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paolopp Offline OP
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hi Kirk, we have all now become more understanding of my brother's attitude, since I read about your feelings and those of others on this website..and explained to familly and friends...wish you all the best,and hope you had a wonderful Easter...thank you, paul

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Paul, The stretching he can do himself but remind him to be very gentle! If I go at it too hard spasms are the result. Let him know it can get better, Like Minnie I had limited range of motion, now I am much better. It does take time though.


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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paolopp Offline OP
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thanks Mark... I'm overwhelmed by the comments advice and help given by everyone...cant emphasise enough how useful this is!!..

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Hey all, thought I would chime in.
I did not have a full neck disection. I finished treatment in 2/04. My neck is still spasing and gets sore. My scar hurts a little, pretty much all the time. My neck seems to be getting fuller if you will. No lumps or bumps but the scar seems to have a little hill around it with a somewhat harder ledge. Scans and exams have yeilded little but laughter from my medical staff at UCH.
They are real belivers that this is gone for good as am I.

By anyway, it is an injury and will bother us for the rest of our long lives.

Take it easy.
Rob


SCC 1.6cm Right Tonsil 10/3/03, 1 Node 3cm, T1N2AM0, Tonsil Removed, Selective Neck Disection, 4 Wks Induction Chemo (Taxol,Cisplatin), 8 Weeks Chemo/Radiation (5FU,Hydroxyurea,Iressa), IMRT x 40, Treatment Complete 2/13/04.
41 Years Old At Diagnosis
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paolopp Offline OP
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hi Rob, you very lucky to have been able to make some folk smile...best way, well done and good luck

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You are welcome Paul, any time. Feel free to ask questions here anytime. There is always someone who has an opinion here. wink


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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Hey paolopp, I had my neck dissection last June and I'm still adjusting to it. I found physical therapy a major help. I stopped going a few months ago and really need to get back into it. It's my shoulder more than my neck that bothers me now -- it's sore and stiff, and I still don't have very good range of motion...

Interesting comments about your brother's mood swings. I've been pretty "angry at the world" of late and have really wondered why. I've never really felt like this before, and have also been "intolerent of other people's comments and opinions." Unfortunately, I have a boss now who has plenty and usually delivers them in a negative way. I've been close to "going off" on him a few times. In a strange way, I thank you for reminding me that maybe I've got some issues with own cancer experience that I need to deal with... May we both find some peace and rest in the midst of all of this... God be with you and your brother...


Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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paolopp Offline OP
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hello Az, so glad that we may have helped each other out with observation and comments/experience...everyone's comments have definitely helped my brother in such a short time,I guess knowing that others are experiencing your symptoms (which can be overcome) puts the mind at rest...take care and thank you

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Hi, Paolopp smile
This has been a good thread, as I am concerned about my husband's neck, too. His surgery (both sides of the neck) was 12/04; radition was finished the end of Oct. His jaw line and neck are so hard it is difficult to even kiss him there. One of the volunteers at the cancer center provided him with an exercise video that carries him through gentle stretches, etc. He is doing them faithfully since the doc cleared him to begin and at yesterday's check-up, both the volunteer (10 yr survivor) and the doc were pleased with his range of motion. It is still very limited, but coming along.
Hope things improve for your brother. I can't get Tom to take anti-depressants, and while he sometimes keeps his frustrations from causing anger flare-ups, he can't seem to keep them from causing the easy tears.
All the best!
Nicki


Nicki, wife of Thomas
dx July 2004, SCC, Stage 4 Tonsil. Tx begun 8/4/04. Cisplatin/Xeloda x 4; IMRT 7 wks, 8/7 - 10/25/04 Modified Radical Dissection (right), Selective Dissection (Left) 12/10/04.
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hi Nicki, must admit I didn't expect such a lot of input about the mental anguish, that is obviously as strong/important as the physical pain.Tears I think are good inhelping to release the build up of frustration, last weekend was particularly bad for my brother and he lost it in a big way,and I've never seen him cry such a lot and so,so deeply! However, we all held together and the next morning he was/is better than ever.His wife and children and my mother were so pleased. He even went to see my niece and her boyfriend to apologise for his harsh words to them both, shouting that started from some obscure trivial words! All in all it turned out ok!
Seems strange yet comforting that we can all share, even though thousands of miles separate us all, and even an ocean! ...thanks, paul

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