Meet others living with Head & Neck Cancer: Introduce yourself

@simplygrand
Sure, had 2gy per IMRT radiation treatment X 24 . It was proposed that I get 35 treatments for 70gy.
The NavDx could be used to monitor progress with treatments but
there seems to be a reluctance to try and cut people loose early. Why ? Your guess is as good as mine but the back pocket thing comes to mind unfortunately.
I had trouble with the 40 cesplatin doseage and after 2 of them I took 2 weeks off from that and came back for 2 half doses which was more tolerable.
As for the radiation , I continued treatments until swallowing became difficult and chose to stop treatments completely and take the test.
A feeding tube was not in the cards for me. I had read numerous trials about this cancer and saw good curative results with less treatments than the current standard of care protocol. Hope this helps.

@woodsy1

Thank you for being so thoughtful. I will ask them about NavDx as a check during treatment, not just after all is completed.
I hope you're during well personally. It sounds like you struggled with both the cisplatin and eating/swallowing. I'm glad you were able to do well after stopping and that NavDx was part of your solution. Hopefully (fingers crossed) that I can tolerate thins well. Again, thank you for your support!

@simplygrand
You're welcome, just paying it forward.
Age can play a roll in treatment struggles . Old bodies just aren't as
resilient as some younger ones. Pushing 70 here.
But 5 mos. post treatments doing quite well overall. Its been a roller coaster ride with good and bad days but on the bright side most people come through it cured of cancer so we have that going for us.
PubMed is a good source for trials research data and the search bar function here could help with finding specific areas of interest. All the best !

@woodsy1

Ahh yes. Age. I'm 77, although in exceptional health and above average fitness till this appeared. I weigh 165, so losing 20 would be a drag.
Thanks for the tip on PubMed. I will check it out. They already asked me to sign up for a trial studying AHCC supplementation. Looks benign, been around for a while and doesn't change the standard protocol they have planned. I'm inclined to do it and meet with them next week. Like you said ..pay it forward.
Again, much thanks for your guidance!

Good morning , I am 77 years old recovering from Squamous Cell carcinoma . In August of 2025 I finished 35 radiation treatments . Today , July 19, 2026 I am struggling with all the side effects . Sore throat , abundance of phlegm, dry mouth , cough, no taste/bad taste when trying to eat , an aversion for food, sick to my stomach and throat most every day . As a result I have been on a PEG TUBE for almost one year .
I have heard side effects from radiation for this cancer can take one to two years to recover .
Any insights and responses are welcome !

@ernierogersquamus123 Hello and welcome to the head and neck cancer group. It seems your recovery is slower than most however that could be attributed to age. The older we get, the slower we heal. Sorry you have to go through these after effects for such a long period of time.
If you can, measure your progress on a month by month basis. If you are not seeing improvement in some areas in that amount of time, seek out medical help. Some things can't be fixed but many issues can be. It might take physical therapy or a small surgical repair. And don't hesitate to ask of your medical professionals if they have experience in head and neck cancer recovery. Most do not. Find one who does.
Anyway that is my non-medical advice. In the meantime don't hesitate to ask questions of this group. Starting your own discussion is usually the best way to get many eyes on your questions.
Welcome.

Thank you . I am seeing a qualified head and neck reconstruction surgeon here at ECMC HOSPITAL in Buffalo , New York.

Hi,
My experience with Cisplatin was less about hearing damage and more about the concern for kidney damage. I was scheduled to have 3 rounds but only had two before my creatinine clearance became too bad to give the third. Lots of nausea and vomiting, but no issue with hearing loss in my case.

Hi @simplygrand

I was 39yrs. old in 2008 when I was officially diagnosed with cancer Stage IVB T2N3M0 on left tonsil caused by HPV and one of my 3 infected lymph nodes was over 7cm and that is not a typo. I had 35 rounds (7 weeks) of Photon radiation which amounted to 70 Gy and 3 rounds (211mg each) for a total of 633 mgs of the platinum-based chemo Cisplatin and had no surgery whatsoever.
One thing I am finding out is this big de-escalation Head & Neck cancer treatments coming about especially for people who got it as a result of HPV. I attached 4 articles (pdfs) on it here. Also, I talked to my oncologist recently and he said I would have four different options if I had tonsil cancer today.

Hope this helps.

My name is Christian. I'm 75 and had small cell squamous of the neck and through which was successfully treated with radiation and Chemo. This affected my salivary glands, taste buds, throat, mouth, epiglotis, and ability to swallow. Not too bad right? But 5 years ago I started experiencing syncope episodes with blurry vision and recently I have experienced tremors of my hands and arm that have increased in intensity and extreme fatigue. The neurologist in my area have no answers. I do vagus nerve exercises and they are moderately effective. I could really use your help.