ROLL CALL 2020 - FIRST UPDATE, January 7, 2020

CivilMatt
CivilMatt Member Posts: 4,722 Member
edited January 2020 in Head and Neck Cancer #1

PLEASE READ

ROLL CALL 2020

First UPDATE:  January 7, 2020

I am early this year. Losing a special member like Miss Phrannie will do that to you.

All H&N members are welcome!

 

Roll Call is dedicated to the memory of HAWVET (JOHNNY) who’s curiosity to know and to share a little bit about members of the Head and Neck Form inspired him to start and run this thread (2008 thru 2014).  Thank You.

 

ROLL CALL Guidelines**:

 

A H&N member will be enrolled in the current and active Roll Call on the date they leave a post to this thread or if they contact me (CivilMatt) and asked to be included in the Roll Call. Once you look at this thread, I got you and you will be included in the RC. Note:  I have taken this measure to help increase the number of H&N member participants in the RC.

 

It is desirable to have a member supply their CSN username, city, state and dx for their description.  These items will NOT BE A REQUIREMENT.  I  am mostly satisfied with where we are.

I would ask you to be creative on your location if you prefer to not give the city and or state in which you live.  Such as: I live down the road from the dog that is always barking and spinning in circles or I live east of Chicago or I have radiation1 brain and I am not sure.  Something that members can identify with when reading your bio. Almost anything is better than “unknown”.  I got one location recently of a RC member since 2016, identified their location as the Pacific Northwest and that is a step in the right direction and far better than, “location unknown”.

I will copy all of your information you provide into the current ROLL CALL. You simply sit back, relax and enjoy.

 

Check-In whenever you see the ROLL CALL thread.  I will update periodically throughout the year.  Also, if you see edits which deserve attention please let me know about the glitches and where they are located and if I missed you, I am sorry. Note:  ALL edits will be corrected during the periodic UPDATES to Roll Call.

The count has been completed and the best numbers I have for the participant numbers in last year’s Roll Call are as follows, 65 existing members and 14 new enrollees for a total head count of 79 members to ROLL CALL 2019. For those who took the time to join or check in CivilMatt thanks you very much.

A new spin on the RC check in are ( the very welcome)double or even triple  “ check in” posts per RC year. I am trying to figure out how I want to include this in the RC stats, for now I simply include them.  After all, we only go-a-round once and I think you should be heard!

I appreciate those members who participate in the RC and this is another reason why CivilMatt considers the Head and Neck forum to be the best on the CSN website, bar none!

As always the ROLL CALL thread is completely voluntary and just for the enjoyment and information it provides.  Leave your mark, share your stories, you matter!

 

    1. **Guideline: NOUN guidelines (plural noun) a general rule, principle, or piece of advice.

 

 

 

 

 

H&N MEMBERS

 

aak16 Ashley from Erie, PA, Enrolled February 12, 2018, Ashley from Erie, PA here. 30 years old. 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 Barry from Flagstaff, Arizona, Esthesioneuroblastoma Polyp surgery June 2018, dx June, surgery August 2018 in Tucson AZ Currently 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, Marin County, 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, outside Annapolis, Maryland, joined forum November 2012, enrolled March 7, 2013, DX’d August 12, 2012 w/SCC left side HNC. Treatment completed November 30 and still have difficulties with after effects, but slowly improving.

Akotke, 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 no name, city or state. Enrolled February 4, 2019 I’m still here. I began my cancer journey late 2013 with Stage 0 tongue cancer. Have had two recurrences, the last in Oct 2017 as stage 4 tongue cancer. Treatment ended in Feb 2018, since then have been NED. A tough journey, but life remains good.

