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.

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.

jeshaw6801 | @jeshaw6801 | Apr 16 9:20am

In reply to @pptodd "I have just been diagnosed with I see a pancreatic surgeon in 2 weeks." + (show)

If it is a Gist, checkout the organization called LifeRaft

pptodd | @pptodd | Apr 15 6:38pm

I have just been diagnosed with I see a pancreatic surgeon in 2 weeks.

Barbara | @barbjowilliams | Apr 14 10:16pm

In reply to @jeshaw6801 "Did you get a genomic analysis?" + (show)

Not at first, because looking in my colon only showed the diverticulitis in 2009. Moving forward in late 2010 Gynecologist felt stomach palpitations and ordered a STAT CT abd/ pelv at the hospital.
CT results showed a very large spindle cell tumor was wrapped on the outside around my Transverse colon. They tumor was processed in Histology and assumed GIST even though the C/KIT was negative. A Radiologist recommended that I go to a Duke Oncologist. I seen a Sarcoma Oncologist, and showed his team the staining results along with a pic of this large tumor after resected and he had tumor slides destained and
restained. He told me after restaining slides that tumor was a rare SFT Sarcoma

Colleen Young, Connect Director | @colleenyoung | Apr 14 8:30pm

In reply to @pptodd "My tumor was just found on a MRCP I can’t see surgeon until later this month...." + (show)

@pptodd, the waiting is the worse part. I can imagine that your mind is racing in circles. I find it can help to have pen and paper or your phone nearby to jot down your questions as you think of them and then move on to something that distracts you that you enjoy.

Have you started a list of questions for the surgeon?