Getting frustrated with throat pain post radiation

Posted by srm @srm, Nov 26, 2021

Now 5 months post radiation. 33 treatments of targeted radiation plus chemo therapy for my stage 3 Metastatic Squamish Cell Carcinoma back of tongue R/S. A few weeks ago my throat pain was subsiding enough whereas I finally started eating soft foods with some good success. This week the pain increased to where I have had to go back on liquids. The pain is either on the left side, right side or back of throat. Sometimes the entire throat hurts like strep. The pain is always present but is really bad when I swallow something. Seems to be 2 steps forward and a few back. My oncologist claims that the pain will eventually go away but cannot provide any kind of time frame. Has anyone with similar treatment experienced throat pain for an extended period post radiation? If so, how long did it last? I was getting really excited and optimistic for a couple of weeks while eating very saucy soft foods. I was finally making progress and then things just got worse again. Nobody said this was going to be easy but it gets discouraging when I appear to be making progress just to fall back again.

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@davehutsell

I had Squamous Cell Cancer at the base of my tongue.right side-center. I also had cancer in my lymph node, right side of neck. The treatment was 7 weeks of radiation-35 sessions and weekly chemotherapy. I know what you mean when you say pain in the neck. For a period of time it would take me an hour to get a boost down. I remember wishing for the day i could enjoy eating again.
My last treatment was May 5th- It has now been 5 months and yes i have some days of little pain and others of more. I am transitioning into a more "normal " diet yet I have discovered that certain foods agitate my throat and brings back pain. I am learning to experiment. I cannot say i enjoy eating but live in hope that one day i will. A positive of this is a am now at the weight i should be, 48 lbs lighter. My experience so far is to be patient and know that i am so much better than even a month ago. My anticipation is next month I will be even better. I hope you will be too.

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Is it just your throat that causes pain? Same things as you, but my tongue is still numb and sore on the radiation side. I can’t push anything as far as food down without a lot of liquid. I’m so frustrated! Five months since chemo and radiation and I’m down 87 pounds. Good thing I was overweight or I’d have really big problems!

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It is just my throat that is sore. I still am tender on the right side of my neck but not painful. I am in the same time frame as you from my last radiation. There are days that my throat is more painful than other days. I do chase most foods down with water or juice. I lived for almost 4 months on Boost 520 topped of with Carnation Instant Breakfast High Protein. I drank 4 to 5 of those a day. Still lost weight.
Today i might have 2-3/week. A good meal for me is some sort of very tender crock pot roast with lots of gravy over mashed potatoes. I eat a lot of steamed veggies like squash or broccoli covered in olive oil. For breakfast i eat oatmeal, juice or scrambled eggs. For snacks I eat peanut butter and bananas. The main thing i have noticed is a chew everything I put in my mouth a lot. I also take much smaller bites as I think my throat has shrunk some. My stomach has shrunk a lot so i eat much smaller portions as well. I'll ask my Dr. next time about that. All in all, it does get better, yet I just don't enjoy eating like I used to. Maybe that is not all bad. Hope you improve as well.

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Hello,
I’m coming up on 7 years out from stage IV treatments.
My oncologist managed my pain with narcotics and fentanyl patches which I was very hesitant to participate!
My oncologist insisted I follow the pain management protocol or pain will be unimaginable.
I followed the management regimen for several months post treatment and then weaned myself off from the pain meds.

I actually ended my pain management program much earlier than what my oncology team had expected.
My throat was still sore but I could deal with it, I was determined to NOT get dependent upon the narcotics!

Eating however, took nearly a year before I could eat any foods. I remained on a feeding tube until I could eat oatmeal and then oatmeal was my meals for a very long time!

MOJO

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@jersey3422

Is it just your throat that causes pain? Same things as you, but my tongue is still numb and sore on the radiation side. I can’t push anything as far as food down without a lot of liquid. I’m so frustrated! Five months since chemo and radiation and I’m down 87 pounds. Good thing I was overweight or I’d have really big problems!

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Sorry i just read this.
I have improved since Oct. 6 to the point i am eating more solids. Pain is not the issue. I have changed the way I eat however.: Small bites, chew well, chase with water or juices. I definitely do not eat as much as my throat seems to be smaller. I will ask my Dr. next checkup. Could be scar tissue or it just is smaller?
Hope you are seeing improvements.

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@henrytimmins

I have the same thing however I have to decide next week whether I proceed with these 33 radiation treatments and attending chemotherapy treatments. it doesn’t sound like it works I have done a fair amount of work already since the diagnosis of cancer in September I have been doing the best I can to starve the cancer. I have lost 33 pounds in two months In my attempt to starve the cancer by reading my diet completely of sugar. now I can eat and drink everything. And I wonder whether I should be following the protocols of the five or six oncologists that I spoke to. I would prefer to wait and see.
God bless you

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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.

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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.

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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.

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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.

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@mytwocents

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.

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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.

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@srm

@hrhwilliam
Thanks for the honest response. Two years is a long time but at least it puts some perspective into my situation. Hopefully I won’t need to endure for two years (or longer) but at least this may help with becoming less discouraged over believing it should be different. I can just learn to grin and bear it when things are tough. And learn to enjoy the days when my pain is more manageable. I do realize at some point in the future I will need to own “my new normal”.
Going through the big C definitely gives a person a different perspective on life.

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

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