many side effects but as long as I stay in remission, won't complain. I'm just so appreciative that

I'm still here to support my children who aren't quite cooked yet. Gotta get the last one out of

college. Blessings to everyone. Checking in January 2022 Doing well.... Diagnosed NOV 2012.

Finished treatment April 2013. Still cancer free. yeah, still dealing with the 'new normal' but doing

well. Best to all.

Flyfisherman (?) Joined the H&N forum in November 2015. Enrolled in the Roll Call on January

21, 2016. dx SCC base of the tongue. Partial Neck Disection surgery at Wake Forest Baptist

Medical Center (tonsils and 5 lymph nodes) with 6 rounds of Chemo (Cisplatin) and 30 rounds of

radiation. Completed the process on June 23 2015. So far, all is good with a Dr visit earlier today

and a wonderful nose scope! I am truly blessed to be here and it's all thanks to the wonderful

care I have received and the support of my family and friends.

Fritz from Georgia. Enrolled Sep. 2, 2016 Diagnosed March 1, 2016 with Stage IVA Tonsil Cancer

(T2N2aM0) with spread to base of tongue ,soft palate and nearby lymph node. Surgery on April

20, 2016 to remove tumor and both tonsils as well as modified radical neck dissection to remove

24 lymph nodes on tumor side. Began Cisplatin infusions along with 33 radiation treatments on

June 1, 2016. Finished all treatments on July 15, 2016. Checking in April 26, 2017,

Approximately 1 year since surgeries and 9 months since last chemo/rad treatment (you can

check my story on my profile page). So far so good. Latest ENT appointment (4/12/17) shows

NED. Saliva is still very thick but able to eat about anything as long as I have plenty of liquids to

chase it down. Back at pre-diagnosis weight. Have had multiple teeth break due to radiation side

effects (3 new crowns in 4 months). Checking in July 12, 2017 Annual PET - NED! Updating

status to 1 year cancer free - annual PET scan resulted in the "all clear". Checking in July 17,

2018, (2 years post treatment) Just Checking in. Stage IVa Tonsil (spread into nearby node, soft

palate and tongue). 2 years post treatment (7/15/16 last treatment). Last ENT on 6/13/18 and

"all clear" given. Hope the best for all!! Checking in, March 11, 2019. Freddie here checking in

approximately 3 years from initial diagnosis of what was Stage IVA tonsil cancer (old staging).

Last official radiation/chemo treatment was 7/15/16. Just concluded ENT visit this morning and

visual with scope still shows NED. Same long term issues as many others. Thick saliva makes for

a challenge but plenty of fluids on hand allows me to eat most anything. Life is good every day

you are able to arise. For all those on this site, here's wishing you well.

CivilMatt

rokker68, from Arizona moving to Northern California, April 2017 DX with stage 4 SSC base of

tongue and one lymph node on both sides of my neck. Completed 7 weekly doses of Cisplatin

along with 35 RADS. Treatment ended June 29 2017. I had my 3 month checkup in October with

a CT and PET scan. Scans showed no tumor/cancer, but one node was still enlarged. Went for

needle biopsy, ended up getting a punch biopsy of said node. Came back as dead tissue, no

cancer. If there was a side effect from treatment, I got 'em all! I was on a feeding tube for

about 4 months. It was removed a couple weeks ago. I am 4 1/2 months out from treatment

and still struggle with tongue pain, painful swallowing, Pain all around my neck area. Stiffness,

soreness. Sore jaws and only open about 1 inch. Ringing in my ears, Lhermittes Sign (This is a

strange one. When I bend my neck down, I feel a shock sensation down my spine, legs and to my

feet. ) Still hacking up phlemn. Ugh. The radiation also helped close up my left carotid artery.

So now I have to have a stent put in. And the ENT DOC wants me to do hyperbaric chamber.

Can’t start that just yet. It'll have to wait until after stent surgery. Otherwise, I am doing okay

and just thankful to alive. I also have decided to retire from work and enjoy life without that

stress. I am only 49 but this cancer adventure gave me a new perspective on life. Checking in

February 14, 2019 “Hey Matt” Good to see you again! I'm still here but not as often. Hope all is

well. Checking in January 2022 Been a while. Good to see you. This coming May will be my 5

year mark. Since my last rollcall update I've moved again. Left California for idaho. Two months

ago I had all my teeth removed. They were falling apart due to radiation damage. Still healing

from that. Still can't wear the dentures yet. My swallowing is slowly getting worse. Throat and

neck are getting tighter as the years tick by. Had a 2nd stent put in the artery in my neck. Not

complaining by any means. I'm still alive. 5 years ago Matt was giving me regular advice when I

was going thru treatment. His advice was invaluable to me. Thanks again Matt!

gdawg55, from South Carolina. Enrolled Jan 2, 2016. I was diagnosed Oct 2014 with Stage 2

tonsil cancer on my left tonsil (squamous cell carcinoma). I had surgery on Dec 31 2014 to

remove my tonsils as well as had a neck dissection to look at my lymph nodes. No cancer was

found in my lymph nodes and they were able to get good margins around my tonsil so I didn't

have any other treatments. I just passed my 1 year anniversary and I'm NED. Upon analysis of

my tumor after surgery they changed me from Stage 2 to Stage 1 so I guess the tumor wasn't as

large as first thought. I was fortunate to have caught the cancer early. Good Lord willing, hope

it's gone forever. Checking in OCTOBER 15, 2019 Going on 5 years NED since my diagnosis.

Thank the Lord all is good so far. God Bless!!

Geezer (OM) From Florida. Joined in 2006, dx’d with Tonsilar cancer.

Goalie, DC/Maryland area, DX’d unknown but checked in on February 5, 2013 that was treated

two years prior to this posting. Doing well except needing water and an increasing stiff neck

condition.

Grandmax4, from Ohio. Enrolled January 19, 2013. DX’s September 2011, November

2,2011~~de Vinci robotic full neck dissection to remove a mass on my epiglottis . SCC and very

blessed that the cancer had not invaded my lymph nodes. No chemo or radiation required. All is

well and can eat anything. Checking in July 20, 2015 Forever Grateful. Months of speech

therapy, feeding tube, and determination to beat this monster has brought me where I am

today~~~~~and my God…..July 28 is my 4 year check-up, even though I think I'm fine, there's

always that nagging little doubt. Bless you all .Checking in Dec 10, 2016, Checking in~~~5

years, 1 month, 8days..cancer free, loving life~~~declared cured, I'm always afraid to say that,

there is, and always will be, the little tinge of fear. Merry Christmas everyone and may 2017 be a

fabulous New Year! Checking in January 9, 2018. Happy to see so many familiar faces and

names, Best wishes for a wonderful, healthy 2018. Checking in February 13, 2019 “Still kicking,

just not as high”. Doing good, getting older, enjoying retirement, still loving my 3 boys To all that

helped me down the path, thank you to all traveling the path, keep going, stay strong. God Bless

you all!

Grandmudder, from BC Canada caregiver to Husband with Stage IVa finished treatment August

2014 Still NED :)

Greg53, from Missouri, DX SCC right tonsil, enrolled 07-20-2010. Checked in January 21, 2013.

Almost 3 years out and doing well. Checking in Jan 19, 2014 Dang near 4 years out and doing

great. My best to everyone! Check in July 14, 2015, This thread was always one of my favorites -

great way to see how old friends are doing - Thanks CivilMatt and Skiffin-16 and RIP HAWVET.

Positive thoughts and Good Mojo to everyone!

Greg, from Pennsylvania. Enrolled January 21, 2013. DX’d SCC base of tongue w/mets to lymph

nodes stage IV. NED in November 2010. Returning back to work soon.

Guzzle, from Liverpool, United Kingdom. Enrolled Aug 7, 2015 Stage 4 Tonsil. 16 months out all

good so far touch wood. Checking in February 28, 2019 Doing well. 5 years in June. I'll never

forget the support I got here Just walked last 120 miles of El Camino. In contact with many fellow

warriors and had the privilege to meet a few. YNWA X, GARY . Checking in August 21, 2019

Checking in. Past 5 years. All good so far!

Gypsy28, from Maine. Enrolled November 20, 2017 MA. Dx March 2016 salivary gland cancer.

Parotid gland. Mucoepidermoid carcinoma. Intermediate grade. Had surgery March 2016 finished

rads Aug 2016. Follow up care is MRI every six months. Ned so far. Surviving today. Hope for

tomorrow.

Hard12Find (UL). August 2012 stage IVa SCC Rt tonsil, lymph nodes and left tonsil. Chemo and

Radiation. Actually feeling /doing well although have not been able to see a doctor for quite some

time, after losing insurance. I still have difficulties swallowing, and assume I always will, but with

the help of milk, I can eat just about anything I put my mind to, and my taste buds are back to

near normal, or new normal. Had significant hearing loss and tinnitus, from Cisplatin, still do. Took

on a new career as an over the road long haul truck driver, and have enjoyed seeing family and

friends, old and new places. I drive with my dog Charlie, and if you are inclined to follow our

adventures, he has his own Facebook page...search for Charlie the truck driving dog....I don't

come here as often as I used to, and I lurk more than post, but have great appreciation for those

who still provide support for the newbies...I treasure all of my CSN friends, and pray for all those

afflicted by this beast....May god bless us all. Check in July 13, 2015. Checking in Feb. 18, 2017

still here, pretty much the same as 2015. Checking in Dec 12, 2019, Sorry don't come by here

much, anymore, but been thinking about all the great people on here. Diagnosed Aug 2013, with

stg 4A SCC on rt tonsil, metastasized to left tonsil and nodes. Radiation and chemo with cisplatin.

feeding tube, but still went from 220 lbs to 130, extremely nausea throughout treatment, and

sore throat and occasional thrush, from radiation. As of 2019, have severe tinnitus in both eats,

lack of saliva, and dysphagia. The good news is I am still here, and my taste are normal, and I

can eat most anything as long as i have whole milk to chase it with. good to see some familiar

names on the list. Hang in there new folks, it can be beat, but it’s a battle that’s for sure. Love

you all and may god bless us all.

Hawk711, from California. Enrolled January 1, 2012, diagnosed SCC BOT January 2010 & July

2011. Checked in January 13, 2013. Still NED but having ORN issues, left side of jaw, Since then

had jaw replaced on left side due to ORN. (Thank you Rads) , but enjoying every day. Radiation,

the gift that keep on giving! Enjoy every day without the dreaded "c". All the best in 2014 t us

all. Checking in July 31, 2015 Anyway, as of today I am 5 years 4 months NED, that's right I said

NED !!!!! Hope all of your folks are finding your new normal a good place to be. I am. Just gave

my daughter away on her wedding day, so I'm glad i am here to do it. All the best.

HAWVET(OM), from Hawaii. Joined forum April 2006, enrolled in January 2008. DX’d NPC in

January 1998. Treatment completed June 1998 and was NED two years later. Am still around 13

years later and look forward for year 2014. I have been fortunate to be around and now into my

16th year, but the after effects of the treatment has impacted on my life style. My saliva is just

about gone and taste about 50-60 percent. When added to my COPD and aspiration problems, it

would appear I would not enjoy life. Not true. I try to maintain a positive attitude and enjoy each

moment. It has not stopped me from going to Las Vegas. I was fortunate to have made the

military a career so my medical bills are fully covered when combined with Medicare. Aloha to all

(January 12, 2014).

Heather_Lynn, from Iowa. Enrolled February 26, 2016. I was diagnosed with Olfactory

Neuroblastoma 1/12/16 after surgery to remove what was thought to be a polyp obstructing my

right nostril. I had a second surgery 2/4/16 to remove remaining tumor. It was Grade II, so while

my neck was clear on PET scan I am starting 31 IMRT radiation treatments scheduled on 3/10/16

to just the skull base/sinus area. I'm looking for any information on side effects during and after

radiation for this type of radiation/cancer.

hlrowe (UL, UDx). Enrolled February 14,, 2019 TX finished June 2012 35 rad 6 cisplatin.

HobbsDoggy, from Southern Indiana. Joined forum February 2013, enrolled February 10, 2013.

DX’d in July 2012, Stage IV neck w/one lymph node and unknown primary. Treatment completed

in Dec 2012 and still battling side effects. Pet scan scheduled for March 3rd.

HONDO, from Louisiana. joined forum April 2009, enrolled January 31, 2010. DX NPC in

November 2002. Have had lots of problems w/radiation and side effects almost 8 years later. Lost

voice and ability to eat, Live in pain, but still alive and working full time. Also works on line with

Ministry of Restoring Gods. Saliva glands started to work, but can’t swallow. Updated 02-01-2013

& 12-12-2013. 2002: First treatment for NPC Did just radiation 180 rad once a day. 2004:

Recurring NPC in the same place Did 120 rad twice a day and Chemo. 2006: Recurring NPC

again same area, was giving 6 to 12 mounts to live. 2015: Still alive no sign of recurring NPC,

living with some very bad radiation side effects and Norcoses to the soft palate, but still alive and

thanking God for everyday one day at a time. On Vacation in the tropical Island of Utila Honduras.

Check in Jan 13, 2014, July 11, 2015. Checking in oct 30, 2015 I made it back for the Island a

few months ago, planning to spend Christmas and New Years with the wife and family then head

back early in January. Checking in January 22, 2016, I am like a Duracell; I just keep going and

going and going. Back visiting my brother in Honduras, eating as much raw fresh foods as

possible to stay healthy. God has been so good in providing His blessings every day and keeping

me alive. Check in Aug. 13, 2016, Still here and still alive, came down with some Pneumonia

again but that is due to not being able to swallow. Feeling like crap but that is all part of live.

Check in November 19, 2016 doing as good as possible for all the problems I live with. God has

been so good to me; He provides daily all my needs. Checking in Dec 31, 2016. Oh oh last day

to check in, T** (Hondo) or whatever you want to call me. I am still here but not doing the best

because of long term side effects of radiation treatment, but I am still by God grace still alive.

hwt from Missouri. 01/2011 cancer of lower left mandible with positive lymph nodes. Surgery,

rads, Cisplatin. Recurrences 02/2013 around left carotid and 04/2014 around right carotid.

Treated for both with SBRT at Mayo Clinic and additional chemo Taxol/Erbitux) 9/2014 the

titanium placed in 2011 had to come out and 02/2015 the fibula put in in 2011 had to come out.

Resulting fistula has not healed yet. Surgery to rough up and hopefully will close yet to be

scheduled. My husband, my love and caregiver, had a stroke 10/2014 and spassed away May

2015 so it has been difficult to regain strength. My last scan was clean and I am due for another.

Still fighting the fight with love and support of family. Have received great support here at CSN.

Check in Jan 13, 2014 , July 11, 2015. Checking in Jan 13, 2016, Thankful for NED on most

recent scan.

IAmStrong (?). Enrolled January 28, 2016. I joined in Feb 2012. I am living in the Midwest. Brr!

I was declared "Cured" of stage 4 SCC of tongue, mets to neck, jugular and 2 lymph nodes.

Surgery X 2, chemo...cisplatin (including overdose last treatment) and rads full board. Poor

prognosis! Thanking God for each and every day! I have CKD....chronic kidney disease at 31%

total kidney function and maintaining since I was in renal failure after being OD'd. Thankful for no

further loss! I have a severe hearing loss from chemo as well. Yet, thanking God every day my

feet touch the floor no matter how much aches or pain I have in our bitter cold winters etc. I am

now dealing with some eye issues that are new and bone loss. Eating is a challenge. It depends

on the varied taste I experience! lol Sweets are pretty nasty to me, yet DQ ice cream is my

weakness. My favorites are fresh vegetables, raw or cooked bc of the moisture in them. Because

my zero stoma is pretty active and having a bit of my tongue removed...little fragments/particles

are difficult in eating. I can aspirate easily...must pay attention to this including water. Have

learned what works for me! Coconut oil is my BFF I even put it in my mouth and it makes it feel

the most "normal" of all! And is a natural antibiotic as well. Biotene products no longer work for

me, as they had changed their formula and it burns my mouth like fire. I do have trigeminal

nerve pain and facial and floor of mouth spasming and that is handled medically as well. I am

Grateful! I get cold very easily ever since, and need to move closer to the equator! lol Blessings

to All!

Irishgypsie, from New York, Joined forum May 2010, enrolled on July 11, 2010. DX SCC’d right

tonsil, Posted January 6, 2014 that “Life is Good”. Check in Jan 25, 2015 Present and accounted

for! :)

Its, from Michigan. Enrolled January 2, 2013. DX’d October 2012 Adenoid Cystic Carcinoma right

submandibular gland. Neck dissection to remove gland, 30 lymph nodes, and some local muscle.

Still in radiation as of enrollment date. Best wishes! jackflash22, from England. Enrolled Aug 7,

2015 es, 35 radiotherapy sessions, Throat completely closed from radiation, had tube for 18

months. Opened enough to take liquid food. 100% better than tube food.removal of rare tumor in

small bowel, in remission, still on two monthly scopes and throat dilations. clear of small bowel

cancer March 2015, taste buds recovered, energy levels normal, not gaining or losing weight, 5

ensure2cal each day plus smoothies, yoghurts, custards, soup etc. life is looking up at present.

Checking in Oct 22, 2016 I'm still here. Small i'ntestine cancer 2015 neuroendoctrine not related

to throat. Had surgery. Follow up scan next January. Small cancer on eyelid related to sun.

Removed and reconstructed. Over all health good. I'm now on check ups three months apart. Was

on monthly, then two monthly now three ..progressing. lost partner 2015 while ill with bowel

cancer. Was going downhill until son bought me a miniature dachshund puppy. Turned my life

around he's adorable and relies on me and loves me to bits and me him. Didn't know I could love

something so much. I get him to take me for two or three walks a day. We cozy up in my chair.

Don't get much spare time any more it's like having a baby all over again. Life is good. Checking

in june 24, 2017 still here, Sometimes I completely forget I’m a cancer survivor. Life is good...

Checking in February 7, 2020, Hi all haven t been on for a while but I'm still here Recovered

well...still have throat dilations to keep my throat open. Got pneumonia last January ...found I had

a leak into my lung , swallowing. Refusing to go on a feeding tube. I hated it the first time this

time it would be permanent. Have been , and healthy...touch wood....at present. I’m happy, enjoy

life...I walk with my little dog, spend my days crafting, which I'm obsessed with. am catching up

with my friends news on here. I was saddened and shocked to hear phrannie51 had lost her brave

fight. She helped me a lot in 2013 onwards. RIP phrannie51

janich (?) Enrolled Aug. 29, 2016, I am a new member, Aug. 2016. Diagnosed with squamous cell

cancer of right maxilla and had surgery Jan. 2014 to remove 1/4 of mouth and soft/hard palate on

right side. 26 lymph nodes removed March 2014. Recurrence May 2014. Radiation, chemo, and 2

hospitalizations from June thru Oct. Had feeding tube due to severe mucositis for 19 months, June

2014 to Jan. 2016. Final obturator Jan. 2016, have been on soft diet since then. Still dealing with

some mouth pain and taking opioids. I'd like to talk to others who have an obturator. I'm a

Christian, and I'm grateful to God for carrying me through this hard time and for all the support

from friends and family. I'm writing a book about my experience.

jbrowne8813 from Alabama. Enrolled July 30, 2015 Type of Cancer: Squamous Cell Carcinoma of

the tongue

jcb2222 from Pennsylvania. Enrolled January 29, 2016 I'm a three year stage three survivor of

cancer in the left lymph gland in my neck. I had 35 radiation treatments and 7 weeks of

chemotherapy. I feel fortunate that I gave in to my wife’s insistence that I allow an insurance

wellness nurse to come out for a home exam. I have no problems seeing a doctor for an illness

but at the time I didn't see the need to see one. During the examination she felt a slight

abnormality in the left side of my neck and suggested that I see my PCP. My PCP was highly

impressed with her diagnostic ability because it was quite a subtle thing and he intern sent me to

a ENT for a better exam. That stated my process. I'm glad to be a member of the group and

wished that I would have joined sooner.

Jcortney from Texas. Checking in Feb 1, 2014 Doing well. SQ BOT Stage 4. Started treatment

2/1/13. My 1 year anniversary is today.

JC F (?) Enrolled July 26, 2015 Diagnosed May 2014 Stage IV SCC BOT HPV 16+. Large primary

with large right side neck lymph node involvement. Three seven hour marathon cisplatin sessions

with 35 rads finished Aug. 20 last summer. Coming up NED so far which is good. Taste and saliva

issues still suck which is not so good. Went through the entire process by myself...very

difficult...have had to maintain warrior status…

J4mie from Illinois. Joined forum 09-2013, enrolled 12-17-2013. DX’d State IV, left tonsil,

tonsillectomy & 29 nodes removed 09-06-2013. Treatment completed 11-20-2013 and due to see

Oncologist on 12-19-2013. Checking in Jan 14 2014 recovering slowly, but noticing slight

improvements each day.

Jeffw69 (?) Enrolled Aug 20, 2016, Diagnosed march 15 with BOT stage IV, went through 39 rads

and 6 chemo, I finished my treatments June 19 of 2015,got my NED September of 2015.

Jeff2159 (?) checking in Feb 4, 2014 I have battled tongue cancer for almost 20 yrs (10 surgeries

mostly outpatient except 2) and never smoked or chewed. 3 surgeries from Dec 2011 to Jan 2012

led me to explore radiation and had PET scan which showed my mouth clean but my left kidney

was cancerous. Adios to left kidney (and thought stage 1) March 7 but stage 3, 1 lymph node

cancerous, with 55% element of sarcomitoid so the grade was 4. Also mets to lungs April 2012

and 2 rounds of sutent worked miracles to irradiate 95% of them. Radiation and chemo Jan 2013

and last scan 1-6-14 showed NED for head and neck and the few lung nodules have shrunk due to

avastin. Update to my crazy life, the original mets to lungs were from my kidney and disappeared

with sutent in June 2012. Latest scans last 6 months have shown mets enlarging well at first of

the year I blew a hole in my lung, had surgery and had 2 tumors removed, one of them caused

the hole in my lung and they are squamous cell thus from my tongue cancer. Just started Erbitux

today 2-4-14

Jennfer39, from Ohio. Joined forum November 2011, enrolled March 7, 2013, DX’d on October 7,

2011 w/left SCC left tonsil HPV, met to3 lymph nodes. Tonsillectomy and feeding port. Treatment

completed December 30, 2011. Two pets since (last on October 25, 2012) and NED.

JGE (?) checked in 03-17-2010. 2008, BOT w/2 nodes. Had chemo and rads. All scans cleared,

return to work 01 2009. Finally checked back in January 3, 2013. Welcome back. Enjoyed your

post J

Jimbo55, from Chicago working in Bangkok Thailand, joined forum June 2010, enrolled March 18,

2013. DX’d SCC BOT in May 2010. MIA in 2012 and checked back in March 18, 2013 fresh off a

clean PET/CT scan. Checking in Nov 11, 2015 Five years plus and I keep on keeping on. A few

minor after effects: taking thyroid meds, a little dry mouth, the voice is a somewhat hoarse at

times, but all in all, absolutely nothing to complain about. Life is good. Checking in April 26, 2021

Coming up on 11 years, the voice is a bit sketchy at times, but otherwise no complaints.

Jim & I, Florida. I joined H&N forum in May enrolled August 7, 2011. Checked in January 20,

2013 w/more info. Caretaker of husband Jim, dx’d w/base of tongue, stage IV and two lymph

nodes in April 2011. Finished treatment in August. Three months later spread to both lungs.

Informed in September 2012 that less than a year. Still believe in miracles. Adding my prayers

and best wishes. Reported on 12-13-2013 that cancer in bones and left jaw. Appt with oncologist

on 01-12-2014. Best wishes. Update Husband Jim diagnosed with stage four base of tongue in

May 2011. 35 Rads and Cisplatin. Mets to lungs 3 months after treatment ended. Lost battle on

Good Friday 2014. Mother diagnosed with lung cancer Oct. 2014, mets to eye April 2015 25 Rads

on eye. Lung Rads to begin in a week to treat tumor rubbing vessel and causing blood loss. Next

to my faith this site is my lifeline. Check in July 14, 2015. Bless You.

Jkinobay (OM), Arizona & Mexico, enrolled April 21, 2009. DX’d HPV16 positive lymph nodes in

2007, checked in July 27, 2010. Finally checked back in on February 28, 2012. First person to

check in-year 2013 on January 2, 2013 and reached the 5 ½ years and still NED. Checking in Jan

26,2017. Jkinobay here. All most 10 years and doing great. Still NED. May, 2017 will be 10

years post diagnosis. Have come to really appreciate my "NEW NORMAL" and all that comes with

it. Can't say enough good things about the great, caring folks here at the CSN/HNC Board and

how tremendous a resource they have been to so many. Keep on a keep'in on. Take care. JK….

Checking in November 20, 2019. Thirteen Years NED and going strong. ORIGINAL DIAGNOSIS

SCC IN A LYMPH NODE, PRIMARY IN A TONSIL. SURGERY FOR BOTH. SEVEN WEEKS OF

CISPLATIN AND DAILY IMRT. Still living in Mexico. Still fishing on the Sea of Cortez. Still loving

life. Hard to believe it's been thirteen years already. My best wishes to everyone

Jms297 (?) enrolled May 24, 2017, I was diagnosed on January 6 after suffering a mini stroke.

While doing test of carotid arteries they noticed a mass on one of my lymph node. Primary site

was my right tonsil so I had a neck dissection on Feb. 28 and TORS surgery on March 3 to remove

the tonsil, part of soft palate and rear tongue. 30 lymph nodes were removed with 4 showing

positive but none of the 4 were out of the margins. I am now doing radiation treatments and

today was my 9th one so only 21 left. No chemo.

Joannaw81 (Caregiver to my mom) from New Jersey. Enrolled July 17, 2015 Diagnosed in Oct. of

2010, stage 3 tonsil and later tongue twice, neck dissection on both sides and radiation. 3

recurrences with last surgery on 3/1/12. NED for 3 years and 5 months which Ii thank God for.

THIS SITE AND ALL OF U HELPED ME AND MY MOM GET THROUGH THIS. GOD BLESS U

ALL. Checking in February 12, 2019 Hi all, My mom diagnosed in 2010 with stage IV tonsil. 3

local reoccurrences between 2011 and 2012- she will be 7 years cancer free on 3/2/19. Thank you

all for being here.... Checking in on May 10, 2019. Hi Guys, with upcoming Mother's Day

decided to check in to honor my mom- survivor- NED for 7 years and 2 months, so grateful for

that. Very hard to believe after all the recurrences that she had...for everyone out there, I know

it’s hard, I know it’s painful however keep fighting, don’t give up.

Joe14 from New York. Joined forum May 2010, enrolled July 22, 2010. DX’d w/SCC unknown

primary in April 2010. Left neck dissection & tonsillectomy. One tumor positive of 40 taken. MIA in

2012 and checked back in on March 13, 2013. Checking in Sep 4, 2015 Was diagnosed in April of

2010 and just passed the 5 year mark with an all clear a few months back. I used to be a regular

around here and this board really meant the world to me. Thought I'd check in and wish everyone

the best.

Johnsonbl (?) fom Iowa Enrolled July 11, 2017, Dx’d as Stage 4 (AJCC 7th Edition)/Stage 1 (AJCC

8th Edition) BOT HPV+. Tonsillectomy, neck dissection, TORS surgery, 6 weeks of radiation 60gy.

Just passed the 2 year anniversary of my surgery...will be 2 years out from radiation in April.

Doing well aside from some stupid side effects such as a beat up thyroid, a stiff neck and worry

about every weird ache and pain.

Josh r. (?) checking in June 17, 2015, SCC, Stage IV throat 1991 . joined CSN 2010. "Jimmy

V's"; "Never, never, never, never give up!" When I returned to teaching on January 4, 1992 I put

his quote above my classroom door so when leaving the room it was impossible to miss. I'd like to

think that being there for the last sixteen years of my teaching career it gave someone hope as

much for them as it did for me.

