Synovial Sarcoma - Online Support Group

ACTolog IMA101


Hello, All! I hope this message is finding you well. My son had 4 biomarkers they were going to target in this trial at MD Anderson, but sadly he couldn’t qualify because he was too advanced at the time (less than 50% pulmonary functioning). It opened in August, and he passed in September. I wanted to pass it along to you all in case you have an interest. He was not NY-ESO-1 positive, but he wanted to participate in a t-cell trial so badly. :frowning:

Best wishes to you


Thank you for sharing! I am sorry your son couldn’t benefit from this. I know you did everything you could to save him. Big Hugs!



I am very sorry for you and your family. Loosing a son or a daughter is an imaginable loss.


ChrissyG, Can I ask you a few personal questions ? They may be hard to answer, but the information can greatly help me. I have Epithelioid Sarcoma, with multiple lung mets, and the NY-ESO is offered to me. Please email me ■■■■■■■■■■■■■■■■■■■■■■■■■■■


Of course you can! I don’t use this site often, so I will have to figure out how to message.


I figured it out. :slight_smile:


Thank you Elodie. It is really important to do the biopsy and screen early on and then do other treatment while the cells grow!! We learned that the hard way. :frowning:


Thank you Ricky. :broken_heart: He was an amazing kid. #forever19