• G.I.S.T Tumor Some growth was found on a portion of the tumor and it's pushing on my bowel. My oncologisgt wants me to see a surgeon since he hopes that this poetion can be cut out and I can continue taking 'gleevec as my treatment. Hasd anyone had A s

    Asked by ironmikey on Thursday, May 9, 2019

    G.I.S.T Tumor Some growth was found on a portion of the tumor and it's pushing on my bowel. My oncologisgt wants me to see a surgeon since he hopes that this poetion can be cut out and I can continue taking 'gleevec as my treatment. Hasd anyone had A s

    15 Answers from the Community

    15 answers
    • Molly72's Avatar
      Molly72

      I had a GIST tumor in my stomach about 7, maybe 8 years ago. Had surgery (by a mean surgeon and in a lousy hospital!!) & I am still here. No chemo for it either.
      I have had more trouble with other medical problems, including several other cancers, than I had with the GIST, so perhaps you can get through this rough spot.
      Good luck!

      4 months ago
    • BarbarainBham's Avatar
      BarbarainBham (Best Answer!)

      IronMikey, I was diagnosed with GIST and had stomach surgery in 2012-13. I did great regarding the surgery, but mine spread to my abdomen close to my liver before I started taking Gleevec. When I started taking Gleevec, it immediately shrank and so far is still controlled by the Gleevec.

      It's great if you can have surgery to remove it, but your next question could be whether your Gleevec dosage needs to be increased to keep it in control. There are several other drugs developed for GIST, but I was told that Gleevec is the most reliable.(statistically).

      When I was diagnosed, I read that GIST is so rare that patients should be sure they go to a large medical center that's seen it before, referring not only to the oncologists, but to the pathologists who diagnose it. You can always get a second opinion, but sometimes GIST grows very fast, so don't delay. (Your pathology reports note the mitotic rate.)

      Please let me know any specific questions I can help with. I noticed in your profile that you had applied for SS disability. If you don't have it yet, let them know you are Stage IV, and they will expedite it. My first check came in less than a month from when I applied. Of course, it's all dependent on your doctor's office faxing them the records documenting you are Stage IV. Wishing you the Best.

      4 months ago
    • ironmikey's Avatar
      ironmikey

      Hey Barbarian, I did get social security, Thanks. Ufortunately mine already has spread to my liver. I go to Fox Chase witch is pretty well known and my doctor has a good bit of G.I.S.T. experience so I'm told.

      they talked about changing the dose if surgery is'nt an option. They tried to do some sort of molecular testing but my biopsy didnt give suficient results so maybe I'll ask about a new biopsy. AS I mentioned earlier they all agreed that surgery wasnt possible untill this recent scan when they said that the one portion of the yumor is growing against my bowel so I'm meeting with the surgeon on may 23rd. I to Fox Chase Cancer center in Philadelphia by the way. hope to here from you again soon and I'll let you know how it goes when I see the surgeon... thanks Best Wishes

      4 months ago

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