Jthornsbury from Texas, checking in Jan 20, 2014 ...DX Jan '13 SCC Tonsil T2 2Nb M0...treatment

of six weeks (32 rad treatment) radiation at MDA Houston complete April 19 2013...since then all

clear scans and side effects improving! Next scan in March, MD pleased with progress...and we go

from there! Blessings to all...checking in July 18, 2015 Living Large in the Lone Star State Frist

all clear May 2013 two months after my 50th birthday. All Clear with upcoming 2 year and two

month scan on July 20th...litte dry mouth. most taste is back. ran and completed my first 13.1

half in March right before my 52th birthday and planning to run the next one in November! Plan is

to run two 13.1 a year till I'm 100! :) I am living each day grateful and thankful! Checking in

January 23, 2016 Still doing great as we enter another year to live every day to the fullest...have

been put on yearly scans/appointments and still going to UT MD Anderson in Houston. Continue to

run with several 5k/10k/15k under the belt and another 13.1 in April. Next scan and checkup (3

year & 3 months) is scheduled for late July. This month it will be three years since DX. So thankful

for all the encouragement and advice from the many other warriors on this page. I will always be

grateful for each who gave encouragement and practical advice over the past three years. Have

not been on lately as life with two teenagers has been crazy but try to drop in on a regular basis.

jtl, from Florida, Enrolled Sep. 1, 2016 It has been 5 years and so far so good. Still getting CT

chest scans which I recommend for everyone. I had a very small spot on my lung that was

deemed insignificant but a follow up this fall is in the cards. I also had bladder cancer which I

don't think was related to this. It was treated and not problems since. I have zero side effects

and have full taste and saliva. I had the traditional rads and the Erbitux when it was hardly heard

of. I have zero side effects and have full taste and saliva. I was thinking in my life of 70 years I

have had melanoma (50 years ago), prostate cancer 15 years ago, scchn 5 years ago, and

bladder cancer a year ago. I would say that is enough for this life. Take care and be well.

Checking in February 9, 2018, It has been 6 1/2 years since I finished my last RT for throat

cancer. It was stage 3 and my treatment was RT and Erbitux. My only side affects to date is an

occasional neck cramp. So all is good. Best wishes to all of you.

Kapital from California. Enrolled April 22, 2017, Husband diagnosed, age 60, with with stage IV

tonsil cancer, HPV and P16+. First noticed a lump in left neck Sept 2015. Needle aspiration

negative, told it was a Bronchial Cleft Cyst. Waited until Nov to have it removed. Surgeon said it

was not CA post op. Path report came back SCC, CT1N2B, P16+ with unknown primary.

Laparoscopy with tonsillectomy and multiple bx done Dec 2015, showing left tonsil CA. Treatment

started Jan 2016 = 3 rounds of Carboplatin with 6 1/2 weeks of IMRT radiation (6600 cGy). No

PEG, lost 75 lbs, regained 20lb at 2 years out. Happy to be NED at 2 year mark - March 2017.

Saliva at about 50% and taste 60%, carefull with swallowing - with lots of moisture/liquids

available, able to eat pretty much anything . Otherwise, doing amazingly well, living life to the

fullest, taking each day as the gift that it is.

Katenorwood from Minnesota. Enrolled January 17, 2014 Dx'd w/adenoid cystic carcinoma Nov.

2011. Neck dissection of large saliva gland on right side w/7 lymph nodes taken. (front of neckcut

made from right to left) Rads. done Jan. 2012. Wedge re-sect of right lung done Dec.

2012. Palliative care presently for pain. Enjoying every single day ! Thank you for doing this !

We all appreciate the effort and enjoy seeing the survivors listed. And of course will always

remember those that have passed on. Bless you ! Checking in Nov 7, 2015 Lungs are kicking

my butt, and no tx to match for a fix. But am very hopeful and looking ahead to more research

being done for all of us with any kind of H/N dx. I look through the above list and am amazed at

the strength of the folks listed. I am saddened to see members listed that have moved on to the

next adventure. I am proud to add my name to this list of survivors and warriors. Thank you for

continuing this very important task of giving us a voice !

Kenny from Louisiana. Enrolled Oct 3, 2016 Dx Stage II NPC SCC Sep 2015. Treatment with rads

(70 gy) + adjutant cisplatin + 5FU (2 cycles). Currently NED (Oct 2016). God is good, stay

healthy and take a different outlook in life. This forum keeps.

KB56 from Texas. Joined 04-2013, enrolled 12-29-2013. DX’d cancer right tonsil on April 1, 2013.

Tonsillectomy. Treatment completed 06-11-2013. Clean PET scan and NED CATscan just before

Xmas. Checking I May 22, 2 me going 014 my one year finishing treatment is June 11, 2014.

Doing well so far and feeling great. A few little side effects but nothing that slows me done

(much) and compromised saliva is the biggest issue but not a show stopper. I have my next scan

in August and I know it will be good:) All the best. Checking in July 21, 2015 Last CT SCAN and

Doctor visit was June 2015 and all NED! A new grandfather (the first for us) and a very proud

grandfather to my new granddaughter. Checking in Dec 13, 2016, It's hard to believe it's

already been 3.5 years since I finished treatment and so far so good. The side effects are now

minimal (but still a few but nothing I can't live with and enjoying life to the fullest). Saliva has

recovered for the most part which was one of the biggest issues at first but the human body is a

pretty amazing creation. Once you stop beating up on it with radiation and chemo, it slowly but

surely, tries to get back to "normal". The whole experience was a life changing one for sure but i

hope i am a better person than i was before all this started. I try and be more patient, more

tolerant of others and try not to spend time thinking about things that are out of my control (like

a recurrance). The folks on this site are wonderful people and always supportive, always willing

to listen and try to help guide someone through whatever they happen to be going through at the

time. life is truly special.

kdot2003 from Georgia. Enrolled Nov 1, 2015 diagnosed with SCC Left Pyriform Sinus with mets

to Lymph Nodes Stage III 9/23/15. In treatment with Rads and Cisplatin after tonsillectomy and

pan endoscopy.

Kent Cass from Illinois. Enrolled July 22, 2010. DX: 11/2008 Stage-3 NPC unknown primary,

Treatment 2/09-4/09 Concurrent Cisplatin and 5-FU, carrying 2 bags & pumps twice for 96 hours

weeks 1 and 4. 6800 rads in a total of 20 places/session, though missed weeks 5 and 6 (was in

the hospital for 4 nights). 31 full rad sessions, and the last 4 in only 5 places. Checked in January

6, 2012, still dealing with teeth issues/neck spasms, but still okay. Checked in February 2, 2013

and only little problem is neck spasms. Checking in Jan 30, 2014, still kicking Will be 5-years out

in early April, and have no more visits with any cancer doctors on the schedule. Dentist is another

matter. Started with 5 Crowns and a Bridge- now have 10 Crowns and the Bridge, along with 3

root canals since cancer treatment. And, Dentist has plans on two more Crowns! $14K, out of my

pocket since I came back positive. Be advised. Neck spasms are a continuing issue, which I got

meds for, but now they're talking Botox treatment at the U of Iowa to help with that. 59, now, and

still working 9-hour shifts at a metal working factory as an Inspector, so I got no grounds for

complaint. Hey- never thought I'd ever be looking forward to turning 60, but come this

November... Check in July 13, 2015. Still here! Over $11K in Dental bills since treatment, with

2 root canals and 3 new Crowns, and tops of 10 teeth keep getting rebuilt. Returned to work a

month after the last rad, and still working as an Inspector at a progressive metalworking factory.

Believe. Checking in Jan2, 2016, 61 years old now, and will be 7 years out to the good come

early-April of 2016! Update issues are that the neck spasms have gotten much worse to the point

of being under the care of a Neurologist with 2 meds helping to deal with. And, dental bills are

over $12K, but all was good with my last check-up.

Kevinr51 from Michigan. Joined forum 11-2013, enrolled 12-15-2013. DX’d 09-2013 Stage IV

right tonsil, 2 lymph nodes. Undergoing treatment at time of enrollment.

Kgasmart from Florida. Enrolled October 26, 2019, age 52, diagnosed SCC HPV right base of

tongue in June 2017, laser surgery at Florida Hospital/Orlando in December 2017, along with full

modified radical neck dissection, they took 63 lymph nodes, cancer had spread to 1. 30 rads to

right side only, began in early February 2018; lower dosage as per newer guidelines, still knocked

me on my *ss. A small cut on my neck during te radiation treatment led to a cellulitis, for which I

was hospitalized twice and went to the ER a third time before the antibiotics finally knocked it

down for good. Fairly significant lymphedema early on, massage therapy and now at-home

massage keep it under control. Two years out I still have fairly significant neck discomfort related

(I think) to the dissection, and can't sing/hit the high notes like I used to. Significant

scarring/major "turkey neck." Have to watch it while eating dry foods like toast, etc., very easy to

aspirate crumbs etc. into my lungs, always need to drink lots of fluids while eating. But all this

said, no evidence of recurrence at this point, for which I'm grateful. Lots of thanks to the folks on

this forum, I've posted several questions - when you're dealing with the cancer or the side effects

and the strange sensations, etc., you think you're the only one out there, and when the docs don't

have all the answers you turn to forums like this. And when people here say "Yeah, that happened

to me too," it's a big relief, because at least you know you're not alone!

Kiev 1996 (?). Dx mucoepidermoid carcinoma of submandibular salivary gland June 2015. Had a

tumor growing for about 9 month. Waiting for surgery in July. NJ. Enrollment July 10, 2015

Kimba1505 from Pennsylvania. Joined forum April 2010, enrolled July 20, 2010. Partner DX’d

Stage IV SCC left tonsil April 13, 2010. Checked back in July 20, 2010 on day treatment

completed. MIA for two years and checked in June 3, 2013. Reported partner lives almost a

normal life except for some after effects.

Klingels from California. Enrolled July 28, 2017 received a diagnosis of Stage IV right tonsular

cancer with metastasize into right lymph nodes in April 2017. He has completed 3 rounds of

Cisplatin and 35 radiation treatments. He is one week post treatment. He has a G tube and has

TPN, intravenous nutrition. He currently has mouth and throat pain and thick mucus. At present,

he cannot swallow. He has just resumed taking food through G tube as his stomach was not able

to tolerate anything. Checking in February 15, 2018, Klingels- Kent is 7 months post treatment.

He is back to work part-time. Still has feeding tube, but anticipates its removal in the next couple

of weeks. He has little saliva and has developed neuropathy in his feet. Eating continues to be a

challenge and he has trouble keeping weight on. Has lost about 45 pounds. Otherwise, he is

enjoying the sweetness of life and being with family. Checking in September 1, 2019 Just had 2

year anniversary for cancer treatment. Back to work full-time, still 40 pounds lighter, eat slower

but most everything I want. Don't like the tastes of sweets any more especially ice cream. It has

no taste. Energy level is back to normal.

Kritter from Louisiana. Nasal cancer, joined July 2014, Diagnosed July 23rd, 2014 with nasal

cancer. Re-diagnosed May 14, 2015 with nasal cancer again. Doing okay as I can and living day

to day right now. Enjoying life

CivilMatt

KTeacher from California. Joined forum January 2011, enrolled July 20, 2011. DX’d SCC HPV -

Spindle cell variant, perineural involvement. MIA IN 2012,, checked back in March 18, 2013. Since

last post, “C” traveled up nerves to cheek to optic nerve. Right eye removed followed by chemo

& radiation. Will retire. Bless you. Checked back August 23 and rec’d surgeries at Stanford

Landranger, Michigan, joined forum November 2009, enrolled February 4, 2013. DX’d in May 2009

with SCC BOT Stage III and one lymph node. I have been fighting squamous cell carcinoma since

August, 2010. I live in the Central Valley, California. Most recently I was on Taxol for palliative

care, it has stopped working. I will see my doctor at Stanford at the end of the month to see

what can be done next. Check in July 12, 2015.

Kyskirt (?) Enrolled December 30, 2016. 3 yrs NED - Stage III larynx (rare papillary) SCC. Was

told Day before Thanksgiving by Dr, I'm no longer in contention for nonoccurence. WOO HOO!

Only current issues involve radiation induced muscle spasms (treated with Botox) as well nerve

damage issues. Swallow comes and goes in strength, I adjust as needed. My goal was to save

my voice, I did, it isn't strong or loud but I function. Thankful to be here and able to enjoy life

with a few limitations.

Ladylacy (wife and caregiver to husband) from Georgia. Checking in for husband, diagnosed with

laryngeal cancer in 2010. Underwent radiation, chemo, and then surgery for complete

laryngectomy in 2011. NED for one year. In 2012 diagnosed with a second primary at the

cervical of his esophagus. Underwent a second round of radiation and chemo, surgery ruled out.

NED for 4 months. Then reoccurred at cervical of esophagus and found cancer in right lung in

January 2013. Surgery ruled out and only thing offered was more chemo. Husband declined.

Today he is still fighting the battle. Check in Jan 13, 2014. Checking in Aug 17, 2015 My

husband lost his battle on 7/25/15. His strength and will was very strong thru out his battle.

Landranger25 (?). Enrolled January 2, 2018. All good now. Diagnosed June 2009 SCC base of

tongue. 10 weeks of Cisplatin-5FU/30+ radiation sessions, no surgery. Took about a year to get

back to anywhere close to what I was before. All good now. Checking in August15, 2019 Just

checking in. June of 2019 was the 10 year anniversary for my SCC BOT diagnosis. So far, so good,

no recurrence. Dealing with the side effects from the treatment (Chemo and rads) but they are

minimal all things considered

Laralyn, California, joined forum April 2012, enrolled February 1, 2013. DX’d Stage IV SCC in left

tonsil, HPV+. Radiation/Chemo completed June 1, 2012. Checking in Nov 7, 2015 Laralyn,

checking in! Data is still the same but I was diagnosed with Stage IIb lung cancer in October

2015. It's SCC HPV+ but there's no way to know if it's a very delayed metastasis or a new

primary. Checking in Jan. 2, 2016, I just finished the first half of front-line treatments for lung

cancer. I'd like to remind all HPV+ H&N cancer patients to request lung cancer screenings even

after the three year mark. Studies (and my personal experience) are starting to show there can

be a longer than usual delay in HPV+ cancer appearing in the lung (whether it is metastasis or a

new primary). Checking in January 17, 2018, I see my last update was when I was in first-line

lung cancer treatment, most likely a new HPV+ primary since there was no recurrence at the

original site (tonsil, lymph nodes, soft palate). Chemo/radiation initially worked but at the 6-

month mark, there were very small nodules growing in both lungs. I went into an immunotherapy

clinical trial (dual agent, Opdivo + an IDO inhibitor called epacadostat). About 3 months into the

trial, CTs and then a PET scan were clear--I had what's called a complete response. It's been

durable--after over a year, I'm still cancer-free. Who knows what the future holds, but I'm grateful

for more time in relatively good health! Checking in November 14, 2019 Hello! Life has been busy

and in some ways really challenging... but I'm hanging in there. My husband likes to say of a job

he dislikes, "I'll ride it 'till it bucks me" and that's how I feel about immunotherapy. I was in the

clinical trial until it ended for me (the drug company added a two year limit) and have been on

monthly Opdivo since then. I'm still cancer-free, but juggling most of the immunotherapy side

effects, running the range from common to rare. None have been serious enough to make me

stop treatment thankfully! It's just tough trying to manage all of that and still work full time. Hope

everyone else is doing well. :-)

LaughingGirl (?) Joined forum 02-2013, enrolled August 5, 2013. DX’d January 2013 Stage IV

Right Tonsil w/intrusion to soft palate, SCC HPV. Treatment completed April 19, 2013.

LeoS2323 from England, joined forum March 2012, enrolled on April 2, 2012. DX’d MEC stage IV,

unknown primary, MET to lymph node. Had left sided neck dissection, tonsillectomy and BOT

biopsy and all clear with NED. Checked in February 4, 2013 and having a happy, healthy and

loving life. Checking in Dec 14, 216. Now 4 years 9 months NED - 3 months to go until 5

years officially cured, doing really well. Appreciate every day on this earth - the kids are 6 and 8

years old now. I was 33 and they were just 9 months and 3 years old when my cancer arrived,

which was scary but they kept me strong. They have changed and grown up so much, I treasure

every day with them and am immensely grateful that I can be here to look after them. God bless

all the wonderful and brave folks here on CSN, it reminds me that there are still a lot of good

people in the world. Checking in January 15, 2020. I have been all clear with NED up to now,

January 2020. I am doing really well. Happy and healthy, family are well (daughter goes to High

School this year) and I am a vegan these days! CivilMatt thanks for keeping this running. As one

of the lucky ones now approaching 7 years clear, I often don't check in for longer spells - but it

means a lot to be able to see how everyone is doing when I do stop by. I was incredibly sad to

hear Phrannie51 has passed recently, she touched and helped so many people on this forum

including me. But on a happier note I am really pleased to see so many others from my time as a

regular on the forum and before doing well (including you). Lots of love to all you brave

peopleLetumwork from California. Enrolled an. 30, 2017 Diagnosed with NPC in February of 2013.

T1, N2 Stage 3, SCC Undifferentiated, HPV16+. 3 rounds of Cisplatin concurrent with 35 radiation

treatments followed by more Cisplatin with 5FU. All treatment was performed at John Muir Medical

Center and Stanford. NED since the treatment. Side effects- Peripheral Neuropathy in the hands

and feet, 50% loss of hearing in left ear and some balance issues but very happy to be alive. Had

to retire from the fire service a little early but keeping busy and enjoying life. Still living in the Bay

Area but hoping to move to Idaho when my Daughter graduates.

Lipscova44 from Alabama. Enrolled May 13, 2017, (The Rocket City and home of the Space and

Rocket Center). Daughter of Lipscova44 who was diagnosed with SCC of lymph node with

occult/unknown primary in April 2017 after lymph node swelled up VERY quickly in a matter of a

week or two (actually days if you ask me, but I'm not the patient). Stage 2; HPV and P16

negative, All biopsied areas (surrounding 50 lymph nodes, left tonsil and BOT) negative for cancer.

Only area that "lit up" in PET sca was lymph node before tumor was removed. Tumor was quite

large and about the size of a golf ball (4+cm). Dad had a neck dissection performed by his

doctoron April 17, 2017 and with any luck, will beginning treatment on June 1, 2017 (but is

currently undecided, which is why I am here). My Daddy is my heart and soul, so I am trying to

learn any and everything I can and be there for him as much as humanly possible through this

battle. We have 8 weeks of radiation and immunotherapy, Erbitux, scheduled. All treatments will

either be at Center for Cancer Care or gist) or Clearview Cancer Center. Roll Tide & Go Dawgs

(UGA)!!!

LisaFG01 from New Jersey. Enrolled Feb. 18, 2017 I just found and joined this site yesterday

(2/17/17). After months of endless run around and doctors throwing everything at me but the

kitchen sink-- as my symptoms got worse and ` I was finally biopsied on Jan 26th. At that time I

could only (physically..not just due to pain) open my mouth less than a 1/2 inch. The Dr. at the

Temple oral and maxillofacial surgery center, numbed everywhere she could reach, waited 5

minutes, spread my mouth a bit more, numbed again, waited again and then used a spreader to

literally pry open my jaw to the point where she could take a biopsy. I wouldn't wish that pain on

anyone!! But after she numbed me more she was able to cut in and take what she needed. On

Monday January 30th she called to ask me to come in to come in on Wednesday to go over the

results of the biopsy. At that time she told me “the biopsy had come back as cancerous, and they

had made me an appointment at Fox Chase Cancer Center For Monday February 2nd. I won't go

into everything that I felt and thought at that moment, because this is going to be long enough!

On Monday I met with the head and Neck Oncologist and e scoped up (down) my nose to see

what she could since I could not open my mouth, she ordered a CT scan, and changed the pain

medication from the 5/325 Oxycontin I was on, to 20mg Oxycontin (which I hoped would mean

I'd get more than 45 minutes a sleep at any one time) because, as she put it, I had cancer not a

toothache. On Tuesday, I met with the Medical Oncologist-Who added a 50 mg Fentanyl patch to

my pain management and explained what her role would be if it was determined I needed Chemo.

I also met with the radiation oncologist. He scoped my nose again, explained to me what his role

would be, and talked to me about a possible clinical trial. On Wednesday February 8th at 6:30am

I had the CT with contrast. Went home and then came back to go over the results with the Head

and neck oncologist at 1:30. Unfortunately, she wound up getting stuck in the OR. Her resident

told me she would call me later that day. She didn't, nor did she call on Thursday..by Friday I was

out of my mind, but she did call Friday afternoon. I have Stage IVb SCC of the oral cavity (there is

more to it/has a proper name but my mind is fried at the moment) and because of the size of the

Tumor and the advanced nature (impacting muscle, bone, nerves, two lymph nodes..etc) she

decided--after consulting with several others--that surgery was not feasible at this time. She

wanted an MRI and I had appointments to discuss options with the Medical and Radiation

oncologists on Tuesday. The nurse Coordinator called me Monday morning, February 13th to let

me know she had set up the MRI for that afternoon. The next day I met with the Medical

oncologist, we talked about options for treatment, possible side effects..etc. We decided on

straight chemotherapy with three different meds: Cisplatin & Taxotere administered at the center

and then 5-FU administered over 4 days via a port at home. with a reevaluation after 3 courses to

determine if the Tumor has shrunk to the point that surgery is feasible. My first treatment was set

for Friday February 14th. I then met with the radiation oncologist who explained that while he

would be monitoring my progress, he wouldn't be seeing me again until the point of reevaluation.

Many of you may not understand my next step, but having felt like I have had no control over just

about anything that has been going on with my body, and being told that hair loss was more than

likely with the Chemo I would be having, I decided to shave my head. On Thursday, February

16th, a girlfriend of mine who owns a salon, opened after hours for me and my husband and she

shaved my head for me. Her daughter videoed it, and I shared it with those who have been with

me on this crazy ride (and even those who haven't). Yesterday, (Friday) I arrived at Fox Chase at

7:30am first for blood work, then for the Port placement, and then for the Chemo. Unfortunately,

(and we knew this would be a possibility) they couldn't put in a port because they were booked,

so a PICC line was put in instead. The administration of the chemo went of without a hitch and by

2:40 the pump for the 5-FU was attached and I headed home. I go back Tuesday 2/21 at 9:40 to

see the Medical Oncologist and then at 10:20 I'll have the Fluid and Electrolyte infusions, the

pumped detached and the PICC line taken out. So that's where I am now. I thought I'd tell you all

this before I ask a question. Thank you for listening. CivillMatt says “that was a long one, I hope

everything worked out for LisaFG01”

LiseA (?) Enrolled July 30, 2017 One year post treatment. Mg 4th scan and checkup was two

almost two weeks ago. Another NED!

LitlCJdoll from North Carolina. Joined the H&N forum on August 9, 2019. Happy to be Enrolled in

the Roll Call on September 1, 2020. I was diagnosed on March 13, 2017 by a tongue biopsy as

having Stage III SCC. It was a Very large primary tumor. Located at the Base of tongue, lingual

tonsils, it enveloped the tongue, back to tip.)

CM Side Note: LitlCJdoll has a very detailed description of her life history with regards to her

cancer(s) and her Primary (genetic) Immunodeficiency. She has gone into great detail to provide

us with a careful look at what brought her to the H&N forum. You can review this information

simply by clicking on her picture and following the few steps to her “About me”

page.I’ve had 5 Recurrent tumors, in different places plus a New Primary, which was very fast

growing, invading deep through Floor of mouth then invaded my tongue Flap, 9 months after my

IMRT/ VMAT Radiation treatments. 66 Gy. It survived the radiation. Not good!!Many, many

surgeries,,,The 7+ hour surgery above included Microvascular Reconstruction for free Flap. from

my Scapula / back area. It was the only place he could find to harvest it from, I was 64 pounds

on surgery day. Since then, , my free Flap has failed. It is actually Disappearing,... Some of it is

left, but there is a large Hole in the floor of my mouth now. I can put a finger down into the hole,

it is so large. The flap has never functioned, never moved. from day 1..Unfortunately, I aspirate

all consistencies of Oral intake. Everything. In June, I just had my 5th case of Aspiration/

Bacterial Pneumonia. This one was Bilateral (Double lung) pneumonia due to E. Coli. Drug

resistant E. Coli, . Admitted for all 5 pneumonia. , 2 of them with Sepsis. 2 with Collapsed Lung.I

am 100% G tube dependent.I am a mighty 71 pounds now (September 2021).

My beau, my dearest love passed away May 18th, 2021 due to his Stage IV head & neck cancer

which had widely metastacized. His was HPV +. That was his second cancer. He fought and nevr

quit, for 9 years . He never was off treatment, 2 cancers leukemia and then this one. We had that

in common, the attitude and will to Fight and never quit. Never stop thinking of ways to adapt

and finding a way to Go On.…I see that same Will here among some of the members --- Always

trying to find a way to come back from it all. To Stand Up after a beating, and adapt, and keep

going forward, in whatever the new normal is.That's why this forum is so great --- So many like

minded people, who can then encourage the ones new to this fight, who come here, and give

them concrete ways to move forward, We find that going thirough these life altering experiences

changes us and it weighs upon us to reach out, and try to help the new ones any way we

can.. Thank you, American Cancer Society for this discussion board. Thank you Matt, for enabling

this Roll Call to go on!We are grateful, LitlCJdoll

Littlemisskitty (caregiver to Mother) from Connecticut. Enrolled July 31, 2015 Squamous Cell

Carcinoma of the upper right jaw that leached into the left lymph nodes. Diagnosed May 2014.

She went through surgery in June 2014 and again in October 2014 which removed her right side

of her upper jaw, part of her upper palette and they reconstructed the upper palette and a

prosthesis was made to replace the upper jaw and teeth. A right radical neck dissection was done

also that came up negative. It returned again in June 2015 in her left lymph nodes. She had a

left radical neck dissection which revealed the tumor had grown outside of the gland which was

supposed to be containing it. They removed the gland and the surrounding area along with

severing the suprascupular nerve which he reattached and also splitted to help her regain her

muscle movements. She is currently going through 30 treatments of radiation and 7 chemo

treatments with carboplatin. She's on number two of chemo today and 5 of radiation. So far I

have found this site amazingly helpful. It was such an amazing comforting feeling to know that

others have gone through this before my mom and have so many hints and reassurances that she

will get through this. We felt so prepared for the doctor appointments and for treatmets (although

not sure just how prepared you can be for a life changing event). Thank you for this site and all

the information it has offered so far and I hope it will continue to be a help to me as well as

others.

Ljoy (OM)(?). Joined 2007. Check in Jan 13, 2014, Eight years out from tonsil cancer and doing

great. Still read the board almost daily. Hope everyone has a healthy 2014. Check in July 13,

2015, Right Tonsil. Will be ten years cancer free in September. All is well. Checked in Jan. 6,

2016, entering my eleventh year cancer free. Hope everyone has a healthy and prosperous New

Year.

