1. < Sarcoma

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.

Mentor
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)
@molavica

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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Mentor
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)
@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)
@molavica

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)
@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
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)
@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
avidthinker | @avidthinker | Oct 30, 2022

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

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 30, 2022
In reply to @avidthinker "Thank you for sharing the link, will be surely helpful for me as I'm still new..." + (show)
@avidthinker

Thank you for sharing the link, will be surely helpful for me as I'm still new to GIST and still thinking about doing surgery or not.

Jump to this post

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.

REPLY
1 reply
avidthinker | @avidthinker | Oct 30, 2022
In reply to @hopeful33250 "Hello @shannona and welcome to Connect. I see that you recently posted about GIST tumors in..." + (show)
@hopeful33250

Hello @shannona and welcome to Connect. I see that you recently posted about GIST tumors in your pelvis and omentum. I am sure that you are glad that your tumors appear to be shrinking.

You are asking some good questions about immunotherapy. As I looked for other members with cancer in the area of the pelvis and omentum, I see that many are members in the area of gynecological cancers. Was the cancer in your pelvis a gynecological cancer as well?

I did look for some information on GIST tumors and immunotherapy and found information on the National Institute of Health website:

--Current Status of Immunotherapy for Gastrointestinal Stomal Tumors
https://pubmed.ncbi.nlm.nih.gov/28186088/
Have you discussed the option of immunotherapy with your oncology team?

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Thank you for sharing the link, will be surely helpful for me as I'm still new to GIST and still thinking about doing surgery or not.

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1 reply
kali1111 | @kali1111 | Oct 29, 2022

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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1 reply
Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Oct 29, 2022
In reply to @shannona "I was diagnosed 6 months ago with stage IV GIST tumors in my pelvis and omentum...." + (show)
@shannona

I was diagnosed 6 months ago with stage IV GIST tumors in my pelvis and omentum. I am 53, otherwise healthy and on Imatinib and the tumors appear to be shrinking. My question is, is there no immunotherapy available? It seems like for all the clinical trials, you have to have been on Imatinib or others for years and it no longer works. By that time, I would think, a person may have kidney, liver, or heart problems and years of a decreased quality of life.

Jump to this post

Hello @shannona and welcome to Connect. I see that you recently posted about GIST tumors in your pelvis and omentum. I am sure that you are glad that your tumors appear to be shrinking.

You are asking some good questions about immunotherapy. As I looked for other members with cancer in the area of the pelvis and omentum, I see that many are members in the area of gynecological cancers. Was the cancer in your pelvis a gynecological cancer as well?

I did look for some information on GIST tumors and immunotherapy and found information on the National Institute of Health website:

--Current Status of Immunotherapy for Gastrointestinal Stomal Tumors
https://pubmed.ncbi.nlm.nih.gov/28186088/
Have you discussed the option of immunotherapy with your oncology team?

REPLY
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