Anyone have experience with gastrointestinal stromal tumor (GIST)?

Hello All,
I have had GIST for 6 years now.
Diagnosed in 2017 with metastatic disease to my liver. Mets continue to grow.
Primary tumor is in the 2nd portion of of my duodenum and I just keep changing meds to somewhat continue to carry on.
Some days I feel normal other days not as much. My suggestion is to try and find a purpose that inspires passion in yourself and keep on pushing.

I can imagine you feel a bit lost. Hopefully you'll be celebrating the holidays with family to help pass the time more quickly until you meet with the surgeon.

If you wish to seek a second opinion at Mayo Clinic, you'll find all the info you need to get started here: http://mayocl.in/1mtmR63

Have you started writing down your questions? What will you ask your doc?

Thank you for asking. PET scan was 7 days ago. I am have an appointment with surgeon in about 3 weeks.
I feel kind of lost. The test results are posted to my account, but that does not mean I don’t have lots of questions. I would go somewhere for another opinion, but have no idea how to do that.
As far as I can tell from reading my PET scan, my GIST has not metastasized and may be on my stomach. Doc here said that the PET would show the size, but I can’t find that on the report.

Welcome @mizamymac. How did the PET scan go? How are you doing?

https://www.gistsupport.org/gsi-community/join-our-gist-community/

How do I find gistlistserve? I have been newly diagnosed, biopsy confirmed GIST. PET scan next week.

I have been diagnosed with GIST this week. Fortunately appears to be arising from the abdominal wall rather than an organ. I have little information at this point. It's 14.6 x 12.0 x 16.8 cm upper left quadrant. I'm looking to plug in somewhere for this journey.

Hello @molavica and welcome to Mayo Clinic Connect. I am glad you joined this discussion group and I'm also glad to hear that you are doing better on Imatinib. It sounds as if your surgery to remove the tumor was also successful.

You said that you went to the ER. Was the surgery done after a CT scan or MRI that was done in the ER? What type of symptoms were you having at that time?

I look forward to hearing from you again, @avidthinker. Are you trying any new treatments that might show improvements in the next month?

That's great to know. I hope and pray you continue to heal and move on with a normal lifestyle.

Thanks for sharing.