Logan51 from Illinois. Joined H&N forum and Enrolled in Roll Call on March 8, 2019. I'm new, but

old. Will be 10 years since last Rad. session come the 1st week in April for Stage III NPC

w/unknown Primary. Noticed the two lymph nodes protruding from left side of neck a couple

weeks before I turned 54 in 2008...then the diagnosis w/scans and wait...then the concurrent

Cisplatin Chemo and Rads in 20 places/session x31, followed by only 5 places the last 4

sessions...And just turned 64 late last November without any return bouts with C! Forum helped

me a lot way back when, with Delnative's advice on mouth and teeth issues, for instance, and

Sweetblood22 when she was active. So, knowing how this Roll Call works, though I be old,

consider me enrolled as of now. And, for everyone in difficult time of tx, and wondering if you'll

make it; or, to those just diagnosed- Believe you can and will survive. There are many who have

survived H&N years longer than I have, and so will you...Believe. Checking in December 12, 2019,

Aspiration, due to Rad damage at base of throat and scar tissue around esophagus aperture and

failed swallowing test, made installation of a permanent G-tube necessary on 8/6/19- 10+ years

after my last Rad session. ENT Dr. scoped my throat and said, "I see scar tissue everywhere." Got

68Gys at base of throat and 60 up to chin. Just turned 65, and never to use my teeth to eat

again, or drink using the mouth. Now 14 months being FT-dependent and 11-1/2 years since last

Rad session as of 10/2020, life is still good. Checking in December 11,2021 Endoscopy w/dilation

in August, then failed swallow test a month later sealed my FT-dependency for life fate, and GI Dr.

did say it looks like collateral Rad damage to esophagus- which had no C. But, I'm just 27 days

from being 13 years out with no C return, if the counting starts on the day you get the Biopsy

results. Checking in January 2022 Last year I finally got an Endoscopy with a Dilation, but a

month later failed the swallow test so will be FT-dependent for the rest of my life due to collateral

damage to esophagus for stage-3 NPC. Been that way for over 29 months, now, and quality of life

is okay. Hopefully the only event in 2022 will be with my Dentist to rebuild the tops of my front

lower teeth again. Go figure- I can't eat/chew, but the tops of my teeth still wear down to expose

the teeth innards.

Celebrated my 13th Survivor Anniversary on 12/30/21, life is good, and Thank You Matt for

keeping HAWVET’s Roll Call going. It is a treasure trove to read updates from people like

Skiffin16, and hope some others from the 10+-year Era will do so, also.

Lola5071 (?). Joined forum April 2012, enrolled husband in March 11, 2013. DX’d SCC primary

tonsil HPV+. Treatment completed December 2011, additional surgery in May 2012 due to

necrosis. Due to problems, had more treatment. The March 2012 visit-throat was healed. Followup

scan due in June 2013. Checking in Aug 17, 2015 Husband is doing well. All pet scans have been

clean. Due back in November 2015 for checkup. ENT and Oncologist say cancer free but not sure i

will have believe that.

Lolojldunn (OM) From Montana. Joined in 2007, dx’d with Stage IV Tonsilar cancer. Last treated

August 16, 2007.

Longtermsurvivor from Arkansas. Joined forum in March 2010, enrolled on January 11, 2012. DX

SCC soft palate. Third cancer and still in treatment. Updated on February 1, 2013: Have some

problems, but tolerable. Trismus opening about 20mm. Hard to chew and swallow so on soft/liquid

diet.

Lorig01 from Texas, joined forum July 2012, enrolled March 15, 2013, DX’d Stage III tonsil with

one left lymph node. TORS surgery, all teeth removed, G tube inserted & removed 5 months later.

Treatment completed September 2012. Doing well except with dry mouth issues. Check in Jan

13, 2014, Hi. 1.3 months NED and doing great. Wishing everyone a happy and healthy new year!

Checking in Nov 1, 2015 Just celebrated 3 years NED. Few side effects and doing great. Checking

in February 9, 2018, Happy New Year to all. Just checking in. 5 1/2 years out from treatment and

doing very well. Cannot complain. No major issues and eating well. Checking in August 1, 2019,

All is well here. Diagnosed with tonil cancer 2012. No recurrences so far and eating is back to

normal. Prayers to all.

Lorileona (OM) (wife/caregiver) From Wisconsin, 2005/2008 dx’d with Tongue and lymph nodes

caner.

Lornal from Missouri. Joined forum 09-2013, enrolled 09-28-2013. DX’d Stage IV tonsil in 2007.

Check in Jan 13, 2014 All the side effects I was having were not side effects after all. They are

the effects of a new SCC Stage IV cancer. On Thursday, I will have it removed as well as my voice

box, lower throat (not sure what that means), and upper esophagus. The esophagus will be rebuilt

from a skin flap from my arm. I pray that all goes well and I'll be able to check in next year.

Hearing lost from chemo, cannot swallow from radiation & getting PEG. Vocal cords not working

and restricted airways. Check in July 11, 2015. Checked in Jan 2, 2016, Doing reasonably well.

Working part-time (can't concentrate any more than that), eating too much. Talking with an

Electro-Larynx. Checking in September 29, 2017 A little late checking in - but I'm still here.

Tonsil cancer 2007, hypopharnx 2014 w/ total laryngectomy. Still working part time, learned to

talk using esophageal speech - but use EL when tired. Lorna 2007 & 2014

Loves2readi (?)from Virginia (auto-enrolled). Checking in July 18, 2015 my husband was

diagnosed 12/14 with Tonsil SCC HPV+, we are from Virginia. He finished radiation/chemo Feb

2015 (no surgery) and is doing well (NED!). In March, had tubes in his ears to relieve fluid buildup

from radiation. Getting fitted for CPAP to address apnea, throat must still be swollen or

narrower than before treatment. I am very appreciative of the regulars on this board. My mom

was just diagnosed with Psuedomyxoma Peritonei, a rare pendix cancer, which will be treated in

NC. I am a thyroid cancer survivor, since 2008. On paper/screen it may seem depressing, but we

are surrounded by love and light and don't let this get us down. Grateful to be surrounded by love

and surprised by hope at every turn! God bless everyone.

Luv2cut1 from Colorado. Enrolled January 6, 2011. Husband DX SCC supraglottis in May 2008,

recurrence in neck-March 2009. Checked in January 15, 2012, husband doing well 27 months out.

Now in treatment for CLL (chronic lymphocytic leukemia). Checked in January 21, 2013. Complete

remission. Overall quality of life good. Checking in July 20, 2015 Neck dissection, radiation and

chemo twice. NED as of October 2014. Next checkup April 2016. Still doing well. CM note: There

is a funny story about this members name in the archives.

Luv4lacrosse from Missouri. Joined forum July, 2010. Enrolled in roll call December 28, 2010.

DX’d SCC right tonsil in June 2010, Reported in January 16, 2012 and almost 15 months NED.

Checked in 12-21-2013. CM note: This was a very special and active H&N member.

ts from Michigan. Jan 19, 2014. Diagnosed in 2012 right submandibular gland Adenoid Cystic

Carcinoma. Neck dissection, 33 rad treatments and one year later doing good. Have check up with

CT scan of neck and chest in a week and except good news. Hope all have a good year!

Mapdan from South Dakota. Enrolled April 26, 2017, Living by a beautiful little town on the

Missouri River. I was diagnosed with HPV Tonsil cancer in Aug 2016 and underwent 35 radiation

treatments and 7 chemo treatments. My 3 month PET scan came out clean. No active cancer. I

read about all the different throat cancers and it amazes me. Mostly high cure rates but Hell to

pay for the treatment!!! This site is the best support a person can have. You can talk all day to

family and friends but you folks have gone through the same battles and understand. I have

survived this crap so far and plan to keep fighting. I have 3 kids to watch grow up (triplets). I

recently asked a lady that was at my side through every treatment and hospital stays to be my

wife. I told her we sure have gone through the sickness and health part so lets start living now.

Caretakers are the best by the way!! Back at my job since December, planning on a wedding and

watching my kids grow. So yes I am proud to be on this roll call. Checking in July 11, 2017

Mapdan here. Still kicking and full of energy. 8 months out from treatment (HPV related Tonsil

cancer-Stage IV) and doing better everyday. Would like to get my saliva and taste back but it will

happen. I have faith. Trying new things everyday. Some not so good. Finally starting to gain some

weight back. Getting ready for my wedding coming up. One never knows what today or tomorrow

will bring so enjoy everyday. Checking in on CivilMatt’s orders. I kinda see him as the captain of

this bunch :) He has good advice!!

MarineE5 from Pennsylvania . Joined forum December 2005, DX’d Base of Tongue cancer in 2004,

Penna. Last check-up 05-2015 two thumbs up by my Surgeon. Check in Jan 13, 2014, Read

the board daily, still have several side effects like most, but each day is a Gift. My Best to

Everyone Here. Check in July 10, 2015 Thank you for taking this on CivilMatt and Skiffin16…RIP

HAWVET your work continues----Semper Fi. Checking in September 22, 2016, Good Day

CivilMatt, First let me say thank you for keeping this post going. HAWVET helped many here for

years. He also helped Veterans with their claims with the VA when asked. Doing fine here, had

another "All Clear" report in May 2016. My Best to Everyone Here. Checking in June 3, 2017

Reporting as Ordered Sir! Still doing fine and enjoying retirement. My Best to Everyone Here.

Checking in February 3, 2019 Just a short Thank You for doing the Roll Call that HAWVET started

years ago. I try to check in with the Roll Call when you ask. Again, Thank You for what you do. My

Best to You and Everyone Here. Checking in October 12, 2020 (or as you say “Reporting In

2020”). Hello CivilMatt, Thank you for doing this. I'll keep it short, doing fine here, some new

aliments but nothing that can't be handled. Keep placing one foot in front of the other. My Best to

Everyone Here.

CM says “you can often catch MarineE5 in the chat room.” Checking in Checking in Jan 3, 2022.

Fine here, some small issues popping up but nothing overwhelming. Thank you for doing all of this. Semper Fi

Marywiz15 (OM) from Colorado Joined in 2007, dx’d with epithelial myo-epitelial

carcinoma.Meaganb from Oregon. checking in May 25, 2014 Two years out from treatment of

ACC. Surgery to remove tumor & lymph nodes followed by radiation. All scans remain clear.

Checking in July 19, 2015 Neck dissection followed by 30 radiation treatments. Still NED as of

April 2015

Mechanicman2 from the Washington DC area. Joined forum July 2012, enrolled husband March

17, 2013. DX’d May 2012 w/mass at base of tongue/removed in April??. Had neck dissectionremoval

of tonsils, salivary glands, some nerve & lymph nodes. CT in February 2013 showed

something in cheek. Had PET scan and probably need another CT. Awaiting report from Doctor on

April 5.

Meinken from Georgia, joined forum January 2010, enrolled July 12, 2010. DX’d NPC in January

2007. After some absence in February 4, 2013. At start of 2012, new growth of Maxillary sinus

cancer. Had surgery and reconstruction of eye orbit. Had to remove upper gum and all upper teeth

on right side. Took tissue/bone from right shoulder to rebuild. Three months later, found another

growth behind right eye. Vision blur and may lose it. Good news came on February 1, 2013 and

PET showed NED. (This story needs to be expanded and in a separate post. God bless)

MemphisTn from Tennessee. Enrolled Sep 6, 2016 Adenoid Cystic Carcinoma Aprl 29, 2016 after

removal of sub-mandibular gland was found to be cancerous. Completed 35 rads (66 Gy to

primary site (surgical bed) and 56 Gy to surrounding neck at West Cancer Clinic in Memphis Tn via

IMRT, right side only. Received chemo week 1 and 2. Completed radiation 8/31/2016. Current side

affects include sore throat, swallow pain on right side, sharp pain at tongue base/right side of

tongue, high mucous production (lots of spitting) mostly at night, dry mouth during the day,

especially when trying to carry on a conversation, burn on neck of course and the 'mystery

fatigue' I have read so much about. Diet has been exclusively Ensure Plus and water since about

week 3. Lost about 30 lbs, but continue to drink/swallow on my own. Current pain med is basically

5mg/325 oxycodone/acetaminophen every 8 hours, 2 days being off of fentanyl patch

(25mcg/hr). Use 'magic mouth wash' primarily at this point to curb mouth pain in order to drink

Ensure via straw. Worried sick of course about recurrence/mets but, radiation has given me a

whole new set of issues to focus on for the moment. Hoping that soreness and swelling in

mouth/throat will sub-side in the next couple weeks, less concerned about taste, more concerned

that the sores wont go away, the sores, for me, make the idea of eating, a near impossibility.

Thankful for many many people in and out of my church who have and are praying relentlessly for

me. My prayer and goal is of course, to be able to live to enjoy my kids and retirement with my

awesome wife. God willing : ) Have been lurking for a while, saw the roll call and thought, may as

well. Not much info on ACC as it is, willing to share what little I know. Updated Oct. 4, 2016,

Recovering still, taste is still whacked, cant taste sweets, but veggies, chicken, pork and some bbq

meats are good enough. Dry mouth at night, taking pilocaprine at bedtime and of course keep

water near the bed to get through most nights. Second ENT follow up next week since post rads,

dealing with some spine pain between my should blades, will most likely have to see an ortho to

convince evil Cigna to pay for an MRI that they have refused from ENT. Some sore lymph nodes

every now and then, anxious to discuss with onc at the end of Oct during first Rad Onc follow up.

Back at work, enjoying the weight loss and praying this back issue is from lying in bed for 2

months. Forum is head and shoulders above the rest I looked at, thank you all for your willingness

to share.. Updated Oct. 4, 2016. Checking in April 27, 2017, Most side affects are oddly, on my

opposite side (left), from the side I was treated. Side affects (neurological and physical) seem to

come and go, like a sine-wave, sometimes I can't tell I was ever treated, other than the loss of

taste, other times throat bothers me, dry mouth etc. Anyway, clean scans, though I wish I did not

have odd affects/symptoms on my opposite side. Some days Im more tired than others, but,

reading from others experience, radiation is a life long commitment. Here’s to hoping for another

year of NED.

Metro22, (?) Joined 04-2013, enrolled 12-22-2013. DX’d Jan 2013 SCC Stage IV, right tonsil and

hypo pharynx. 15 teeth removed. Treatment completed July 2013 and taste bud returned mid

October. 85% saliva.

Mgbfoster from Illinois. Enrolling Dec 13, 2016, Diagnosed in May of 2016. T2 tumor at BOT.

Tumor removed in August 2016. Took 30 radiation treatments. Rang the bell on October 18, 2016.

I am very fortunate in that my wife is an 11 year survivor of head and neck cancer as well as

breast cancer. She is a warrior. She coached me every step of the way. This certainly has been a

life changing event. I thank God every day! This site is a wonderful source of information and

support. Thank you all!

MGC (?). Checking in July 16, 2014 Diag Feb-2010 T4,N2c or T3N2. Stage 4 SCC Right Tonsil &

BOT HPV + Multiple lymph nodes on primary side in neck and shoulder. No metastasis to other

side and still NED;-) 33 Rads, 2 out 3 Chemo, (Cisplatin). Completed May 2010. Have the Usual

side effects, chemo killed my hearing and tinnitus as well. Could not receive 3rd dose of chemo.

Dry mouth, nothing even remotely spicey etc etc. All good and happy to be here, adapting along

like we all have to do. Did treatment at Stanford and have no regrets making the regular long 430

mile trek. At the five year mark starting experiencing more severe radiation side effects.

Hypoglosal nerve on primary side starting to die. Developed a slight speech slur and partial loss of

tongue coordination as well and difficulty swallowing (more than usual). Actually choked on lunch

at work and thank GOD was successfully Heimlich to safety. 5 Weeks later my ribs are just now

getting better. Learning to adapt more and chewing and chewing my food even more. Very scary

experience. All in all, still feel real good, working full time plus and appreciate everyone here on

this board. I do not post much but i read often and appreciate the regular posters. Some of the

posters here are just here 24-7 and offer their undivided support to everyone regardless of their

plight. I just want to say thank you to all of you for all of your support. Hopefully we can all

continue to help each other. Have not seen poster Luv4lacrosse around and wonder if he is still

ok? Thanks again to all. Checking in March 11, 2017. Seven Years still kicking. The cure has its

own issues but cancer free for seven years is good ;-} Checking in February 4, 2019 Still here and

happy to be here. Suffering debilitating side effects from rads almost 9 years out Stage 4 SCC &

BOT HPV+Ferocious radiation induced fibrosis causing severe trismus. No Fun but still fighting.

Still NED and going forward. We need a longer term survivoir thread as to not clog up all the new

threads as there are so many. Doing HBOT treatment now as a last ditch effort. They should

make it mandatory for anyone doing rads early on imo. My radiologist did recommend it a few

years ago but I was stubborn and didnt want to take the time off work as there is no place close

to me. Now I am doing it after 9 years. CivilMatt is working on a way to include a Longterm

Survivor category to the RollCall.

Miccmill from New York. Joined forum May 2010. Enrolled (better half) in roll call on April 7,

2010. DX’d Stage IV SCC unknown primary. Two years, 8 months out of treatment. Neck

dissection for two lymph nodes and all teeth removed. Checked in 2013, Lost 83 lbs. Gained 40

lbs back with enough saliva to ignore wate. Works full time. Just visited ENT surgeon and

everything great and due for PET in July.

MICH4EL from Minnesota. Joined forum March 2013. Enrolled in roll call June 23, 2013. DX’d

March 7 2013 with SCC Stage IV, BOT affecting lymph nodes both sides of neck. Rt tonsillectomy,

BOT dissection & selective neck dissection both sides. Radiation completed June 9, 2013 with no

chemo

Michdjp(for her Dad) from New York. Joined forum September 2011. Enrolled in roll call on

December 28, 2011. DX’d on 08-08-2011 w/tonsil and lymph stage IV. He had chemo and

radiation. Used a peg for over a year. Treatment ended October 24-2011. Checking in July 27,

2015 This August will be 4 years Thanks to god. Have faith and always believe never give up.

Checking in Jan 21, 2016, thank you for continuing to keep the Roll Call going. Hope all is well.

CivilMatt

MickeyD from Florida. Enrolled in forum February 4, 2019. Diagnosed with squamous cell cancer

of parotid in Nov, 2014. Had to pull all teeth and then had 33 rad and 7 cisplatin. Did well until

Oct. 2016 when test showed cancer had grown and migrated to right side of jaw. Surgery,

followed by 30 more rad and 7 carboplatin and taxol. Am doing well, but lately, the 63 rads have

taken a toll on right side of face - hearing loss, watering eye, dry mouth or way too much saliva,

swallowing problems, aspirating and presently using a PEG tube. Possible problem - last brain

scan showed some irregularities that are probably effects of radiation but could be my old friend

Mr. C. Next tests in April should resolve things. Despite the radiation effects, I'm able to enjoy

life and still have some fun.

Mikefrom Winthrop (?) Enrolled in forum January 2, 2018. Diagnosed Aug 2017 SCC base of

tongue, 1 node involved. 35 rads and 5 weekly cisplatin, lost 34 lbs, treatment was over 15 Nov,

eating by mouth for 4 weeks now, did have a thrush setback which sucked, PET in February.

Mikemetz from Georgia. Joined forum November 2011. Enrolled in roll call January 11, 2012 .

DX’d Stage IV Mucoepidermoid in February 2009, currently being treated for ORN, otherwise

doing well, next scan in April 2012. Checked in on October 25, 2012. Had Debridement in April

and again on this date. Still NED. Checked in March 20, 2013 and NED for almost 4 years.

Checked in May 22, 2014 Here is an update for my roll call blurb: NED for 5 years. Currently, at

home recovering from left mandible resection on 5/1. Prognosis is good, but a very long way to

go. Checking in July 16, 2014, 6+ years NED, but still dealing with the after effects from rads.

But, it sure beats the alternative! Checking in Nov 9, 2015 radial bone flap resection 6/2015.

Recovering steadily, transitioning from PEG tube feedings to oral-only now. Hope to ditch PEG

tube early in 2016 and get on to dental reconstruction stuff. Checking in Oct. 25, 2016 2015

ended OK. The second resection went well and healed nicely. I had a de-bulking of the resected

jaw line in May 2016, and now working on getting a long denture on my bottom row of teeth.

Implants were not possible due to the thinness of the left jaw in some places. Hope to have that

wrapped up by early 2017. Still having major eating and swallowing problems, but keeping my

weight up with Boost, etc. Checking in on April 22, 2019. Have not been on CSN much in the

past few years, but did post earlier today. I had a g-tube placed about a month ago, to help get in

more calories and reduce the risk of aspiration pneumonia (which I had in January). The tube is

doing its job, allowing me to gain back a few pounds, and feel a whole lot better in general. The

doc says the tube is a temporary trial, but I suspect I'll be keeping it for life. My best to all on

CSN. Mikemetz. Checking in January 12, 2020. In late 2019 I finished a book about my time as a

patient being treated, and then as a cancer survivor with some serious side effects for 11+ years.

The book will be out in May of 2020. My best to all on CSN Mikemetz. Checking in October

2020--Coping well with the feeding tube and staying safe and healthy during the COVID

pandemic. The book came out in May and can be found on Amazon and Barnes & Noble. Search

for "Two journeys in cancer world." All royalties will be donated to the Head and Neck Cancer

Alliance. Mikemetz

missusS (?) Joined H&N forum in July 2020. Enrolled in Roll Call on October 18, 2020. My

husband is 10 weeks post treatment for HPV SCC base of tongue with 35 rads/7 cisplatin.

PET/MRI in 2 or 3 weeks though CTScan 2 weeks ago looked good. Still alot of pain at tumor site

but eats most things except bread/starchy stuff with help of magic mouthwash and aec/cod. Not

much taste and the mouthwash kills that anyway. Maintaining weight and starting to exercise

more. Sleeping better. Bloodclot from PICC line is gone! Treated 3 or 4 different meds for thrush

to no improvement to pain or whiteness of tongue. Doc says he's an outlier for pain and will have

to look at hyberbaric or something for possible ulcer but nobody will act until PET so waiting for

that. Getting therapy/wearing mask for lyphedema. Trying to gin up the enthusiasm to find work

when it would be so difficult to interview. But we laugh alot and know God is in it with us.

Prayers for all of you.

MizBama (?). Enrolled in forum May 16, 2017. Hi all. My husband was diagnosed last week SCC

tongue & lymph nodes. Bot surgery on tongue and throat dissection for lymph nodes is scheduled

for Friday to be followed by rads. Chemo possible. Feeling lucky that if we've got to deal with

cancer its one that has such a high recovery rate. Keeping all my fingers and toes crossed that we

continue to be lucky.

Mls351w from Texas. Checking in Jan 21, 2014, Tardy?...I don't feel tardy.

Diagnosed April 2006 stage IV SSC base of tongue. Chemo, radiation, and surgery to remove 5

lymph nodes in neck. 99.9 % full recovery by May, 2007. Going in for yearly check-ups in July

and October this year. "Life's been good to me so far" Joe Walsh

MMDowns (?). Enrolled in forum July 12, 2017. We are here. Husband finished treatments in

April. He's doing really well. Finally eating three meals a day and the PEG is coming out next

Friday. PET scan is on Aug 1st. We are blessed for every day.

Mokus (?) Enrolled Nov 2, 2015 Diagnosed in July 2015 Stage IV Supraglottal SSC, finished 7

chemo and 35 radiation on September 29th. Feeling better, still have feeding tube and not eating

by mouth fully yet. Have next ENT apt Nov 13th with possible PET scan . A little bit of

scratchiness in throat but all swelling in neck, redness and sores gone. Mostly have taste back

but still no real appetite when I eat by mouth. I lost total of 100 pounds and think I am just so

used to not eating that it doesn't take much to make me feel full. Currently weigh 168 but was

told if I maintain 170-175 for one month and eating all by mouth they will remove PEG. Looking

forward to that and positive news from ENT. Checking in Feb 7, 2017 Still here as well,

insecurities, paranoia and all. 14 months post treatment, 10 months post diagnosis. Just had

latest Oncology NED and doing fine. Finally got back up over 170lbs (was 260+ at diagnosis),

getting strength back gradually but so many mental issues non-related to the stage IV

supraglottal 4cm carcinoma diagnosed with. Happy to still be kicking and thankful to all of people

here who helped me, advised me and comforted me when I needed it most. I wish I was able to

offer all of that to people as well, but I have a lot of issues with socialization, so please forgive my

inactivity and failure to reciprocate fully. You people are awesome!!

momall25ofu (?). Enrolled August 4, 2018. My husband starts treatment August 16th. I figure

we'll be on this site for a while. We get encouragement from the cancer warriors who've gone

before us.

Mom68 from Nevada. Enrolled May 16, 2017, Mucoepidermoid Carcinoma (still hate those

words), low grade. Diagnosed April 2017. Had initial surgery to remove the lesion, and no clear

margins achieved. Awaiting results of PET Scan that took place today, then surgery probably in

early June 2017. Nervous, but glad to be here with a great and awesome group of people! We can

do this! Checking in , January 7,2020 All is well. Love to you all. Checking in October 5, 2020. Hi

CivilMatt! Thanks for doing these Roll Calls! On a good note, My cancer was caught early, and I've

been cancer free ever since. I still have my super tiny oral nasal fistula. Other than having a

dehydrated mouth (due to all the salivary glands being removed from the roof of my mouth), I'm

great. If you are reading this, then welcome and please know that you too can get through this.

We're here to support you.

motorcycleguy from Idaho. Enrolled December 19, 2019. Diagnosed NPC (Nasopharyngeal

Cancer) December 2018, after it had traveled to neck, and had the lump removed. Finished

Radiation, Cisplatin in March 2019, finished 5 FU in June, 2019. First PET was clear - life is good.

Checking in October 7, 2021. Finished treatment 16 months ago, all tests to date have been good.

Next test in 2 weeks. Taste has come back good, neck a little stiff, and I still have Neuropathy

(numbness) in my hands, forearms and bottoms of my feet. But, overall energy has come back

and life is currently very good!

MrBsD from Wisconsin Checked in July 15, 2015. SCC, Base of tongue and mets to a lymph node

on each side, non-smoker, HPV negative. D-Day July 23, 2014! I had 33 sessions of IMRT and 8

infusions of Erbitux. It is almost one year since Diagnosis Day and I feel very blessed to have just

mild lingering effects from treatment. Thank you to all of you on this site for the support!

Checking in February 4, 2019 Here! It's been 4 1/2 years since my diagnosis. (BOT, never smoked

or drank, HPV neg, just a genetic fluke) Just finished a refresher course for swallowing issues,

some PT for neck stiffness, therapy for lymphedema and tweaking of medication for my damaged

thyroid. Other than those inconveniences, I am busy and blessed! I won't ever forget the help of

the CSN members during the rough spots!

Mrs.Sarge (?) Enrolled October 24, 2012, joined forum April 2012, DX’d stage 1 SCC vocal cords,

NED. Voice not the best but thankful. Checked in January 7, 2013 and voice better. Several scans

and all NED. Rechecked in on January 21, 2013. Checking in Feb 1, 2014, Still doing fine! So

thankful I'm still ok. It's been over 1 1/2 yrs since radiation. Checkups every 3 months. I guess

no more MRIs unless they see something. I read about your journeys nearly every day, don't add

much since my treatment was minimal. Hoping for each of you to win the fight! You're ALL my

heroes! Check in July 13, 2015. Terrified and not knowing the future. This board has helped

tremendously. I don't contribute much since my DX was Stage 1 and the treatment so much less

invasive that most but I read almost daily! So far I'm NED and a thankful person!! Rooting for all

of us!!!

nancytc from California. Enrolled February 11, 2018, Hi! I am excited to report that I am 10

months post treatment Right Tonsil and three lymph nodes Stage 4a, and doing reasonably well.

Went through TORS robotic surgery to remove 4 tonsils and base of tongue resection, then 33

rounds of radiation and 2 mega doses of Cisplatin. Long term side effects suck, but are doable.

Progress seems at a snail’s pace, but there is steady progress for sure. I love this group and check

on everyone’s updates every couple of days. We are definitely a unique bunch. Love and prayers

to all. Nancy. Checking in February 18, 2019 I was Stage IVa Right Tonsil with 3 lymph nodes

infected, and diagnosed in Dec 2016. My treatment consisted of 33 rounds of Radiation Jan-Mar

2017 concurrently with 2 megadoses of Cisplatin (I had significant hearing loss from the Cisplatin

and had to skip the final one). I does have many long term side effects like serious swallowing

issues, dry spots on my eyes, digestion difficulties, but I work hard every day to work to get

better, and also to have FUN and stay as healthy as humanly possible!!! I just swam with the

Manta Rays last week in Kona HI, as well as enjoying dozens of amazing hikes in the lava fields.

Life is VERY GOOD INDEED!!!!!

