Synovial Sarcoma Treatments

Synovial Sarcoma Survivors - Online Patient Support Group

TBI-1301 (NY-ESO-1 targeting T-cell Trial)

Canada is getting ready to get its own engineered T-cell trial targeting NY-ESO-1:

Interesting, it looks a lot like Adaptimmune’s clinical trial. It also requires the ny-eso and hla markers, so many won’t qualify for this clinical.

I really feel there is a lot of potential for this type of treatment… I just wish more people had those two markers…

Elodie, we were informed of my daughter’s path results today (more than 3 weeks after the needle biopsy). They were positive, as we feared. Even worse, we found out that the chest CT scan which preceded the biopsy showed more lesions in the lung than she was told about initially. She found all this out today from her lung surgeon, who now recommends removing the whole lung as soon as possible. He would do scans first and if the cancer has spread beyond the lung, surgery would not be an option. However, he is not a sarcoma specialist. Tomorrow, she sees her oncologist and will get his recommendations, though her faith in him is shaken.

For the past few weeks, we’ve been making contacts & researching clinical trials like the one above, but would need HLA testing, etc. to see if she would even qualify. We are hoping she can get a consult with MD Anderson before having to decide about surgery.

Do you know of anyone with synovial sarcoma who has had a pneumonectomy with a good outcome, and who might be willing to share their experience?

I do know of one person who survived metastatic synovial sarcoma and has been in remission for more than 10 years following a lobectomy. You can find his website here:
I don’t know anybody who had a total pneumonectomy though. To me, it looks like surgery gives the highest chance of survival. It’s tempting to take the risk…