Hello Everybody, I've been reading this site since June when I had a 8cm tumor removed from my trunk and a resection of my right lung. After 30 treatments of radiation I know have tumors again my pleura of my right lung. Chemo is to start next week with Adria/Ifex for 2 cycles and then CT scans to see if it is working. Needless to say my mind is whirling with how fast and aggressive it has come back. Does anyone else on this site have SS of the trunk? Has any one tried CBD or Hemp Oil?
One way you can find other people with the same location of tumor is by clicking on the tab "Members" then "Advanced Search" then under "Where was your Synovial Sarcoma located?", write down the location. There are a few members with synovial sarcoma located in the trunk. You can then look at their profile... But hopefully, somebody will also reply here.
14 years ago my tumor was next to and wrapped part way around my L4, L5 vertebrae. This time it was under my left kidney and partially embedded in my back muscle. I had successful surgeries for both, but now it's in my lungs. The first time around, I had surgery followed by radiation. Oh, and they diagnosed it as a different type of sarcoma, MPNST. This time they realized it was synovial. I had AIM chemo, then radiation, then surgery.
Now I'm on a vaccine trial for the lung Mets.
Sheryl
Where is the trial out of? We are looking in to one in Seattle.
I'm at SCCA with Dr Pollack.
Have you seen any results with the vaccine so far? We have been looking into that trial.
I won't know if it's working until I have scans in February. I'll report on this site what the results are.
After 2 rounds of doc/ifex no response and rumors have grown. Has anybody tried the cyber knife?
Taz, it's awful to find out that a horrible treatment was actually useless :-( I wish it could be predicted beforehand...
I know mary tried cyberknife. Her profile is here:
http://forum.synovialsarcomasurvivors.org/profile/mary756
As well as imaFighter91:
http://forum.synovialsarcomasurvivors.org/profile/imaFighter91
You may want to try to send them a personal message from their page...