Anyone have experience with gastrointestinal stromal tumor (GIST)?

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.

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.

No I haven't discussed immunotherapy with my oncologist as I was told that Imatinib was my only choice of treatment. I am going along nicely at the moment and am happy with treatment. I have also had stage 3 melanoma and stage 3 breast cancer. GIST is stage 4.
I exercise with gym classes every
morning and walk. Going on my 3rd overseas trip in a year this week.

I was diagnosed in October 2000.
symptoms were only a 'lower
abdominal jelly belly feeling" no pain just discomfort. I had an 8cm tumour in the pelvis. At operation I was found to have metastasised with extensive deposits in the small bowel mesentery, pelvic peritoneum and rectum . Stained positive for Perls and negative for Schmorls. Immunochemically tumour ce4lls were strongly positive4 with c-Kit, DOG, CD34 and WT1.
I was started on Imatinib (Glivec) 400mg per day. My PET scan in
January this years was again clear.
I have a few small problems at the moment which my oncologist has ordered another PET scan in June (after overseas holiday)
I was deemed inoperable with just the Imatinib being my only treatment.
Hope this helps.

Surgery date tbd. The surgeon wants to make sure my lung cancer is stable for several months on maintenance Pemetrexid (every 6 weeks) which I just started. My oncologist did agree to start me on Gleevec though. *Has anyone been on both Gleevec and Tagrisso? I’ve also just started losing a TON of hair. I did cold capping with 4 cycles of Carboplatin + Pemetrexid and hardly lost any hair. I was told I no longer needed to cold cap with Pemetrexid only. But now I’m wondering if I should continue with cold capping. Or could it be the cumulative effect of chemo and daily Tagrisso?? *Did any of you notice worsening side effects or hair loss the further you got into treatment?

@mimicmckay, what a gut punch to find a second primary cancer as an incidental finding. When will you have surgery?

Yup that’s me also had my upper right lobe taken out 2-3 years ago lungs are cancer free so far. I’m a 3 time cancer survivor!!!

Thank you so much! My oncologist is recommending Gleevec but is checking to see if there is a contraindication to taking it with Tagrisso - targeted therapy for my liver by cancer - before I start.

Anyone here have lung cancer and a GIST?

I had a Gist removed about 9 years ago from my lower intestines was put on Imatnib (Gleevec) for
3 years. All was good until last year they found a small Gist on the exterior of my liver. Was put back on Imatnib
again, and was keeping it from growing my Oncologist suggested I double the dose but I refused because of the side effects would be brutal I opted for surgery to remove it. because of heart issues they didn't want to do surgery I opted for radiation treatments (cyber knife) and so far so good its shrinking away as it should! I will probably be on Imatnib for the rest of my life but if that's what it takes then so be it! my biggest advice is if they advise a scan do it! early detection is what saved my life 3 times! good luck!

Thank you for the tip to look up Life Raft. I was diagnosed with an esophageal GIST and met with a surgeon this week. The recommendation is an esophagectomy. I’m blown away. This was an incidental finding from my stage 4 lung cancer diagnosis, which was also an incidental finding. Good grief! Looking forward to hearing from this community.