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Diagnosed with sarcoma? Let's share

Sarcoma | Last Active: 1 day ago | Replies (786)
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@ksnozal

Thanks for starting this Colleen. When I was diagnosed with my Sarcoma, there were only 29 diagnoses in the world, today it’s around 120, but that’s still a very small number. With the disease being so rare and new, we have limited data and treatment options.
The Sarcoma I have is Metastatic Gastrointestinal NeuroEctodermal Tumors. I posted a message about this disease a few weeks back to see if anyone else out there has it. It would be nice to be connected with other patients that have it or other Sarcoma survivors as well. Kris

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Replies to "Thanks for starting this Colleen. When I was diagnosed with my Sarcoma, there were only 29..."
skullbasecancer4 | @skullbasecancer4 | Feb 5 9:30am

Hi. My husband was diagnosed 27 years ago with a chondrosacroma of the skull had surgery and radiation but it returned this past year . He had surgery again but could
Not get it all because it was to close to curated artery and can’t do radiation and chemo . We just wait to see what happens next . It more aggressive this time . He is scanned every 6 months . We go to the the University of Miami for all treatment . Where do you go ? How do you feel? I have been trying to connect with other s, who had his type too, but it’s impossible. I wish you only the best and what type of treatment and or surgies have you had . He is 57 now .

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mpd1919 | @mpd1919 | Feb 13 8:44pm

I want to comment so I can come back to this post!
I stumbled across this post by my phone listening to me… I have a drs. Appt at the end of this month.

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