Anyone have experience with gastrointestinal stromal tumor (GIST)?

Hi everyone: My wife had a GIST tumor removed for the exterior of her stomach two years ago and this year they found that it had spread to her liver. She started out on Glivec 400mg per day and shortly after she started, her doctor switched her to a new drug Ayvakit that caused facial swelling almost immediately. She went almost two weeks off that medication and the swelling was showing signs of improvement and then her doctor put her back on Glivec. Three days into taking Glivec and the swelling began to come back. I'm concerned about the swelling and not completely gone and starting back on the Glivec too soon, but my wife is just as concerned about being off the medication too long just as much as she is concerned with the swelling. Also the Ayvakit caused her blood pressure to drop below the bottom 60 and three days after starting back on the Glivec her pressure dropped again. I don't know if she should wait a couple of weeks to allow the effects of that Ayvakit to wear off and then start back on the Glivec or not.

I’ve been on 200 mg daily dose of Gleevec for an esophageal GIST. I wasn’t tolerating the 300mg dose as originally prescribed (I am also on Tagrisso for lung cancer and my oncologist didn’t want me taking too much Gleevec). Within a few days of starting the 300 mg dose I developed significant periorbital swelling. It has subsided with time (and with a 200mg dose) but will occasionally come back but to a lesser degree. I was also having low platelets, WBCs and RBCs causing bloody noses, dizziness and low blood pressure with the 300 mg dose. I feel much better on the 200 mg dose and so far my swallowing issues have not returned and my PET scans show no GIST activity. My oncologist is in no hurry to up my dose. You may want to ask if a lower dose of Gleevec would be a possibility. I’m also trying to eat more red meat to help improve my bone marrow production (Gleevec suppresses it) as well as increase fluids to improve my blood pressure. That sounds counterintuitive because of the increased swelling but for me it was just in my face and not the extremities and my kidney fxn remains good. Increasing fluids worked for me. Good luck to you and your wife. Sending positive thoughts.