I finished radiation January 22nd. I keep expecting things to get better but they seem to just get worse. My ENT said don't expect things to ever get back like they were, but he didn't tell me my tongue would burn forever. Is that normal? It has me scared that there is more cancer in my tongue. It hurts to move it back and forth even.

And my neck from the neck dissection in September seems to be getting stiffer instead of more relaxed. The ENT suggested physical therapy for that but he talked about massage therapy and I don't think I want anyone pushing on my neck. It is sensitive to touch.

My tongue burns once in a while it's mostly at night. Sometimes I think it's back, but then I think about the day I put in with all my talking. Also it depends on what I eat, it will burn.

My neck gets stiff too I massage it myself it feels good and it does loosen up.

I finished radiation in Oct. and everything burns my mouth. I find I don't enjoy most foods anymore. I look forward to a milkshake everyday, that is something I really enjoy but I am afraid that I can't live on them.

It takes incredibly long to recover.
Even more than 2 years out one discovers that all of a sudden some food becomes tolerable again. Others (spicy foods) may be off the menu forever.

M

Bloop,

I passed the 2-year-post-surgery mark this week, will pass the 2-year-post-radiation mark in August, and my tongue is still improving. Strangely, I've noticed a big improvement in just the last couple of months or so. Still can't do spicy hot foods, but that's pretty standard. Your mouth was assaulted during your treatment and it just takes a whole lot of time for it to recover. Yes, its frustrating and discouraging, but chances are it will get better!
And for the massage, I had some treatment/massages on my neck from a lymphedema specialist and it was wonderful. Soft and gentle stroking to get the fluids moving again, nothing deep or harsh. If your doctor recommends and your insurance will cover, I say go for it!

- Margaret

Thanks for your responses. I suppose I am trying to eat spicy stuff too soon, but Mexican food is my favorite - lol.

Margaret, it looks like the same thing happened to your PEG as mine. Mine was hurting and no one would listen at all and they finally did a scan and found it was out of the stomach in the abdominal wall. They put a G-tube in then instead of another PEG tube. That ended up being the worst part of treatment at the time, but post-treatment is becoming a real pain now.

I have not checked on the massages yet but maybe I will now that you recommend them.

Bloop, I have one of those beanbag things that you put in the microwave. Not sure if the store is national or not but, I got it at bed, bath & beyond. Ive seen them sold at drug stores too. Every evening I heat it up and then wear it draped over my shoulder. It helps to loosen up the tightness. If cold works better for you, it can also be put in the freezer.

The mouth issues can take a long long time to resolve themselves. I also noticed some differences around the 2 year mark.

That makes 3 of us with the peg in the abdominal wall. That was so painful and the darn doctors and nurses wouldnt listen to me day after day during my long hospital stay.

On the subject of spicy food. I'm six years out from treatment, and still limited in the heat I can handle. I continue to make improvements, but my semi-famous two alarm chili is still out of the question.
Now, I don't know if she's full of crap or not, but I had a nurse in the EENT clinic tell me that the lack of saliva is what limits me. She said that my mouth's normal response to spicy food was to salivate and flush it out. Without the saliva to flush the hot sauce out, it just sits there and burns.
It made sense to me at the time...
And my tolerance for heat has improved with my saliva. Could just be that both are improving at the same time and are unrelated, but I don't think so.
Any thoughts on this theory? Or was she full of crap and just trying to shut me up?

Good Health,

Chuck

I used to love mexican food, but I can not eat anymore. Burns my mouth. I can not even eat mild BBQ sauce. My eyes begin to water. I tasted some BBQ sauce tonight and it about burned my mouth off. It used to be a sauce I could eat all the time and it not bother me.

I finished rads , chemo and rad seed implants March 2008 and My tongue if anything is burning more than ever and the neck dissection is getting worse too. It even hurts to look upward. I am told that I have very severe radiation burns that cause this and it will never get any better but keep getting worse. I am one that wants the trurh and no maybe,s. My Drs are upfront with me since day one. Take it one day at a time and keep asking questions as to the whys. Good luck. I will live with this and keep smiling because I am alive to feel the pain.