Hello, thank you so much for sharing your knowledge with all of us. It gave me such hope. I was diagnosed 2015 with an 8 cm tumor in my hamstring. Did AI chemo and radiation + surgery. Local recurrence Nov 20-6. Surgery and then surveillance since. Dec 2017 two lung nodules appeared. I had VATS to left side. Most recent scan showed add’l nodules (2) and growth in the original nodule on the right side. I started the omega 3 protocol and keto several weeks back. I had s consult at MSK last week. Recommendation was pazopanib. My molecular testing indicated my tumor was MSI-high but low tumor mutation burden. I’m having a hard time deciding on next steps. Keytruda’s track record for synovial sarcoma isn’t proven as far as I can tell. Pazopanib’s is but I also like the idea of considering immunotherapy up front when there is less tumor burden in general. Any thoughts? I have the SYT-SX2 mutation.
We're so sorry you are fighting synovial sarcoma mets. We know the choices ahead are very difficult.
To explain our thinking about treatment decisions - targeted therapy vs immunotherapy, we'd like to direct you to our book, as we explain and build up the science and nuances that we had to consider. We found we could not explain it fully through conversations, so we took 2 years to write our book.
Regarding Pazopanib - we know a synovial sarcoma patient who passed away from bleeding in the brain - not due to tumor growth, but from the side effect of Pazopanib.
Wishing you the very best!
Rene and Eddy