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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

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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Replies to "Tim, I'm sorry to hear about your stomach mass, probable GIST. It sure seems to be..."
tpaintercan | @tpaintercan | Jul 22 2:07pm

Thanks Sharon,
I feel a little bit left in the dark. Personally, I think our canadian medical system is stretched to the breaking point. It took me multiple daily trips to the ER and over 40 hours of waiting to get to this point. I still have not talked to my family doctor as she has passed it off to my specialist. I wish I had the knowledge of building a medical team. Not even sure it's possible in Canada to choose. I have a specialist but i talked to him before the endoscopy and said I would get results in 3 days, it's been 10 days and still waiting, this is after a failed endoscopy which took 2 weeks. A friend who is a nurse told me if it ends up being cancer, I should pay to go the US, she has seen the wait times to be too long in canada. I'm in Vancouver and it's only a couple hours to Seattle but I wouldn't know how to begin to plan that out. Plus, the cost would probably prohibitive.
Anyway, thanks for listening, sometimes I just need to put my thoughts down.

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