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Anyone have experience with gastrointestinal stromal tumor (GIST)?

Sarcoma | Last Active: 4 days ago | Replies (77)
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@tpaintercan

Hi,
I read your comment. I'm very new to this and still waiting for my biopsy results. I'm a 52 year old father in good health. But I have a mass 12cmx11cmx8cm in my stomach lining. It's been over a month since I found this out. Any day I'll get my result of my biopsy. I'm trying to stay positive. It is a probable GISTas the specialist said (after talking to me for 10 minutes). I believe my best case is to somehow shrink the tumour and then surgery to remove it. The issue is obviously the size. So, the chemo you chose was to shrink it? then how long was the recovery of surgery? Would you have any advice (please be brutally honest). Did you take any pain meds. Currently, the pain is constant and i take 2 tylenol every 6 hours.

Thanks for your time.
-Tim

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Replies to "Hi, I read your comment. I'm very new to this and still waiting for my biopsy..."
sharnell | @sharnell | Jul 22 1:06pm

Tim,
I'm sorry to hear about your stomach mass, probable GIST. It sure seems to be a long wait for diagnosis. The chemo drug to shrink the GIST is Imatinib, a pill taken by mouth. There is a lot of information online about it. You could research it there. So you wouldn't be sitting with an IV line in your arm. Don't panic...there is a lot to come, but try to take it step by step and find the best, most experienced team available. I am lucky to live in Seattle and had great care and outcome. My journey was about 16 mos from diagnosis to cancer free with CT scans at intervals for follow-up. Your journey will be different. Honestly, probably longer. It depends on so many variables and that's why you need an experienced team so badly. Someone to rely on who knows the answers to your questions and can map out a plan for you.
I don't know much about the stomach pain but your GP or the specialist that did your biopsy should be able to help you control it.
Tim, I hear you about waiting! All this seems to operate in slow motion. It's difficult when you want them to just get this thing outta-me! Have patience..keep busy, pray, meditate...start a project.
I'll listen, Sharon

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