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.

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

REPLY
@poppycares

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

Jump to this post

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?

REPLY
@poppycares

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

Jump to this post

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!

REPLY
@lidycj51

I had A Gist removed from my lower small intestines back in 2012 was on Imatinib for 3 years. was fine and free until 2021 and got lung cancer, had upper right lobe removed no after treatment and was cancer free until now.
yearly scan showed another Gist showed up on my liver. I had 5 high does pinpoint radiation and they got it! I will probably be on Imatinib for the rest of my life which I dread! I just turned 70 a Masonry contractor and still working! I thank god every day for my life but I don't know if I can take much more of this.

Jump to this post

@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?

REPLY
@colleenyoung

@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?

Jump to this post

Yes I did but not as bad it also would mess with my stomach a bit.

REPLY
@littleman

Hello, I am new here.

Jump to this post

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

REPLY
Please sign in or register to post a reply.