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Anyone have experience with gastrointestinal stromal tumor (GIST)?

Sarcoma | Last Active: Nov 12 8:53pm | Replies (77)
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@sharnell

Hello friends! I was diagnosed with a 6-7" GIST tumor in November 2022. It was growing from the outer wall of my stomach. It was removed along with a slice of my stomach. There were no other sites but the biopsy was for a likely to recur fast growing tumor. I was started on Imitinab but had to stop after only 6 weeks with dangerous side effects. I am on no meds but follow with CT scans. NED so far but I am worried. Any one else similar?

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Replies to "Hello friends! I was diagnosed with a 6-7" GIST tumor in November 2022. It was growing..."
Colleen Young, Connect Director | @colleenyoung | Jun 21 2:07pm

@sharnell, NED (no evidence of disease) since early 2023 is great! But it is near impossible to shake the worry of recurrence. I'm tagging fellow GIST-ers like @ta52 @frygirl777 @cathych58 @smtoby @mermaid7272 to join the discussion again.

How often do you do follow-up appointments? What helps keep the fear of recurrence at bay or is it a constant companion?

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