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.

trishdickings | @trishdickings | May 17 6:40pm

In reply to @hopeful33250 "Hello @shannona and welcome to Connect. I see that you recently posted about GIST tumors in..." + (show)

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.

trishdickings | @trishdickings | May 17 6:31pm

In reply to @colleenyoung "Welcome @fredkj. I'm tagging a few other members like @ta52 @kakb @anxious4nothing @amyj2022 who have experience..." + (show)

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.

mimicmckay | @mimicmckay | May 4 2:51pm

In reply to @colleenyoung "@mimicmckay, what a gut punch to find a second primary cancer as an incidental finding. When..." + (show)

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?

Colleen Young, Connect Director | @colleenyoung | Apr 27 8:34pm

In reply to @mimicmckay "Thank you for the tip to look up Life Raft. I was diagnosed with an esophageal..." + (show)

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

lidycj51 | @lidycj51 | Apr 22 11:32am

In reply to @mimicmckay "Thank you so much! My oncologist is recommending Gleevec but is checking to see if there..." + (show)

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!!!

mimicmckay | @mimicmckay | Apr 20 10:06pm

In reply to @lidycj51 "I had a Gist removed about 9 years ago from my lower intestines was put on..." + (show)

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?

lidycj51 | @lidycj51 | Apr 20 11:32am

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!

mimicmckay | @mimicmckay | Apr 18 10:53am

In reply to @jeshaw6801 "If it is a Gist, checkout the organization called LifeRaft" + (show)

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.