13 weeks post radiation and throat pain continues

@srm....how did things work out for you? It's been more than 2 years since your post. I hope you're back as close to normal as possible.

I'm 1 month post radiation treatment for tonsil/head and neck cancer. I feel very fortunate. While I've had some terrible pain, loss of appetite, and inability to taste almost everything, I am gradually improving. The pain/sizzling feeling I have in my mouth doesn't seem to be improving, though. It feels essentially as it did each day after I received radiation treatment...a sizzling numbness and pain inside my mouth at site of treatment. White mucositis is still clearly evident. Hoping that within the next month I start to feel improvement in that regard and the mucositis starts to fade away. Mouth is still dry with sticky saliva. Soups and nutrition drinks still the base of my diet at this point, though I did discover that I can eat lightly cooked or runny eggs with melted white American cheese. Any other type of cheese just doesn't taste right. Also discovered that I can taste cooked white fish now, but really have a difficult time trying to swallow that. Won't go down without drinking something to wash it down. Almost everything else at this point tastes nasty....but, that's actually and improvement. For the first 3 weeks after radiation I couldn't taste any type of food and attempting to really made me nauseous. I had no appetite until that phase passed. Mentioning all this for anyone new to this journey who may want to know how things progress. Everyone is different as they say, but while it may be a long road, if you pay close attention to the little improvements along the way, you can keep your hope up and anticipate that there will be an endpoint that might be back to where you can enjoy life and eating again. That's my outlook. Not to the end of the road yet, but I do notice little changes and improvements, so I'm just going day to day and can't wait to get to the end. Doctors told me that will likely be another 8 months down the road. If that's what it takes...I'm OK with that. I'll get there. Best wishes to everyone dealing with cancer. Not fun.

I’m on week one of my five week radiation and chemo treatment plan for head and neck tonsil cancer. The tonsil tumor was removed with surgery and I also had a left neck dissection. I’m just starting to feel symptoms and “sizzling” is a good way to describe it. I knew that after treatment was over there would be a long recovery so thanks for sharing your experiences so I have an idea on what to expect and to look for small improvements. Good luck in your recovery.

I can concur with your journey post radiation. Two years out seems to be the benchmark to look back on the worst of the recovery, however even at that point nerve issues can linger for years. Ghost spiders were felt on the side of my face and neck for several years. Pain from a yawn or sneeze brought tears to my eyes for perhaps ten years. Cramps in the neck, often noted as "lock-jaw" were also quite common. And certainly any minor bump, knot, sore, you name it were considered a return of the big "C", although it was not.
It can take years before you accept that this is how it's going to be and it's not that bad considering the alternative. The medical community often only relates what they read or were told but unless they themselves have been through it, they have no real idea. An MS patient once said to me "You don't get it until you get it." You don't really understand it unless you are living through it. Our cancer journey and recovery is very much like that. Only those who have gone before really understand what this path is all about.
Take-aways from the cancer voyage can be life changing. We each have to some degree I'm sure been blessed by the experience although at this point you probably think that is crazy talk. I can only speak for myself. For example: 1) Know your limits and don't exceed them. 2) Don't give up on a difficult task for it is not impossible. 3) If a job were easy, anyone could do it. 4) That person (stranger) who is going through cancer treatments, you can without saying a word, just give them a gentle hug. The tears in your eyes assures them more than any medicine. 5) Enjoy life and help others. This perhaps is part of that "helping others".
As I've said to others in this forum, " We cannot carry you, we can only talk with you and perhaps pray for you." Hopefully we can help you find your blue sky in the years ahead. Good luck.

Well my throat shut down during week 2 and I was on a feeding peg for approximately 7 months post treatments.
I’m 6.5 years out and still have heavy phlegm in the morning and have a hard time getting food down.
I lived on oatmeal for about two years and now I’m eating normal foods but need a tremendous amount of liquid to get it down!
But I ALIVE!
Wishing you the best!

