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

Michelle, She may not feel she has any appetite until she is ready to get off the prescription pain meds. They are notorious for killing appetite.

I still have problems with my tongue, especially when my mouth gets very dry, feeling like it's too big for my mouth and hanging over my bottom teeth, etc. It's ironic since I have about 1/3 less tongue than I used to, but I think it has to do with nerve damage from radaition as well as having a very dry mouth (so my tongue actually does get swollen and I feel my tongue sticking to my teeth).

It sounds like she is having similar problems with her mouth getting very dry at night and that creating a sore tongue in the morning. Does she sleep with a hyumidifier at night? That helps me a little and I am thinking of getting another one and sleeping with two this winter when the air will be dryer. Also, she may want to try using the biotene gel or liquid--putting some in her mouth on the top of her tongue before she goes to sleep at night. I have found that helps as well. Also, if she tends to breathe with her mouth open when she sleeps, she may want to try those breathe-right nasal strips and see if that helps her since sleeping with one's mouth open can aggravate the dry/mouth and swollen painful tongue in the morning effect.

I know 12 weeks since IMRT seems like a long time but I am a year beyond that myself and I can tell you from this perspective that she still has a lot of healing to do and it will happen. Just very slowly sometimes! Hang in there, Michelle (and Mom)

Nelie

Thanks Nelie and Cathy for your responses.
My mother went to see her ENT today who did the surgery.
He looked in her mouth and said that she has an infection on her tongue. Fungal infection thrush.
My father told me he was very shocked to see it and said this looks bad and we need to get it cleared up. Gave her a swish and swallow and oral antifungal pill to take. He wants her to come back next week.

The infection is on the opposite side of the surgery(graft) side. It's more toward the back of her tongue.
Maybe this is why her tongue has been bothering her and she's been having a hard time taking some PO pills.
She was on steroids a few weeks back.
My sister suggested speech therapy to him and told him she is not eating real well and that she has a hard time speaking and he basically said that we need to get this infection cleard up first.
He said if it does not seem better in a few days to call his office.
I'm thinking what if it does not clear up what is he going to do, put her in the hospital???

Has anybody else experienced having this infection and any suggestions on how to prevent it from occuring again.

Thanks
Michelle

Go to the main site and look in the dental section for the complications page. Thrush, actually Candida albicans, is discussed there, and there are links to more pages about it. It is nothing serious to worry about, as long as it is treated early.