HPV Tonsil cancer: I'm very nervous about chemo and radiation

@deb26 I'm six months post treatment and still have no saliva however I'm told it will come back to some degree. My mouth is always VERY dry. For sleeping I place two Xylimelts in my mouth before I go to bed and they definitely help. I find so many of the over the counter remedies do little or nothing however I know these work because if I forget to take them I wake up within an hour or so and am quickly reminded. Give them a try.

Can anyone give me guidance on any products or treatments to help with my husband's loss of saliva? He has had 19 proton radiation treatments inside his nose and sinus cavities. When he sleeps now, his tongue sticks to the roof of his mouth, and the rest of his throat is extremely dry. He is unable to sleep more than about 45 minutes at a time. I am fixing foods that he can easily eat, but nighttime is proving to be a challenge. Any help is appreciated.

There are saliva substitutes which are prescription so ask his doctor about this. I have luck with Xylimelts every night and the /biotene spray or gel for daytime. I also keep an ultrasonic humidifier right beside the bed to run at night. Maintaining hydration during the day is also very important. Drink lots of water and even electrolyte solutions, as sometimes they hydrate better. This night time dryness is torture but is usually improves and these things really help in the meantime.

I did not have tonsil cancer, but another form of head and neck SCC. I have done complementary immunotherapy treatments for 12 years which I started right after the radiation with targeted chemotherapy was complete. Through the Quantum Immunotherapy Clinic in Freeport, Bahamas, I met other patients with your disease. The best results were seen with those who followed traditional treatments and then followed up with their complementary therapies. They are looking into reduced radiation treatments currently at larger cancer centers and that might be something for you to look into. I have used both traditional and complementary treatments for my cancer which had a 30% 5 year survival rate, and I am still in the game 12 years later. I am also a medical professional so I believe in what we know about western medicine. Perhaps look into a naturopathic physician for advice and guidance. The sooner you get on top of your cancer, the better your outcome. There are newer approved immunotherapy drugs that are being used with less side effects than some chemotherapies. I used one for 2 years recently when I had another metastasis and it completely cleared my kidney and lymph node mets ( so far, knock on wood). Find a head and neck oncologist that you trust even if you have to travel to see them. We drive 10 hours for my oncologist at MAyo Rochester. She is amazing! Good luck.

My husband is being treated for a rare form of cancer: mucosal melanoma. This cancer appeared in one of his sinus cavities. After two surgeries performed by a specialist in Florida, he is having 33 proton radiation sessions and an accompanying chemo infusion with a traditional cancer drug. After radiation, he will seek help through an immunotherapy drug. We may have to travel to find a qualified oncologist. My question is-How important is it that the oncologist specialize in head and neck cancers or do we look for an oncologist who specializes in mucosal melanoma? He would like to start immunotherapy as soon as the proton radiation area is ready for that.

@deb26 it is tough having a rare form of cancer, as there is less information on proven treatments. The more specialized your oncologist is, the more up to date information they will have available. A very rare cancer may not have specialists available who concentrate on that one particular type. Sometimes in researching you can come up with a name but often those doctors will be researchers, not practitioners seeing patients. Our area does not have an oncologist specializing in Head and Neck which is why we travel to Mayo. Initially I felt that the doctors there were more experienced in the surgery I needed as opposed to local ENT's who may have performed only a few. The Head and Neck oncologist in Rochester, Dr. Price, is an amazing doctor. She has been my hero from the first day we met in the hospital after surgery. I hope you can find someone in whom you can have the same faith. Where are you located?

Hello . I was diagnosed with HPV 16+cancer of base of tongue March 2023. The Good news is HPV 16 is a very treatable cancer. I am sure the earlier you start treatment the better. Trust me I had not visited a Doctor in 20 years and I found it hard to trust them but a good Oncology Doctor that treats alot of HPV cancer should be able to help guide you to the correct and proper care. I urge you not to keep waiting.
If this is any help here is my story....I am 58. I had TORS surgery April 2023 to remove base of tongue 3cm tumor ( partial glossectomy )and lymph nodes through right neck dissection. 2 of which had cancer. I had 30 rounds ( ending July 2023) of Proton Radiation to "cleanup" any cancer that may have been left behind from HPV16 base of tongue and Few Lymph nodes . I did not have any Chemo treatment. l was very worried about going on a feed tubing , Dysphagia and Not being about to swallow (eat or drink). It was a struggle to eat during radiation and a few months after and I FORCED myself. I lost appetite and everything had no taste. I ate soft creamy foods for about 3 months once radiation stopped and then slowly back to normal foods. As far as today 18 months out of treatment I can eat and drink about anything I want. My taste buds are about 90% , My throat mucositis has almost gone away, Saliva production 90% and My stamina is back to about 90% . I will continue to have a throat scope and CT scan every 3 months for two years. So far no evidence of cancer remains.
Make no mistake this will get better for you in the next 6 months or so. Some things may not taste the same, you may have some slight neck or throat discomfort and a little less energy but you will be alive. I take the time now to thank God every morning when I get up. You got this. Trust in your Faith

@deb26 I'm six months post treatment and still have no saliva however I'm told it will come back to some degree. My mouth is always VERY dry. For sleeping I place two Xylimelts in my mouth before I go to bed and they definitely help. I find so many of the over the counter remedies do little or nothing however I know these work because if I forget to take them I wake up within an hour or so and am quickly reminded. Give them a try.