AndrewP16nose (Andrew) 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 Republic of Ireland, Co Mayo. Enrolled April 22, 2017, Hi I started with a sore throat end of August 2016, visited a G.P. 1 st week in November. G.P. finally sent a referral letter to an ENT consultant 12th Jan 2017. I got to see the consultant 28th February 2017; he felt around my tongue and said there and then there was a growth inside my tongue at the base right hand side. 6th March 2017 head & neck MRI scan; CT scans head, chest, abdomen & pelvis. 13th March 2017 In for Results 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 for BOT SCC HPV16+ 3 Cisplatin and 35 rads.  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. Ive 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 for BOT. 3 Cisplatin and 35 lots of radiation. 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 pre treatment.  Checking in June 14, 2019, Still here nearly 2 years out of treatment.

AnotherSurvivor (John) Parker, 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 treatment.  First treatment 11/15/16.  All treatments at Skyridge Cancer Center or Kaiser-Lonetree, Lonetree, Colorado.. I found Skyridge and Kaiser to be phenominally effective, I would rely on them for treatment again without hesitation.  Dr. Scott Kono was my chemo oncol, Dr Mark Edson was my rad.  Both docs are as good as you can find, including at places like MD Anderson (where Dr Edson just completed a fellowship).  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 at Skyridge 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 subcutenous 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 Arman Aransen. DFW metro Texas, Enrolled January 6, 2018,  3 years 2 months post treatment for stage III HPV+ SCC in tonsil with one lymp node involvement. 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, state unk, 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 (Majose)  caregiver.  Washington, DC. Enrolled July 15, 2015.  My husband Dmitri was diagnosed with nasopharyngeal squamous cell carcinoma stage 3 or 4 depending on doc on Sept 2014.  Finished treatment in Feb this year. First post treatment scans were NED. Next ones are next month.  Pone of the favorite tips I learned here: "if Jeff can do it, Dmitri can do it"

Backachedp, Minnesota, joined forum October 2009, enrolled July 24-2010. Husband Bob DX’d unk 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.  Chked 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 (Barbara, caregiver to husband Boris) Buffalo, 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!  Barbara - caregiver to husband Boris, diagnosed with stage 4 nasopharyngeal tumor 5/15. Checking in, February 8 & 18, 2019. We are still NED 3 1/2 years post stage 4 NPC, (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.

BartT, Staten Island, NY, 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.  Corrections January 31, 2017.

Bebo12249 (Bill) Jackson, MS,  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.

big G no name, city or state Enrolled February 4, 2019 Diagnosed in Aug 2018 SCC bot- I had neck dissection, 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 e tc. I now have about 80% taste buds back 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. I can't say enough good things about this forum from the encouragement to the knowledge that I know helped me through my treatments. There are too many to name but you know who you are. THANK YOU!

Billie67, Torrance, 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 Tom from Friendship, Maine. Enrolled February 13, 2018. I have stage IV hvp+ I’m done with treatments 35 radiation and 3 chemo. Wasn’t told about depression until it hit me last week so I called the nurse and got on some medication for it. Now I’m getting counseling and this is part of my healing process from the depression. I will share my story soon. 

behindthepen Jeff, from Massachusetts, enrolled October 26, 2016. Bottom of Tongue with metastasis to lymph nodes.  Just finished 15/33 rads and 3/6 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.

big G (Gary) Aiken, South Carolina Enrolled Diagnosed in Aug 2018 SCC bot- I had neck dissection,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 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. I can't say enough good things about this forum from the encouragement to the knowledge that I know helped me through my treatments. There are too many to name but you know who you are. THANK YOU! Checking in December 13, 2019, Diagnosed Scc bot in August 2018. Tx included neck dissection with 60 plus nodes removed on both sides. Left side was clean with several positive nodes right side no extracapsular spread. Followed by TORS surgery to right bot then 33 IMRT'S to right side. I have about 80% taste back,neck has healed well. Dry mouth, eating well although will be getting esouphagus stretched soon surgeon recommendation. 12-12-19 was my 1 year check up and NED!..   I am thankful for this site and wish everyone a speedy recovery and Merry Christmas!

bild (Bill) Las Vegas, NV.  Enrollled 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, Chicago, 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, 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 Invercargill, 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")      

Bunnymom, Chicago, IL  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 2years NED. Thanks to all that have been kind and supportive. Made all the difference to me.