Nancy24 from Utah. Enrolled November 14, 2016, Husband, was diagnosed with HPV+

oropharyngeal (left lingual tonsil) and positive lymph node on left side of his neck in May 2016.

Had 35 proton beam therapy treatments at Scripps with 7 concurrent Cisplatin in July and August

2016. First CT scan two months post-treatment was positive...primary tumor had convoluted and

lymph node in neck is 9% of original size. Eating normally (with lots of sips of water) since one

month after final treatment. He needs to gain 30 pounds back.

Nanny2A (?). Enrolled Aug. 31, 2016, New member, female, age 64, diagnosed with SCC of right

tonsillar pillar after small tumor, (less than 2 cm), was found in July. Stage Ib according to charts,

(TIS/NO/G3). I had radical resection of the tonsillar pillar sugery on July 25 to remove the tumor.

Ct-scan showed that this was the only area affected and that neck, lymph nodes and chest are

clear. Biopsy taken at surgery said surgical margins were free of carcinoma but peripheral

margins involved by SCC in situ, so radiation therapy is being scheduled within the month after

throat is completely healed from surgery. No chemo, however. Would love to know more about

radiation from real people, with information on side effects and how to best deal with them.

NeoTheron91 (?) Joined forum September 2011, enrolled March 12, 2013, DX’d Stage IV NPC in

November 2011. Still surviving. Checking in Feb 5, 2014 I am still OK even though up and down

of new normal life. Still surviving.

Netracer61, (?). Joined forum January 2011, enrolled on April 2, 2012. DX’d

esthesioneuroblastoma in 2001. Recurrence and radical neck dissection, chemotherapy 2005. ENB

recurrence, cheek, eye. Surgery and vision damaged. ENB recurrence, optic nerve, left eye, sinus

w/surgery. At checking in on May 18, 2013, undergoing Proton Beam Therapy. Best Wishes.

Checking in Jan 15, 2014, Still fighting! Just a few months out from round five of ENB but I am

still here.

Nick770 from Ohio. Joined forum May 2012, enrolled August 30, 2013. DX’d May 2012, Stage

IIIb, tonsil cancer; Metasis Sep 2012 to both lungs; Surgery/lobotomy Oct 2012 of R lower lung.

Started taxetol/5FU in June 2013. Chemo had zero effect on new tumors. Currently no treatment,

but possibility of new clinical trial in fall. Best wishes. Checking in May 28, 2014 orig in tonsil,

mets to lungs, skin, bone, ribs, liver. still fighting

Nidociv from Ohio. H&N member since Sept. 23, 2009. Enrolled Oct. 7, 20116 DX May 2008 Stage

4 BOT and into nodes on left side of neck. Did Chemo and Rads, No surgery then. Same

swallowing and saliva problems ongoing. Getting ready to schedule my 2nd surgery

for osteoradionecrosis. 1st surgery, we tried the easier way ( tissue and vessels from Leg) Now

they will do a complete jaw bone replacement with bone from my lower leg. Having this done at

The Cleveland Clinic. Not looking forward to this, the 1st surgery was way more than I imagined

but we got to push on. Also have done 60 HBOT treatments for teeth extractions and the last oral

surgeon I used, broke my jaw and I now also have a very P.I.T.A. titanium plate that has a piece

coming thru my jaw. Yes there's a hole with metal sticking out. That will also be replaced in

surgery. Thank God I am NED since original treatment. Good Luck everybody and God Bless.

NJMOM (?) Enrolled July 30, 2015 Husband diagnosed 7/2/2015 with Stage I Base of tongue

cancer.

NJShore (K&D) from New Jersey, joined forum November 2012, enrolled Jan 7, 2013, DX’d

October 11, 2012 w/Stage IV left tonsil cancer, metastatic to left neck. 3 involved lymph nodes of

which 2 are extra capsular. Still undergoing treatment as of enrollment date. Checking in July 19,

2015 it's not an easy road, but a road worth traveling -- and we were fortunate to find this

awesome place and incredible people to guide us through. Checking in March 2, 2019 Well our

Name or Login might be a bit misleading in the future.. we are now moving to be residents of

Texas, just a tad north and east of the city. (Sorry Skiffin16, I should have noticed your recent

trip a tad sooner.. I would have made you dinner! - put us on your next Texas trip list!) D is doing

very well, he is seeing some side effects, bronchiectasis - the radiation treatments although

helpful were a bit damaging to his lungs and he’s lost elasticity in some bronchioles at the most

top part. So far just one difficult bout and hospitalization and we know how to avoid it now!

Having a pulmonologist who will jump in with meds early is key!

Although I wanted him to retire early in 2012 when he was first diagnosed with stage 4 tonsil

cancer, he chose to keep working. He’s retiring this year! I am sure he will still be doing

something part time, but we are ready to see him enjoy life more and taking advantage of time

that we thought he’d never have :) I am anxious to read up again and catch up with those that

are here. For those that are new.. it’s a great place, with tons of information and people that

helped us when we were against the odds. I am grateful for each and every one of you. Hugs,

K&D . Checking in Bursary 2022 NJShore checking in from Delaware for 2022. Dan and I (Kari) are doing well!

Dan was diagnosed in 2012, so we will celebrate 10 years more since his diagnosis on October 11, 2012! His

only long term side effect thus far is Bronchiectasis. A side effect of radiation that skimmed the top of his lungs,

we have learned a lot of new tricks in the ER, so it really has become easy to manage CivilMatt, I hope I did this

correctly! Thank you for all the work you have done to keep us connected! 🤗

Noellesmom from Alabama. Joined forum August 2010. Enrolled on April 2, 2012. DX’d

inoperable advanced hypo pharyngeal and BOT cancer in April 2010. Checked in January 22 and

June 21, 2013 and reported NED in November 2012. Had some after effects and separately

treated for COPD and osteoporosis w/spontaneous fractures. Still unable to work. Checking in

July 16. 2015, 5 years post-treatment for inoperable late stage hypo pharyngeal and base of

tongue with lymph node involvement. He has developed dysautonomia likely as a result of his

treatment. Checking in April 26, 2017, He has had multiple small and large strokes over the past

year but is doing fairly well. He is 7 years post-treatment from hypopharyngeal cancer with a 23

percent 5 year survival rate. Main issues continue to be fatigue and blood pressure issues.

Checking in December 29, 2017 Rest in Peace.

NousDefions (?) January 19, 2013. DX’d June 27, 2012 w/T2N2CM0 Stage IV SCC, primary right

tonsil. Left and right lymph node involvement. Treatment completed and given NED on November

16, 2012. Went into 1st surgery weighing 225 pounds and after treatment, weighed 165 pounds

(-60 lbs). Feels great and look forward to deploying. TY if you are serving in the military. I also

proudly served.

NW DINO (?) Checking in Nov 5, 2015 Just celebrated my 5 year anniversary! Have not posted

in a while but do check in occasionally. Diagnosed September 10, 2010. SCC BOT HPV 16+ 1

Cisplatin followed by 4 Erbitux. 35 radiation treatments.

n2horses97 from Florida. Joined and Enrolled in February 2020. Checking in on February 3,

2020. I am caregiver to my husband who is 66 years old and dx’d with HPV16+ OPSCC T2-

3N1M0, in June 2019. Began 33 proton therapy treatments July 15, 2019, with concurrent Erbitux

(6) and Taxotere (5). Both "chemos" are radiosensitizers, and he had a very robust reaction. He is

still getting all meals through a PEG over 5 months post-treatment. Still very raw base of tongue,

throat, and is haking up blood clots from his throat. Post treatment f/u visits in Dec 2019 & Jan

2020 inconclusive for residual primary b/c of so much inflammation. Scheduled to return to MD

Anderson 2/18/ for 3rd f/u. Praying daily for NED.

Okeydokey (caregiver and wife) from West Virginia. Enrolled February 5, 2019 checking in. We

are still here. Checking in May 3, 2019. Hubby's update, he is not doing well, the cancer spread

to lungs and bones and was diagnosed in June of 2018 as having SCC, Stage IV, 35 radiations

some chemo and keytruda which has been stopped due to his having pneumonia. Still, he will

never ever give up till the end. He now weighing 97 lbs. He really is an awesome warrior and

continues to fighting.

Olivia from New Jersey. Checking in Feb 17, 2014 Sorry, haven't checked the site for a long time.

I'm doing fine with ENB. My operation and treatment (2011 Oct-2012 Feb) at Hospital of

University of Penn (HUP) in Phili PA were EXCELLENT! Found another rare cancer, medullary

thyroid cancer (MTC), and had thyroidectomy in September 2013. I'm still adjusting thyroid

hormone treatment now. Thank you very much for the Roll Call.

Olybee from Washington, joined forum June 2011, enrolled July 21, 2011. DX’d state 4 HPV +

tonsil cancer in April 2010. Surgery to remove tonsil and 35 lymph nodes. Checked in March 7,

2013. Still having difficulties with swallowing, dry mouth and issue with taste buds. Reported on

10-14-2013.

Ooo, from Massachusetts, joined forum March 2012, enrolled on April 2, 2012. DX’d SCC oral

tongue in February 2012. Tumor removed April 2012. Checked back in March 14, 2013.

Osadmed from North Carolina. February 21, 2016, dx Aug 2015 Adenoid Cystic Carcinoma of

Supraglottis also found unrelated Renal Carcinoma. Surgery Sept2015 Partial Criccoid

Layngectomy UPenn Oct2016 Renal TORS UPenn, 32 sessions imrt Radiation Hopkins Nov -Dec

2015 trach throughout, nasel Feeding tube post op until rad. Organic mainly vegan feeds with

Integrative Chinese medicine, acupunture , massage and Chiropractic minimized side effects

throughout. Thanks for all the support of my Family and Friends Returned to work Feb 15 2016

Thanks for hosting! Please contact me with questions or ACC contacts.

Osmotar from Arizona. Joined forum July 2011, enrolled January 6, 2013. DX’d Stage IVa rt

tonsil, 1 lymph node. Started chemo August 2011/radiation November 2011. NED when enrolled.

Checking in Aug 16, 2015 Hi all, everything going well in AZ , working full time , exercising ,

living life , a little dry mouth now and then but nothing drinking water doesn't take care of , each

6 month visit has been NED, Dec 31,2015 will be 4 years out of treatment. I check the site now

and then , blessings to all of you. Check in July 1, 2016, I'm at 182 days until I am out of

treatment 5 yrs ,my onco when I saw her in April 2016 finally used the words cancer free , my

health is still good, working full time , " living the dream" as someone recently said . My next

onco & ENT appointments CivilMatt. osmotar here ,I celebrated my 5yrs cancer free Dec 31,

2016 , saw my oncologist & ENT for the very last time April 2017...still living the dream , eating

healthy , kicking butt in CrossFit, going to enter my first strongman competition Oct 2017. While I

don't stop in very often anymore, this group was and always will be a wealth of

information ...blessings...osmotar. Checking in February 6, 2019 7 years and still going strong ,

no remaining major complications , still experience dry mouth . Blessing to all osmotar

Pam M from Kentucky. Joined forum November 2009, enrolled January 31, 2010. DX’d SCC BOT

pm October 24, 2009. Reported back on February 3, 2013 after MIA in 2012. doing well except

minor post treatment issues. Checking in Feb 22,, 2014 Doing well, with some minor post

treatment issues. Doing SO well when it comes to eating, I'm now on a diet. Checking in Sep 5,

2015 DX almost 6 years ago (Stage IV Base of Tongue) - December marks 5 years since last

treatment (surgery). Dealing with side effects of treatment; doing well. Very glad to see so many

still here. Keep fighting the good fight, everyone! Checking in Sep 5, 2015 December marks 5

years since last treatment (surgery). Dealing with side effects of treatment; doing well. Very

glad to see so many still here. Keep fighting the good fight, everyone!

PapaPaul from Texas. Enrolled Aug 11, 2015. Approaching 3 years since diagnosis of stage IVa

SCC HPV+ unknown primary November 1, 2012. PET located second tumor in left tonsil.

Tonsillectomy on Dec 20, 2012. Six weeks of daily radiation and Paclitaxel chemo once weekly for

6 weeks started in February and was completed March 18, 2013 . Due to hyper- sensitivity to

chemo drugs only finished 2 rounds of chemo treatments. All scans have been NED next scan Aug

31, 2015. Most taste has returned although some things have changed and taste buds seem to

"wear out" about every 2 - 3 weeks but they do return within days. Back to work full time for last

18 months which requires me to travel extensively. Life is good! Checking in Feb. 20, 2017

Everything fine until 2016: Almost exactly my 3 year anniversary, I had a heart attack and bypass

surgery in March. December 2016 diagnosed with prostate cancer. Awaiting treatment options

from my original oncologists. Here I go again, new dance same old partner…

Pclark21st (?). Enrolled June 6, 2019. Checking In for boyfriend. Dx 12/15/17 Stage IIII/IV

tonsil cancer HPV +. Was given 2/3 days to live, had emerg trach and Gtube. Went through 40

rads and 3 Cisplatins. Hernia from coughing. Wk in hospital from aspirated pnuemonia. Clear PET

6/8/18. Trach and Gtube removed. Clear 6 mos scan. 9 mos scan in Jan 2019 showed activity,

confirmed with PET and biopsy at medialstinum. Orig thought MET but decided local recurrence of

downward growth of original tumor. Had pleural effusion requiring drain tube during treatment.

35 Rads and 6 Cisplatins. CT showed reduction of tumor. Praying for clear PET on 6/12/19.

Never giving up.

Patricke from Florida, joined forum Aug 2006, enrolled on January 19, 2012. DX’d Stage IV, base

of tongue in July 2000. DX’d w/tumor at entrance to trachea in April 2011. Larynx removed.

Checked in March 06, 2013 and life is good and hope we all keep moving forward. Checking in

December 29, 2017 I am checking in happily still alive and kick'in, and just happy to be here. I

did have another war with the Beast last January when some tumors were discovered on the soft

palate in my mouth. The tumors were removed, and the excavated spaces were filled in with

flaps from the exterior lining of my stomach; which is pretty amazing. I am very active with

family activities, as well as hiking, camping, canoeing, jog/walking, biking, and gym ratting. Life

is so good, and I am oh so thankful. I have always appreciated life, but of course even more so

now since having survived multiple wars with the Beast, as well as a number of additional

recovery related, severe health challenges. To anyone who may read this who is dealing with the

challenges of treatment and recovery, I heartily encourage you to hang in there during the darkest

times, no matter how tough it may be, taking it one day, hour, minute, or second at a time, and

you will get to experience the brightest times. Use your support systems to get you through, such

as family, friends, support groups, and therapy; you are not alone. Always remember: recovery

is a marathon, so pace yourself, and be very patient with the process. You Can Do This! Lastly,

Keep It Mov''in Forward! I submit this with love to all. Checking in January 9, 2018, STILL

HAV'IN FUN. It is great to hear from and about so many of the folks who I have been wondering

about. Life overall, has been and is great. I have been having more fun than the law allows,

especially hiking and camping in south Florida, and last summer, in the White Mountains of New

Hampshire. I did, however, have another battle with the beast about this time last year, when, a

couple of tumors were found in the soft palate of my mouth, requiring another dance in the

surgical suite at Beth Israel-Mount Sianai in NYC. The interior of my mouth on the upper right

side was remodeled using a flap of tissue from the exterior lining of my stomach, to fill in space

where the tumors were removed. Oh, did I mention that the tumors were attributed to, wait for

it, the ever popular radiation therapy; the gift..... After going through the usual post surgery

recovery gauntlet, I was back on the trails again by June. No radiation or chemo were necessary.

Actually, I don't believe that I am a candidate for radiation any more, given all of the fibrosis of so

much tissue in my neck. I plan on heading back to NH this summer, for a month or two, camping

in Gorham, to go all mountain man and bag as many peaks as possible. If there are any hikers

out there who's would like to join me on some hikes, on any level of difficulty, drop me a

message. As always, I am just happy to be here. Best wishes to everyone to have a most

excellent year. Checking in February 17, 2019 Hey CivilMatt, it's great to see that you are out

there, and hopefully lliv'in large, hav'in a ton of fun. I'm still alive and kick'in after another round

with the beast in 2017. I'm doing great now, and hav'in more fun than the law allows venturing

out into the wilderness swamps, forests, and on mountains. Let's all Keep It Mov'in Forward!

Patricke. CivilMatt ‘s respect for Patricke contnues on it upward trajectory as he learns more of

his story.

Pattyanny, New York, joined forum July 2009, enrolled November 27, 2010. DX’d Undiagnosed

prid necmary head ank in June 2009. Enrolled November 27, 2010. MIA in 2013 and checked back

in on February 10, 2013.

Peggylulu, Texas, joined forum December 2012, enrolled February 2, 2013. DX’d SCC on scalp in

2011 . It was removed by MOHs surgery in Dec. of 2011 , then in April of 2012 I found a lump on

the side of my neck . I had surgery and 3 Lymph glands removed also did Radiation . 33 Rads

finished On Oct. 26th 2012 . Funny how you never forget that date !Had a recurrence the next

April so another surgery . NED ever since. Checking in Aug 1, 2015 It's so good to see most of

my friends are still here ! A big thank you to Civilmatt and Skiffin16 for all that you do for

everyone and this great site ! Checking in January 29, 2016 I'm still here and doing well . Still

have no salvia , but taste is much better except for sweets which were always my favorite . i have

a PET scheduled for February 9th and feel very hopeful that I will still be Seeing MR. NED. I'm

sorry I don't check in very often but as you know my problems were so much less than most on

this forum that I don't feel like I can offer much help . I'm so happy to still see some of the

survivors on here that I know and sad to see the ones that are not . Thank you again to CivilMatt,

skiffin16, Phrannie51 and all the others that have been so much help to me and

everyone. Checking in January 2022 Skiffin16 checking in Matt. I'm still alive and kicking and

doing well, other than as you mentioned, summer teeth. Thanks to radiation, the gift of live that

keeps on giving.

I continue enjoying retirement, art and photography as well as fishing here in Florida.

As for art, last year was pretty good. I sold a few originals, a few prints, and took many awards. I did

step by step demos for three different colored pencil magazines, two of which were on the covers also.

I also had a piece accepted into the Artists for Conservation Exhibit in Vancouver BC Update on a few

members I'm aware of and that I see and interact with on FB. Tim C is well and living in Alaska, Jeff S

is still ornery and won't say where Hoffa is. Unfortunately a few were lost this past year, my best bud

Dawn passed, as did John G.

To all here, stay healthy and NEGU - Never Ever Give Up. John

Peneloppe (caregiver) from Montreal, Canada, Enrolled January 28, 2018, He was diagnosed July

2017 Nasopharyngeal squamous cell carcinoma with locoregional lymph nodes metastasis and

Epstein Barr Virus.35 radiation with 6 schedules cisplatin chemo, was unable to do last chemo,

was hospitalized for febrile neutropenia and malnutrition at end of treatment, developed sepsis

but made it’s now 3 months post treatment doing well in general. First ct scan showed 50%

reduction of cancer, which is not what we expected, now it is wait and see.

Phrannie51 from Montana, joined forum March 2012, enrolled, April 2, 2012. DX’d NPC Stage III,

T1N2M0 on March 26, 2012. Checked in January 18 and May 26, 2013. Check in July 15, 2015

Last Onc checkup in May, 2015...all clear....last ENT checkup July 2015....all clear.....scan

scheduled for Aug. 12, 2015....praying for another all clear. Checking in June 24, 2016. Had a

recurrence in October, 2015 in nodes by my collarbone. Modified radical neck dissection Nov. 13,

2015....another 25 rounds of radiation ending Feb. 10th, 2016.....PET scan in May showed

clear....NED :)!!! Checking in February 5, 2019 (I’m still here) Phrannie, Mt.....been here a very

long time, it seems....lol

PJ47 from North Carolina. Joined 09-2013, enrolled 12-18-2013. DX’d 08-01-2013 w/BOT SCC,

Stage 3 or 4 (depending on the MD) T1N1M0, HPV 16+. TORS surgery to BOT & 22 nodes

removed on 09-06-2013. Declined chemo. Still in radiation till after Xmas. Complications after 2

feeding tube surgeries. Update 33rounds of radiation ending in Dec 2013. 2 PEG tubes (never

used for food, but had to irrigate anyway). 8 front teeth filled so far and 2 cataract surgeries 1

year following treatment and now shingles. Got rid of the HPV virus with AHCC. Whooping it up

in Montana now and eating peach, chocolate, and hucklberry pie and ice cream. Also kayaking,

swimming and dancing to work the calories off. Loving life and all its ups and downs. Check in

Jam 13, 2014, July 13, 2015. Checking in February 27, 2016. Happy to be here. Still working at

Hospice part time Two years out, having mostly dental issues since radiation, but also had two

cataract surgeries. Experiencing joint pain and uncertain of etiology. Could just be "old age"

haha. Pushing 70 and pushing forward trying to make every day meaningful and joyful. Peace, PJ

Postie65 from Saskatchewan, Canada. Joined forum February 2013, enrolled February 12, 2013,

DX’d November 19, 2012 w/early Stage II SCC of tongue. Had partial glossectomy and removed

part of tongue. Still undergoing treatment at time of enrollment. Checking in February 29, 2016

I haven't been on this website much since I started my recovery, so it is so great to read the

success stories. I had Stage 2 tongue cancer, I had 1/3 of my tongue removed (the right side

from front to back) and 30 radiation and 2 chemo (supposed to have 3 but was too sick). I didnt

get the feeding tube and lost 55 lbs in a month and a half. In hind sight I should have taken the

feeding tube. But in July of 2016 I was told by the Cancer clinic here that they don't want to see

me anymore...a break-up that I will gladly accept! Dry mouth is still a bit of a problem...white

chicken meat, bread, crackers...that kind of stuff doesn't really go down without a big glass of

water. I am used to my new normal in the taste department, but for the most part everything

tastes fairly normal. I get the odd muscle spasm in my neck/jaw area sometimes and have very

limited movement in the stretch of my neck muscles. My teeth started to chip right away and are

getting to be pretty bad. I guess I will have to check into my options for this issue. But I really am

back to normal. I live a bit healthier than before and try not to sweat the small stuff. I travel as

much as I can now too, because one never knows what the future holds. But I turned 50 last year

and I couldn't have been happier! Bring it on.

Prmatzke (?). Enrolled January 8, 2018. Joining the group! Hello, all! I was diagnosed with

squamous cell carcinoma on my tongue and 9 lymph nodes in February of 2017. I completed my

last stage of treatment mid August, and my PET in November was all clear. I want to say thank

you to your many contributions on this site. You all have given me honest answers to questions I

had about my treatment and side effects. I am healing fairly well, but hope that this trend will

continue as I am still unable to eat “real“ food and still suffer with intermittent stomatitis . All

that said though, I am grateful to be alive and relatively well! Again, the support of shared

experiences has helped me tremendously, and I hope to continue to learn more from you all as

our journeys continue.

Psychedoutca (?) Caregiver for husband. Enrolled July 10, 2017. My husband was diagnosed

with NPC SCC metastatic lymph nodes in January 2015. He went through the standard chemo,

with docitaxol, 5-fu, and Cisplatin. In addition to a brutal standard radiation. He went into

remission until December 2016, where they found mets on his bome sacrum in hip. He started

gemsar, and cisplatin, only to have a reaction to the cisplatin, and finished with the gemsar when

the mets grew. He started Nivolomab, and ended that in June of this year. when they found mets

on his liver. He started an experimental drug today in Bay Area. We are cautiously hopeful as he is

doing well , young, and relatively healthy. We have four children who are still school age and

looking to buy as much time and explore all options for as long as possible. Checking in January

17, 2018, Still here! Have not checked in, in awhile, but he is still here. Stage IV Nasopharyngeal

squamous Cell Carcinoma, with mets to bone & Liver. Since last check in we have gone through a

few clinical trials, and cancer has progressed. His liver is covered with mets. As of last month the

oncologist said it’s tine to prepare. We received Foundation genetic testing indicating a possible

sensitivity to Ibrance. We start that soon. It’s not covered for H&N patients only breast cancer, but

we are going to try anyway, he is on 46, we are not going down without a fight.

Rachel12srsuv from Pennsylvania. Joined forum 02-2013, enrolled 03-08-2013. DX’d Stage 3,

NPC in May 2000. Radical neck dissection, right side involving 2 lymph nodes. NED on 08-28-

2000. In 13th year and recently DX’d w/Dysphlagia. No food of fluid orally till retrain swallowing.

Checking in, Jan 21, 2014 still here! Its been a year since what could be permanent Peg tube has

been in, still annoying, but handling it is easier! Got to find something to be happy with side

effects of Ensure plus therapeutic Nutrition has seriously affected my BMI in a good way so from a

diet i started in 2012 till now i am at my goal and 70lbs lighter size 8, which I don’t know if T ever

wore! Still fighting for SSD finally have hearing date on April 9 @ 11 am in Elkins Park Pa anyone

near there feel free to come and support me and our fight when cancer has taken to much! I

have found a few of you on Face book would love to find more of my friends there, having issues

with E mail sorry Matt got your msg wouldn't let me send back , i need your funny attitude! If i

know you i will accept its under Rachel Wilson my daughter Faith with a Frozen doll on Christmas

is on page! I WAS HOME THIS YEAR! Pray for you all every day, love you all hope your happy!

Much Love. Rachel12srsuv if your email address is still the same I might try to send you

something in 2022 CM

Raddude from North Carolina. Enrolled Aug 15, 2016, Diagnosed with StageIV scc in October

2015. 7 rounds of erbitux and 35 rounds of radiation. Finished treatment 3/7/16. first PET was

negative and now on a new normal life. Checking in Feb. 4, 2017. 3 Scans since and NED on each.

I have regained strength, weight and taste. Life is good. All my fellow warriors are in my thoughts

and prayers.

Ratface, from Illinois. Joined forum 08-2009, enrolled. DX’d July 2009 BOT, T1N2BMX, Stage IVBOT-

2 nodes right side, selective dissection. 11-30-09 9 nodes removed. Checked in 09-25-2013

and getting ready for another cold, cold winter. Checking in July 21, 2015 Lots of friends here

Still here! Checking in October 19, 2019 (10 years here) Hi everyone, I'm doing really well 10 yrs

out. Grateful to still be typing! I was BOT stage four, cisplatin, 39 RADS, and a neck dissection.

CivilMatt

Redbanker (caregiver) from New Jersey. Joined forum May 2011, enrolled on January 21, 2012.

Enrolled BF. DX’d SCC BOT HPV + T1N2a, Stage IVa on March 2010, After a consultation with his

doctor at Beth Israel (NYC) and a trip to Johns Hopkins, he went with treatment here at the

Jersey Shore. It was the standard 35 doses of radiation via IMRT and three cisplatin. All things

considered, the cisplatin was the worst of it, but Ativan was a life saver. He never got a PEG and

ate--with great difficulty and perseverance--throughout.. Checked in February 1, 2013. Taste back

and no saliva problems. Reported on 12-28-2013 that had CT previous day. Thyroid probably

failing and ear buzzing. Taste at about 98.5%. Checking in July 22, 2015 4 YEARS OUT Taste

came back in stages though he tells me even now apples don't taste as wonderful as they once

did. Some hearing disability from the cisplatin--he did have the dose reduced for the 2nd and 3rd

treatments. The big residual is his failing thyroid that we can't quite get ahead of….I always read

the board and am so happy to see so many get successfully to the other side of this challenging

treatment--as our medical oncologist told us, outside of some leukemia’s, this is about the worst

of the cancer treatments. Especially glad to see my spirit guides Skiffin16 and Hondo still here

giving with such generosity. Checking in Jan 13, 2016, We are now starting to check off our 5-

year anniversaries. It was during the first week of January '11 that a lump on the left side of his

neck became noticeable enough for Nick to mention it to me. So, four and a half years out from

the conclusion of treatment in June '11 -- things are going well. No teeth problems this year, but

they are the gift that keep on giving. The main residual complaint is a lack of energy or an

energy store that is easily expended. All indications are that this is a thyroid problem, but last

test did put him in a normal range.

