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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.

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Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 11, 2022
In reply to @mizamymac "How do I find gistlistserve? I have been newly diagnosed, biopsy confirmed GIST. PET scan next..." + (show)
Profile picture for mizamymac @mizamymac

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

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

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mizamymac | @mizamymac | Dec 3, 2022
In reply to @kali1111 "Look into joining the GIST Support International ( gistlistserv) There is an online support group with..." + (show)
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Look into joining the GIST Support International ( gistlistserv)
There is an online support group with a wealth of information and support for patients ,caregivers and families. It has been a lifeline for a dear friend when newly diagnosed Most important is to have a specialist that specializes in GIST and to seek second opinion if you are not comfortable with your current medical provider.

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

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2 replies
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milesboysen | @milesboysen | Nov 19, 2022

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.

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Teresa, Volunteer Mentor | @hopeful33250 | Nov 12, 2022
In reply to @molavica "Mine was larger than yours and they removed it (ended up in ER). Currently (3 mo..." + (show)
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Mine was larger than yours and they removed it (ended up in ER). Currently (3 mo later) on Imatinib and doing great.

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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?

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Teresa, Volunteer Mentor | @hopeful33250 | Nov 12, 2022
In reply to @avidthinker "Thank you for the warm welcome, will post more once there are changes and improvements after..." + (show)
Profile picture for avidthinker @avidthinker

Thank you for the warm welcome, will post more once there are changes and improvements after a month.

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

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avidthinker | @avidthinker | Nov 11, 2022
In reply to @molavica "Mine was larger than yours and they removed it (ended up in ER). Currently (3 mo..." + (show)
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Mine was larger than yours and they removed it (ended up in ER). Currently (3 mo later) on Imatinib and doing great.

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

Thanks for sharing.

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avidthinker | @avidthinker | Nov 11, 2022
In reply to @hopeful33250 "Hello @avidthinker and welcome to Mayo Connect. I appreciate you joining this discussion on GIST. I..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

Hello @avidthinker and welcome to Mayo Connect. I appreciate you joining this discussion on GIST. I so like what you said in your second post about how important it is to have "a specialist that specializes in GIST and to seek second opinion if you are not comfortable with your current medical provider." Those are some important guidelines that can help you advocate for yourself when you have a health issue, especially if it is rare.

You mentioned that you are considering surgery. Does this indicate that a physician has recommended surgery at this time?

Are you comfortable sharing more about your journey with GIST? If so, please share what your symptoms were and how this was diagnosed.

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Thank you for the warm welcome, will post more once there are changes and improvements after a month.

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1 reply
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molavica | @molavica | Nov 11, 2022
In reply to @avidthinker "Hello all, I've had a CT scan of the whole abdomen last month because of a..." + (show)
Profile picture for avidthinker @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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Mine was larger than yours and they removed it (ended up in ER). Currently (3 mo later) on Imatinib and doing great.

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3 replies
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avidthinker | @avidthinker | Oct 30, 2022

Yes, I've already registered there. Thank you again for sharing! 👍🙌🙏

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