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Your tips for recovery after 35 radiation treatments for tonsil cancer

Posted by dragonfire @dragonfire, Oct 18, 2025

Just completed 35 radiation treatments for HPV positive tonsil cancer at stage 1. I am frustrated with the pain, dry throat, medications and the duration of all this. My last treatment was last Thursday I met with my doctor yesterday to learn I have weeks possibly before I can eat in a normal manner which was difficult to accept. I have been told to focus on the positives which right now is difficult for me to do. If I had really known all that would happen I would have never agreed to the treatment. I can only manage cream soup, scrambled egg, jello for foods during this what I term a living hell.

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Mentor
William Olsen, Volunteer Mentor | @hrhwilliam | Feb 12 4:59pm
In reply to @dragonfire "@lizzyj58 I wanted to follow up since it has been some time. I had my PET..." + (show)
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@lizzyj58

I wanted to follow up since it has been some time. I had my PET scan results and it was good news the test was clear the oncologist said it looked great. The physical exam did not show any signs either. This is great news however my taste is so very slow to return after 18 weeks now. I see my ENT next week but don't see the oncologist for 2.5 months.

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@dragonfire Great news. It can take months if not years to get most of your tastes back. You may even have a few setbacks but it looks like you are on to recovery. In the future, every little thing that crops up your mind likely will go to thoughts of cancer. Likely it is not. I will let you know when that feeling subsides. For me it has not as of yet but it only has been twenty-five years. In the meantime, welcome to the other side.

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dragonfire | @dragonfire | Feb 13 12:07pm
In reply to @hrhwilliam "@dragonfire Great news. It can take months if not years to get most of your tastes..." + (show)
Profile picture for William Olsen, Volunteer Mentor @hrhwilliam

@dragonfire Great news. It can take months if not years to get most of your tastes back. You may even have a few setbacks but it looks like you are on to recovery. In the future, every little thing that crops up your mind likely will go to thoughts of cancer. Likely it is not. I will let you know when that feeling subsides. For me it has not as of yet but it only has been twenty-five years. In the meantime, welcome to the other side.

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@hrhwilliam

Hopefully not years for taste since I do not have that many left at my age.

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bluechip33 | @bluechip33 | Feb 13 3:50pm
In reply to @56tburd "@dragonfire I can assure you, even though things seem dreadful now, they will get better. Your..." + (show)
Profile picture for 56tburd @56tburd

@dragonfire I can assure you, even though things seem dreadful now, they will get better. Your life has been changed to save it, and sometimes that is hard to accept. I'm 20 years out and have gotten to be a part of my 4 grandkids' lives. Though I wish the treatment wasn't so brutal, I'm glad for the opportunity it gave me to live my life. I wish the same for you. Good luck!

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@56tburd

Try high calorie Boost. It’s 530 calories in an 8 oz. drink, only available on internet (Amazon). Get vanilla and don’t fret about eating. I’m 2.5 years out and it’s a slow process but I had exact diagnosis as yourself and it will improve. I still don’t eat like BC (before cancer) and it took 2 years to gain most of my weight back. Get to the gym and don’t just add ballast!

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praying4miracle | @praying4miracle | Feb 21 5:05pm
In reply to @dragonfire "@lizzyj58 I appreciate your response I just want real food so bad. I have ulcers in..." + (show)
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@lizzyj58
I appreciate your response I just want real food so bad. I have ulcers in my mouth causing pain and I am using the salt and soda rinse. My wife even is frustrated that I can't eat. I get tired in the afternoon so I sleep a couple hours. I get tired of being in the house but I don't' want to catch germs in the store. I don't need any more problems. I just feel so alone I used to have my dog for company but lost him to kidney disease in April. I glad I can work part days I was going to retire but I feel now needing the comfort of the job to continue working. This just seems like and endless wheel of small improvements, limited food, medication and a constant sore mouth.
I feel like a made a huge mistake having the treatment especially when I researched other treatments that are not so long. No one said I would experience all this that I question if surgery would have been better. But it is too late now and the damage is done all I hope for is improvement.

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@dragonfire
I understand your position and second quessing if you did the right thing. There is no perfect answer you can only move forward from where you are now. I had the surgery and doctor cut my carotid artery...it caused me several complication and the surgery was aborted since I also died...so I still had to get the radiation and chemo. It has been a year and I still cannot eat or drink without aspirating...so I understand what it looks like to turn around and ask..if only I had...
My advice on fatigue, there is a supplement called mitocore that helps repair your mitochondria which gives the cells their energy. Also take some good antioxidants after a couple months from last chemo treatment. my prayers are with you

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dragonfire | @dragonfire | Mar 9 10:25am
In reply to @dragonfire "@lizzyj58 I met will my ENT and Oncologist they both could not see or feel any..." + (show)
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@lizzyj58

I met will my ENT and Oncologist they both could not see or feel any cancer indicators which is very good. They are 91 percent confident the cancer is dead. I am scheduled for a PET scan end of January. I am 12 weeks post radiation and still have very limited taste that is disappointing and frustrating. The doctors both said in time I will improve and should see improvement 4 to 6 months. This seems nothing to them but a long time to me. I wonder if things really will improve because I have resorted to weekly milestones to gauge my change and change is SLOW.

