Getting frustrated with throat pain post radiation

I had similar damage from radiation. My treatments completed May 5th, 2023. At my 1st follow-up appt in Aug, I told my radiologist that they gave me perpetual strep. throat. I had 35 doses over a 7-week period.
I was told to give it time. By Nov. 2023 I was better. Pain not so bad but still had a hard time swallowing and food did not taste like much. It is mid Jan. and swallowing is still difficult compared to my old normal, but pain is gone.
I am at 7 months, cancer free so far, 43lbs lighter, don't like to eat as much as I used to. I can live with this.
I am told I can expect more improvement over time. 1 -2 years? I will keep updating. Hope i can keep the weight off. All this said from the days of struggling to get 8oz of boost down (took me oxy and an hour) to now, I have improved immensly and I hope you have similar results.

I understand frustration...I do. With any luck it will be short term and not last too long.
I love how they just say go here, and go there! Its not their wallet, or their body being probed over and over and then have them say....Hmmm, I dunno. Maybe try this guy instead. Nope!

How am I doing? No change. My throat/tongue/swallowing hurt some all the time and quite a bit worse when eating especially in the morning. I'm back to acetaminophen and ibuprofen before meals. Talk to the cancer team? Sorta. Their answer was to go see an Ear, Nose and Throat specialist, which means shove a scope down my throat and see nothing. Let's say I'm less than enthusiastic about my medical care right now. My conclusion is the pain is a side effect of the radiation and it could last for weeks, months or years as others have mentioned. Thanks for asking, but I'll just deal with it.

Hi @chris0126, welcome. You're not alone in the ice cream department. @alpaca tells of her love of ice cream here:

- Who Can Resist Ice Cream With Chocolate on Top: Meet @alpaca
https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/who-can-resist-ice-cream-with-chocolate-on-top-meet-alpaca/
@mytwocents, how are you doing? Did you talk to your cancer team about the return of the pain?

Not sure about you, but I can sample a lot of ice cream in two years...lol

Hello @mytwocents and welcome to the head and neck group. Your input is always welcome.
Sounds like you are on the uphill to recovery, which can take a couple of years and then some, particularly if you developed neuropathy from the radiation. I wish you well. If you have any questions don’t hesitate to ask.

I just discovered these postings and appreciate the information that my pain post radiation is probably normal. Let me offer a couple of comments for others. I'm 71 now and was diagnosed with the infamous squamous cell carcinoma in my tonsil about a year ago. Had surgery to remove the tonsil, etc. in May, 2023, followed by 33 radiation treatments ending mid-August, 2023, which puts me now at a little over 4 months post radiation. Lots of throat pain and weight loss, but years ago I discovered studies that promote acetaminophen and ibuprofen together as working better than either one alone. I think they helped me, along with the hydrocodone for a few weeks. For the weight, I still heavily eat Greek yogurt with honey, which is common in Greece as we found in our travels. I weaned myself off the pain pills about a month post radiation and dealt with the discomfort, but the pain returned about a month ago and I'm trying to avoid going back on the pain pills. It's probably common, but as with all of you it sure is frustrating. Even with the pain and weight loss, I'm still walking the golf course 4 days a week so don't let it slow you down.

Hoping you see progress. I was very fortunate that i did not have the dry mouth so many experiences. In fact I had the opposite. Loads of saliva and phlegm. I carried a spit bottle around for a while. I even had a relative ask me if I was dipping tobacco after throat cancer.
My radiologist said she has seen it both ways but more common to be dry. After about 4 months, it has normalized, still my throat feels like it does when you are getting over strep throat. Still tender but tolerable.

Hello, My husband had 35 radiation treatments which ended 9 weeks ago. He had the same issue--able to eat some with pain pills, then better, then all of a sudden more pain, back to liquids. It turned out he had Thrush on his tongue. This is a fungal infection on the tongue that arises because the bacteria in the mouth is out of sync and is exacerbated by low saliva. This is common apparently in patients such as him and you. It causes a white coating on the tongue and painful ulcers on the tongue. Check in with your oncologist and see if you have Thrush. In our case all we had to do was text a picture of his tongue, and they put him on a 14 day course of anti-fungal medication which has helped tremendously.

Other than that, we are taking this day by day. It is frustrating because always two steps forward and one step back. He got his PEG removed yesterday, but he still requires Hydrocodone to eat and is still on a low dose pain patch. So this is not over yet......I guess we all have to be patient but it is frustrating.

Sugar is a big category. I know reducing sugar must be a good thing yet natural sugars, any chemical ending in ose are present in most foods.