CajunEagle, (Larry), Louisiana, 2009, joined forum October 2009, enrolled February 3, 2010, DX’d Stage 4, 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 dx and treatment for stage 4 Left Tonsillar 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-occurance 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 (Tony) California.  Enrolled June 26, 2016.  Age 45.  Diagnosed Nov. 23, 2015 w/ SCC Tonsil stage 4. 2 cisplatin and 6 weeks of rads.  Finished treatment Feb. 3, 16.  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 No name, city, state or dx. Enrolled February 3, 2019

Carolinagal4, Apex, North Carolina.  Enrolled July 26, 2015  diagnosed stage 4 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 lymphedema in neck and massage is helping.

catfish_58, Waco, TX, 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 all members of CSN for the words of encouragement and all info.

Catluver96 (Viki) Jan 15, 2014, Diagnosed July 2012. Tongue cancer stage 3. 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 (name, city, state unknown)  Enrolled February 4, 2018, Hey folks,New to the boards and hope to see you all peridoically. I'm newly diagnosed with olfactory neuroblastoma as of December 2017 and have yet to recieve 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, Johnson City, TN, joined 11-2013, enrolled 12-29-2013. DX’d Stage III, Laryngeal cancer in June 2013. Clear pet scan in 11-2013. Need trache for breathing and difficulty speaking.

Charlize (Charlize) Calgary, Alberta

CherieLW, Lancaster, Ohio, joined forum May 2010, enrolled dad (Steve) on June 4, 2013. DX’d cancer of sinus w/one affected lymph node. Undergoing treatment at time of enrollment.

Christmas, 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 the

Comments

  • wbcgaruss
    wbcgaruss Member Posts: 2,260 Member
    edited January 2020 #2
    Checking in 2020

    wbcgaruss-(Russ) 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 the most recent passing of Phrannie a beloved member who helped many on here and ones like Kteacher and Longtermsurvivor and many others.  And a shout out and thank you to Matt for continuing it-Thanks Matt.

     

    (Russ)-Near lancaster, PA-Avid Reader of this forum, from 2012 when I had throat cancer. I got through that fight and this forum was a vital help. Never joined till when I was about 5 years out I got a spot on my tongue and biopsy showed it was tongue cancer. I decided it was time to join and be a member at the onset of my second cancer. ENT Doc Operated on my tongue and had clear margins. 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"

     

     

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    Updated Roll Call for MikeMetz

    Mikemetz (Mike), Decatur, Georgia, joined forum November 2011. DX’d Stage 4 Mucoepidermoid in February 2009, Checking in on January 12, 2020. Had seriopus problems with ORN, leading to a jaw reseciton in 2014, and a lot of other problems.  I had a PEG tube placed in April of 2019 to help get in more calories and reduce the risk of aspiration pneumonia (which I had in January of 2019).  The tube is doing its job, allowing me to gain back a few pounds, and feel a whole lot better in general.  The doc first said the tube was temporary, but I now know I'll be keeping it for life.  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. Mike

  • LeoS2323
    LeoS2323 Member Posts: 160
    edited January 2020 #4
    LeoS2323

    LeoS2323: Liverpool, England. Joined forum March 2012, enrolled April 2nd 2012. DX MEC Stage 4 with unknown primary and MET to lymph node. Had left sided neck dissection, tonsillectomy and BOT biopsy and have been all clear with NED up to now, January 2020. 

    I am doing really well. Happy and healthy, family are well (daughter goes to High School this year) and I am a vegan these days!

    Matt thanks for keeping this running. As one of the lucky ones now approaching 7 years clear, I often dont check in for longer spells - but it means a lot to be able to see how everyone is doing when I do stop by. I was incredibly sad to hear Phrannie has passed recently, she touched and helped so many people on this forum including me.

    But on a happier note I am really pleased to see so many others from my time as a regular on the forum and before doing well (including you). Lots of love to all you brave people.

