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
Interested in more discussions like this? Go to the Sarcoma Support Group.
My husband has recently diagnosed w GIST and also bladder cancer, the 2 being not related cancers.
For GIST he is on avapritinib chemo
pills 300 mg daily. He is having a few side effects but the worst is sour mouth and throat. Any advice will be appreciated on how to handle this uncomfortable side effect. Thanks
Hello @poppycares and welcome to Mayo Connect. I'm glad that you found this forum where you can share your experiences with others.
As your husband also has bladder cancer, here is another discussion group that might be helpful to you,
--Bladder Cancer
https://connect.mayoclinic.org/group/bladder-cancer/
While you wait for others to respond to your post about the side effects of chemo, I'm wondering if you have discussed this with his oncologist. Oncology offices often can suggest remedies that will help lessen the side effects and make them more manageable.
Here is some information from the WebMD website about the side effects of this medication. If you read the section about Common Side Effects, it lists bad unpleasant after taste as the first common side effect.
--Avapritinib side effects
https://www.drugs.com/sfx/avapritinib-side-effects.html
Has your husband had any surgeries for cancer, or has chemo been the main treatment?
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!
@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?
Yes I did but not as bad it also would mess with my stomach a bit.
Hello, I am new here.
Welcome, @littleman. Have you been diagnosed with gastrointestinal stromal tumor (GIST)?
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 🙏