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Synovial Sarcoma - Online Support Group

Williams Cancer Institute


#21

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…


#22

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!!


#23

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


#24

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.


#25

you are in my prayers for a quick and permanent recovery


#26

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?


#27

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…


#28

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.


#29

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


#30

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


#31

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


#32

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


#33

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


#34

A post was split to a new topic: I really don’t understand