  • catfish_58
    catfish_58 Member Posts: 138 Member
    2020 Roll Call

    Checking in, Sorry to hear about the losses, Especially Phrannie, helped me out numerous times, Update on treatments am taking Keytruda for stage 4 tongue cancer, seems to be keeping it at bay, not shrinking but not growing or spreading, hope everyone had a great year, take care

  • Roll Call

    Just wanted to check in and say so far so good,Im 3yrs out and I am finnally geting back to the new normal.It has been a real fight but it is worth it as  I can enjoy life agin,so if your new and haveing problems the people on this site will do thier best to help you.

  • n2horses97
    n2horses97 Member Posts: 4
    edited February 2020 #7
    2020 Roll Call

    n2horses97, NW FL, Joined forum 2/2020, Enrolled here 2/2020. I am caregiver to my husband Mike, 66 years old DX with HPV16+ OPSCC T2-3N1M0, in June 2019. Began 33 proton therapy treatments July 15, 2019, withconcurrent 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 2/18/20 for 3rd f/u. Praying daily for NED. 

  • Santatim
    Santatim Member Posts: 4
    First Timer Checking in 2020

    Joined forum tonight after thinking surely there is someone out there that can relate.  I was diagnosed with Squamous cell carcinoma involving right upper cervical node as well as background of probable SLL/CLL, and CD10 positive follicular lymphoma, previously undiagnosed in February 2019.  At first they called it cancer of unknown origin as the ENT surgeon did not find tumor in throat.  Thankfully I had a very good radiologist who insisted I see an ENT surgeon that specialized in TORS surgery.  I had that surgery in April 2019 and the right side of the base of my tongue was removed as well as some remaining tonsil tissue on right side (I had a tonsillectomy at 12).  This tumor was diagnosed as p16 related squamous cell.  I began 30 treatments of 220cGy radiation in late April and completed in early July 2019.  I just finished my second round of 3 month interval followups and was told I am still in remission as far as the p16 squamous cell.  I will have blood work for the rest of my life to monitor the lymphoma aspect.

    I will turn 60 this month.  As you can tell by my profile pic and name I used to play Santa for the kids.  That was put on hold this past year as my beard fell out and I don't want to play Santa with a fake beard.  It's coming along now although the hair is a little more wild, hopefully it will calm down as it gets longer.  My wife has been my rock through all this and one of my two sons as well as my only daughter have been very helpful.  My oldest has his hands full with 3 children of his own so I do not fault him for trying to be a father.  I've been married to my lovely wife 38 years this past November.  We have lived in a sleepy little part of North Carolina called Millingport, it's just past Finger off Hwy 73E.  

    My worst after effects besides losing my identity has been the burning tongue, loss of taste and almost complete lack of saliva.  I am a mouth breather when I sleep and when I wake from a 7 to 8 hour sleep my throat and mouth is so dry it is all I can do to swallow water to begin the process of rehydrating.  It is several hours before I can swallow somewhat normally.  Food constantly hangs at the back of my throat and I have to have tea or water to make the food actually go down.  I am in constant terror I am going to get my process of swallow hold breath drink swallow out of synch one day and choke to death.  They said I needed physical therapy to relearn to swallow but my insurance requires a $40 copay per visit and I can't afford a long therapy at that price, she said 3 days a week for 4 weeks to begin. Just found out this month I now have hypothyroidism another gift from the radiation and started a medication for that.

    I'm thrilled to find this site and look forward to future conversations.