Remington25 from North Dakota. Joined the H&N forum on December 2020. Enrolled in the Roll

Call on September 14, 2021. I was diagnosed with SCC HPV16+ in October 2020. On 11/18 I

had radical neck dissection and then began chemo and radiation on 12/28/2020. My first follow-up

PET scan was 4/15 and was NED. I have a second scan in October.

Revbyrd (?). Joined forum December 2013, enrolled January 6, 2013. Had sore throat for 8

years and DX’d October 2013 with stage 4, SCC right tonsil and 2 lymph nodes. Undergoing

radiation and chemo at time of enrollment. Doing okay.

Roar (?). Joined forum March 2013, enrolled May 19, 2013. DX’d unknown primary. 37 cisplatin

partial neck dissection.

robswife87 (Caregiver). joined forum March 2013, enrolled March 8, 2013. Wife enrolled

husband DX’d SCC left tonsil, 4 lymph nodes, 2 on other side. Undergoing treatment at time of

enrollment. Checking in Jan 21, 2014 husband is doing great! Haven't been on in a while.

Computer is down. He is 7 months out of treatment and doing well. 50 percent saliva taste is

coming g along. Got back in his semi this week and heading to Florida tomorrow. He did end up

on thyroid meds a month ago. Weight is stable and diabetes has been beat. P.S. Typing on a

kindle sucks Checked in July 15, 2015. No surgery, just (radiation and chemo). July 6, 2015

NED and doing great. Check in Aug. 21, 2016, my husband is 3 years 3 months out and still NED.

Suffers from myoclonus but Keppra keeps it under control. Had some muscle spasms for a couple

months but seem to be gone.

Rochester1950 (?) Enrolled Dec 21, 2016. Merry Christmas & happy HEALTHY new year to all!

Diagnosed with esthesioneuroblastoma, stage B last December. After 5 weeks of radiation

therapy, lost smell/taste which has not returned. Now have monthly ENT checkups & annual PET

scans. Feeling good & thankful to be here. Grateful for all the support on this website!

RoopaliSandeep (?) Joined Sep 8,2015 My father diagnosed with T1b cancer of glottic. He

underwent radical radiotherapy for 6 1\2 week for 5 days a week with cobalt -60. He completed

his radiotherapy in May'15. Now he OK with few of the side effects like hoarse voice.

RR89st (caregiver) from Michigan. Enrolled and checked in February 19, 2020. First time

posting. My husband just started his journey in this process called cancer treatment. He was

diagnosed Dec 19th, 2019 with squamous cell carcinoma of the right tonsil with 1 lymph node

involved. Have since found back of tongue with involvement and tumor through right lower jaw.

He is 1 week into radiation and chemo. I have read dozens of the posts, gleaning info about

everything. Taking notes and learning much here. We live in Michigan right about the web

between the thumb and first finger. We would be honored to be involved in this wonderful

community.

Ruben and Jude from California, joined forum April 2013, enrolled June 23, 2013. DX’d Stage IV

left tonsilar cancer to left lymph node. Treatment completed and using PEG. Having side effects

associated with cancer treatment (radiation, the gift that keeps giving). Checking in Feb 20, 2014

Hi All! Since he has some dead bone in his right jaw, which was 'caught early', he will be starting

hyperbaric chamber treatment on March 10th (30-dives). We're looking forward to the 'new

normal', as every day is so different from the last. Good days, bad days, but all in all, we're happy

he's alive and NED.

Rubytoos (?) Feb 4, 2014 I had a malignant neoplasm L tonsil in 2011, II Squamous cell

carcinoma - 35 rads. Recurrence in left neck 6/2013 -malignant neoplasm of head, face, neck.

Left radical neck dissection 6/2013. Go for MRI on April 2, 2014. Keep praying. Just like all of

you, I want to kick this in the butt!!!!Thank you all again for your uplifting thoughts and prayers

Rush1958 from Kansas. Enrolled July 20, 2010. DX’d SCC base of tongue January 12, 2010.

tonsillectomy and biopsy 3/12/10, Neck Dissection, 2/41 lymph nodes removed left side were

positive on 4/3/10. T1N3M0. Completed 33 radiation treatments on 6/23/10, 3 rounds of chemo

(Cisplatin) completed on 6/14/10.)Checked in January 21, 2013. Check in July 11, 2015.

Checking in April 1, 2016. 2010 Alumni. Just checking in for 2016. Still hanging in there.

Checking in February 26, 2017. Seven Years Out Just checking in for 2017. Still hanging in there.

Checking in October 27, 2017 I'm still here. Over seven years out. Checking in March 2, 2019 Yes,

still kicking NEW Still hanging in there after nine years. I go in once a year for a check-up with the

good folks at the University of Kansas Medical Center for my peace of mind. Shucks, they even

have have huge portriat picture of me hanging on the wall of the new wing at the hospital on the

second floor - as one of their success stories. I'm honored to be there! Rush1958. Checking in

September 10, 2021. Hi everyone! I hadn't checked in for a while. I'm still hanging in there cancer

free since my trifecta treatment of surgery, radiation and chemo ended in July 2010. I'm retired

as of the first of the year after 43 years on the railroadd and enjoying life. Good to see some of

the guys still checking in! Rush1958. CivilMatt asks“was that 43 years all the live long day”?,

RushFan from Texas. Joined forum August 2010, enrolled August 3, 2010. January 2010, swollen

lymph node was a concern after not responding to two rounds of antibiotics. DX’d HPV=T) N2b

MO unknown primary in January 2010. Completed treatments 4/30/2010 M. D. Anderson : 35

rads, 7 once weekly doses of Cisplatin Given the all clear May 2013, which was a surprise.

Checked in January 11, 2012. Regained 25 of 35 pounds lost. Checked back in June 23, 2013 and

weight holding steady. Taste back to 99%. Doing great, dry mouth at night...some minor

swallowing issues. Best to all, ,Chuck Checked in July 15, 2015. Checked in Jan 8, 2016, I don't

check the site much anymore, but noticed the roll call thread this morning. I was raised in Visalia.

MWHS class of 1979, lived on Terrace Ave. (now street) behind Visalia Fair Mall. I now live in

Cypress, TX...which is north of Houston. I miss Sequoia National Park! The only change to report

from last roll call is very dry skin on my trapezeus muscles near my neck and some flash jaw pain.

Other than that, doing well. Teeth and gums are holding up. I'm still dry at night. I can eat most

everything, with the exception of white meat chicken, pork chops or lean beef. I still need to be

careful swallowing. I know I'm very fortunate. Best to all. BTW said the flash jaw pain was likely

nerve damage / late effects from radiation and nothing to worry about. Checking in August 7,

2018 (It’s been a long time) Since I've checked in. Diagnosed Jan. 2010 HPV+ N2b MO, unknown

primary. Just a little over eight years post treatment (33 rads, 7 once weekly cisplatin) and I'm

doing great. Dry mouth at night is helped greatly by Xlimelts. Have some tinitus, stiff neck and

jaw issues. Still difficult to eat lean meats, but all is well as I could stand to lose 15 pounds or so.

I was recently released from serving as Bishop of our LDS ward. That, along with working 50+

hours a week has kept me very busy! Our oldest daughter will be attending UT Austin in the fall,

the twins will be sophomore's in high school and the little guy will be in 6th grade. I have

always been grateful for those contributing on this board, the support and advice are terrific. Best

regards to all, RushFan

Sabrina23 (?) Joined RC September 14, 2019, I am new to the roll call and just wanted to say I

am 3 month NED. I was diagnosed with squamous cell carcinoma of the tongue and underwent

surgery to remove part of my tongue until they got clear margins. Day of surgery my twin sister

held her hand on her phone on the image of Saint Pope John Paull ll and I know I was blessed

with a miracle from God because they did not have to do a neck dissection and I did not have to

get a feeding tube even though those things were to be a part of my treament it turned out I only

needed surgery. My speech is improving and I do exercises with my tongue every day. I have

trouble sometimes eating because I cannot feel my tongue it is still numb without feeling and

when I chew I really have to be careful with biting down as I have bitten my tongue several times

now after I am off the liquid diet and it was quite painful and a mess. I have to watch myself

when I eat. But all in all I thing I am improving more each day and think about all of us going

thru this journey and how much I really do care about each and everyone and their stories and

messages. It is a blessing to me and I thank you all for being there when I first wrote about my

diagnosis and was so scared and frightened. I received so much support from this forum and am

very grateful to you all. CivilMatt Thank you for including me in roll call and for doing roll call you

are so special indeed. God Bless All and Keep Us All Ache, Pain and Ailment Free and NED!

Sabriene (AE) from Missouri., did not enroll her self, but commented on a posting by Duggie 88 of

having similar type cancer and treated at same facility and CivilMatt “auto enrolled” her into the

Roll Call.

Sandraw from Oklahoma. Enrolled Sep. 6, 2016 Dx NPC Stage III on Dec 2015, 33 daily IMRT, 7

weekly concurrent Cisplatin and had 2 of 3 adjuvant cisplatin 5fu 96 hour infusions. NED July 18

2016 pet scan! Back to work 8/26/16. Fatigued, neck lymphedema, dry mouth but still here and

doing my best! Thanks everyone here for sharing your stories, you give me hope. Checking in

Dec 17, 2016. Hello everyone. I am still seeing improvement post NPC Stage 3 treatment that

was diagnosed December 2015, treated from Feb thru June 2016 with Radiation and Chemo. Had

PET/CT 12/9/2016 thank God, my Doc's and my lucky stars NED!! Had appt. scheduled from a

while ago with ENT for scope 12/14/2016, says looks good except vocal cords are still swollen.

Still get a pain on R side of tongue it comes and goes, Rad Onc attributes to metal crown

reflection during radiation caused deep burn, saliva slow to return, panic without my bottle of

water. Required bilateral cataract surgery from radiation and steroid induced cataracts, I can see

pretty well now! On short term disability, applied for SSDI in October with compassionate

allowance requested, no news yet. I have difficulty speaking very long and am required to talk

alot at work and still have fatigue, neuropathy, none the less going back to work if no decision

soon. Getting port out 12/27/2016! Wishing everyone a joyous Holiday Season and Healthier,

Prosperous New Year!. Checking in May 14, 2017, doing alright. Checking in August 22, 2017

Fibrosis in neck is tolerable if I do my exercises. Will have 2 year scan in December!!!. Wishing I

could gain a bit of weight but think I fill up with water. Either way I am HAPPY!!! and thankful.

This trial has been very humbling.

Sam999 from New Jersey. Joined forum March 2012, enrolled June 26, 2013. DX’d Stage I, SCC

of tongue, HPV. Tongue surgery and 6 weeks of radiation completed on June 27 2013. Checking

in Jam 20, 2014 all is well, all taste returned. Saliva is reduced but not bad. Only small problem is

i love spicy food and i cannot yet eat them . Promise to be more active in forum in two years

when we will be empty nesters. Happy to be part of this wonderful community!

Santatm from North Carolina. Checking in and joined on February 6, 2020, Joined forum tonight

after thinking surely there is someone out there that can relate. I was diagnosed with Squamous

cell carcinoma involving right upper cervical node as well as background of probable SLL/CLL, and

CD10 positive follicular lymphoma, previously undiagnosed in February 2019. At first they called

it cancer of unknown origin as the ENT surgeon did not find tumor in throat. Thankfully I had a

very good radiologist who insisted I see an ENT surgeon that specialized in TORS surgery. I had

that surgery in April 2019 and the right side of the base of my tongue was removed as well as

some remaining tonsil tissue on right side (I had a tonsillectomy at 12). This tumor was

diagnosed as p16 related squamous cell. I began 30 treatments of 220cGy radiation in late April

and completed in early July 2019. I just finished my second round of 3 month interval followups

and was told I am still in remission as far as the p16 squamous cell. I will have blood work for the

rest of my life to monitor the lymphoma aspect. I will turn 60 this month. As you can tell by my

profile pic and name I used to play Santa for the kids. That was put on hold this past year as my

beard fell out and I don't want to play Santa with a fake beard. It's coming along now although

the hair is a little more wild, hopefully it will calm down as it gets longer. My wife has been my

rock through all this and one of my two sons as well as my daughter have been very helpful. My

oldest has his hands full with children of his own so I do not fault him for trying to be a father.

I've been married to my lovely wife for many years. We live in a sleepy little part of North

Carolina. My worst after effects besides losing my identity has been the burning tongue, loss of

taste and almost complete lack of saliva. I am a mouth breather when I sleep and when I wake

from a 7 to 8 hour sleep my throat and mouth is so dry it is all I can do to swallow water to begin

the process of rehydrating. It is several hours before I can swallow somewhat normally. Food

constantly hangs at the back of my throat and I have to have tea or water to make the food

actually go down. I am in constant terror I am going to get my process of swallow hold breath

drink swallow out of synch one day and choke to death. They said I needed physical therapy to

relearn to swallow but my insurance requires a $40 copay per visit and I can't afford a long

therapy at that price, she said 3 days a week for 4 weeks to begin. Just found out this month I

now have hypothyroidism another gift from the radiation and started a medication for that.

I'm thrilled to find this site and look forward to future conversations.

SASH (OM) Still Here! Jan 13, 2014, Originally joined November 1999 as MonsterM. Then

retired that account and then rejoined as SASH. I licked Stage 4 tongue cancer. Simultaneous

radiation and chemo then surgery. Checking in July 27, 2015 SASH Still Kicking DX - Sept 1999

Stage IV N0 tongue. 46 Radiaion, 10 Chemo and surgery. Now dealing with the side effect of

radiation and it looks like if all goes as planned, will have 30 HBOT dives (5x a week for 6 weeks)

then surgery to remove balance of lower teeth, file down jaw, and put in posts for a permanent

lower implant denture. Let that heal for 6 - 7 months then they will start with impressions, fits,

and some new choppers so I can start eating somewhat normally again. Even with all of this, I

still licked my tongue cancer.

Sassyque-Betsy (OM) from Pennsylvania. Joined in 2003, Cancer of the tongue, Checked in 01-22,

Steeler fan, Checked in 07-29-2009 ood and steeler fan.

Sassysrice, from Massachusetts. Enrolled January 21, 2013. Boyfriend DX’d SCC base of tongue

w/1 lymph node on November 2012. Treatment will end on January 31, 2013.

Scottied from Virginia. Joined forum 11-2010, enrolled December 28, 2010, SCC base of tongue

ending treatment in December 2009, enrolled, December 28, 2010. MIA in

SeenanN from Maryland. Joined forum October 2009, enrolled July 21, 2011. DX’d 2004 NPC

Stage IV metastasis to lung. After some absence, reported back on February 5, 2013 with being

able to walk daughter down the aisle, seeing children complete school and seeing the smiling face

of his lady.

Sheilarhc from Illinois. Joined forum January 2007, enrolled May 22, 2013. DX’d

Hemangiopericytoma, left cheek in October 2006. Tumor removed same month. Post treatment

with dental problems and no saliva.

sherylcv13 (caregiver) from North Dakota. Enrolled April 22, 2017, My husband was diagnosed

around Labor Day 2016 with cancer of the oral tongue (lesion discovered by our dentist. Surgery

was scheduled which would have been followed by chemo/rads. The pre-op PET scan showed

another tumor on the base of his tongue. This changed treatment to chemo/rads first and,

hopefully, no surgery. He did 7 chemo and 35 rads from Oct 3 - Nov 18, 2016. In January 2017

the radiation sores under his tongue necrotized and we were referred back to the maxilofacial

surgeon. A biopsy was done on Jan 10th showing that the cancer was still present in the oral

tongue. The doctor determined that it was very agressive and scheduled surgery for Jan 24th.

My husband had a near total glossectomy, bilateral neck disection, tracheostomy and a free flap

created from tissue from his left thigh. He was on the operating table for 18 hours. Because he

had completed the full course of radiation the doctors (maxilofacial surgeon and ENT) were

expecting to see more tissue damage than they did. The doc also expected my hubby to be in the

hospital for 10 - 14 days. I brought him home on day 8. It's been a slow recovery process but

he's moving along. From day to day it doesn't seem like much but when we look back over the

past 3 months we can see a great deal of progress. Lymphedema is still a problem but we're

working on that. He started speech therapy a couple of weeks ago and, for now, that's just

exercises to strengthen his lips, cheek and base of tongue (so that it can move the flap attached

to it). He's run into a few issues with the trach but those have settled down considerably. There

have also been some sleep issues but those, too, have started to resolve. He had a PEG 'installed'

prior to chemo/rads and we've been using it since the end of October. We do blended meals

rather than the boost or ensure. SCC T4N2bM0. I've been doing a lot of reading here and find

much comfort and some good positive vibes. Hope someday I can contribute more but for now

the caregiving and household stuff is as much as I can handle. Checking in June 3, 2017 He has

outpatient surgery scheduled for this Wed, June 7th, to 'debulk' the flap created from his thigh as

it's still protruding from his mouth.

Shoeloy from Texas. Joined forum May 2011, enrolled January 5, 2012. DX’d hypopharyngeal SCC

Stage III in December 2010, Completed treatment in April 2011 and NED as of this date. Checked

in July 15, 2013 and NED. Great comment on “God is Good”.

Silver Foxette from Indiana. Joined forum November 2009. Reported by Pam M on February 3,

2013 that cancer has recurred and will start chemo this month. Checking in Feb 22,2014

(reported by Pam M) Silver Foxette is once again doing chemo.

skidog from Wisconsin. Enrolled February 13, 2019 HNC right lymph node, right tonsil. last rads

treatment July 7th 2018. 6 months NED!

Skiffin16, Lakeland, Florida, joined forum 09-2009, enrolled January 31, 2010. DX right tonsil,

January 2009. Reported in January 4, 2012 w/status of finz2left ~ Lloyd, j3rey ~ Mark, irishgypsie

~ Charles (all doing okay). Checked in January 18, 2013 and all clear. 2015 given the all clear,

complete remission. check-in July 11, 2015. NEGU ~ Never Ever Give Up. check-in July 11,

2016, Doing well.., recovered from the Whipple from Hell, LOL.., that in 2014.. All well clean and

clear from Stage III Tonsils in January 2009.. It's been a long road with a few bumps, but it was a

good reminder to get my priorities straight. Checking in. January 5, 2018, Who Dat... 2018 Hey

CivilMatt, and all of my fellow longtime buds and budettes.. I'm doing well, retired now and

working mainly on photography, and my art.., though I do still fish.., LOL. I just spoke to

IrishGypsy and he's doing well with his significant other, , their new little girl. and his yellow lab

Abby. I speak to Sweetblood22), Roz, and Ingrid pretty much daily.., oh.., and Patty also.Hang

tough, and NEGU..John. Checking in Augst 6, 2018 (Blast from the past) Doing well.., going on

10 years from the Stage III SCC Tonsils Dx on January 2, 2009. .My wife, me and our two young

labs just got back from visiting Ingrid in the Chicago area. Our two chocolate labs have both

passed from unfortunately, cancer this past year or so.., gone, never forgotten. Also, BTW.., Ingrid

lost her husband to cancer a short time ago, as well as Barney, her beautiful Golden Retriever. I

had done a portrait of Barney for Ingrid that I took with us for her Also, we were up visiting

Ingrid as I also had an art piece that was accepted in an exhibit downtown Chicago. Those that

remember me, know that I'm into photography, and from those reference photos, I do colored

pencil drawings.One was accepted into the Colored Pencil Society of America - 26th International

Exhibit at the Bridgeport Art Center - Chicago. Anyways, all is well.., and doing great. .Best

always, Skiffin16. Checking in February 20, 2019 Thanks CiilMatt for taking over the helm that

myself and many others used to man frequently. I am dtill doing well,, photography, art and

fishing since retiring early 2017. I'm still in contact with many or the originals mainly via

Facebook, Ingrid, Dawn, Roz, Patty, Stacey, Jeff, Charles and many others on occasion. Let’s just

say that. Checking in June 25, 2021 Hi CivilMatt, and other people...Still here, still kicking and

screaming.

Slickwilly (OM) From Michigan. Joined in 2003. Difuse Large B-Cell Lymphoma. Checked in 01-20-

2009, had 25 doses radiation in 12-2003

Soccerfreaks,(?) Not enrolled, but posted on welcoming Sash back. I may have missed

enrollment, but he has been around a long time. Let’s just say he was “Grandfathered in”. CM

Sonja.K (?) Enrolled Aug 1, 2015 SCC base of tongue to lower right jawbone. Surgery to remove

diseased jawbone and titanium replacement. 136 lymph nodes removed (all came back clear).

Tissue transplant from lower arm. 30 Radiation treatments. One year NED 7/8/15. Thank you

for all the help during treatment! Checking in October 26, 2020 some minor permanent side

effects but all manageable. Thank you CivilMatt for continuing the Roll Call. Your humor and

advice from all got me thru treatment. Stay safe everyone!

Soonerman from Oklahoma. Enrolled December 31, 2019, Living in a beautiful area known as

“Green Country”. Dx’d in May 2019 with Stage I, HPV+ SCC in left tonsil with one lymph nodei

involved in level II on left side of neck. Plan of care was 33 rounds of radiation and 3 rounds of

Cisplatin. I chose to forego the chemo and only endure the radiation. My radiation oncologist said

it was a smart move to not take the chemo. Heck of a journey so far but I am grateful that this

nasty cancer crap has opened my eyes to what is truly important in life. God and family!

soonermom from Oklahoma. Enrolled April 30, 2017, My husband, DOCP, was diagnosed with

BOT SCC HPV positive on January 27, 2017. We live in OK and he just completed treatment, 3

rounds of Cisplatin and radiation. We are two weeks post treatment and hoping the brutal side

effects will diminish soon and heaiing can begin. Tired but hopeful.

Sooner79, from Oklahoma. Enrolled forum January 2012. Had not enrolled in Roll Call, but

reported on February 5, 2013 that she was NED and pet scan due the following week. Our

apologies for not listing you previously since roll call is voluntarily and information is extracted

only from the roll call listing.

Sprint Car Dude (?) Enrolled Feb. 20, 2017 Alive and well. New to site. Love it.

Squiggyrn (Michael) Saint Clair, Michigan. Enrolled June 24, 2016. I am 4 years out of treatment

form stage 3 tounge cancer, I am happy to be alive. It has given me a new look on dealing with

my patient after being one myself I am a ER nurse and am able to still work as one.

Saceya (?) Dx’d 2009, NP T1, 35 rad. Class of 2010. NED since. Checking in Feb 1, 2014 , doing

great, I am doing great, will be 4 years this March. Can eat most things, had my first post

treatment hamburger last July, and it was delicious! I started a local head and neck cancer

support group over a year ago, and it has been a blessing to me, and hopefully others. I read the

board regularly, but don't often post, post more with the csn folks on Facebook, where I still tend

to over post goats. Recommend this site to all people I meet with either a cancer diagnosis, or

their caregivers. Cannot fully say how appreciative I am of all the support here. Check in July

12, 2015, I am more of a reader than a poster, but REALLf feel connected to this group. Made a

huge difference during treatment. Thanks so much for keeping this going!

Stepaine75 from North Carolina. Joined CSN on November 25, 2021, enrolled to the Roll Call on

December 10, 2021. Dx’d Transglottic cancer - T2N0M0 - Currently in treatment (radiation only) 7

weeks radiation, last day 27th January. Holidays will be delaying me I am going to ask if I can get

in on weekends. I will be 47 on my upcoming birthday, and I don't expect I will be eating cake. All

of you that can (still) eat, please have a piece of cake for me :)

Stevenpepe from New York. Enrolled June 14, 2016. Squamous Celll Carcinoma of the left

tongue, with 1 lymph node metastasis. Diagnosed February 23rd, 2016, surgery, April 1st on

tongue and neck, then 33 radiation treatments. Five more to go at this writing. Checking in

February 16, 2020, Diagnosed 2/23/2016 with SCC left tongue. Surgery-tongue, left nodes, 33

rounds IMRT. Treatments ended 6/30/2016. Round two after lump found on right side of my neck

in August. Surgery right nodes, 6 weeks chemo, 35 rounds Proton therapy. I'm heavily scarred

with damage to right massetter muscle, but grateful to still be here. Love to all on this journey…

Steve1959 from Alberta Canada. Enrolled July 10, 2018 Hi everyone. I'm from Alberta, Canada

and I sure am glade that I discovered this forum. A wealth of information for people going through

head and neck cancer/recovery. First diagnosed with neck cancer in March 2016, SSC stage III

modified neck dissection in July 2016, 35 lymph nodes removed, modified radical neck dissection

using left chest muscle to rebuild the left side of my neck, latest PET/CT scan noticed a nodule on

the upper side of my right lung, follow-up CT scan confirmed a 5mm nodule. I am now scheduled

for a CT scan with contrast on September 15, 2018. What I have learn't from this forum is to stay

positive and not worry. Life has its way of working out. Thanks to all for your input over this past

2 years. Much appreciated and I hope only the best for each and every one of you. Checking in

October 19, 2019 STILL GOING STRONG! Hi everyone. Still going strong three years after my

surgery and radiation treatment. Only one concern, small nodule on my left lung. My oncologist is

monitoring closely with the usual CT/PET scans. So far so good. The nodule isn't growing. My

oncologist has indicated that I am not out of the woods until the 5 year mark and the nodule in

my lung doesn't grow anymore. With that said, we travel a lot more, have simplified our lives and

just appreciate life in general and everyone around us. Including all of you on this site. Yes

including you too CiviMatt! I enjoy every one of your inputs to this forum. We all need a good

laugh and you provide. Thanks for that. All the best to each and every one of you.

Stonestack from Utah. Enrolled May 25, 2019. Good morning all, happy holiday. Stage III, base

of tongue with hpv+. just finished my third week of six currently in radiation. haven’t slept more

than 3 hours at a time in about 4 days now. dry mouth and mucositis prominent. been drinking

Organic protein mixed with almond milk for my only nourishment, also for about 4 days. energy

levels dropping. cheeks and tongue feel raw from constantly rubbing on my teeth, and my

ibuprophen are getting a little harder to swallow. lost six pounds since radiation started. right now

just trying to focus on nourishment. my water bottle is my constant sidekick. glad to have a new

community to lean on for feedback and support. I hope to contribute as well.

Strawberry54 from Wisconsin and snowbird in Florida. Enrolled July 10,2018. Diagnosed with SCC

of tongue HPV+, in March 2018. Had 35 rads and 2 chemos. Last rad on May 16th. PEG tube

came out the end of June. Lost 15 lbs and although I am holding my own, the weight is not

coming back on. Am eating normally, but taste buds are at best 40% back and dry mouth is fairly

severe. Of course, I am only 8 weeks post-rads, so I guess I am doing ok. Still have a sore soft

palate. No PET scan until October. I will check back then.

Sumarah8 (?) Enrolled January 5, 2012. DX September 2011 with NPC, Stage 2b. Treatment

until February 2012. Checked in January 8, 2013; struggling to gain weight but still okay.

Sunshine_6 from California. Joined forum March 2012, enrolled August 23, 2013. DX’d T1N3

METs to both sides of lymph glands. NED September 2012.

Sunshine60 (caregiver to husband) Kentucky, Jan 16. 2014 Checking in for husband-SCC,

unknown primary, 1 lymph node involvement ( 4.3cm) dx in February 2013- 33 radiation tx, neck

dissection, removal of tonsils. Almost 1 year out, clear CAT scan, so far NED! Checking in July 28,

2015 NED x2 yrs- SCC unknown primary, neck dissection, took out 26 lymph nodes all were

negative. Completed 35 Rads, no chemo. Doing great. Has been out of tx since June of 2013.

