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 
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…
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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.
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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.
A post was split to a new topic: I really don’t understand
Hi Sanne i haven’t seen you on here for a while, i hope you’re doing well and have had your lung mets removed successfully.
Hi Dadoona,
Thanks for your message.
Unfortunately i still have the lung (20spots) mets and one of them grew to 5cm. I am in contact with dr. Drewes from Coswog hospital in Germany. I am waiting for his answer.
Tomorrow i have a CT scan again
. we will see. My oncologist suggests chemo ifos again… i am in good fysical condotion.
Warm regards,
Sanne
Hi Sanne,
Thanks for your reply! Let us know what Dr Drewes thinks hoping he feels he can get at least some of the mets, the large one especially. Which procedure does he perform is it the laser surgery? Do you know if your original tumour was bisaphic or monophasic and if ssx1 or ssx2?
My partner recently got diagnosed with 7 lung mets in both lungs biggest is 8mm & vats surgery will be Friday to remove 6 from one lung & bit later the remaining one from other. After that we will see oncologist to discuss options im hoping a trial will be available depending on results of nodules testing. Would a clinical trial and/or immunotherapy be an option for you?
Hi Dadoona,
Did your husband already got back the test results?
I am on votrient at this moment and it seems to work. The big tumor in my lung reduced in size from 48mm to 43mm. The rest is stabil. This took 3 months to work.
I have 20 mets in my lungs which they don t want to operatie or radiate. Going to the oncologist right now and hear what he thinks. Dr. Drewes suggest lasee. I can send you the mail if you like?
I have monophasic ss. I guess ssx2 but i can look it up.
It started in 2015 when it was curative. 6 months later it spread. To lungs. Than i had doxo which worked for 6 months. Schrink from.8mm tot 4mm and than 6 months stabil. After that it grew from 4mm tot 16mm and some spots bigger…
I see a orthomoleculaire doctor. Do you know? I take a lot of supplements. Calcidiol (pre-vitamine d) seems to help with synoviosarcoma (pubmed), less grow. And also extra vit D.
Do you know the anlotinib trial? I hear good results for lyomyosarcoma. Schrink 90%!!!
If you want. My mail is ■■■■
Xxx Sanne