ROLL CALL 2024

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!

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

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.

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,

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,

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.