This site was a God Send for both of us, still come here at least 1x per wk. Never met any of you

but feel I know you. Keep up the good work! Checking in June 6, 2019. Have not been on the

forum for quite some time- I care for my husband who originally was dx with SCC unknown

primary, neck, in 2013. He had surgery and rads and all was great for approx 4 yrs. It came back

in 2017, base of tongue. Did robotic surgery as it was a small spot. In November of 2018 he

was dx again with BOT, stage 4. Surgery included total removal of tongue, section of jaw, soft

pallate. the tumor was very big and very aggressive. He now has a permanent feeding tube.

Despite this setback, he continues to be an amazing soul. While he can no longer eat he

continues to go to speech therapy and has learned to talk quite well! I know that he must have

hard days at times ( I'm still working) but he doesn't show it often. He cooks for the family

despite not being able to eat but says it's how he continues to stay connected with us all. One of

our grandchildren asked him the other day if he regretted doing the surgery since he can't eat

anymore. He replied, " no, i wanted to live and we can adapt to whatever we need if we want it

enough.” So, we started this journey 6 yrs ago as an unknown primary and despite tx had two

reoccurrences. I'm not sure why some never get it again and others like us fight it more than

once. I just know that he will carry on until he cannot. I thank you all for your inspiring stories

that have often kept me going as well, even though I was silent. *Hugs*

Survivor1966 (?) Enrolled Feb 21, 2017, Joined Oct. 2014 Stage IV, SCC. Surgery, 6 weeks rads

with weekly cisplatin. Body is feeling well but side effects a plenty but choosing to not think about

it much. Currently dealing with a large blood clot in the exterior jugular vein which is said to be

from surgery and rads. Showed up on the year 2 PET. On blood thinners to try and dissolve.

Anyone else end up with a blood clot issue in the neck? Wishing you all the best. 2 years and

looking to move on with life.

SuzJ (location explained, “Forgot - Originally a Brit, living in Virginia now.”). Enrolled April 22,

2017, I found a swelling (Isn't that how all our stories start?)I thought I had an ear infection,

Cancer doesn't happen to me, I am invincible, right? Wrong. It can happen to anyone. Its base of

tongue SCC, and I'm doing 33 rads, and 3 rounds of chemo, although I'm not sure who will win on

chemo. Checking in February 1, 2019. I'm SuzJ, Oropharyngeal in 2017 - not Superwoman as I

originally thought.

Sweetblood22, Pennsylvania, enrolled March 18, 2010. SCC HNC unknown primary stage 4 DX

December 2008. Checked in January 3, 2012, everything appears okay. January 2012 is 3rd

anniversary

Swopoe (wife & caregiver to husband) from Texas Enrolled November 2015, Revised and

Checked in February 2017 Treated at UT- MD Anderson and Memorial Hermann Hospitals.

diagnosed October 2015. SCC Oral Tongue cancer, stage I, HPV-. Non smoker/non drinker. No

node involvement. perineural invasion. Neck dissection and tumor removal surgery November

2015. 6 rounds of chemo (cisplatin) and 30 rounds IMRT radiation started December 2015,

completed January 2016. NED scans February 2016, May 2016, August 2016, November 2016.

Last checkup February 2017. Next scan June 2017. Corrections Febuary 21, 2017. Can add to my

info that June 2017 scan for my husband was NED! Checking in February 4, 2019 My husband

has been all clear (NED) since he finished treatment in January 2016. Checking in September 22,

2021. For some reason I thought of this board tonight. Good to see familiar faces! We are coming

up on 6 years from my husband's tongue cancer diagnosis. He has been doing great. No re

occurrences. Sees his doc once a year- went earlier this month. It has been so long. Our son is a

high school senior this year! Wishing everyone good health and good thoughts.

SylMarie (?) Enrolled Feb 20, 2017, Joined May 2016 After surgery at the end of June, 2016

(partial maxillectomy, with skin graft in left inner cheek), for SCC of the alve ended at the end of

October, 2016. Just had my 3 month PET Scan and all looked fine. Swallow test was also fine. My

next check up is at the end of April, with just my surgeon and the next scan (CT next time) is in

late July. I haven't been on the boards since before my treatments ended but will start

participating again. Now comes the part where I worry between now and the next check-up, and

learn to deal with the side effects and the fact that the radiation changed my smile and my neck.

That's going to take some time.

CivilMatt

TheOtherDitto, (?) Enrolled January 21, 2013. Reported Ditto1 DX’d w/stage IV, BOT, multiple

lymph nodes on both sides in March 2012. Treatment completed and unofficially all clear. Follow

up biopsies due on January 26, 2013. Best wishes.

Tanager75 from the Pacific Northwest. Enrolled Aug. 26, 2016, i have been remiss about checking

in on the roll call. I have been in remission since 2009. I still have side effects from treatment but

able to enjoy life! Peace. Checking in July 7, 2019, I look at the discussion board periodically.

The posts were such a help 10 yrs ago. I was diagnosed July 2009. This started an amazing

journey. still have reminders like dry mouth, memory lapses, neuropathy, and a couple other

issues. I had a good team who took care of me 10 years ago. I have been blessed the last 10

years.

tbret from Mississippi. (?) Sept 2016. Dx SCC HPV+, Stage Ivb. 35 radiation blasts, 5 of 7

Cisplatin doses taken, Cancer Center, Jackson, MS. PETs clear - NED - 4-year PET in ten days. It

took the better part of two years for me to recover from large weight loss and general atrophy

despite "following orders" to eat and exercise. I have returned to being fat (thank you, God) and

can (and do) walk 3 miles at a time at a good pace (thank you, God) and could go more if I could

find the time. There are some lingering symptoms, but nothing that interferes much with the

enjoyment of life.

TereB (OM) from Texas. Joined in 1987, dx’d with Milignant Paraganglioma (started as glomus

jugulare tumor) still Fighting treatment.

TiaY from Arkansas. Medically treated at Little Rock. joined forum July 2012, enrolled May 29,

2013. DX’d ENB July 2012. Surgery September 25, 2012 and removed 2 very large tumors.

Treatment completed January 2013. Unfortunately, two new tumors on scalp. Removed on April

29, 2013, then another tumor found. Many after effects from surgery to include losing nose, eye

drips, permanent bald spots. Understandably, overwhelmed, angry and hurt. Saying a prayer at

this moment. God bless.

Tim6003 from Idaho then north to Alaska. Joined form November 2011, Checked in February 12,

2013. DX’ed October 2011 BOT w/one lymph node HPV+. Treatment completed January 21, 2012

and to date NED. Still no saliva, eat anything but struggle with breads/meat. 90% taste buds

back. Back working full time. Checked back in May 20, 3013 and plan on being around till 101

years old. Checking in Aug 6, 2015, Three years out all clean and NED. In Alaska now 1 full year.

Was a childhood dream to move and live here like a pioneer. We did not call it off grid when I was

a kid, but that's the deal. Not off grid yet, but getting closer every day. Boys love bit. Wife likes

it, daughter, well, she come along soon as she meets a tall, Alaskan boy I'm sure :) Whisper

prayers often for you all. Love and hugs from Tim6003. Checking in Oct 31, 201 Nearly four years

out. Just had a routine PET performed this week, will know results later next week.5 .. Enjoying

Alaska for sure. Taste still comes and goes as it pleases. I do fight thrush quite a bit. Swallowing

was good, then bad, then good and now just a bit odd again. Not sure why that happens, but

hey, it is what it is. Every day is a gift. I am four years out from initial dx back in October 2011.

Checking in October 20, 2017 This week will be 6 years since I learned I had stage III base of

tongue with mets to a lymph node. Five years out I did have to go on a feeding tube, but I am

doing what I want. On good days I get up and I go and do, on bad days I listen to my body and

try to take care of it. I have no complaints and I am thankful for every day I get. I will always

"whisper" prayers for all on this site and always before I hit the submit button...so if you are

reading this, a prayer was whispered for you!! Checking in November 14, 2019, Just checking in.

8 years out, NED. To all fighting, hang tough, it can be beat!

Tomb247 (?) Enrolled July 23, 201, Diagnosed January 2015, SCC Tonsil and Base Crossed.

UPDATE Nov 2015 - NED after 6 months. (PET Scan in Feb or Mar 2016 ar one year post

treatment). Taste is still off. Most times sense sweet, spicy and salty but not much else.

Lymphedema in neck and vocal chords. Still some swallowing issues but can eat most items.

Feeling pretty good and working full time although still a bit fatigued after long day or week.

Saliva is slow slow slow to come back to whatever the new normal will be. Dentist every 3 months

and Fluoride Trays every day forever to try and save teeth which were all normal prior to

treatments. Hoping that it helps. Actually pretty happy right now. God, friends and family have

been supportive and My faith has really grown in last few months. Hope and Pray you all are well,

healing and peaceful. Take care. Checking in June 26, 2016, Treatment finished March 3rd 2015.

1 year CT scan in April and PE by ENT and Onc Doc and NED. Now 15 months post and will visit

ENT in a few months. Onc Doc will see me at 2 year mark for scan. Saliva is better about half

what it used to be. Taste still off a bit but overall. Breathing In, Breathing Our and Moving On.

Take care and Peace to all of you. Checking in Dec 13,2016. 18 month head and chest CT's done

and NED. Trying to deal with new normals as far as saliva, taste, neck spasms, jaw pain and

lymphodema. Overall doing well. Just need to BIBOMO (See above). Bless you all and check in

again at 2 years. Checking in April 22, 2017, 2 Year scans were denied by Insurance but will have

in 6 months. ENT did thourough exam and scope and sees nothing of concern. Fingerers crossed

still NED at 2 years. Peace to all of you.

The arn man (?). Enrolled July 18, 2016, I'm almost 4 years post treatment. I'm cancer free but

all the radiation and chemo took its toll. I'm feeling old before my time but I'm still hoping I'll get

stronger. That's winning right? I still have hope.

Tommyodavey (?) Checking in Jan 28, 2014 Dx'd with Mucoepidermoid Carcinoma on the base of

my tongue. Sept. '2011. TORS was used to remove it with clear margins. Right neck dissection

with 2 positive lymph nodes. Roughly 40-60 taken out along with my right parotid salivary gland.

The surgeon was kind enough to move my left gland to the center of my chin and instructed the

Rad team to avoid that spot. They did, and now I have one good working salivary gland. 25

lower dose radiation treatments. (not much lower) No chemo. My type of cancer does not

respond to chemo. NED last PET scan about 5 months ago. Last treatment of rads was April 2,

2012. My right neck is still numb. The pain in my right arm is getting less and less. When I

looked at a picture of myself recently, it looks like my head was screwed on crooked. A lot of

mass and muscle was removed and the only thing added is my turkey neck. (lymphedema). I feel

guilty that I don't log in as much anymore. You guys gave me such great support when I needed

it most. Jun 6, 2014 checking in, I try not to complain because if not for modern medicine my

life would have ended already. My blessings far out weigh my complaints. A good marriage going

on 25 years. A sister in law who came into a large sum of money and wants to spend a bit of it

on us by traveling with her. We're becoming world travelers. One healthy son who is getting

married this weekend at the same Chapel we did, and the same one my in-laws did in '47.

Grateful as can be! Checking in Aug 17, 2015 Thanks so much for keeping this thread going all

these years. NED since last PET scan on 10/15/14. Insurance won't authorize another one for

probably 5 years unless my surgeon finds something suspicious. To me, that is doubtful. MEC is

a rare one and has good results when treatment involved clear margins, which mine did. This

year we went to Iceland and next is a Mediterranean cruise around Italy, Greece, Croatia, and

ending in Istanbul. Only problem is having enough money to do all that. I hate the thought of

coming out of retirement. Thanks to all in the "I'm not supposed to be here club". As a support

group you all make me feel like family. Checking in Jan. 3, 2016, As of today, I am 3 years, 9

months away from my last radiation treatment. (April '12) Last PET was NED.I am proud to be

part of this wonderful group of survivors. Part of me feels a little guilty that I got away with only

having a less dangerous type of cancer. Time will tell if that is true. Nothing is guaranteed.

Checking in Jan 31, 2017 No change from my last wordy statement. I should have just stated the

few facts and let the rest go. Still checkin' in to see how my good forum friends are doing and to

also see if any MEC cases show up. Checking in July 17, 2018, Last rad in April of 2012. Doctor

won't release me until 15 years have passed. Mucoepidermoid Carcinoma acts different than

SCC. Side effects not untolerable. They include; scar tissue in throat where food gets stuck,

muscle spasms in neck from radical dissection, and still some nerve pain but very minor now.

Very lucky to be able to continue posting on this thread. Checking in February 2 & 23, 2019 Great

job CivilMatt for keeping this thread up to date. Tommy here on 02/23/19. It seemed to help

with getting my taste buds back along with one major saliva gland working good. Next PET scan

should be done this year. (2019) I am completely blessed to back to maybe 75% of normal. A

lot of small issues but nothing compared to what all of you who had SCC have had to go through.

A day doesn't go by that I am not grateful for my life.From Las Vegas, NV. Age: 64.Checking in

October 18, 2020. Thanks CivilMatt for doing all the work for the roll call. Had Mucoepidermoid

Carcinoma in 2011 on the base of my tongue. Surgery to remove it, radical r-neck dissection, and

lower dose rads to finish it up. So far so good. Small complaints that aren't worth mentioning.

TracyLynn72 (?). Joined forum May 2013, enrolled May 26, 2013. DX’d MEC and tumor removed

March 2013. Had to removed several teeth and 1/4 of jaw. Undergoing treatment at time of

enrollment. Checking n Jan 20, 2014, I’m here! 1/4 of jaw and teeth removed to extract the 4cm

tumor (March 2013) Finished 30 rads 06/21/2013 and am deemed "cancer free" as of that date.

Received my partial (fake teeth), PEG removed and learning my new normal each day. Thankful

and blessed!! Checking in May 23, 2014 Treatments done almost one year ago :) I'm going in

June for my one year check ups and xrays. Doing well, learning the new normal, but enjoying

life :) Check-in July 10, 2015… 2 years cancer free as of 6.21.15. The people on this wonderful

site were my life line, and have now become my family. Love you all.

Traceyd1 (caregiver to husband) (?). checking in Jann 14, 2014, Husband is still here! Husband

was diagnosed with mandibular sarcoma in Nov. '12. Had 20 rad. treatments, partial

mandibulectomy and neck dissection with fibula free flap. Had surgery in Dec. 13 to place dental

implant posts. Last scan showed a small nodule in lungs that we will watch and scan further in

March. Even though I rarely post, I watch the boards daily and pray for you all often. Checking in

Jan. 6, 2016, My husband, is still doing well. Had a lung biopsy January 2015, which revealed

lung mets from osteosarcoma of the mandible. Doctor missed a second spot, so we are now

being followed at UT-MD Anderson in Houston. Currently, Jim has three spots on the lungs that

they are watching. They are growing, but luckily very slowly. The plan is to continue scans every

three months. At the point that they need to come out, we will do surgery. Chemo is currently

off the table, and prognosis is great. God Bless All in the coming New Year! Checking in August

1, 2018 My husband is doing well. He had surgery to remove 6 mets in his lungs at MD Anderson

in Nov. 2017. Surgery went well, and scans in April were clear. We actually go to Houston

tomorrow for more scans. Hopefully all will be clear. God Bless you all.

Tragic-king (?) Joined Sep 4, 2015. Dx in July 2015 and just finished my third week of

radiation, with my second of 3 rounds of Cisplatin next Tuesday. BOT source, HPV positive, I only

found it because I had an unknown lump in my throat. I'm doing pretty well so far, though can't

eat much anymore and everything tastes very salty to me. This forum has been very helpful to

me and I wish the best of luck to everyone on here. Looking forward to getting through the next

4 weeks and hopefully NED next year. Checking in January 27, 2016 Thanks for keeping this up

and to all the great contributors here. I'm about 4 months post treatment and making slow

progress. A couple of inspections have not shown anything, but waiting for my first MRI next

week before calling NED officially. Eating is still a challenge due to poor taste and saliva, but keep

trying everything and have the occasional surprise (tortilla chips, which I thought would be dry

and perhaps painful, proved to give me my first eating that was close to enjoyment). There are

several other side effects, some unexpected, but nothing to stop me moving forward. Best to

everyone!

Train-nut (OM) from Oklahoma. Joined in 2007, hupopharyngeal (piriform sinus) cancer, Checked

01-22-09

Tryinghard (?). Enrolled November 21, 2016. nasopharyngeal cancer with lymph node

involvement on right. Diagnosed February 2016. Had complicated recovery post 33 rads, 3

Cisplatin and 1 adjuvant of Cisplatin and 5FU. Hospitalized with acute kidney failure April 11 to

27. Wound up with peg and mediport after treatments. Upper Endocope 10/13 showed gastric

acid small ulcers erosion of esophagus. Put on Omeprazole and nausea and vomiting finally

stopped so I could eat solid foods. Had been living on Boost Plus Protein Ice Cream shakes 4

times a day. Repeat PET scans in July and October clean. Now dealing with lymphedema below

chin and neck. Thankful my life is starting to get better.

Tuffenuff from Florida. Joined forum May 2012, enrolled March 11, 2013. DX’d in April 2012

w/Stage IV SCC, right tonsil w/mets to two lymph nodes.

Treatment completed on August 3, 2012 and scans all clear so far.

VanessaSLO (?). Enrolled Jan. 31,2017, Joined July, 2012 His original diagnosis on May 2012

was: Ca Oropharyngis T2N2bM0. It started on the base of his tongue, spreading down and little to

the other side of the tongue. Lymph nodes on the one side of his neck - fine needle biopsy showed

SCC and were very big. The biggest package of lymph nodes was 8 cm big! By the time tx started,

he already had T3N2bM0. His treatment took place from July to September 2012: 35 rads with 7

concurrent chemoteraphy (Cisplatin). No surgery. A year later (Sept. 2013) he had a surgery

where they took out 15 lymph nodes from his neck because one of them looked suspicious on

ultrasound. All were clear, thank God!!! Hi all! It's been a long time since I came here! This board

was a great help to my family during my father's treatment back in 2012. So I decided to come

back here for all the newcomers and give them hope - my dad is still healthy, happy and still

kicking!! Hi all! It's been a long time since I came here! This board was a great help to my family

during my father's treatment back in 2012. So I decided to come back here for all the newcomers

and give them hope - my dad is still healthy, happy and still kicking!!

Vee1, from California. Joined forum Novemer 2012, enrolled February 1, 2013. Enrolling dad (94

yrs old) who was DX’d SCC floor of mouth. NED for 11 years, recurred in November 2012.

Inoperable and no chemo.

Vermontgirl from Vermont. Enrolled January 3, 2013. Husband DX’ed with SCC tonsils, Stage IV

w/one lymph node on same side on November 19, 2013.

Vetorama from Florida. Joined forum Sep 2005, enrolled Feb 12, 2013, DX’d Oct 2, 2012

w/Stage IV mandible and floo of mouth. Surgical excision and reconstruction. Still undergoing

treatment at enrollment.

Vicky1 from Maine. Enrolled July 10, 2018, My Dad has cancer and is undergoing treatments.

Update I'm new here. My dad was diagnosed in February with verrcuous carcinoma in his mouth.

He had a mandiblectomy and fibular free flap reconstruction at Mass Eye and Ear in May and is

about to undergo 30 radiation treatments and 5 or 7 chemo treatments. Just stumbled upon this

forum while searching for the best cream to buy for his radiation.

Victor53 (OM), from Rhode Island. Lives in Costa Rica, enrolled August 5, 2008. Started Stage IV

treatment on April 4, 2008, chuckled on comment that chemo & radiation did not sterilize him.

Has a young son and a daughter. Checked in January 23, 2012; Announced on February 7, 2003

that he is on FB “face book.

Viking18 from Washington DC metro area. Enrolled January 7, 2018, Diagnosed with Olfactory

Neuroblastoma in October 2017. Almost four weeks ago, I had surgery to remove the tumor at

Johns Hopkins. My medical focus for early 2018 is to heal and recover as much as possible so I'm

in good shape for radiation therapy. Meanwhile, I try to take each day as it comes, enjoy time

with friends and family, and learn more about what really matters. I am grateful for the

information on this forum and the wisdom of the good people who share it. Thank you!

VivianLee5689 (?) enrolled January 21, 2013. Husband DX’d w/stage IV, BOT cancer. Also

DX’dwith Primary Plasma Cell Leukemia, November 24, 2012. Cancer is not curable and given a

3% chance of living. Wishes he will be here for next roll call. FORUM USERS, PRAYERS NEEDED.

Warrior4MyFamilty (Sister enrolled) (?) February 8, 2016, Dx ENB (Esthesioneuroblastoma). I am

the sister to my 54 years old brother, I have been able to help my brother get set up with some

wonderful centers/surgeons and we are in the process of choosing our surgeon/medical center for

his surgery. He was dx with a Hyams Grade 2, Kaddish C ENB. Pet Scan negative for metastasis.

He will have surgery in late Feb or early March and we are awaiting final determination of surgical

approach and radiation recommendations.

Wbcgaruss from Pennsylvania. Enrolled July 12, 2018 Long time reader and recently signed up as

a member in the club nobody wants to be in. First I would like to give honor to Hawvet who this is

in memory of, he and those who traveled this journey before us and others like Kteacher and

Longtermsurvivor. And a shout out and thank you to CivilMatt for continuing it-Thanks CM. In

late November 2012, I had a sore throat that would not go away. After 2 runs of antibiotics for 10

days each in which a sore throat would go away and then resume again after the antibiotics wore

off so my family doc sent me to see an ENT. He did a scope job and said “not good news you

have a tumor in your throat”. Confirmed as cancer with biopsy squamous cell probably Stage IV

they wondered why I did not have some trouble swallowing. Starting January 1 they had my

treatment plan all made, and treatment was started I had my mask and had many meetings and

my treatment was started. Had the whole routine feeding tube, port, mask.

I did 2 stints in the hospital for 5 days on 24-hour chemo with time between for blood count to

build up. Then started a plan of 35 rads and chemo in the beginning middle and end of rads. At

some point in this treatment, my Parotid gland got infected and I spent several days in the

hospital on heavy antibiotics and the left side of face swelled up. I was transported by ambulance

to not miss any rad treatments and had a difficult time with the mask as my face was swelled but

a great rad gal talked and worked me through it. I owe her great gratitude what a blessing. All

scans now show cancer free. Fast forward recently had sore on the bottom left of the tongue that

would not go away. Back to ENT and he did a biopsy and confirmed cancer same type as before

and diagnosed as Stage I. He says not a recurrence but another round of cancer. Operated on

recently 6/21/18 recovering well mostly healed up and doing well. Lost very little tongue tissue.

Always an avid reader of this forum I decided this time around to make it official and join in.

SORRY to make this so long. New member but old reader so wanted to explain a bit. God Bless

and Strengthen you in your journey and may cancer not darken your door step again. This is one

great group of people sharing help and hope. Checking in February 3, 2019 I had Throat cancer in

late 2012 read this forum heavily-a God send-like a support group every day instead of once a

month with informed people going through what I was going through and even a doctor that was

active and had cancer. Talk about having resources you can't beat it. Starting Jan. 2013 Had 35

rads and 3 chemo treatments including 2 chemo treatments of one week at a time in the hospital.

Clear of cancer till the late spring of this year I fingered I was in good shape-almost 5 years out

and got a small spot on the bottom of my tongue. I was lucky it was gotten early and only lost a

small amount of tongue and had clear margins. That is when I joined CSN after the second

occurrence I figured I am in the club now. Just want to help others if I can in any way. God Bless.

Checking in June 18, 2019 Tongue cancer last year, a small spot. ENT operated June of 2018 and

got clear margins. Lost just a small amount of tongue. Generally feeling good but my worst

leftovers are dry mouth and especially neuropathy. And I think I still have some chemo brain. But

I am still on this side of the sod and God has blessed me Greatly. Take care all. Checking in

January 10, 2020. July 2019 I had a soreness on the left side of my neck. Saw my ENT and he

ordered a cat scan with dye. Results of the scan were cancer again this time #3 of the lymph

node. Also it was outside of the lymph node. On Sept 18, 2019 I was operated on for cancer of

the lymph nodes a radical neck dissection at Hershey Med in PA. The operation went well but was

a bit involved and had some complications. I ended up spending 35 days in Hershey Med and then

was transferred to a rehab hospital for 10 days and then home. I hope no one else ever has to go

through an extended stay like this. I am taking radiation follow up treatments now and if I don’t

miss any I will be done Feb. 7th 2020. I am getting a total of 30 treatments. All this brings a

different perspective to life. I give God the credit and Glory for getting me through this as it

certainly wasn’t my strength. Each day is a blessing. I like one of civilmatt’s statements I think it

applies to many of us but we do not think about it exactly the same as everybody else does “ I

see life differently now, wonder and tragedy are but a heartbeat away” There's no place like

Home. Checking in October 8, 2020. Hello all and God bless. The Number one thing I want to do

is acknowledge and thank CivilMatt for doing the Roll Call and keeping it going and a Hats off and

a Hearty Salute in Honor and Memory of HAWVET who started it. For my most recent cancer

treatment I was sent to Penn State Milton Hershey Teaching Hospital for surgery. I had surgery

and it was successful but I had a number of complications starting with a damaged Khyle Valve

and-rather than getting released in a couple of days as was thought I ended up spending 36 days

there and getting 6 operations finally being released to a rehab nursing home for 10 days. I had

follow up rads around the area so it is my second time to have rads around the H & N area. I am

doing well now but need a tooth pulled so I am in the process of getting HBOT treatments which I

am into my fourth week which will be 20 treatments. They want me to have 30 and pull the tooth

and 10 treatments afterward. I must say I have had 2 major cancers and they do add up on you.

No matter enjoying life each day and thanking God for getting me through it all and providing so

many dedicated doctors, nurses, rehab people, and many too numerous to remember them all. I

was just an avid reader till I got my second cancer then I joined CSN. What a great group of

people taking care of each other. Greatest wishes to all-Take Care-God Bless-wbcgaruss.

Checking in December 12, 2021. First off I would like to honor Hawvet for his service to our

country and his dedication to this board and for starting this roll call and second, I want to

sincerely thank CivilMatt for taking over and keeping the tradition going since it is always nice to

hear one way or the other how our H&N folks are doing, sort of a class reunion so to speak. I am

sure it is a lot of detail and work to keep it up to date but CivilMatt is doing a great job. Now for

me, Throat cancer 2012/2013, Tongue cancer sometime in 2018, Lymph Node Cancer- 2019

I have had radiation twice, chemo treatments, a port, feeding tube twice, a trach, HBOT

treatments 30 initial and 10 post tooth extraction and could only complete 6 post treatments as I

had developed double vision, chest tubes for fluid around my lungs during the 2019 hospital stay.

Also, temporarily had a Nasogastric tube during the 2019 stay. Side effects from treatment include

dry mouth, neuropathy, minor tinnitus, swallowing issues, damaged muscle from lymph node

operation, damaged or partially paralyzed vocal cords from nicked nerve or many intubations ,

numbness left side of my face.I have had more than my share of medical devices installed in/on

me and if my experience with them can help someone, great. I have had more than my share of

medical devices installed in/on me and if my experience with them can help someone, great. CM

says “that if we are having a contest than Russ wins!”. Checking in January 2022,wbcgaruss

checking in on January 2, 2022, for the 2022 roll call from Southeastern Pennsylvania. Hello

everybody. I am doing pretty well considering the treatments and operations I have experienced.

