ROLLCALL 2016 - CLOSED 3.1.16 (SEE UPDATE)

CivilMatt

Heather_Lynn said:

Enrollment request

Heather_Lynn  (Heather) Ankeny, Iowa. 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.

welcome

Heather_Lynn, 

Welcome to the H&N forum, sorry that you are here, but maybe we can shed some light on your condition.  I am happy to include you in the Roll Call, but if you start a new thread you may get more response to your type of cancer.

I had 35 radiation treatments for cancer at the base of my tongue, in about two weeks you will be starting to get real smart about radiation too.  The side effects have their challenges, but between your nurses, doctors and the H&N forum we can ease you into livable conditions.

Good luck,

Matt

PJ47

check in for 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

donfoo

checking in

Was wondering last time I posted 

Checking in July 29, 2015just crossed two years post tx. Overall in better shape mentally and physicall than before. Got tight muscles in the neck and my head sweats now when eating hot stuff. Just hope the long-term side effects stay far away.

Marc 2016 - Last visit with ENT moved check ins to 6 months, a good sign. Also confirmed that my BOT HPV+ diagnosis puts me at 3 years out past the main worry about recurrence. Whew!!!!

Tight neck muscles still a near daily issue. Big improvement on eating "hot". Yippee. back to tolerance for hot - Love it. Still getting head sweats on hot-hot but not bad. All in all - everyday, thank God for good fortune! Don

littlemisskitty

Update

My mom passed away on January 5th, 2016. She was told at Thanksgiving time after a PET scan she encouraged that she would have a year if she participated in trials that would happen after the new year. She was so tired all the time, had a terrible, painful spot (what we found out was a tumor on her neck but the doctor insisted was an infection), was unable to handle walking up the stairs anymore, and was coughing so badly she was having trouble getting her ensures down, so I insisted she go to her hospital's sister hospital for a second opinion. They informed us that Yale had lied to her. She did not have a year left and instead her file said 2 weeks. She was not supposed to make it to the new year. The doctor told us she was just too weak to even do treatment even if she did make it. She had tumors everywhere and it was eating away at her bones and at her organs. He said she should have been offered hospice back at Thanksgiving but as a late Christmas present, he would offer it to her within 4 days (that's after the new years but the first time available he said). He said he figured she would only live about 2 weeks. We came home with a heavy heart. When she came home, her leg broke while walking up the two stairs to the house. The tumors had eaten through her right femur bone so she took a fall. She stayed in the hospital unable to eat or drink anymore. They took away her ensures stating she was choking on them so badly and it was a hazard to have her choking in their care. They also put her on oxycodone as pain relief. I pushed for her to come home so she could die surrounded by us instead of hooked up to machines. The doctor wanted to release her to a rehab facility (no idea why) but I instead called hospice and had it set up so they would come to the house. Within 4 hours we had a special hospital bed, a suction machine, bed pans and pads, oxyfast, and a nebulizer all set up and she was brought home. My sister was able to spend the day along with her two children with mom that Friday, the day after she came home. She drank (mostly coughed up) eggnog to celebrate the new year, sat with the children spending time with them, sat with Rachel talking with her and had a pretty good day. On Saturday she sat with me and talked for hours. She even drank a full bottle throughout the day of ensure, talked of how she wanted a special recliner chair like grandma's to sit in so she could rest her broken leg on it (they had only put a removable cast on her so walking wasnt possible) and how she had planned to beat their two weeks odds). Sunday she slept most of the day as they decided even though oxyfast was working perfectly, that she should be on morphine to help her breathing. They put her on a morphine pump Saturday night and she barely woke up on Sunday but Sunday night she heard my dad's voice. She called out to him and he sat with her and talked with her until she fell back asleep. That was the last time she awoken.  She was courageous and a fighter until the end when she slipped into a coma only to die hours later. She is greatly missed by her family.

 

Thank you so much for your support and help. Having people who had gone through radiation and chemo before and who had gone through the steps had helped both myself and mom greatly. I hope you continue to help others who get this terrible disease and help others to conquer it. 

dunedintech

Checking In

Dunedintech   (CPC), state unk, joined forum 04-2013, enrolled 12-16-2013. DX’d 01-07-2013 SCC front left of tongue. 27 lymph nodes removed. Lost 23 kgs (50.6 lbs) during treatment. NED on 04-09-2013.  Ticking along ok as at 15 July 15.  Check in July 14, 20115

29 February 2016 - Still based in Singapore. Had a checkup recently and all NED. Three year scans / MRIS etc in March so hoping all trending NED. Don't post as much as I used too but still read the boards daily. One day at a time. 

CPC

 

fishmanpa

Still NED!

Fishmanpa"T" (Mark) Royal, Virginia>>Shenandoah Valley, Virginia. joined forum January 2013, enrolled February 1, 2013.   Diagnosed Nov 2012 - SCC Tx N2b Stage IV HPV+ ,  Selective neck dissection - 23 nodes removed two cancerous - 6 weeks chemo 30 rads. Treated at Johns Hopkins Feb - April 2013.  2 years post April 24th - Still NED. Positive thoughts and prayers.  Check in July 13, 2015

NED as of Feb. 2016. Going on three years out (4-24-2016) and doing well. next "poke,scope and prod" August 2016. 

Positive thoughts and prayers

"T"

postie65

Roll Call check in

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 in november 2012, had 1/3 of my tongue removed (the right side from front to back). 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

sunshine_64

postie65 said:

Roll Call check in

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 in november 2012, had 1/3 of my tongue removed (the right side from front to back). 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

Roll Call Check in March 2016

Diagnosed stage 4 advanced in March 2012 (metastized both sides of neck), treatment with cetuximab and daily radiation 8 weeks. NED pet in September 2012. I am now more than 3 yrs out, and doing fine, just retired. Am planning a celebration tomorrow with a breat cancer survivor friend who is 5 years NED this month. Bouef bourguignon, creme brulle, and barolo. 

I am doing fine. Still carry a water bottle everywhere (and fight TSA, guards in museums, and gestapo-trained german security guards in airports--but I usually lose the battle--it is very hard to travel). Neck pain/fibrosis has increased over the last year, so I started serious physical therapy with a head and neck specialist and it seems to be helping a great deal. Woke up one morning and couldn't open my jaw, and now I don't have any problems with it - so I recommend the exercising absolutely (twice a day, half an hour, mainly range of motion--google ROM exercises) and some TMJ-exercises. They work, as does a hydro-floss machine that keeps my gum infections to a mimimum.

Am happy to be celebrating this year and happy for all of you!