GIST (soft tissue sarcoma)

Hi Melly9e243b 

I am Steve, another of the community champions and my expereince of cancer is via my wife who has Leiomyosarcoma rather than GIST.

I noted your post had not picked up and replies yet so I thought it might be helpful to link you to other posts on GIST using the search tool here.

<<hugs>>

Steve

Hi

I was diagnosed with a 10×8 GIST in January 2024, was treated with Imatinib for just on 12 months. In January this year I had surgery which successfully removed the tumour, which had shrunk to 6×4. I'm still on the Imatinib until March 2027. Throughout the process I felt, mostly,  fine. Had the odd day of not feeling so great. But I went regularly to the gym, and the parkrun every Saturday, keeping active, I think, really helped. The treatment I've received throughout the process has been fabulous. The NHS truly at its best! So good luck with your own journey. Take care.

Hi, yes I’ve had surgery for mine, it was resected 1 month after it was found on endoscopy after I had to go to A&E with an upper GI bleed.

My tumour was 10x 8 cm at least. I’m told at the moment I won’t need Imatinib but will have more follow up. I feel gradually better every day since surgery.

• Thank you souch for this and I'll reply now

Thank you for your positive story.  I had my first 3 months scan a few weeks again and MY..GIST has shrunk 2cm , so good news. I still feel well and your post has cheered me so again thank yo for taking the time 

Thank you.for replying and I had first 3 months scan a few weeks ago.  Tumour has shrunk 2 cm so continuing with imatinnib until it gets to a size to remove by keyhole.  Hope your recovery continues and  against n thanks

Just to add , I did find it hard to navigate my way on the site so sending me the replies in this way has really helped.  Can your continue to do this.  Would be most grateful. Brenda