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

Hello everyone, My name is Tim and I'm new to the group. My wife has been reading everyone's comments for several weeks now. She said I should get on here and be a part and so here I am.
Before I start with my story, I just wanted to let you know that I had pain in my right ear and was unable to keep my hearing aid in it. My primary doctor said I had TMJ and go take Yoga classes to relax. I insisted to go to a ENT and he relented and wrote the referral. I was HMO at the time because I really didn't need a PPO. At open enrollment I'm switching to PPO. My first ENT told me I possibly had a clogged salivary gland I try eating sour candy. That didn't work. Fortunately, I went to another ENT who first was dismissing as well, but ordered an MRI to appease me. When the results came back with a small mass his tune changed immediately. By the way, I'm changing my Primary when I receive my new insurance card.
I had HPV cancer in my right tonsil and it has spread to one lymph node. My ENT performed surgery on my neck to remove my tonsil, mass, and lymph node. He took several others in the chain for precaution. After surgery recovery I went through 25 rounds of radiation. I finished exactly 1 week ago today. I breezed through the radiation treatment fairly well. But, after the treatment stopped every hit me hard. My throat was burning much more intensely and foods doubled in their bad taste. I'm on Fentanyl patches and Xanax to help intensify the patches? Everything I eat now is horrible and gagging...foods I normally loved. I'm only getting down Boost, Cream of Wheat, Oat Meal, and Campbell's Chicken Soups. I'm getting real tired of all of them. I'm not loving life right now due to the eating situation and burning. My only hope is reading that several of you got your tastes back in several months. I'm hoping for that outcome as well. Thank you for all your posts, they really help.

Mine was tongue cancer but my exp was very similar to yours. Love my food tube. I never had to struggle with nutrition or hydration. I feel like my Mayo Rochester doctors saved my life and have given me my best quality of life going forward. All of my OTs and nurses taught me how to manage my lymphedema and radiation fibrosis going forward.

@harleytiger Hi Tim,
Recovery from not only the surgery but certainly the radiation treatments was for me a long and slow process. It is more like recovery from a bad burn, takes forever. As far as the foods that work for you, there is nothing wrong with eating your favorite pie or cakes or any such treats, the less sugar the better of course. After what you have been through, there is nothing really off limits. Butter on toast, gravy on everything. Whatever works.
Things usually get better after six months and a lot better after a couple of years. Its going to be a new normal for you especially in the food department. I know what a pain in the neck this all is (pun intended). It can be depressing. And any little thing new that crops up you might think the worse, yet likely it is not anything to worry about.
If you need help coping with any of this recovery, this is the place to ask. Welcome to this group of damaged goods. We all just keep on truckin.

@johnbonani hope the recovery is going well, 9 years post treatment here, I find sour candies help me with producing saliva, the dry mouth gets better in time. I strongly suggest rinsing your mouth daily with children’s mouthwash that contains fluoride, the lack of saliva really takes a toll on your teeth, my dentist suggested the kids mouthwash and well I am cavity free so it must be working, stay strong and good luck

I'm 17 months post treatment of 29 radiation and 3 chemo. My blood went out of spec before completing 7. No operation. I had to learn to swallow again and had a feeding tube for about 4 months, losing 30 lbs. My taste has come back somewhat. Some days are better than others. I finally have some saliva sometimes. I drink a lot of water with meals and in between. See your dentist every 3 months and get fluoride treatments. Be patient... it's going to take awhile. Everyone is different based on how we got here. I'm happy to report my blood tests and petscans still show I'm free of cancer!

@sean1971 I will try the mouthwash. I use a Colgate kids fluoride gel, now. Its a prescription. I am allergic to mint so kids products are my only choice. Tuti fruity!

@johnbonani Thank you John, I'm new to this whole adventure. I had HPV cancer in my rt tonsil and one lymph node. I had surgery and 25 rounds of radiation. I'm one and a half weeks out from radiation. Food is horrible to the point it's indescribable. All I can eat is Chicken soup, oatmeal, and Cream of Wheat. I drink Boost as well. I'm on Fentanyl patches currently. My dry mouth is a big issue, but not as much as the food problem. I'm still swollen in the area and hopefully that will go down. I'm still going to the gym and working out so that's a good thing. My wife is at her wits end not knowing what to feed me. Chinese Egg Noodle Soup is a big winner. I just bought a new pizza oven when all this happened. Oh boy, no eating pizza for a while. Thank you for sharing your story to guys and girls like me who are just beginning this ordeal.

@harleytiger The menu of champions!😂. I will add scrambled eggs and scrambled eggs with cottage cheese added. The cottage cheese boosts the protein and helps with "slidability". I also found a recipe on Pinterest for tapioca pudding in my crockpot. It was wonderful. I also found that a warm drink helped everything go down easier. Hot chocolate, warm milk, coffee ,tea, whatever.

I had TORS throat surgery, Neck dissection, 30 rounds of radiation and finished July 2023. It was a STRUGGLE to eat a few months after treatment. I lost my appetite and everything had no taste for a few months. My throat was in bad shape. I ate soft creamy foods/ Boost/Eggs/Cottage cheese/soups for about 3 months once radiation stopped and then slowly back to normal foods. This is a VERY slow process back so be patience. Crunchy sharp food/hard bread/Spicy foods/beer (alcohol) items hurt on the way down for about 6 months. The Good news...One year out of treatment I could eat and drink about anything I wanted. My taste buds were back to about 90% , My throat mucositis had almost gone away, Saliva production 90% and My stamina was back to about 90. Now the Great News...Two years out now today and I can eat ANYTHING including Pizza which I had last night and it was awesome.. Hang in there. Spicy foods are waiting! God Speed

@jkhagen1 thank you. I start my first radiation treatment on 9/30. 6 weeks are planned. Then chemotherapy. Although I don’t know the schedule for that yet. I had surgery to removed right tonsil/ cancer plus 3 lymph nodes. One of which had extra nodal extension. Which I have been told is not good . I’m 74 years old. Not embarrassed to say I’m scared of all this treatment and the side effects …. Some lasting years. I’m new to the group but have appreciated all the information everyone has posted. I hope one day I can help others with advice as all of you have. Thank You