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HPV Tonsil cancer: I'm very nervous about chemo and radiation
Head & Neck Cancer | Last Active: 3 days ago | Replies (113)Comment receiving replies
Hello All, I am 3 ½ weeks out from my 25 rounds of radiation. My ENT told me that I received 5600 Rads? Prior to radiation, I had my Rt HPV positive cancer tonsil removed and a small 1 cm mass. Also several lymph nodes for precaution, but only one was positive. I read this blog a lot just to see if I'm in the correct stage of healing and to seek wisdom from those before me. I may just be ahead of the game? I wasn't given a feeding tube and so I drank my share of Boost. After week one I was eating soups, oatmeal, and Creme of Wheat. After two weeks I was eating more solid food. I even ate two In N Out Cheeseburgers. I needed a lot of water to get it down, but I did it. I'm driving my wife crazy trying to find me something I can eat that I like. It hasn't happend yet? I can get one faint taste of the food I'm eating and then it rapidly goes away. The metallic tastes went away after about a week? Possibly a few days later? It's amazing how I have to force myself to eat like the others here have all said.
My nose runs every time I eat, I also notice I sneeze more for no apparent reason? My fingernails are very soft and I don't know why? My dry mouth and thick saliva are a major problem. The morning for me is not too bad, but as the day and evening goes on, it all gets worse. My best time by far is in the morning. I almost fell normal? My neck has Radiation Fibrosis and I keep trying to work it out. It feels tight and I'm continually moving my head from side to side and up and down. I still have pain in my inner ear from time to time but my Oncologist said it should all go away. When the ear pain comes I may take an Advil? My ENT said the radiation is still working in the area killing the cancer. That I didn't realize. I'm scheduled for a PET scan in December and then I meet with my doctor team again with the results. Hopefully the results are all clear.
I have had a lot of surgeries in my time, but I feel this is the hardest thing I've ever been through. I can't wait to get to the "new normal" everyone alludes to. Can you tell I'm not a patient man? LOL
Tim
Replies to "Hello All, I am 3 ½ weeks out from my 25 rounds of radiation. My ENT..."
@harleytiger I'm a few days past my 2 year an from tongue cancer surgery. It sounds like you are healing well! The best I can tell you is that healing, eating, taste, etc is slow...very slow...extremely slow! The neck stiffness come and goes. I also have times when swelling in my mouth and throat are an issue. Then I will go weeks,with no issues. I've learned that when problems come up they are not permanent. So don't be discouraged if you have times when your throat is tighter or mouth is drier....it will pass. I was told that by other patients and its true. Good times get longer and bad times are shorter.
I triggered my taste buds with salty, sweet, and sour to get them to relearn their job. Dill pickles, lemon slices, cheap candy suckers all helped trigger taste and saliva. I would drink water and touch them to my tongue. Sometimes it triggered nerve pain on my surgical side. But my saliva is pretty much normal now. Taste, too. Good luck to you. Sandy
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@harleytiger I am happy to hear you are done being zapped. Many of us had 35 rounds or seven weeks of radiation. Those last two weeks did the most damage to me and I'm sure others would agree. It's like making toast and then watching it burn instead of popping it out.
The thick saliva will likely hang around for a few months as you heal. Lovely I know, right?
Your nose runs, common thing for many of us. Some say it is a salivary gland re-route. I have a friend who leaks saliva from a small fold in the neck when she eats since radiation. I have the runny nose while eating all these years out of radiation.
Your neck will be stiff. You likely will have brief nerve pains in the neck, shoulders and arms. Be careful eating dry foods, breads, rice, white meats. Lack of saliva. Most issues go away in a few months while others might hang around for years or forever. The good thing is you are on the mend. You got through what very much the thought would scare most people.
Good healing and welcome to life post-cancer.