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@dragonfire

The good news is my PET scan was clear. My oncologist and ENT both say I look great. They want to check me monthly but thrilled with my progress. The other point I am at 5 months and taste is still my struggle. I can taste some things but not only about 50 percent of what I think it should taste like. Then some days I do well and then struggle the next day. The doctors and my research all say at 6 months to a year things should really improve. I hope so this is gets very disappointing struggling with taste which I never thought I would ever do.

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jonesja | @jonesja | Mar 9 1:09pm
In reply to @dragonfire "@dragonfire The good news is my PET scan was clear. My oncologist and ENT both say..." + (show)
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@dragonfire

The good news is my PET scan was clear. My oncologist and ENT both say I look great. They want to check me monthly but thrilled with my progress. The other point I am at 5 months and taste is still my struggle. I can taste some things but not only about 50 percent of what I think it should taste like. Then some days I do well and then struggle the next day. The doctors and my research all say at 6 months to a year things should really improve. I hope so this is gets very disappointing struggling with taste which I never thought I would ever do.

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@dragonfire PET scan all clear is great news. I would say being at 50% taste at 5 months may be a little behind most but not much. Your taste should continue to improve although not as fast as you would like. I took me about a year to get to 90% taste or so.

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dragonfire | @dragonfire | Mar 10 11:41am
In reply to @jonesja "@dragonfire PET scan all clear is great news. I would say being at 50% taste at..." + (show)
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@dragonfire PET scan all clear is great news. I would say being at 50% taste at 5 months may be a little behind most but not much. Your taste should continue to improve although not as fast as you would like. I took me about a year to get to 90% taste or so.

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@jonesja

Yes, very frustrating some days taste fluctuates. I can taste things like pickles, mustard, ketchup, eggs, but have trouble with meat flavors. I experiment daily with something new to see if I can taste it. However, my taste is probably 70 percent at best with things certainly not 100 percent. I cook a lot and need to rely on others for the true taste which is frustrating. The medication I was given for dry mouth just made me sweat the doctor told me to discontinue use since it did not help.

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56tburd | @56tburd | Mar 11 7:03am

It's scary going through it all, the side effects, the uncertainty, and the fear that cancer might return. When you're in the middle of it, it can be overwhelming. I kept reminding myself that this too shall pass; perhaps not quickly enough. You've fought a deadly disease, and though scarred, you've come through it. Things do get better for many people, and I hope that is the case for you. It's been 20 years for me, and I've enjoyed a full life that would otherwise not have been. May you do the same.

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albion223 | @albion223 | Mar 12 8:16am
In reply to @dragonfire "@dragonfire The good news is my PET scan was clear. My oncologist and ENT both say..." + (show)
Profile picture for dragonfire @dragonfire

@dragonfire

The good news is my PET scan was clear. My oncologist and ENT both say I look great. They want to check me monthly but thrilled with my progress. The other point I am at 5 months and taste is still my struggle. I can taste some things but not only about 50 percent of what I think it should taste like. Then some days I do well and then struggle the next day. The doctors and my research all say at 6 months to a year things should really improve. I hope so this is gets very disappointing struggling with taste which I never thought I would ever do.

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@dragonfire
Great to hear positive news about your recovery…I think I can speak for everyone and say your good news is good news for everyone.

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albion223 | @albion223 | Mar 12 8:22am
In reply to @56tburd "It's scary going through it all, the side effects, the uncertainty, and the fear that cancer..." + (show)
Profile picture for 56tburd @56tburd

It's scary going through it all, the side effects, the uncertainty, and the fear that cancer might return. When you're in the middle of it, it can be overwhelming. I kept reminding myself that this too shall pass; perhaps not quickly enough. You've fought a deadly disease, and though scarred, you've come through it. Things do get better for many people, and I hope that is the case for you. It's been 20 years for me, and I've enjoyed a full life that would otherwise not have been. May you do the same.

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@56tburd
Reading about your experience makes me realize we’re all experiencing similar issues (but more importantly) don’t loose faith!
I’m almost three months out from the end of radiation and can confirm that my body continues to recover (slowly…), dry mouth, taste, and energy levels are all trending up.

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