Synovial Sarcoma - Online Support Group

Williams Cancer Institute


Just an update. My biopsy showed the new mass is synovial sarcoma. The plan is to either remove the whole left lung or do radiation therapy. I had a VQ scan that showed my left lung only contributes 12 % to my breathing. I will have a pulmonary function test this week to check if I can afford to loose those 12 % or not…


Hi Elodie,

Thank you for the update. I am sure you will make the right decision and it will work out. Many people have a long live with one lung and you are for sure a fighter!!


You are in our prayers. You will definitely fight this one easily :blush:


Odds of a successful surgery are in your favor with a 3.9cm mass. So thats one thing in your favor. Another is most good centers, work with Washington Hospital that just completed some phase II trials of some new translocation-associated sarcomas epigenetic agents - finally some targeted therapy. Of course the best thing you have going for you is YOU.


you are in my prayers for a quick and permanent recovery


Hi Elodie
So sorry to hear the latest - it’s just so unfair you’ve been through so much already.
Do you know if you could also have the option to combine whatever treatment is decided upon with an immunotherapy drug?


Immunotherapy may come later but for now this is not an option that was given to me. Apparently since I am coughing up blood, there is some urgency to handle this with either radiation or surgery…


Hi Elodie, I have not heard from you in a while. I hope that you are recovering from the surgery. My prayers are with you.


Sorry to deliver sad news, Elodie passed away - http://bit.do/Elodie


How very sorry to hear this. She was a hope and inspiration to so many


Elodie will be greatly missed on this community, as she will be by her family, friends and by her many contacts here at Ben’s Friends. A more complete tribute to Elodie, and her energy and commitment to this community will follow.

Seenie from Moderator Support


Im totally shocked and devastated. Thoughts are with family and all who loved Elodie.


I can not tell you how sorry I am. What a lost… Sending love to her family and dear ones.


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