  • jackflash22
    jackflash22 Member Posts: 524 Member
    Still here 8.01.2020

    Hi all  haven t been on for a while but I'm still here. Diagnosed With BOT cancer and in the lymph glands. 2013 ..Had major surgery and 6 week radiotherapy. Had ups and downs. Lost partner then 2 days later nearly lost my life with undiagnosed bowel cancer. 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 pernament. Have been given emergency pack of antibiotics Incase i start another chest infection. Keeping fit and healthy...touch wood....at present. im happy, enjoy life...I walk with my little dog, spend my days crafting, which I'm obsessed with. Im catching up with my friends news on here. I was saddened and shocked to hear phrannie had lost her brave fight. She helped me a lot in 2013 onwards. RIP phrannie 

  • EsGirl
    EsGirl Member Posts: 5
    edited February 2020 #10
    New Girl - Roll Call 2020

    Hi Everyone,

    We are cancer newbies and looking for any advice/tips we can get. My husband Eric's location is a weird one, SCC in the lacrimal sac/tear duct.  He had his surgery 12 weeks ago and just finished up radiation with chemo (cisplatian) 4 weeks ago.  We live outside of Wash. DC with our two youngest ones (10 & 13) and our two older boys are not too far away at college in VA. The side effects of everything are really getting to him.  Ususally he is super positive and very funny.  Lately he has understandably been a bit depressed.  He also has been having a lot of side effects.  Tear drainage, nose issues, loss of taste, forgetfulness, night sweats, nasuea, I guess the usual fun stuff. Any advice/tips you have are greatly appreciated!

     

    Thanks, Danika

  • big G
    big G Member Posts: 175 Member
    EsGirl said:

    New Girl - Roll Call 2020

    Hi Everyone,

    We are cancer newbies and looking for any advice/tips we can get. My husband Eric's location is a weird one, SCC in the lacrimal sac/tear duct.  He had his surgery 12 weeks ago and just finished up radiation with chemo (cisplatian) 4 weeks ago.  We live outside of Wash. DC with our two youngest ones (10 & 13) and our two older boys are not too far away at college in VA. The side effects of everything are really getting to him.  Ususally he is super positive and very funny.  Lately he has understandably been a bit depressed.  He also has been having a lot of side effects.  Tear drainage, nose issues, loss of taste, forgetfulness, night sweats, nasuea, I guess the usual fun stuff. Any advice/tips you have are greatly appreciated!

     

    Thanks, Danika

    Checking in

    SCC base of tongue. Had neck dissection both sides 50+ nodes removed several involved no extension left side clear. The following week had TORS surgery to remove bot tumor with clear margins. 6 weeks of radiation to the right side. Doing ok so far some tightness in neck ,chin area, taste back to 85% or so eating good but will be getting a throat dialtion next month recommendation of my ENT/Surgeon. Back to work a year next month.

    Thanks to the fine people on this forum for encouragement,sharing and caring. I would like to mention Phrannie's NGU ( never give up) demeanor was an inspiration to me as well as others on this forum and she will be missed.

  • stevenpepe
    stevenpepe Member Posts: 234
    edited February 2020 #12
    Diagnosed 2/23/2016 with SCC

    Diagnosed 2/23/2016 with SCC left tongue. Surgery-tongue, left nodes, 33 rounds IMRT. Treatments ended 6/30/2016.

    Round two after lump found on right side of my neck in August. Surgery right nodes, 6 weeks chemo, 35 rounds Proton therapy.

    I'm heavily scarred with damage to right massetter muscle, but grateful to still be here. Love to all on this journey...

  • RR89st
    RR89st Member Posts: 3
    edited February 2020 #13
    First time posting Bob and Renee

    First time posting. My husband Bob just started his journey in this process called cancer treatment. He was diagnosed Dec 19th, 2019 with squamous cell carcinoma of the right tonsil with 1 lymph node involved. Have since found back of tongue with involvement and tumor through right lower jaw. He is 1 week into radiation and chemo. I have read dpzens of the posts, gleaning info about everything. Taking notes and learning much here. We live in Michigan right about the web between the thumb and first finger. We would be honored to be involved in this wonderful community.

  • Bart T
    Bart T Member Posts: 62 Member
    edited May 2020 #14
    Checking in

    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.

  • Chiswick
    Chiswick Member Posts: 8 Member
    edited September 2020 #15
    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 reconstructuve 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.