Synovial Sarcoma - Online Patient Support Group

Results of the International Collaborative Study on Synovial Sarcoma

The Liddy Shriver Sarcoma Initiative funded an International Collaborative Study on synovial sarcoma 2 years ago and the results were just published here (see tab “Study Report”):

Hi Elodie - thanks for posting this information. I always have a hard time taking these types of published documents and narrowing them down to what I can take away from them to improve my abilities to identify the best options for keeping my daughters disease in control. Really wish we had an oncologist(s) involved with this site. Thanks again for all the work you do for this community.

Thanks Trish :slight_smile: What treatment is your daughter doing now?

Hi Elodie - good morning. My daughter is trying Entrectinib at CHOP in Philadelphia. She just finished her first cycle about two weeks ago. She will get a scan after the second cycle. All the best. Trish

Thanks Trish for sharing! Good luck with the scan!

I’m very sorry to hear entrectinib was an option for you and didn’t work. Ugh I thought for sure this drug was a breakthrough one. Was she tested for it prior? My doctor says if the gene testing comes out positive then it has an 80% chance of working. Praying for more options❤️