Anyone have experience with gastrointestinal stromal tumor (GIST)?

Posted by fredkj @fredkj, Oct 11, 2022

Is there anyone in the group has any info on this issue. Have some been through this are know anyone who has that can have any helping info

Interested in more discussions like this? Go to the Sarcoma Support Group.

@gsl18

Hello everyone. I have been diagnosed with a 6cm Gist located on the lesser curvature of my stomach. I have been told the the treatment is surgery. Is there any other options that make sense?

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I also had a 6cm Gist tumor from the greater curve of my stomach. It was about 2.5 yrs ago. I had a very experienced team that removed it. They contained it entirely along with a small sliver of stomach where it originated. Also they were able to check for any other tumor sites and a few neg. lymph nodes. I am now followed by an Oncologist and have scheduled CT scans.
My non-surgery choice was daily oral chemo (Iminitab) for the rest of my life or until it became ineffective, when I would need surgery anyway. This has been my journey but yours will be your own. I only suggest you find the most experienced team of doctors possible.
Feel free to chat with me. I'm here, I care! Sharon

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@colleenyoung

Welcome @fredkj. I'm tagging a few other members like @ta52 @kakb @anxious4nothing @amyj2022 who have experience with gastrointestinal stromal tumors (GIST).

While we wait for other to chime in, can you share a bit more about yourself? Have you recently been diagnosed with GIST? What treatment(s) will you or are you having? How are you doing?

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Hello everyone. I have been diagnosed with a 6cm Gist located on the lesser curvature of my stomach. I have been told the the treatment is surgery. Is there any other options that make sense?

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@avidthinker

Hello all,
I've had a CT scan of the whole abdomen last month because of a pulsating rhythm in my stomach. They found a large mass lesion of 8.8x9.9 x 10cm by size and said it's a possible GIST.

I'm now going to try Immunotherapy hoping it will shrink before going for surgery.

Hope we can all help each other by sharing our experiences here.

Thank you.

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Hola buenas noches
Te agradeceré compartir tu experiencia con la inmunoterapia.
Gracias Juan

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@ta52

I guess I would ask how they were able to determine from an autopsy that a recurring fast grow tumor was likely?
My nine-and-a-half hour GIST removal was nearly three years ago. I have a CT scan every three months and so far so good. I guess I would also ask how it got to a point where it was 6 - 7 inches. That seems huge to me.

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OK Tom, you caught my error....it was centimeters, still considered large by NIH standards. BTW, they only do autopsys on dead people. NOT there yet! The tissue is sent to a lab and examined by microscopy to count the number of tumor cells in a section per high power field. That determines how fast it is growing, mine had a lot.

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@colleenyoung

@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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Yes, I have a constant worry but it hides in a shadow in my brain and pounces every now and then. My gut surgeon said the average life expection is 5 years, especially without Imitinab. I have heard of some people that live much longer in similar. Are they just lucky?

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@colleenyoung

@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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I guess I would ask how they were able to determine from an autopsy that a recurring fast grow tumor was likely?
My nine-and-a-half hour GIST removal was nearly three years ago. I have a CT scan every three months and so far so good. I guess I would also ask how it got to a point where it was 6 - 7 inches. That seems huge to me.

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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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@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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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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@smtoby

Anyone have GIST? Just trying to find others

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I had a small GIST removed from my duodenum in August 2021 and have had no recurrence. As part of the process I am scanned every three months at Mayo Clinic and, to date, there isn't even a hint of any issues.

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@smtoby

Anyone have GIST? Just trying to find others

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Welcome, @smtoby. I moved your message about searching for other members who live with gastrointestinal stromal tumor (GIST) to this existing discussion:

- Anyone have experience with gastrointestinal stromal tumor (GIST)? https://connect.mayoclinic.org/discussion/gist-cancer/

I did this so that you can read previous messages and easily connect with other GIST members like @mermaid7272 @anxious4nothing @tara58 @kakb @lisaikwang @umberta @fredkj @avidthinker @seracut @shannona @milesboysen @mizamymac @chayatexas @ta52 @martiy @cathych58 and others.

Toby, is this a recent diagnosis for you? How are you doing?

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