Hi all,I have been suffering a fast onset trismus (lock jaw ) 4 months post surgery- base of tongue tumor removal. I went in to hospital for the results of a CT scan of my neck and face and the surgeon admitted me for more tests. Long story short I was in for 10 days, Turns out no infection or just inflamation to my jaw, face etc but a fine needle biopsy confirmed SCC cells throughout my neck face etc that helps explain the lockjaw (trismus) I have been getting. Pain meds up and stretching has helped Trismus but the big one is the cancer is back instead. Scans show nothing visible in the lungs or liver so that is good news the bad is the cancer is back! I have to have a PET scan to confirm nothing is any where else but the bottom line at the moment is surgery and radiation is out so they are thinking of hitting me with multi drug chemo I guess to hurt the cancer cells before they lodge in my lungs and form a tumor or liver the same.

They are all in agreeance that this is serious due to how agresive SCC is so I have quite work as the jaw pain with speach alone made working just a few hours impossible anyway so I would rather quite work to focuss on living not dying as they are open that this could mean a 1-2 year survival rate so living and researching my options is what I want to do.

I have my appointment tomorrow with medical oncology to find out what they want or dont want to do so I will know more in a day but maybe some one could help with a couple of questions. Any idea of what drugs and outcomes may be the goal in this situation? Is doing no chemo an option??? I dont want to be stupid and refuse chemo but I do have some fears.


Her is a big one to , I have a fragile optic nerve in both eyes and I am not prepered to risk going blind for the rest of my time and I know some chemo drugs can hurt the optic nerve hard along with hearing to. I am very scared that any chemo could send me blind. Has anyone else knowledge in this area? I know this post is a bit anxiouse but thats because I am still a bit in shock I think.
Thanks
Tone

lyph node positive 10/08
Parotodectomy 4/09
Rad six wks 65 grey
Pet scan clear 03/10 no primary
Pet 01/10 base tonge primary
CT 3.5 Tumor 01/2010
radical tongue reconstruction
with forearm flap 2/10
severe Trismus 06/10