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HPV Tonsil cancer: I'm very nervous about chemo and radiation
In June of 2024 I was diagnosed with HPV+ tonsil cancer. I have been doing an alternative approach but believe it is not working and can not find a doctor in my area that will work with me and order a second pet scan as I am not following THEIR protocal. It is all Chemo / radiation or nothing! Basically my wife is no support if I go with the traditional routine, and insists that what I am doing will work.
I am very nervous about chemo and radiation. What else my be available?
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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.
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2 Reactions@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.
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3 Reactions@harleytiger
At two weeks I finally was able to taste chicken soup, and primarily the salt. In a month or two things should be improving a lot taste wise.
I know this whole cancer battle has just wrecked your year, your plans, your life for now. Give it time. Measure improvement week to week rather than day to day. Next year should be a whole lot better although likely you won't be 100% by then and maybe never will be again. We call that a new normal and we get used to it. You have cheated death and in the long run you will be stronger for it.
We all heal from this differently and at different rates, but we heal. You will heal. In the meantime we are here to help you along.
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7 Reactions@jdub51 Welcome to the Head and Neck group. Radiation starting tomorrow. It won't be any trouble for the first few weeks. Things get worse as time goes on, difficult but not impossible. Keep your fluids up. Eat what you can and don't worry about weight gain because you likely will find eating enough later on to be very hard to do. Don't hesitate to ask for a feeding tube if you think you can't maintain a healthy caloric intake. And please have someone to help you out after the three week point. I don't mean to scare you, just prepare you. This will be your day every day toward the end of the radiation treatments. And when you start to feel better, then you get the Chemo.
We are here to help you based upon our similar experiences. If you have any questions or concerns that the doctors don't understand, chances are someone here does. You can start your own "Discussion" as well and likely get more responses right away. In the meantime, courage.
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6 Reactions@hrhwilliam Thank you William, I appreciate the sharing of your experience. It helps a lot.
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4 Reactions@hrhwilliam thank you so much. I am very fortunate to have to have a loving caring spouse who is a Nurse and loving family supporting both of us through this. I appreciate your advice and will continue to look for more information as we all go through this treatment. I am concerned about weight loss and have spoken to our oncologist about it. He stated that if he feels I need the PEG tube as we go through this… then we’ll do it. I was concerned about that disrupting the radiation treatments. And will discuss that with him next week. Thanks again
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4 Reactions@harleytiger From what I have read and what I experienced the peak of pain/symptoms was about 2-3 weeks AFTER radiation treatment was over. Then the slow climb back to somewhat normal taste, swallowing, eating foods you like, etc. My guess was about 3 months I could get faint tastes and saliva production was getting better and not so thick. It was about a year before most all of my taste was back and Saliva pretty good. AND yes your taste buds are toasted. Thats what the radiation does unfortunately as it kills the cancer cells. I would think by Christmas you will be about to taste. It started with my tasting for a few bites and then fading through the meal. Try to be patience as It is a slow process.
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4 Reactions@jkhagen1 thank you. I wish you a speedy recovery. I am doing chemo once per week ( docetaxil) and 5 days per week radiation. Just finished my first week. I hope all goes smooth for you .
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3 Reactions@harleytiger
I just saw this now. It's been about a year since I was in your shoes. I think for me the awful taste was what was hardest for me...I threw at least a couple temper tantrums over it. It took several months, but my taste eventually did come back to normal. At this point, I don't tolerate spicy foods well, but otherwise everything tastes the way I remember they always did. Hang in there, once you get through it you'll adjust to the life changes and they won't seem so bad, and you'll appreciate the things that return to normal all the more. God bless.
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3 ReactionsWHAT???? Ive never heard of anyone being cured without chemo radiation and I'm a nurse. Go get treatment before it’s too late. The treatment is not bad. I didn't think so the recovery was a bit more grueling. I’m sure when u tell your team u have No support they will set u up. Post on here I’m sure everyone will support u. U R IN CHARGE OF YOUR HEALTH AND U CAN DO THIS.
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