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

Thank you so much. I hope your recovery continues to go well. I much appreciate this tip.

I don't have any alternate advice, but I am about to begin chemo/radiation for HPV tongue/tonsil cancer. This group has been encouraging and honest about both treatment and outcomes. I wish you the best in your journey and hope you find peace of mind and spirit.

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.

I appreciate you sharing your experience with us. I had not thought about electrolyte hydration or the humidifier. Thank you and good luck with your recovery.

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?

We are in Central Florida. Luckily, there is a specialist in St. Pete who was recommended to my husband. Her name is Dr. Soylar, and she is a nationally recognized specialist in sinus cancers and surgeries. She is a member of a tumor board associated with Moffitt Cancer Center and the University of Florida Proton Institute. Dr. Soylar performed two surgeries to diagnose and clean out as much of this cancer as possible. The vast majority of ENTs have never seen a case of this. She also ordered scans and blood work. On her recommendation, my husband connected with the UF Proton Institute, where he has received excellent care, as I have mentioned. Now we are looking for an oncologist so he can continue treatment with immunotherapy drugs, unless something else is recommended.