Connect
Anyone have experience with gastrointestinal stromal tumor (GIST)?
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
Like
Helpful
HugInterested in more discussions like this? Go to the Sarcoma Support Group.
Connect
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 ...
-
Like -
Helpful -
Hug
1 ReactionI 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.
-
Like -
Helpful -
Hug
1 ReactionWelcome, @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 🙏
-
Like -
Helpful -
Hug
1 ReactionWelcome, @littleman. Have you been diagnosed with gastrointestinal stromal tumor (GIST)?
Hello, I am new here.
Yes I did but not as bad it also would mess with my stomach a bit.
-
Like -
Helpful -
Hug
1 Reaction@lidycj51, that's quite a journey with cancer and a list of successful treatments. What a testimony that with 70 years, you're still working a physically demanding job.
You mention that you were on Imatinib back in 2012 for 3 years, but that you're dreading starting it again as a maintenance treatment. I get that. Did you have side effects on the drug back when you took it in 2012? When do you start it again?
Hi I'm sorry to here about your Huband's diagnoses, I'm on 400 MG of imatinib and my worst problem is hand and leg cramps that are so bad that they wake me from a deep sleep in agony!
I do have some dry mouth at night but keep fresh cold water to sip bed side. I'm told that the Imatinib is keeping the tumors from developing so i will continue taking it hoping my body will adjust.Hope this helps , good luck!