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.

I would definitely recommend PT for the stiff neck problems and lymphedema. Mine started each session with a nice moist heat wrap for 20 minutes and then gentle massage followed by stretching of my muscles and arms to get better movement. Each session was closed with a 5 minute back massage. See if you can find a PT that deals with head an neck issues. Maybe your RO can recommend one. PT is usually covered by insurance. Regular massages usually are not.

Take care,
Eileen

Eileen, I finally got authorization for PT and I am going to do it because according to my ENT and EZJim it does not get better, only worse. That is just so hard to comprehend with this dang disease. I'm so used to being a fast healer. I broke my shoulder three years ago and was back to work in a week after surgery. I was in pain but I could still type and I could take the pain as I knew it would get better in time. But to ask the ENT when my mouth is going to feel better and have him say, don't look foward to it. It will probably just get worse. That just floored me. I sure didn't want to hear that. I need to get a little different attitude towards food and quit trying to be a wonderwoman and think I should be able to eat anything by now. It's been four months or so since radiation ended. I guess I don't have much patience. And my family doesn't understand anything about radiation to the mouth. They just liken it to the radiation two of them have had to their breast and don't see why I have side effects since they didn't have any except burning. Of course their radiation was also only about 30 seconds compared to our 20 minute zapping.

I too have a tingling in my tongue and according to my ENT a lot of scar tissue which is painful. I am still using my painpatch and afraid to come down anymore, because I do not want to feel any of the pain. My ENT did tell me it may not get much better than now, but it is not going to get much worse either. I hope he is right. The wonderful gift of radiation. I also try to look at it in this way: I am cancer free and knowing that the pain is not from cancer but just the side effects I can live with that.

I do everything I have been told to do for the burning tongue including brushing it 2 times a day, but it continues to burn away as it wants to,. For my neck, in the morning I get the shower as hot as possible and allow the shower to do a massage on my neck an shoulders for a few minutes. I turn my body slowly in a circle and make sure my neck and that area are completely massaged by the heat. It helps for a couple of hours. Maybe not good, but for me it works.

Glad to hear you got script for PT and hope you find a good one. Did the doc give you any recommendations? Ask the PT to start with moist heat for 10 to 20 minutes. It helps so much.

As to eating, you need to stay away from the spicy stuff. If your tongue is still burning, has you been checked for thrush? What are you doing for teeth? Can you chew?

If it now summer and all those nice veggies and fruits will available. Try some of them- have some fresh blueberries or strawberries in heavy cream or yogurt or on pancakes. I could eat tomatoes but some find the them too acidy early on. Keep sampling stuff. Just because it didn't work this week dosn't mean it will or won't next week.

Take care,
Eileen

After a year, fresh hot peppers and some salsa still causes burning in my tongue. It was a good 6 months before it did not burn all the time.
This seems to be the slowest part of healing, but it is still improving. I can however eat hot sause like it was catsup, so it can get better. Be patient.

Ditto on the PT! They started me out on the moist heat also and it felt so good. She did say the longer you wait, the harder it will be. I think it took several weeks and then that was enough. Everyone I talked to after PT said they noticed the difference. I just held myself differently.

I wake up with my neck feeling tight, but just do my stretches and I'm good.