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

@linda90,

Not sure what kind of cancer you had but I had 35 rounds (7 weeks) of Photon radiation for a total of 70Gy and 3 rounds of Cisplatin chemo for tonsil cancer back in 2008 but no surgery and I did research then and found in an England Journal of Medicine that honey could help soothe the throat pain from the mouth sores/ulcers you will get. I did shots of real honey not the ones you find in your local grocery store which most all are synthetic and don’t have the same benefits. It definitely took some of the edge off for me.

I would only use MANUKA honey (it’s from New Zealand) which you can find on Amazon that scores at least UMF 15+ and MGO rating of 500+ are considered potent enough for medicinal use- UMF ranges from 10 to 25, the higher the rating, the more potent the benefits are, and of course, the more expensive, the honey. Also, the higher the rating the thinner the honey and better tasting- I use UMF 18+ and 700+ even now for many health benefits it offers and my most recent cancer treatments I received. In addition, I heard very good things about Red Light therapy, which uses infrared light from a wand in the throat has worked well for many.

Others mentioned ACES + Zn® supplement. If you google it contains vitamins A, C, E selenium and zinc. They thought it helped regain taste faster. In addition, someone mentioned putting fresh Ginger on your tongue before eating and spitting it out.

In looking back at my notes, it took me about 10 months to get most of my tastes back and not have alcohol not burn as much and have my dry mouth the best since I that treatment began.
On the positive side, when my taste buds started coming back, I actually enjoying more healthy vegetables that I never liked before and some sweats were even sweater.

Hope this helps and good luck on your journey.

@harleytiger I had radiation to my right side below the jaw line (neck) as I had a couple of positive lymph nodes in that area with cancer. Today two years out I still do not have hair growth in that area. Glad your taste is slowly coming back. It will be very gradual. Hang in there. Sounds about like what I went through and within a few months I could taste pretty well.

I haven't replied to anything on here for quite sometime. I am now 8 weeks out from treatment, 7 chemotherapy and 35 radiation.
I guess I am very impatient about eating. Although I can swallow ok, I can't seem to eat so am still on my feeding tube. Taste is fair until I start to chew and then it is a massive turn off. I keep trying various different foods but it is all the same.
Wondering on any time frame until I can start to enjoy eating.

@jonesja Thanks, I guess I have get used to shaving all the time. I don’t mind shaving I suppose. 😊It could be worse. Did you notice that sneezing becomes more often after radiation?

@harleytiger Yes I would have sneezing fits for lack of a better word and then drainage would follow. They gradually diminish the first year. As of today I have them now and then but not often. My salvia is almost normal and I have no dry mouth to speak of. I hear the hair regrowth is 50/50 so you may have a chance for some to return.

@johnschaar You should be on that cusp of returning to some normalization when it comes to food and eating. Eight weeks and your body is finally beginning to heal.
For me, some foods never taste the same anymore while others I enjoy now when previous I never had cared for. I am happy to hear that you can swallow okay. This is usually the issue with most patients. Likely the damage done to your nerves reflect in your taste buds not giving your brain the results you are expecting, and this takes sometimes years to work itself out. I for one think that our tastes never correct but our brain gets used to the new flavors. Maybe you could find a little something you do enjoy eating and just stay with that for a while. I ate a lot of custard pie in the first three or four months, tolerable and actually good protein as well.

@jonesja Thank you for the response. Have you noticed that your nose starts running while and after you're eating? After a meal now I always have to blow my nose. I also noticed my fingernails are extremely soft. Weird the things I've noticed.

@roblem I know about the clean hair areas and I have growth? It's a patchy mess. Thanks for responding.

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