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#111425 02-02-2010 12:41 AM
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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

caths #111431 02-02-2010 05:11 AM
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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).


Gary Allsebrook
***********************************
Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
Gary #111443 02-02-2010 08:30 AM
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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


Julieann
Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer smile
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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.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #111518 02-03-2010 02:32 AM
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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

caths #111526 02-03-2010 08:42 AM
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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


37/female dx:1/15/08 SSC patial glossectomy of tongue and 7 lyphm nodes removed...6 weeks of radiation...
Isa #111530 02-03-2010 09:10 AM
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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


6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
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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



37/female dx:1/15/08 SSC patial glossectomy of tongue and 7 lyphm nodes removed...6 weeks of radiation...
Isa #111595 02-03-2010 07:09 PM
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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.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #111606 02-03-2010 09:18 PM
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Did it help at all???


37/female dx:1/15/08 SSC patial glossectomy of tongue and 7 lyphm nodes removed...6 weeks of radiation...
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