Synovial Sarcoma - Online Support Group

Seeking advice re: clinical trials


After having an initially impressive response to Yondelis (appx. 80% shrinkage in lung and pleural tumors! WOW!), my wife's latest CT shows that her tumors are growing again. She's being treated at Memorial Sloan-Kettering in NYC, and has essentially been offered two choices:

1. Phase II trial of oral gamma-secretase Notch inhibitor RO4929097 alone or with oral Hedgehog antagonist GDC-0449 (see http://clinicaltrials.gov/ct2/show/NCT01154452).

2. Gemzar + Taxotere.

As far as I can tell, neither is a very good option. The Notch/Hedgehog trial is very experimental, and there is no data with respect to Synovial Sarcoma specifically. This is our only opportunity to try those drugs, as my wife has reached the upper limit of the number of prior therapies she can try and still be eligible for the trial. It doesn't seem like research support Gem/Tax in Synovial Sarcoma, either.

I'm looking to my fellow group members for your collective advice. There must be other options we have not yet considered or that our doctors doesn't know about. If you have any thoughts or suggestions, please don't hesitate to share. We are willing to travel, pay out of pocket, stand on our heads... you know the drill.



Clinical trials for genomic

Why haven’t they suggested Votrient? There are 5 or so Anti-Angiogenic Drugs available that have had encouraging results. Good luck. My prayers are with you.


My wife tried Votrient for a few months in late 2010/early 2011. Her tumors were stable on Votrient for about 2 months. We tried supplementing Votrient with Sirolimus once Votrient alone failed, but this combo wasn’t successful either.