So far I have survived cancer 3 times due to God's Grace and the wonderful medical teams,

nurses, etc. he provided. At this point, I have the usual H&N leftovers from treatment such as dry

mouth, compromised taste, mild tinnitus, neuropathy, etc., and most recently it seems my taste

has diminished a little more. But I still have some so no complaints. Also, something new, I have

really gotten averse to any spiciness in food, even pepper added makes my head sweat, and my

mouth stings mildly with anything spicey. I am thankful I can still eat but I am getting slower and

am careful with my swallowing. The pills I take such as capsules form are opened and dumped in

apple sauce to swallow and solid pills are ground up and mixed in apple sauce. The only pill I trust

swallowing is the small Thyroid pill I take all the rest have a risk of getting stuck. Dilations may be

in my future. So forward we go into 2022 (Twenty Double Deuce) and wishing all the folks here on

CSN H&N the best possible year ahead and especially wishing you all NED (No Evidence of

Disease) and clear scans ahead. If you are reading this Don't Wait just jump in and do your "Roll

Call Update" because interested people want to know.Take Care-God Bless-Russ

Wboaz (OM) from Oregon. Joined in 2006, dx’d with Squamous Carcenoma of left tonsil.

Checked in 05-12-2009. Spot showed in right lung at followup. Another scan In two months.

Wife for Life from Missouri. Joined forum 02-2010, enrolled April 15, 2010. . Husband DX’d 11-

06-2009, Stage IV, SCC w/primary BOT, MET to lymph & tonsils. MIA and checked back 09-24-

2013NED and ran 5K on last birthday.

Wild Willy from North Carolina, joined forum June 2012, enrolled February 2, 2013. DX’d right

tonsil cancer. Checked in July 31 w/no taste and about 70-80% saliva. Pain in neck/ear but doing

well. Checking in Jan 25, 2014 4 yrs out in March. clicking right along. Check in July 13, 2015.

Check in Aug. 12, 2016, still kicking and dealing with what we were dealt. 2nd check-in November

2, 2016, still kicking and getting along pretty good. having trouble swallowing. Can’t remember

very good. don’t know if its old age (76) or leftover chemo problems. just got back from my 15th

wilderness elk hunt in Colorado. Checking in August 15, 2017 still in pretty good shape. sore

throat and trouble swallowing. had throat stretched a month ago but no help. another throat

procedure in October, hope this helps. will be 78 in February and still able to ride horseback daily

and go on my Colorado elk hunts in the fall. i will admit sleeping on the ground is getting harder.

Checking in June 20, 2019, still going. still no taste, still trouble swallowing. all the pains we all

have. memory shot to hell.

Wolfen (cargiver to spouse) from Arizona. Joined in 2009. Husband diagnosed with BOT,

Nasopharyngeal, Left Lung – 2012. Also DX’d with secondary primary, not MET w/cancer left

lung. Due to medical complications, no cancer treatment at this time. Had 13 teeth extracted.

Power port and G-tube placed. Already lost 60 pounds and very weak. My husband lost his battle

in May 2013. Although my husband was called home, I remain to honor his memory & to be of

help in any way that I can. Also, I am the Caregiver and Mother to Johnnybegood diagnosed with

Colon – 2008. My daughter, Johnnybegood, is a member through the Colon Cancer forum. She

lost her battle July 2014. Time marches on with the love of my CSN family. Check in July 11,

2015. Checking in January 31, 2016 I am still here on the sidelines watching over all of you. I so

admire the strength and tenacity each of you have as you fight this beast. I still struggle daily

with the loss of my husband and daughter. Not sure what will happen to me and my big dog as I

face the loss of my home, but it cannot compare to what I have already lost or what each of you

face every day. "Never, ever give up" Luv, Wolfen. Checking in Jan 30, 2017 Still kickin' A$$ and

takin' names best I can. Life goes on in sunny Arizona. Always keeping everyone here in my

thoughts and prayers. Luv, Checking in July 7, 2019, I look at the discussion board periodically.

The posts were such a help 10 yrs ago. Wolfen. Hey CivilMattt. Checking in March 10, 2019 from

mostly sunny Arizona. Tried to sneak away to Montana or Wyoming, but only in my dreams. Then

I woke up. Dang! Slowly adjusting to being a lonely widow, but "it is what it is". I will always miss

my husband and daughter. Cancer destroyed half of my family. Staying on the sidelines rooting

and praying for each and every one of you as you fight the terrible Beast. NEVER EVER GIVE UP!

Luv,Wolfen. October 23, 2019 checking in, Still Here. Sweet CivilMatt, Still here in mostly hot

and dusty Arizona. Had dreams of moving to the mountains, but didn't work out. Another year

older, but no wiser. Getting along okay, just the usual stuff that comes with getting older. and

grandson live with me to help out, along with our 2 BIG dogs, 90 lbs. and 120 l Son s. Will

forever miss my West Virginia hillbilly and my beautiful Kentucky cowgirl.b Life is a lonely place

without them. As always, wishing the best for everyone here. Luv, wolfen

wmc from California. I joined Jan 11th 2011. Larnyx cancer just above vocal cords T3,N0,Mo

Had my larynx remover and 86 lymph glands modified radial neck dissection on both sides. Never

had chemo or Radiation just the surgery from ear to ear. I have been NED the day they did the

surgery. This site and all the ones on here helped me get through some dark times as I accepted

breathing through my neck. We're like an extended family. What have I learned the most; Keep

hydrated, Never give up, Live your "new Life", and help all the new ones going through this,

and honor all the ones we lost. I'm now 21 months and still NED. Che1ck in Jan 13, 2014, July

10, 2015. Checking in Jan 1, 2016, Passed my two year and still NED. Thank you CivilMatt for

continuing this and also for all the support and wonderful advise to all the "New Members" to the

family. I know, stay hydrated and swallow that water. It almost sounds silly we all tell everyone to

do this, but it has been the best advice I got, and it was from you. Checking in Oct 23, 2016

T3;N0;M0; Supraglottic SCC. Lungs were too bad to survive surgery or radiation. Only choice was

to have a full laryngectomy with a neck dissection on both sides, and breath through my neck. Not

a hard choice to make. Never had Chemo or radiation. They put in a prosthesis [TEP] which lets

my still speak with my voice. Not quite the same, and very life changing learning to eat, swallow,

and speak all over again. Three years cancer free. Checking in Feb. 2, 2017 Thank you, CivilMatt.

I don't get to get back that often. I spend so much of my time with the Laryngectomee group. Still

making videos to show my fellow Lary's we can do so many things they [Medical field] say's we

can't do. As a Neck breather, we are told daily you can't do that anymore. So, we respond "Yet",

I can't Yet. You should have seen them when I was waiting for my SLP to come back with her

supplies and I was playing the Harmonica. She just laughed, and said, of course you can. I guess

we get another video? I now have 9 and need to get busy and make 3 more. They help the "New"

Lary's see there is hope. The videos have now reached 87 countries. You can find them on

YouTube just type wmcross51 in the search. As I was reading the last of all our friends we have

lost, it brought tears. So many names that were a part of my life, it hurts. I have lost 6 in the

last few months to cancer. Lost my Brother as well. We all do the best we can, and just one day

at a time. NGU, Never Give Up. In all, I am good and had to have a minor emergency, but they

held the office open for me to turn around and get back to them. The team all stayed and cut a

growth out that was blocking my airway. Please know I do think of everyone daily, and pop in

when I can. I thank you all for being there when it was pretty dark for me. I love and still pray for

you all. The prayer list has grown so long, I just hold up the Book, and say you got this right. I

just had 40 months and my 3 year check up was good. I might be the only one who looks

forward to them. I get to see my Doctor that saved me. Checking in October 27, 2017 Sorry, I

don't get on here much now. I am still NED and just had my 4 year this Oct. At first they thought

I was T4; N2c; M0 and the 3cm tumor was pressing on my vocal cord. Lungs are bad with COPD

stage 3 so I had only one option. That was to remove my Larynx and breathe through a hole in

my neck. Also, do a neck dissection on both sides level 2~5 to remove the lymph glands so If it

came back [25% it could] the cancer could not go there. That was the best decision I made.

Removed 86 total and was cut ear to ear. They put in a prosthesis so I could still talk. I spend my

days on a support group for Laryngectomies. I have been able to find a way to do things we are

told you can't do. My Doctor and SLP at Stanford Medical asked me to do some videos and put

them on YouTube so they can use them. They show them to the ones that will have to lose their

larynx to survive. It seems to give them hope and knowing that this is not a curse. It is a gift of

life. Without it, you won't live. I now have 13 and still, need to do more. The videos have now

been seen in 106 Countries. I was given a second chance on life. I guess this might be the

reason, to help others learn to live with this major change. You should have seen them when they

saw me play the Harmonica, on my neck. Now I'm not that good as I have to breathe to play it

and I had never played one before. It shows them that if you really want it, fight and never quit.

It took 2 months just to whistle, and I was told: "you can't whistle". If I can talk and have no

vocal cords, why can't I whistle? So I showed them I can. Most doctors and hospitals don't know

how to treat us and even give oxygen to us.I have worked with my local hospital so they could

develop a training program to treat us. They didn't know how to get oxygen to me and after a

knee surgery they refused oxygen and said I didn't need it. My O2 dropped to 72% and was

depriving oxygen to most parts of my body. So we worked together so the next time that won't

happen. I am sad to read all the names I knew, and have passed. I have lost 18 just this year of

Laryngectomies. So live life to the fullest every day, and may all your days be better than today.

You are all in my thoughts and prayers. Checking in August 20, 2019 Coming up on 6 years this

Oct and still running a Laryngectomy Support group. We're global and members in 19 countries.

Still doing a few videos to help them adjust to breathing through there neck instead of the ose.

Just trying to help those that need it as I was helped so much. Heck, I wasn't supposed to even

make it but I drew the long straw and beat it. Please all stayw well. wmc

CivilMatt says “could you repeat yourself staring back at where you said, I joined Jan 11th 2011”.

Take care

CM from Oklahoma. Joined forum July 2012. Checked in June 24, 2013. Reported “Still Kicking”.

Wrhbounds, (?) Joined forum January 2013, enrolled March 10, 2013. No details posted except

“started this ride 4/99 still living a full and happy life”. Re-posted 12-20-2013, stage 3, SCC in Feb

1999 so 15 yrs in Feb 2014.

Yensid683 from New York and Florida. Joined forum April 2012, enrolled February 1, 2013. DX’d

on March 26, 2012 with IVa base of tongue, HPV+ w/left cervical lymph nodes involved. two

selective neck dissections. Chemo/radiation ended July 5, 2012 and returned to work in on

September 4. NED in October. NED and going strong! Check in July 15, 2015. Checking in Dec

12,2016, 4 years, 5 months, 7 days since the end of treatments, checkups continue to be

good, just a short amount of time until the magic 5 year pin! Checking in April 26, 2017, Moved

to Florida in March of 2014, leaving the cold, snow and awful memories of treatment behind! 5

years out from diagnosis! Checking in January 02, 2018, crossed the 5 year threshold in July of

2017, doing well and adapting to the new 'abi-normal' that is the permanent aspects of treatment

side effects. It may be a challenge to eat, I have to be careful in the sun but at the same time,

I'm here and doing great! Checking in July 17, 2018, (6 years post treatment) Last rad 7/5/12,

last ENT visit 7/12/17, NED and 'cured' according to the chancre Emechanics....Checking in

February 5, 2019 Still here, DX in March of '12, NED from March of '13, finished with regular

appointments with the ENT, annual visits for checkup. Living the new 'abi-normal' life in central

FL!

Yogi Bear12 from Wisconsin. Enrolled May 25, 2017, 29 year old police officer and army veteran.

Diagnosed with Low Grade Mucoepidermoid Carcinoma located on roof of mouth in February of

'17. After tumor was removed had several scans done to see if the cancer had spread, thankfully

it had not! Second surgery was a few weeks ago and had a large amount of tissue from hard

palate and soft palate removed as precaution. This tissue also after biopsy was found to be cancer

free! No chemo or radiation scheduled. Although things are not normal right now and a bit of a

struggle it could always be worse and thats what keeps my head up and looking forward. Onward

to recovery! I'm hoping this website helps with my mental health regarding diagnosis. Feel free to

contact me with any questions, comments, or just to chat!

Zinniemay, Michigan, posted February 3, 2013 that hubby back to Chemo. Head/neck cancer

went to lungs and undergoing Chemo treatment. Checking in(reported by Pam M) Feb 22, 2014,

posted February 3, 2013 that hubby back to Chemo. Head/neck cancer went to lungs and

undergoing Chemo treatment Checking in Dec 12,2016,

CivilMatt

ROLL CALL 2024

CiviMatt note: May They Rest In Peace is an area where I could use H&N members help. I do

know of a few members who have passed and I will be adding their names to this list soon. I dare

say, there are most likely more names that some of you (reading this) may know. If you share

this information with me, I would be happy to add them to our list.

Head and Neck Members May They Rest In Peace

(I have tried to make this more personal to those of us who knew those members (no longer with

us). I tried to pick out a few comments by Head and Neck members which describe how many of

us felt about our dear, departed friends.

accordiongirl Posted on May 19, 2019 that her Mon had passed away on Friday May 17, 2019 from

her diagnosis of throat cancer. “She was doing quite well, considering she chose to forgo

treatment back in September when she was diagnosed. A week ago, we were all at her

apartment eating "Mother's Day" cake - and even mom was able to eat it. (She had some issues

with getting certain foods down.) And now she's gone. It's an awful loss for me and my kids and

husband. Even so......i am SO grateful that she didn't endure months of torturous pain (she had

NO pain in her throat, even though that's where the tumor was) or lose weight to the point of

being unrecognizable. Mom LIVED her last 9 months and saw so much of our lives and shared so

many events and memories. i am going to miss her more than i think i can even fathom”. As

expressed by wbcgaruss, “Deepest Sympathy. It is hard to see parents go but in your situation

knowing your time was limited made the very best of it and had some great times with your mom.

I pray for comfort and strength for your family in the days ahead-God Bless”. As expressed by

Caregiver wife, You have been a great daughter for your mother. Bless your family, Crystal. As

expressed by swopoe, “I am so sorry for your loss. May your mother‘ s memory be a blessing to

you and your family. “

Bany, Canada, 2008, Dad (TR2), SCC of the maxil lary sinus. Enrolled on July 30, 2009.. Dad

completed treatment 03-2009, Dad lost 70 pounds. Bany later reported that dad passed away on

11-02-2009.

BarefootBob. There is no record of enrollment, but reported by CivilMatt on 12-13-2013 that he

passed away on January 7, 2013. As expressed by CivilMatt ‘This H&N member was really cool, he

endeared himself to you when he opened up and talked about his cancer. The Cancer took over his

body rather quickly which moved him into this section of the Roll Call. always ended a post with

“his love”, he will forever be one of my dear H&N friends I have made on this forum”. He was (AE)

by CM with HAWVET’S permission.

Buzz99 (Buzz) As reported by his wife on Aug 23, 2012. “Buzz passed away August 19, at home.

I was at his side. His tongue cancer recurred in May and despite palliative chemo, the cancer still

grew. He was placed on Hospice a month ago. I want to thank everyone on the forum who helped

me through the difficult times during his treatment and illnesses. God bless you all.”

Calcat Reported by Longtermsurvivor January 17, 2014.” Calcat lived in California.

Catluver96 passed away in March. Mets to bone in pelvis and leg. Also in brain. Reported by

KTeacher May 22, 2014. she died last year following a long battle. I received an email from her

husband a few months back to memorialize her passing. She was a fighter, not well known to

most people here, as she didn't post often, preferring time in her flower garden.”

LitlCJdoll (Crystal) As reported by wbcgaruss “It is with great sorrow that I bring the news that

Crystal passed away on September 12, 2022. She was a true warrior in her battle with cancer and

a staunch supporter of others here on the forum” She had extensive medical knowledge and

understood much and freely shared it with the forum. She also helped many through private

messaging and was known to freely send gifts to others to help cheer them in times of trouble,

including many here on the forum. Crystal kept going when it surely seemed impossible to go

anymore and amazed us and set a good example for us with her tenacity. I would personally

estimate she endured afflictions and situations that would bring a strong man to his knees. She

was certainly an inspiration to us all. She will be greatly missed.

Crystal has also dealt with a problem for many years since she was young and surely contributed

to her getting cancer. CVID or Common Variable Immunodeficiency. She explains it on this

personal quote from Quora forum--

“I have Common Variable Immunodeficiency. I also have Stage III Head & Neck cancer,

recurrent… and as a result of both those diagnoses, I now have irreversible lung disease,

Bronchiectasis …( and liver disease too.)

Anyway, for the past 30+ years, every 28 Days I go into the hospital, admitted for an infusion of

Intravenous Immunoglobulin. IVIG. It wasn't until 1986 that this product was available in

intravenous form. Before that, it was a very painful weekly injection into muscle.”

“Its a very easy treatment compared to my cancer treatments and many other procedures I go

through. IVIG is only a partial treatment f me. , its only one component, IgG. It contains nothing

else. Therefore it cannot replace my absent IgM, IgA, and the all important lymphocytes ( T cells,

natural killer cells, etc) which I am low in. Its a bad set up for my recurrent cancer…I have poor

Immune Surveillance and poor/ absent ability to recognize and kill cancer cells. My cancer

returned as an aggressive tumor, even after Radiation treatment.”

Fight on. Fight on and Never give up.Crystal

As expressed by motorcycleguy Dang, I took a week off, to help my Dad get into assisted living,

and missed this news. I sent her a message, yesterday - telling her that I hadn't heard from her

in a few days. Crystal and I corresponded for years, and I was always inspired by how she would

support ME - even when she was going through the worst experiences. I miss her feisty

personality, and I feel I'm a better (and stronger) person - for having known her!

As expressed by Login51 Sorry to hear this, but she knew as well as most of us this was inevitable

with all her afflictions. Yes, quite a brave One who fought the good fight.

Very sad to hear this news. Even in the latter stages of her illness she found time to correspond

with a fighting spirit. May she rest in peace.

debbiejeanne The news of Debbie’s passing on January 25, 2021 was sent to CivilMatt by wmc. As

expressed by wmc, I had doubts it was the person I knew because of the names used. But the

photos confirmed it wa

s debbiejeanne. It hit me hard. She was the first to welcome me to the H&N forum and she

encouraged my decision to start and run my own support group which I did start in February of

2018. She was very active in another group and helped in the administration of it. I knew she

recently had a setback but it is always a surprise when a friend passes. As expressed by CivilMatt

we were both busy with the H&N form, she started back around 2010 with a very active group and

continued to trade emails with me until a few months before her death. I found her to be very

nice and I was glad she stayed in touch with me.

Delnative Delaware, Diagnosed Stage III SCC Right tonsil in 2008. Enrolled February 2, 2010. As

reported by Skiffin16 that “MarineE5 had found out that he had passed away on Feb 25, 2012, at

home, of metastatic head and neck cancer caused by the human papilloma virus”. He was 57. As

expressed by ratface, “as he was a professional writer I always found his wit and prose to be

refreshing and right on point. I raise my cognac to you, goodbye dear fellow! “ As expressed by

davidgskinner “that is very sad news. He was a very uplifting and positive force. His posts made

me feel better many, many times.” As expressed by Glenna M “I've had a hard time getting the

waterworks to stop since hearing about his passing. He was such a sweet caring man and one of

the first people I met when I joined here. “ As expressed by D Lewis “Thank you for all the

encouragement you gave me as I traveled this path. Your wit, humor and stylish fedora sustained

me.”

edie201 Reported by his wife June 21, 2016. “Good evening: This is my first post regarding drug

trials. My husband, who had stage IV metastatic head and neck cancer, joined a phase one drug

trial involving Keytruda and incye 02436 at the U. of Penn. Cncer center in February 2016. Within

three weeks he was hospitalized and dropped 15-pounds during his six day stay in the U. of Penn.

Hospital. The drugs made him very sick and no one was concerned he had lost 15-pounds except

me. He was dropped from the trial and died on May 5,2016.” As expressed by swopoe, “I am so

sorry for the loss of your husband. He was a hero. We will recognize him for his contribution.

Thank you from me to him”

EricaA Reported by her daughter Oct 28, 2012. “Hello everyone. I just wanted to let you all know

the sudden and devastating update about my mom. She passed away yesterday morning. I found

her on her bed, slumped over. I was home with her and had just spoken to her about an hour

prior to finding her. My sister had called and talked to her as well. We do not know the cause of

death, and since my mom did not want an autopsy, we may never know. She had been doing

good and as I told you all her first PET Scan results showed that the mass that was in her neck

was gone. It also showed a small spot on her liver, which she was scheduled to have a biopsy for

tomorrow. For the short time that I've been on here, I really appreciate the support and kind

words. My mom appreciated it as well.”

Frank 10G Reported by Hondo January 14, 2014 Frank 10G passed away last year, “he was a good

man who did all he could to fight this C but in the end he lost the battle. “

Glenna M, New Hampshire, enrolled on January 31, 2010. DX’d SCC laryngeal and NSCLC Aden

carcinoma in left lung in May 2009, Checked in January 16, 2012. Just finished chemo and waiting

to start clinical trial w/Sinutinub for recurrence of NSCLC now in both lungs. No problems w

laryngeal after 2 ½ years. Unfortunately, she lost her battle six months later in July 2012. May

she RIP. Reported by Skiffin16 on February 1, 2013. As expressed by Skiffin16 “I remember the

times talking to Glenna of the birds playing outside her windows on snowy mornings. Of her dogs

that she loved so much..her grandchildren, her husband....I'll miss those conversations.” As

expressed by Pam M, “Her passing brings home the notion that dying because of cancer does not

mean you've failed. Most of us know that Glenna M has succeeded in many ways, love of family

and others and enjoyment of life”.

GreenD Reported by Skiffin16 on Jul 6, 2013 that “GD passed away January 5th of this year...GD

was a special guy.... He served many years in the Air Force and retired a Major..I had the pleasure

of meeting him and his wife on a trip of theirs to Floirda... My wife and I met them at the beach

for lunch with his wife... GD was one of those unfortunates that was on a feeding tube for life

after treatment...He was one heck of a guy, and I'm glad I got to meet him and have a beer

together. Thoughts and prayers to his family.”..Expressed by phrannie, “I always loved his sense of

humor....he rarely posted anything that didn't elicit a smile from me. “ As expressed by Ingid K

“He was a great inspiration to many of us. I loved to hear his stories about what he tried (and

succeeded) to put thru his PEG.”

Hondo Louisiana, Honduras. Reported by his daughter on April5, 2017. “I wanted to let everyone

know that he passed away Monday. He has been struggling with pneumonia from aspirations

since August. He was hospitalized about a month ago and since then was just unable to bounce

back. I know you all meant so much to him and gave him so much support and uplifting during

his struggles.” As expressed by Tim6003 “You will be missed, your faith was contagious, thank

you for that faith and your kindness to all of us who looked to you often for feedback and advice.”

As expressed by ratface “Perhaps the most welcoming person with endless kindness to offer, we

had become friends on the boards thru the years, so sorry for your loss.” As expressed by

Grandmax4 “It is with great sadness, I read of Hondo's passing. I don't believe I've ever had the

pleasure of knowing (through CSN ) such a gentle man, but, a fighter for life until the end. He

loved his family. My deepest sympathy to his family and friends)”.

Hunpot, Massachusetts, Mom passed away, August 18, 2008 (Squamous cell carcinoma top voice

box). Checked in Jan 2009.

Jagged, Washington, Diagnosed Breast 2005-Esophagus 2007 and lungs 2008. Enrolled on

October 29, 2010. Checked in on March 29, 2010. Unconfirmed that she may have passed away.

Jan Trinks reported on Aug 23, 2010, I have very sad news to report. “Charlie passed away Sat.

night Aug. 21. He had a gi bleed; low blood pressure, electrolyte issues, low blood counts,

severely dehydrated. He was admitted Thursday afternoon and was doing better; but on Sat.

began having problems breathing and they had to keep pushing fluids to keep blood pressure

up….. I loved him so much and do not know how I'll get along without him but will find some way

as that is would he would have me to do…. Just wanted to let y'all know and please keep us in

your prayers as I know you will and to everyone out there "Don't ever give up!" Fight this monster

with all your might and God's help! I love y'all”! As expressed by Kimba1505 “This is the first post

you did not sign as "Jan and Charlie". Hearing your pain, wondering how you will go on without

him, it is clear what a very sad and difficult time this is. I believe there will always be "Jan and

Charlie". As always on these message boards, when we rejoice, we do it together, when we go

through treatment or a procedure, we are together, Jan, as you face this loss, we are together”.

Jcortney Texas Reported by phrannie51 on March 10, 2017 that she saw on Facebook where Joe

had passed away at the end of January. As expressed by phrannie51 “He was a rock for me when

I had the recurrence last year....a positive and very humorous guy”. As expressed by donfoo, “So

sorry to hear. We were on the same bus, nearly identical profile, treatment. I followed in his

footsteps. As our "new normals" veered off, I always hoped and prayed his journey would veer

back onto the tarmac. So sad”.

jim and i reported by his wife on April 18, 2015. Shortly after the original post “He breathing

started to change and he breathed his last breath soon after. I believe his spirit left before the last

breath because I felt the most awful pain in my heart. Even though I thought it would be a relief,

it was devastating when the nurse said, "He's gone." I say, "Gone from my sight, but still in my

heart.". Bless you Debbie.

KareGiver Reported by his wife, Thank you for starting this thread (HPV). I check in occasionally

and will be upfront right now - my husband did not survive this cancer - passed January 2013.

Saying that, he had throat problems for YEARS before and was treated by ENTs for acid reflux. I

have had absolutely NO problem telling people, when asked, what type of cancer he had (when

you say throat, they assume smoking was involved, of course). Some people mistake HPV for HIV

- although that is becoming less frequent. We MUST continue to educate people about this -

especially men. My husband was diagnosed in 2011. Things have come a long way and I have

great faith that you will live a long life. Best to you and your famiy during treatment. You got

this!

Kritter, Louisiana, as reported by Hondo on February 27, 2016, “Hi everyone I am sorry to inform

you all that our friend Kritter passed away last night and she was a wonderful person to know.

Please keep her husband and family in all your prayers, God bless you all”. As expressed by

MrsBD “She went through so much yet kept her sense of humor. Last year she turned her

radiation mask into a decoration for Mardi Gras. May God be with her family as he now holds her

in his arms”. As expressed by wmc “Yes this is very sad news. She fought so hard to beat it, and

was such a wonderful person. Heaven has another Angel”.

KTeacher California, As reported by phrannie51 on February 1, 2016 that KTeacher passed away

on January 19th. As expressed by Grandmax4 “RIP Kindergarden T, you fought a hard and long

fight, but, still lent encouragement and kindness to others”. As expressed by MrsBD “She truly

was a role model. Kind, wise, and always encouraging”. As expressed by CivilMatt “Bev was one of

my most beloved, trusted and favorite members I have met here on the H&N forum. She will be

fondly remembered and greatly missed”.

Ladylacy (caregiver to Husband) Georgia. Checking in for husband, diagnosed with laryngeal

cancer in 2010. Ladylacy posted on July 25, 2015 “My husband lost his battle this morning. He

fought hard for 5 years. I am so thankful that it was peaceful and he is now at peace. Now the

changes begin for me as I had him for 55 years for which I am thankful.”

Lelia As reported by Buckwirth on Oct 4,2011, “Don Passed away unexpectedly on 9-15”. “He was

a lawyer and, among other things, specialized in drug laws. One of the last things he did (and

while he was in treatment for H&N) was an interview with the staff attorney at Drug Policy

Alliance”. As expressed by skiffin16 “So sorry to hear....always like losing a family member”.

Lisam61 As reported by Hondo on May 12, 2010 “Hi Everyone I don’t know if you remember

“Lisam61” but I am sitting here very sad tonight hearing that her husband Luis has passed away

a few weeks ago, please continue to keep her in your prayers. As you remember his NPC cancer

was treated but then they found it in his chest. He was taking Chemo and got an infection in his

PEG tube that they did not see until it was to late”. As expressed by MarineE5, “unfortunately,

those of us here, will continue to look over our shoulders for the enemy we have had to deal with.

But, we go on, with our scars from the battle. By doing so, we continue to give hope to those that

hear the words " You Have Cancer " for the first time. We continue to be on patrol to guide the

new members through this rough path”. As expressed by sweetblood22 “I think you guys were

the first two to welcome me here. I appreciate it. :) I tend to get a bit anxious at times and I am

glad that I have the people here to keep me off the pity path for too long anyway. You guys

always seem to have the knack of saying the right and caring thing. Thanks. And thank you to

everyone here. You have all given me a better quality of life”.

