Anyone have experience with gastrointestinal stromal tumor (GIST)?

@arcay, good news that the tumors responded well to imatinib (Glivec). If you are looking for a second opinion with Mayo Clinic experts, you can start here: http://mayocl.in/1mtmR63

How are you doing?

Get in touch with liftRaft....they can help

I'm new to this. I starting having back pain last year around this time. And a I had a small mass in my chest . I had a physical scheduled for April and after too many errors by my doctor and his team the MRI was done in July. After that my PCP told me to get my affairs in order, but hadn't consulted an oncologist. Finally got the biopsy results in November and they said it was a GIST. I was in horrible pain then, the GIST has sent tumors to my spine (causing the back pain) and my chest as well as liver. I was put on Imatiniv and within 2 weeks I was seeing results. After the PETSCAN they said the good news was that the tumors hadn't done any damage to my organs, but that it;s incurable. I switched to a PPO to be able to go to whoever I choose. Live the LA area. Any suggestions for doctors would be appreciated.

I thought I had gist and I found the life raft group who were wonderful holding me together those three weeks waiting for my pathology report. I turned out to have r-lms. I have since found my LMS group but they aren't near as organized with the support found in the liferaft group.

The Life Raft Group
The Life Raft Group is committed to enhancing the survival and quality of life for people living with Gastrointestinal Stromal Tumor (GIST), and other rare ...

I was diagnosed with a duodenal GIST in April 2021 and had surgery in August of the same year. The tumor (about 11 cm) was removed and there were clear margins. I have been scanned every three months since and there is no sign to date of a return. My suggestion would be to not wait on the surgery. The earlier they get to it the better.

Welcome, @sale. I believe fellow members @cathych58 @suzystation @ta52 have experience with GIST in the duodenum.

Sale, did you have surgery yet? How is recovery going?

I have a Gist in duodenum. Does anyone have any experience with surgery in that area?

Perhaps a rare case from Hong Kong.I was diagnosed with rectal GIST (measuring 6.8x7.4x8.9 cm) between rectum and prostate in Jan 2024. Then I started Imatinib 400 mg daily from public hospital in mid March. Found to have heart failure with cardiac function LVEF of only 29 % after one month. They stopped the target drug and started the heart medication. In mid August with the LVEF figure returning to normal of 65%, I turned to private oncologist for half dosage of Imatinib ie 200mg daily. After one month half dosage the heart figure still kept well above 60%. Then fluctuate between 50 and 60% afterwards. And recent MRI in Nov showed significant shrink (4.1x4.6x5.7cm). The oncologists of the public hospital kept telling me that I was too brave. Will redo the Echocardiogram soon. Hope for the best. And pray 🙏

Welcome, @littleman. Have you been diagnosed with gastrointestinal stromal tumor (GIST)?

Hello, I am new here.