MOJO

On year 21 now. No bread without butter and then eaten slowly with liquids. Cannot eat white rice without either gravy or in a bowl of milk. White meat chicken doesn't go down. I could go on but I found ways. Chicken fried rice with a drink works fine if I don't eat too fast. Toast with butter or hot rolls works better. I'm the last to finish a meal and I don't care. I might make a meal of a custard pie because it's relatively healthy and I can eat it.
In time (years) we figure this stuff out. I think the heavy phlegm issue for me resolved within five years post. I still cannot sleep through the night without water sips however. We all will have our bag of hammers to carry around. But I still fly airplanes, enjoy my grand nephews and nieces, run with the horses, and make the best of this world despite the setbacks (recently had to have my mandible rebuilt due to osteoradionecrosis from the radiation treatments). We will both make it. Good journey.

Amen!

I am 6 months post radiation. 35 sessions and 3 cisplatin 100mg treatments. I only did 2 of the cisplatin. I started this journey weighing 336 pounds. I am maintaining 196 pounds now. Got my peg tube out a few weeks ago, but I never used it. The formula made me nauseas. I can eat some foods. Ribs from Texas Roadhouse go down pretty easy. Chicken wings aren't too bad. Meatballs. But no bread, no candy, no chicken or pork. Well, I can force chicken down, but with a lot of water. Most days I don't eat. But it isn't because I have issues with saliva. I do have issues with saliva, but it doesn't prevent me from eating. I have a pain in my throat? base of my tongue? Not sure where it originates, but chewing causes me a lot of pain. The pain has been there since right after radiation ended, but has progressively become worse. I had a scope inserted into my sinus and pushed down my throat in January by my Radiation Oncologist. He said that he pain was caused by some inflammation, but that everything looked good.
Two months later, the pain has become worse and is a real hinderance to my ability to eat solid food. The glands on the side of my neck are tender. Oncology said it was my parotid gland and that was par for the course. I am going to see my Medical Oncologist on Monday, 2 months early, because this has become a real concern to me. Fingers crossed it's just part of my process.
For months I thought my ability to taste food wouldn't ever return. But it has. It is markedly different. I am more sensitive to flavors in some foods, and some foods I can still barely taste. Foods I used to love, i now don't like. Foods I used to dislike, or not like much, I love now. I am producing more saliva, its a progression. I was prescribed Cevimiline 4 months ago. I took it for a few days without result back then. I haven't tried it since, but I am considering trying again.
As for maintaining my weight without a PEG tube or much solid food I rely heavily on half-and-half. I make my own cause it has more calories. I mix equal parts whole milk and heavy whipping cream. It's the one thing I enjoy. Only problem is with reduced saliva production, it tends to my my mouth sticky and leaves a greasy film. But it sustains me.
I never thought that I would ever in my life be looking at calorie values of food to find the highest possible calorie count. Most of us are looking at them calories to see where we can cut some out.
Well, best of luck to all of you. I will keep you posted as to what the MO says on Monday. Wish me luck.

I too have undergone radiation in my neck and chemo for squamous cell carcinoma. It has been just over 10 weeks since my 34 treatments of radiation. You described my pain exactly. My throat is not healing despite doctor saying it appears healed. Fortunately I do have the feeding tube to help me get calories. However eating can lead me to tears dealing with this pain. I’ve reread this post several times, I believe the original post was some time ago. Can you please update me on your progress ? How long did it take to final eat and swallow normally?

Hello @egray67 and welcome to our head and neck group, not that anyone really wants to join. But here we are.
Your term “swallow normally” kind of took me back as it’s been since November 2001 for me. Don’t get me wrong, I can eat and swallow and am thankful for that. But “normal”, I have forgotten what that means.
I like most have a new normal, a place that works for us, a retrain of eating we get used to and it works fine for me. No complaints.
I think my throat didn’t stop hurting for perhaps a year when I ate. A sneeze would bring tears to my eyes for many years.
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Welcome and good healing.

My husband finished radiation almost seven months ago. He has recently had an ENT surgeon open up his esophagus with a balloon. At this point my husband thought too that he could start eating. He has had a feeding tube since beginning treatment last March, 2023. He still cannot eat much at all and even soft food is difficult for him to swallow. The ENT doc will not see him again until six more months have passed, to take M to a year out. I don’t quite understand but he’s the doctor. M also has scar tissue in his mouth and lymph node problems. He is very discouraged and most meals are thru his feeding tube. We will go thru six more months to find out if he can resume eating. It never seems to end!

He had pharyngeal cancer on the base of his tongue. The cancer is gone 😙 but radiation is the culprit now.