Littlemisskitty (caregiver to Mother) “My mom passed away on January 5th, 2016”.

“She was told at Thanksgiving time after a PET scan she encouraged that she would have a year if

she participated in trials. After a second opinion She was told she did not have a year left and

instead her file said 2 weeks. She was not supposed to make it to the new year. The doctor

wanted to release her to a rehab facility (no idea why) but I instead called hospice and had it set

up so they would come to the house. Within 4 hours we had a special hospital bed, a suction

machine, bed pans and pads, oxyfast, and a nebulizer all set up and she was brought home. My

sister was able to spend the day along with her two children with mom that Friday, the day after

she came home. She drank (mostly coughed up) eggnog to celebrate the new year, sat with the

children spending time with them, sat with Rachel talking with her and had a pretty good day. On

Saturday she sat with me and talked for hours. She even drank a full bottle throughout the day of

ensure, talked of how she wanted a special recliner chair like grandma's to sit in so she could rest

her broken leg on it (they had only put a removable cast on her so walking wasnt possible) and

how she had planned to beat their two weeks odds). Sunday she slept most of the day as they

decided even though oxyfast was working perfectly, that she should be on morphine to help her

breathing. They put her on a morphine pump Saturday night and she barely woke up on Sunday

but Sunday night she heard my dad's voice. She called out to him and he sat with her and talked

with her until she fell back asleep. That was the last time she awoken. She was courageous and a

fighter until the end when she slipped into a coma only to die hours later. She is greatly missed by

her family. Thank you so much for your support and help. Having people who had gone through

radiation and chemo before and who had gone through the steps had helped both myself and

mom greatly. I hope you continue to help others who get this terrible disease and help others to

conquer it”. As expressed by wmc “Over my lifetime I have heard so many people regret they

never got to say, I love you, or even goodbye. You got that chance, and you were there. I do

wish you and your family Peace, as you are part of this family as well

Little One (This death notice was posted on May 26, 2016.) dx’d with SCC in October 2015. He

had surgery to remove what we could, then Chemo and radiation. He lost his fight June 15, 2016.

He was a Viet Nam Vet and served In Country. I applied with the VA and have given them all they

have asked for, yet they turned me down. They said it isn't on the list of presumptive cancers, yet

it should fall under the soft tissue cancers. I have read in one of these Forums on here that it has

been fought and won...but I have no clue how to get started. I know I didn't explain that right. I

tend to get anxious when I talk about it. If anyone can point me in the right direction, or give me

some links to look at...any help would be greatly appreciated. Little One. As expressed by

MarineE5, “I want to extend my condolences to you and all your family on the passing of your

Husband/ Vietnam Veteran. I was there in 68/69”. As expressed by Chicklette, “I just want to

express my heartfelt condolences on your loss. I thank your husband for his service”. As

expressed by CivilMatt, “I am saddened to hear of your husband’s passing from this terrible

disease. I am not much help with your other question; I just wanted to say I am sorry”. As

expressed by Tonita “my condolences as well. Good luck in finding what you need”. (Please)

Note: MarineE5 continued on with his response and provided Little One with the much needed

information she was seeking. Thank you MarineE5 for going above and beyond and for your

military service to this country and to the H&N forum.

LongTermSurvivor (aka a real doctor to the H&N forum) passed away February 10, 2015 at 6:00

a.m. as reported by his wife. She said “he NEVER complained one day of his life or felt sorry for

himself. He battled this since 1998 and then the recurrences began in 2010. He was the most

wonderful spouse, father, grandfather, physician, brother, son. I have for the 15 years of our

marriage admired his strength and ability to reach out to others and offer his assistance. I was so

glad that he was able to help those that reached out to him. He so wanted to truly help. At this

time. I am taking Pat's life insurance to form a foundation for Neck Cancer named after Pat. I feel

led to carry on what could be a memorial to him forever. Pat was my hero and he is greatly

missed. It is a daily struggle for all of us. But, his presence is felt”. As expressed by CivilMatt I

only knew LTS for a brief few years but, he always made time for my quotations, often sending

me PM to go over my issues. He loved to hike around the trails where he lived and I would follow

him on Google Earth and other internet sites to show my interest in what he was doing. I know of

other H&N members who played chess with him. This was a once-in-a-lifetime friendship which all

the members of this forum who knew him, experienced”.

luv4lacrosse Missouri passed away on March 9, 2015. As expressed by Greg53, “I know he was

greatly admired on this site, for his toughness and compassion. Luckily for me I was able to see

this firsthand as we met on a regular basis” As expressed by katenorwood, “He was a gentle soul

on site here, giving many inspiration to continue the battle”. As expressed by phrannie51 “He

was such a fighter, and always so positive. His words helped me out many times during treatment

and after. Rest in peace Mike”.

Meegs As reported by Goyca on May 15, 2015, “I am so sorry to tell you that our friend Meegs

passed away on May14, 2015 at the age of 29. Her fight started with esthesioneurblastoma but

then the reoccurrence reached her brain and then spinal cord….I glad that I met her here and

chatted with her over the past year, she was such an inspiration and supported each other during

our fights. u should all know her smile never left her face. Such a hero….please lets all pray for

this beautiful soul. She is our angel now”. As expressed by KTeacher “So sorry to hear this news.

She was so young. I am glad that you were able to connect with her. I do not like cancer. (I

don't swear, but this would be a good time)”.

MOM674, Passed away in December 2008. Was a brief member, fought hard…reported by knobby.

Mswijik, New York, husband diagnosed laryngeal stage IV - September 2010, enrolled January 16,

2010. Report on March 6, 2011 that he passed away on February 17, 2011.

Newbride as reported by his wife on Dec 12, 2009 “Thank you to everyone on the board. I just

wanted to let you know that sadly, my husband passed away at 3:00 a.m. this morning. I don't

think I could have gotten through the past several months without all of you”. As expressed by

Dazey, “May the angels surround you with their wings and may old friends and new ones, help

you through this difficult time”. As expressed by KentCass , “all of our hearts are with you”. As

expressed by Scambuster, “I have just now retraced your journey and am so sorry to hear your

news. This horrible disease does not discriminate and your story has touched me and made me

more grateful for each day and I am so much more thankful for my outcome from treatments”.

Nick770 Ohio. Joined forum May 2012, enrolled August 30, 2013. Reported by TheOtherDitto on

June 7, 2014 “Facebook postings indicate that Nick770 (Nick Fama) lost his battle with this beast

this morning. Please keep his wife and 3 children in your prayers”.

Nkimber As reported by adventurebob on Aug 10, 2011, Nkimber passed away yesterday

afternoon, dx’d Mucoepidermoid Carcinoma of the Minor Salivary Glands (throat), with lymphatic

spread and mets to bone. Apparently she wasn't doing as well as she always wrote (she was so

strong and positive)and yesterday the artery in her throat gave out and she bled to death in her

father's arms quickly. As expressed by forme I am so saddened to hear of her sudden passing.

Her young spirit and strength really touched me. Her kindness was so genuine. I am so sad. As

expressed by kimba1505 And then all the feelings come...sadness, anger, the reminder of the

strength of this disease. I went back to NKimber's first post on October 19th 2010. She was 31

years old when diagnosed. I also recall her posts to be amazingly upbeat and positive...and so

beautiful. My heart goes out to her family and friends.

CivilMatt

Noellesmom, he passed away last night, December 29, from a new cancer obstructing his airway.

He broke medical records surviving 7.5 years after successful treatment of Stage IV

hypopharyngeal cancer. As expressed by swopoe Oh no. May his memory be a blessing to you

and your family. As expressed by CivilMatt “I remember talking with Noellesmom about a B.L.T.,

there were some good things along the way, Bless you”.

Phrannie51, Montana. The sad news was delivered to the Head and Neck forum on Monday,

December 30. 2019 at 8:23pm by a Head and Neck member debbiejeanne “Hello all. I have not

been here for a while but some members from here are also in a FB group. Our member, known

as Phrannie51 on the Head and Neck forum, gained her wings last night. I am pasting this post

from her family so the info provided on here is correct. Phrannie51 was a great person, always

positive and straight forward. She fought cancer twice and never let it stop her from living! She

will be greatly missed by all her knew her.” As expressed by D Lewis: “Chiming in from the 'Class

of 2010' here. Phrannie51 was a source of love, humor, guidance and support, and we have

stayed in touch via Facebook over the intervening years. I don't believe I would have made it

through treatment without the endless support provided by Phrannie51 and all of the other

wonderful folks here. I don't have words to express the gratitude I feel. Rest in peace beautiful

Phrannie. You will live on in my heart forever.” As expressed by wmc: “I have known Phrannie

for 6 years and watched her offer support to so many, including myself. She always was cheerful

even when hanging from a fan when she had to have a scan done. My prayers are with her family

and friends. There is no more pain and she is at peace. Jackie will be missed but never

forgotten.” As expressed by Mikemetz: “Like all of you, I thought that Phrannie51 was one of the

very best souls in this community. She was funny, witty, kind, supportive, and so strong in her

support of others and her battles with cancer. I had a number of PMs with her over the years, and

considered her my "good friend that I never met in person." As expressed by swopoe: “May her

memory be a blessing to her family and friends. I know it will be to mine. We love and miss you,

Phrannie51! As expressed by Guzzle: “Deeply saddened by this news. A lovely lady. YNWA

Phrannie51”, As expressed by wbcgaruss: “To this forum and the many people she helped

personally and through the forum overall. She had a big heart and was always there to help

others. She will be greatly missed. Sincere condolences to Phrannie51's family and to the CSN

family she gave so much time to. She was always upbeat in any given situation and lifted many of

us up when we were down. She showed us how to keep enjoying life and look ahead even while

fighting a dreaded disease. She will be dearly missed. As expressed by Grandmax4: My heart is

heavy at the loss of our precious member and friend, we knew as Phrannie51. Continuing our

friendship on facebook, I've laughed, cried, cheered her on, as she fought this beast. Never met in

person, but, she showed what a true friend is. Deepest thoughts, prayers to her family and

friends. Betty & Benny, and her other beloved pets. As expressed by lorijeannj: We all need a

Phrannie51 in our lives. God bless Jackie's family. As expressed by MarineE5: Forever in our

Pockets . P-51 was a WW II fighter plane. Phrannie51 reminded me of a true Fighter and was also

nicknamed P-51 by others. She will forever be in our Pockets. As expressed by ratface: I will miss

her, always tried to offer good direction with her experiences and you knew she really meant

every word she typed here! A real caring soul and a really good person at heart! As expressed by

corleone: So saddened to hear that. I had the same type of cancer (NPC), treated the same year

(2012), but she was a few months “ahead” so she helped me a lot with some very good advices

and encouragements. I was under the impression that the latest treatment was working, so this

came as a shock for me. She was my inspiration and she is greatly missed! As expressed by:

Wolfen I was honored to have lunch with her and her husband on one of their Az visits. Such a fun

and sweet lady. She will surely be missed. As expressed by: GavinP In my darkest hours several

people here helped to calm me down and got me to pull myself together. Phrannie51 was one of

those people and I distinctly remember her telling me to calm myself and "it's not cancer unless a

doctor tells you it is" - a CSN moto that I have taken into real life situations over the years.The

kindness and warmth Phrannie51 (and everyone else) showed me made such a difference on that

long, dark winter night. I have always rememberd it and over the years I have continued to check

back quietly to see how you are all doing. The loss of Phrannie51 is such a huge blow and I'm so

sorry to hear it.RIP to Phrannie51 and I'll be keeping her and her family and friends in my

thoughts. As expressed by: tommyodavey This one has shocked me to the core. Phrannie51 and

I go back to almost the same time. She supported me and it was hard to watch her go through

the illness a second time. RIP dear friend. As expressed by: LeoS2323 My impression of

Phrannie51 was she had lived the equivalent of several lives, and that she got the most out of

single every day she had on this earth, even when things were tough. As expressed by: Donfoo

This is news nobody wants to hear. She was a warrior and never quit. After the recurrences, my

worries for her kept growing. My great fear coming here is seeing posts like this. I was really

hoping to visit her but just never got it together.

pscott10 As reported by his wife on Oct 16, 2002, My husband was diagnosed with Oral Cancer a

little over a year ago. We have struggled through treatments as the cancer spread and returned

without mercy. I know that he has communicated with several people through this website. I

wanted to let those people know that he passed away on Sept. 17th. He was a wonderful person

and will be missed by so many people. I want to express my appreciation to those people here

who supported him . It was a relief for him to communicate with people with similar experiences.

Pumakitty lost her Mom in 2013 and her Dad (H&N) 2012 she has been through a lot in the last

few years. Please, keep her in your prayers.

Ray Todd, Down Under, reported by Skiffin16 through FaceBook posting on May 2, 2015, “Ray is

on his final journey before leaving earth. He is resting comfortably and preparing for his final bike

ride”. “Please, keep Ray and his family in your thoughts and prayers during this time”. “I will

miss you ole man…”

Robinleigh, (caregiver for Andy) Alabama, Andy DX January 2011, SCC primary tonsil. Had

surgery, metastasis to pelvic region bone, in clinical trial and fighting hard. Unfortunately, wife

reported that Andy passed away in September 2012.

Sherylcv 13 Reported July 26, 2017 So, my husband passed away peacefully yesterday at home.

His BOT and Oral tongue cancer had recurred in his throat and metastasized to the skin on his

neck and to his spine. Thank you all for your very positive posts and vibes. Expressed by swopoe

So sorry for your loss. May his memory always be a blessing. Sending my love. Expressed by

caregiver wife “Very sorry of your loss. God Bless”

soccerfreaks It was reported to the ROLL CALL in November 2018 by SASH that soccerfreaks had

passed away recently. soccerfreaks was a dynamic personality and was extremely active and

important to many members in the H&N forum. I will share some of the member comments about

him during 2010, fishingirl-Has anyone heard anything from soccerfreaks? I haven't seen any of

his posts. Or maybe I have skipped past them, without knowing. He was very helpful as well:)

Cindy. sweetblood22- I just noticed that he did not respond to Denisd when he posted. I know

that he has a blog. I checked there and I think the last post is 23rd of April. So, I don't know.

Have not seen him post either. debbiejeanne- I haven't seen anything either. I pray he is al. If

you hear from him, please l et us all know how he is doing. fishingirl-Yes. I hope he is alright too;)

Spazactaz Reported by StaceyRae on Nov 12, 2013, I was browsing through the message boards

here and I wanted to thank you all for the support you have provided to (spazactaz) through his

battle with cancer over the past year. Unfortunately he passed away on November 7. It was nice

to see the supportive and encouraging comments from the members of this board. I know it

helped Jesse to have a place to turn to for advice, somewhere he could talk to others who were

experiencing the same things as he did. Expressed by hwt “So very sad and sorry to hear. I am

glad this forum brought some comfort to Jesse. Prayers for your family and Jesse's loved ones”.

Expressed by debbiejeanne “may you find comfort in your memories of Spazactaz and may they

help you thru this terrible time”.

Spotsman Reported by Hondo on Feb 18, 2013. “I am Sorry to let you all know that Larry

Sportsman passed away yesterday”. “Please keep his family and Wife in your prayers”. He was a

wonderful Christian Man who put his faith in the God that he loved. Life is so dear and we should

all cherish the time we have with our love ones every day. As expressed by Skiffin16, “this never

stops hurting”.

TheFitts Reported by his family on Sep 18, 2012. Thank you so much to everyone for thier help,

advice, and prayers for Bobbie. Bobbie passed away Monday while at home. He was diagnosed

with Stage IV about four weeks ago. A week later he had a trech, chemo port, and feeding tube

put in, was discharged about a week later to a nursing home because he had c-diff. Bobbie told us

he didn't want treatment, just wanted to come home have a few beers and live his life the best he

could. We got home about 6 PM on Sunday, he had a few beers and a few cigarettes. Throughout

the evening, we were sitting in the den and he kept coming to the door way and would just stand

there looking in the room and at us. We'd ask if he wanted to join us, how he was, did he want to

talk. He would just say he was fine and walk away and return in another 20-30 minutes. Monday

when he and my husband got up, they went for a walk in the park, came home and Bobbie heated

up some soup, they talked a while, Curtis asking if he was okay, Bobbie just replied, :Curtis I am

fine, I'm just a little sick, I'll be okay." He said bobbie said something to him and then left the

room, he went looking for him about ten minutes later and found him passed away in the

bathroom. They believe it was a blood clot. Looking back Bobbie’s odd sense of urgency to leave

the hospital that he just couldn't wait to get home, combined with his coming to the door of the

den all even just makes me feel like he knew. Maybe he didn't know he knew --- but somehow he

sensed he had little time left, he wanted to get home and relax where he was comfortable. My

husband was devastated to find him - that was one thing he didn't want to happen, he said from

the beginning he didn't know if he could handle being the one to find Bobbie...we assumed that as

things progressed if that time came he would be in the hospital or hospice. i keep reassuring my

husband that Bobbie was more happier than he had been in a long time and would not have

wanted to be anywhere else. Thanks again to everyone for being there.

ToBeGolden Washington Rick’s wife relayed to CivilMatt in a phone call ToBeGolden’s house that

Rick Passed away in October of 2013 from Laryngeal cancer. She mentioned how he continued

on his software development till the end (he was always busy doing something). Rick was also a

Phd, owned a number of patents, and was a writer. As expressed by katenorwood “Most times we

never ever meet face to face. But we get awfully close to people through our site here. TBG was

one of those that knew how hard the fight could get, and was willing to continue to share. As

many, many others of our fallen friends. God's speed TBG”. As expressed by debbiejeanne “I've

missed him posting. we were friends and i will miss him. he fought as hard as anyone could and

was a real warrior”. As expressed by CivilMatt, TBG had some dynamite stories about his various

Golden Retrievers and each dogs enduring personality. He also told me about his riding on the

public transportation system in the Seattle area and the way people reacted to his appearance

caused by his cancer (and cancer treatments). TBG was one of the nicest people you could ever

meet and he really stuck it out till the end.

Vikeman10, Minnesota, enrolled October 30, 2012. DX’d December 2010 w/malignant neoplasm

of posterior hypo pharyngeal, stage IV. Pet scan and NED on 10/29/2012. Happy to be still

kicking. Me too! Checked in January 3, 2013. Reported by CivilMatt that he passed away a couple

weeks after posting.

VivianLee568 (Vivian & David) reported by Vivian April 4, 2013 My David truly is an angel. He was

pronounced dead at 2:24 am EST. he fought a glorious battle and touched many lives in the

process. I am so thankful that God spared his mind at the end and he got to say all of his good

byes. I will miss him, but he has helped me in so many ways. Just as each of you has helped me.

God sent me to this site because he knew I would need your support and lots of pivayer to get me

through. I am proud to be part of this forum. i hate baring bad news but am so glad I have

someone to share with. Cancer is a terrible beast. It strips us of soi much, but thankfully there is

power in numbers and prayer. I love you: Billie, Phrannie51, CivilMatt, Rick, John, Joan, Kris,

Kari, dittos, Jan, Tim, Rachel and so many more of you . Expressed by Bille67 I wish I could be

there with you now to hug you and hold you. It is my hope and my prayer that the love you and

David have for each other will give you the comfort you need. You are right, David truly is your

angel now and you will feel his presence all around you. You will be rewarded for all of the extra

special care you gave to David, God has special plans for you, I feel it. Luv4lacrosse “David was

a brave warrior, who stood up to the beast and fought hard. As my heart aches for you as I write

this, I know David is in peace in a better place.” jcortney “Through all the of your trials and

tribulations you did what was best for your David; often at the expense of yourself. I could not

ask for a better caregiver and I wanted you to know that your friends here, all would applaud

you”.

Wolfen Arizona, Reported that her Husband, Ron DX’d late October 2012 w/Stage IV BOT, NPC

with lymph node on right side. Also DX’d with secondary primary, not MET w/cancer left lung. Due

to medical complications, no cancer treatment at this time. Unfortunately, spouse reported in May

26, 2013 that he lost his battle on May 5, 2013. Our condolences. Caregiver and Mother to

Johnnybegood diagnosed with Colon – 2008. Debbie lost her battle July 2014. Both fought a

brave battle. Check in July 11, 2015

Zinniemay, Michigan 02-22-2014 Update by Pam M: Zinniemay's husband (Greg) is being

celebrated today at his funeral. He fought valiantly and was not only a warrior inspiration, but

also a regular good guy.

donfoo

The new format did not lead me to where I should update my staus, so I place it here. The only change is at the end starting with 2024, same as before, doing good! LOL

Donfoo, from California,

joined forum December 2012, Enrolled in RC January 2014.

2013 Roll Call. DX’d BOT SCC T2N2bMx, Stage IVa, HPV+, multiple nodes, one tooth out. Tumor

board-induction TPF (3 cycles), seq CRT Apr-June 2013. Fully recovered after six months and

feeling great.

Checking in July 29, 2015 just crossed two years post tx. Overall in better shape

mentally and physical than before. Got tight muscles in the neck and my head sweats now when

eating hot stuff. Just hope the long-term side effects stay far away.

Checking in March 2016 - Last visit with ENT moved check ins to 6 months, a good sign. Also confirmed

that my BOT HPV+ diagnosis puts me at 3 years out past the main worry about recurrence.

Whew!!!! Tight neck muscles still a near daily issue. Big improvement on eating "hot". Yippee.

back to tolerance for hot - Love it. Still getting head sweats on hot-hot but not bad. All in all -

everyday, thank God for good fortune! Don. Check in Aug. 29, 2016, doing fine at 3 years post.

Crossed the 3 year post mark in June 2016. Doing great and living large every day!

Checking in July 2017 - 4 years post June 2017. Fibrosis in the neck still a pain in the neck. Otherwise, still

doing great and living large every day! Bought a motor home and taking some trips. Checking in

July 16, 2018 (5 years NED – cured!) Passed the 5 years post early June 2018. NED so all good.

New normal = old normal except for one long term side effect. That is, tightness along the neck

muscle from ear, through jaw, to shoulder on side where radiated. Regular neck stretching and

jawing (big yawns) settles things down. Enjoy every single day, never take today or tomorrow for

granted. Life is great!

Checking in February 24, 2019 Passed 5 years last summer. Nothing has

changed except older. Very thankful that I'm living well, enjoying life each day, no meds, and

the only long term side effect is the fibrosis in the neck and jaw area. Even thyroid seems to be

holding up.

Checking in October 6, 2020, Hi Matt, Thanks for keeping the roll call going. Not

much change for me since checking in last year. Live is good and enjoy every day. Checking in

October 24, 2021. Ditto the last one. Just older, healthy, and enjoying life. Only long term side

effect is the neck and jaw fibrosis. Thyroid still hanging in there too.

Checking in Jan 2024, Ditto. Health is good and fibrosis in the neck still causing cramps off and on. New twist is getting some teeth extracted and working through if ORN is maybe causing some slower healing. No HBOT.

CivilMatt

Donfoo,

I am glad that you found a spot to drop-off your update. To be quite frank with you I am a little lost on the Roll Call, but I will try to make it work for all of us.

Talk to you later,

CivilMatt 
        
P.S. It would be very helpful if every member would date there submittals and fill in their info as suggested in the Roll Call guidelines.

CivilMatt

Attention All H&N members who have been looking at the ROLL CALL 2024, you need to stop and write something down (leave us a message) before you exit the RC thread. Come on, take a chance and see how it works out for you. It sure will make me feel better to see some of my old friends say hi.

Talk to you later,

CivilMatt

Carn

This site was a tremendous support for me during treatment and recovery from stage lll tonsil cancer. I had 2 Cisplatin doses and 1 carboplatin and also I think it was taxol, 35 radiations, many scans and checkups also afterwards. In February it will be 6 years since treatment ended. Pretty bad tinnitus is my only continuing problem and I feel very blessed. I never posted but I was always thankful for the people who made this site such a kind and informative place!

CivilMatt

Carn,

You sound like you followed the same path for treatments as did many of the H&N members. It is well documented that using cisplatin in your chemotherapy can result in hearing loss. Hopefully, everything you gained or lost with cancer and the treatment of cancer, that is 6years of being NED find you on the happy side of your life.

I am happy to tell you that by contacting this thread I officially made you our newest Roll Call member. Now, to bring it all home, I just need your state location and a brief description of your type of cancer and your treatment. Or, I will just use what you said already in your first post to the H&N forum.

Thanks,

CivilMatt

Duggie88

https://csn.cancer.org/discussion/327588/roll-call-2024

Hi All

Jeff (Duggie88) here checking in 2024, my how the years fly by. I am in my 14th year of survival and had my first serious scare since my treatment in 2009 and 2010. The end of August I developed a sore throat but it was an unusual one. Actually my first sore throat in 14 years but it only hurt when I coughed. I called my doctor and he immediately sent me for a CT Scan and it came up clear and when I went to him for a follow up it turned out to be a reaction to a new mouth wash my dentist put me on. So needless to say I am back to being my usual abinormal. I never liked being normal anyway.

I do swing by here occasionally and will continuee to do so. Thank you Matt for all you do for this great site and I am glad that Russ has agreed to step up to the plate from what I have seen he puts a lot to this site. To all who are closing the book on treatment, to all ready to begin the adventure and to all who have survived to tell their stories here. You can win the battle its a tough one but I've always said... If I can do it anybody can..... I will go back to my ncorner now but please all of you remember.

StayPositiveStayStrong

CivilMatt

Duggie88,

So last year when I was worried about your “sore throat symptoms and mysterious cough” it turned out to be some allergic reaction to mouthwash your dentist prescribed to you? Well, that is a good ending to your sore throat and cough story. Now, get back out there and be abi-normal with the rest and the best of us.

CivilMatt

Duggie88

https://csn.cancer.org/discussion/comment/1712756#Comment_1712756

Matt

Yes, I was told since I don't produce a lot of saliva I should use this mouthwash to kill bacteria in my mouth. After a few weeks I developed the sore throat and after it lasted more than two weeks I couldn't help but think here we go again. When I visited with my throat surgeon after the CT Scan he asked me what I was doing different. When I told him about the mouthwash he laughed and said you don'tr need that. The sore throat went away about a week or so later.

I've decided that normal just is not for me nor any fun, it's kidasorta like what my Mom use to tell me growing up "ACT YOUR AGE NOT YOUR SHOE SIZE" I am 70 now and acting my age is not on my agenda. Life is entirely too short to act your age or normal. Now I will go out into the world and make my friend CivilMatt proud.

The ageless abinormal Jeff

Carn

https://csn.cancer.org/discussion/comment/1712745#Comment_1712745

I had hpv positive cancer in my tonsil followed by surgery without clear margins then 3 big chemos Cisplatin (2) Carboplatin/taxol (1) and radiation. I live in the Smoky Mountains of east TN and received excellent support and care traveling to UT hospital cancer center in Knoxville TN. I had wonderful doctors who even encouraged a ski trip which meant a lot to me between surgery and treatments. I was blessed to be able to completely isolate and sleep and binge watch shows during and even after treatment and I believe that the 3 months of complete rest and pampering by my husband and family played a part in my recovery. It took a year to feel as strong as I was before cancer. I will always have the tinnitus to remind me of my cancer but it’s a small price to pay. The years of scans and down the throat checkups can cause so much anxiety after treatment and I constantly reminded myself to let go and let God because He will be there no matter what comes!

Carn

https://csn.cancer.org/discussion/comment/1712745#Comment_1712745

Oops forgot to say scc and it was 6 years age. 😊

Skiffin16

Skiffin16 checking in...

All is well, still enjoying being retired, art and photography. Matt I did forget to tell you the other day, Ingrid passed away last year.

Matt, here's an example of my most recent art,

59 Cadillac El Dorado - Colored Pencil -

21" x 14"