What types of treatment are you having success with?


Hello all,

I am in the stage where I have tried AIM, Ifosfamide alone, and Gem/Tax. My Dr's next hope is for me to get into the Yondelis/Trabectedin trial. The aniti PD-1 MK3475 is closed at the moment, but he also stated that they are not having the success they would like to see with Synovial. Since this Synovial is quite a tricky bug, I was wondering what treatment are you having success with now for stability or shrinkage? Are you on oral drugs, trials, combinations? I am researching yet again, after coming to a point where I am losing stability again.

Any suggestions, comments, knowledge is welcome!

Thank you!




Hi Kim,
I did the AIM, Ifosfamide alone, and now have been on Votrient for 3 months. I just had a CT scan on Monday and all the nodules in my lungs are smaller and the two biggest ones are showing lucency in the center. I’m really excited about these results and hope I continue to have results like this. This sarcoma is so tricky. What works for one person may not work for the next. I hope your next treatment is the one that works for you.



My daughter was on Trabectedin for 8 months. I know someone on this site was on it for 5 years. Some drugs work for some and not for others. My daughter is currently on ifosfamide and we are trying to get her on the MK-3475 trial. I am sorry to hear you comment about MK-3475. Have you looked into NY-ESO related trials? All the best.


I am surprised to hear that the MK3475 trial is closed right now. Is this temporary or permanent?


Is the MK 3475 closed due to no more spots available or because of bad outcome? Also which state ID
S this trial are you talking about in? My boyfriend is on it in Ann Arbor and goes foe his 3rd infusion Wednesday.


Hi Kelly,

The trial has its full amount of participants. She did say however to call every few weeks to see if they are adding more participants. I’m confused about the “state ID S” trial. This is compassionate care usage of Trabectedin. Maybe your boyfriend is in the Ann Arbor location.


Do it fif you can! Trabectedin can have great results with minor side effects... . Like everything person dependent!