Dear all,

My partner finished treatment for stage 4 tonsil cancer (no neck dissection just radio and chemo) Nov 14 2008. He then made quite a rapid recovery and didnt seems to suffer as much pain as others have reported. However since Christmas he seems to be suffering nagging discomfort in his neck and the back of his head in the evenings. Did any of you have radio side effects that came on quite late? He also says he gets a nagging bruised sort of feeling around the tonsil area that got the highest dose on and off. Do any of you experience anything like that.

Thanks, I have been working away from home for a while and when I got home to hear he was suffering little niggles it worried me somewhat although I am sure it could just be the usual radio effects thing.

Thanks
Cathy

Yes. The onset of fibrosis, in the neck muscles, in the radiated field area took about 2 years to develop post Tx. I have spasms in my neck resembling a severe charlie horse. My swallowing isn't perfect either and I think that I slur certain words.
I tried PT but Valium works the best. From others I have talked to this is typical and I was warned ahead of time, by the radiation oncologist, that there would be "some texturing of the muscles" due to the RT. I also have Codiene if the spasm is especially severe (which isn't that often).

Hi Cathy:

I had the same thing happen to me (discomfort in my neck and the back of my head in the evenings) starting about 2 wks. ago. I had my 6-month PET scan a week or so before that with everything showing Normal (Thank GOD), but wondered about the sudden pain. ENT doctor checked out the area and said it was probably muscle pain and not to worry, yeah, right. Anyway, it's been 2 years since my treatments ended, and I still have nasty side effects. I had excessive mucus during and following my treatments for about 6 months; then they stopped. Now, since about 6 months ago, I have more mucus and swallowing problems than ever. So, I guess some of us will have continuing problems from our treaments. Hopefully, as bad as they are, that will be all we have.
Julieann

I still have those problems with hte mucous and aches. I do at least 120 arms stregthen exercises a day and my legs really need them. I am not permitted to do any strenuos exercise for them until this aneursym is finsihed on the lower end because the strain might blow the aneurysm. Any Ideas? They hurt bad not having any muscle and it makes it hard to walk.. Mowing grass will help.

Thanks all guess the neck pain is par for the course, but still a bit concerned about this bruised or pinched feeling he has been having just under his submandibular. He has a regular check up today, but I never find them particularly reassuring. Wish PET scans were part of the regular package here.
Cath

Hi about 6months ago I had a little sore on the roof of my mouth,it is right above the spot on my tongue that had cancer. I showed it to the doctors they said not to worry it was probaly a side affect of radiation that I probaly ate something sharp or hot, that will go away.
The sore has become the size of the tip of finger now and the bone is coming out, Now my ent and rd doctor says that have to go to an oral surgeon and get hybaric oxygen.

Can someone tell me more or less what is coming to me???
Isabel

Isabel,
If any surgery is needed in a radiation site, you will typically be prescribed sessions in a HBO chamber. I had a lower left molar extracted that was directly in the line of fire, so spent 30 x's 2hours in the chamber. Other than the time spent, it is not a big issue. My chamber was a single tube. I brought a movie each time to pass the time. Hope you're good at clearing your ears.
All the best,
Rob

Thanks Rob,
What side effects did you get from the hbo treatments? The bone in my mouth is sicking out is moving, I just feel like pulling it out...Its so bothersome....grrrhh

The BO is suppoosed to help reconnect some blood vessels. I was taking it for dead bone and they wanted to see if the HBO would grow new vessels to cnnect the 2 sides with a fresh blood supply.

Did it help at all???

Sorry to hear about your situatio ISa and hop it improves.

Well the ENT consultant has decided to give Chaz and MRI just in case. Must say I feel really worried rather than reassured as it is so unusual in UK the consultants behaviour during the consultation somewhat freaked me out. He has very strange inter personal behaviour and by trying to be reassuring, really worries me.

I feel cross that I didn't push for a PET/CT as they seem to be more reliable, but most of all I am furious that Chaz over the last 6 months Chaz has had a CT of his sinus area and an ultra sound of his neck to investogae various discomfort and aches and pains. It would have been so much quicker and potentially more effective to have given him and all over scan in the first place.

GRRR!