Debbie, my son was diagnosed with stage 4 synovial sarcoma with metastasis to the lung 15 years ago. He was 18 yrs old when diagnosed. We lived in Florida at the time, but we’re told to go up to Memorial Sloane Kettering. He was put in a trial, and miraculously after 9 months of chemo, surgeries and radiation he was cancer free. Never stop fighting, and never forget the “power of prayer”. I’ll be praying for you!
What was the trial?
Thanks for posting this. It will give hope to many....
Yes! Please share more details with us regarding his treatment. I am at MD Anderson but may switch to MSK
NOTHING is greater than the power of prayer.
Love to hear about your success!! Your story inspires me in my fight. Never stop fighting - never give up!
Thank you so much for your kind and encouraging words! It means so much to me! I do know that God is good and I am already meeting some wonderful people that are teaching me beautiful things about the human spirit. God Bless you! Debbie.
My daughter has an amazing circle of support, most of whom pray for her. I believe this support has kept her will strong to survive against all odds. (Stage 4, synovial numerous tumors.) Recently she has been referred to the Dana Farber Cancer Institute in Boston. Dr. George Demetri, there, is supposed to be the world's top sarcoma specialist. The institute is supposed to be the top research and treatment center for sarcomas. My daughter heads to Boston for their cellular genetic testing and to check out clinical trials they have going. Has anyone in this network been there and worked with Dr. George Demetri?
I am going to reach out to Timothy’s Nurse Practitioner and see if she remembers his trial. I’ll post as soon as I obtain that info!
My impression is that Dr. Demetri mostly deals with GIST patients. GIST is another type of sarcoma for which a targeted therapy was found about a decade ago, that improved survival significantly (Gleevec). Dr. Demetri was involved in the research and has continued to be involved in the research to treat gleevec-resistant GIST. For that reason, I doubt that he sees a lot of synovial sarcoma patients... On the other hand, I am sure Dana Farber has other very good oncologists.
David Mallin said:
My daughter has an amazing circle of support, most of whom pray for her. I believe this support has kept her will strong to survive against all odds. (Stage 4, synovial numerous tumors.) Recently she has been referred to the Dana Farber Cancer Institute in Boston. Dr. George Demetri, there, is supposed to be the world's top sarcoma specialist. The institute is supposed to be the top research and treatment center for sarcomas. My daughter heads to Boston for their cellular genetic testing and to check out clinical trials they have going. Has anyone in this network been there and worked with Dr. George Demetri?
So Sorry about the delayed info on the trial Timothy was involved in 15 yrs ago. I contacted his Nurse Practitioner and she wrote back Cytoxan Doxorubicin, Vincristine, and possibly Ifosfamide and Etoposide. Hope this helps!!!- Laura
I needed to see this post. Thank you for sharing as my son is in this position right now.