Hi everyone, I haven't posted in a while. Lots been going on lately.
My mom finished her IMRT treatments July 3rd.
She is 71yrs had partial glossectomy done first and then IMRT treatments. She was a stageII.

That first week post treatment she had some mouth sores, but they went away. Then a week or so later she started having lots of pain, started around her jaw and would move to the top of her head and would come and go. She described them as headaches. She would literally put ice packs on the top of her head because it hurt that much. Then she would have pain in her gums when she would brush her teeth.
When she would talk it is so hard to understand her. She said her tongue felt swollen. Most of the time she won't talk because she says the more she talks it makes her mouth/jaw and tongue hurt.
It just all hit her at once. She did fine during her IMRT treatments. She had no visual signs on her neck or skin area, that you would have known she had radiation.
Went back to see the RO and ENT who did her surgery. They said just the side effects from the radiation.
She is now on oxycontin 2 x day, taking percocet for breakthrough pain. They put her on a dose of steroids for about 2 weeks, and now she is on neurontin 3 x day. She has noticed minimal improvement with all these medications.
She can't eat anything but yogert, boost and baby food. She is also having alot of mucus in her mouth as well.
I was just so shocked because she did so well during treatment and to have all these side effects to start 2 wks post IMRT.
The RO said most of her pain is nerve related.
He told her it could take 6-8 months to recover.

I am just really worried about her.

Any thought from anybody would be greatly appreciated.

I have questioned them doing a CT scan or something just to make sure nothing else is going on and he said doing a CT scan at this point would show him nothing. That she is just having the after effects from the radiation.

I thought the IMRT was to have less side effects.


I am really worried about her.
Any thoughts or suggestions would be greatly appreciated.
Did anyone who had IMRT treatments experience that much pain?

Thanks, Michelle

Michelle, Your mother's condition sounds like where I was after radiation (although my symptoms built up more gradually during radaition). I had lots of mouth pain and it didn't really start to let up at all until maybe three months out. Six to eight months is a good estimate of how long it will take for the worst symptoms to go away and then you can expect she will probably take a full year to feel back to some kind of normal. In fact, one ENT I saw when I was about ten months out from radiation said that I was about 70% healed but I could expect the other 30% to take up to another year.

She may beat that schedule but it would be best to prepare her for a long slow recovery. The good news is even when it's slow, you do recover.

A CT scan is a lot of additional radiation for her at this point and it might show areas that are just irritated right now. Try to have faith that she's OK and these are just symptoms from the treatment. I know that's hard and certianly if the symptoms don't start letting up in another month or two, you might want to push for some other tests but right now chances are she's just going through what a lot of us went through. This too shall pass!

Nelie

Nelie,
Thanks for your response. It does make me feel better to know that somebody else has had these symptoms as well.
I am still very worried anyhow. It's been about 12 weeks since IMRT ended and things just don't seem to be getting better. Her pain is somewhat better but she is on Oxycontin, Percocet and neurontin, and she takes advil in between sometimes.

Her biggest problem is she feels like her tongue is swollen and she is even having trouble swallowing some of her pills at times. She said when she wakes up in the am she can't eat or drink anything for a few hours because if she touches her tongue to take her pills then the pain starts. She said she feels like the back of her tongue has some sores on it.
Her speech is so hard to understand. It's almost like she doesn't have control of her tongue. She said she wakes up in the morning and she has to push her tongue in behind her teeth on the bottom.
It's almost like she has alot of nerve damage.


Did you experience any of these symptoms???
Or has anyone else had these problems???

She has an appointment with her ENT this Tues.
So hopefully we will find out more.
I just feel so helpless. I am concerned about her getting enough nutrition.
She forces herself to eat. She says she has no appetite.

Michelle

Michelle,

I had most of the same problems that you describe (although I guess in my case they showed up earlier -- about halfway through radiation, and continuing on for many weeks after the end of my treatment). It doesn't surprise me that she's feeling the effects of nerve damage -- that happens with major mouth surgery and radiation. I had several areas that were numb for awhile, and then when the nerves started to regenerate, there were lots of strange pains and other sensations that would crop up suddenly.

It's also not surprising that she still has to force herself to eat. The effects often linger for months afterward (I know they did for me) and while mealtime was a tedious chore, I knew it was absolutely essential to my recovery.

Cathy