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

@jonesja I am so worried that my taste buds are toasted. Food is horrible, nothing tastes the way it should. The metallic tastes have gone away, but now it seems the food I know and love is horrible. I keep reading your post and hoping I have the same outcome. I'm almost two weeks out from my 25 rounds of radiation. I had HPV cancer in my right tonsil. I have very little appetite and thick saliva. I gargle all the time with different remedies suggested by the oncologist. I have to drink water constantly. Can I ask when you started to taste food again? was it 3, 6, or 9 months out? Patience is not one of my strongest points. Thanksgiving and Christmas are coming up and I have no tastes. I was hoping to have something I can live with in a few months.

I had tongue cancer with 7 weeks of radiation and chemo ( cisplatin) simultaneously. I was tired a lot. I was lucky and did not get mouth sores or nausea. I used the baking soda rinse liberally. I did get a g tube and maintained my nutrition and hydration. The whole saga was not as bad as I had expected it to be. I was very worried going in. I stayed at home mostly so I wouldn't pick up a cold or flu.

@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

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

@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.

@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.

@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!

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!

@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

@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.