GIST

MatthewS951
MatthewS951 Member Posts: 8
edited March 2014 in Rare and Other Cancers #1
Hello,
Last November I had a Gastro-Intestinal Stromal Tumor surgically removed from my stomach. Four days following surgery, they informed me that they had found some cancer cells in the tumor and would have to perform a second surgery (five days after the first surgery) in order to cut an exclusion area around where the tumor was removed. I've undergone several CT scans, Endoscopy's, and one PET scan and have been told that they have found no more cancer cells (good news). I'm interested in hearing from anyone who may have had the same type of rare cancer, GIST. It seems that there's not much information out there on this type of cancer which is why I'd like to hear from anyone with knowledge of it. Thanks! Matthew S.

Comments

  • lisac
    lisac Member Posts: 1
    #2
    In October 2000, I had a tumor removed and was diagnosed with Leiomyosarcoma. I went through chemotherapy and the cancer returned 10 months after my last chemo treatment. This time I was told that it was inoperable due the extent of the disease. My oncologist told me about Gleevec and the response it had on GISTS and I started taking it in May 2002. The tumors began to shrink and in February 2003 I again underwent surgery. I continue to take Gleevec and have had little to no side effects.
  • MatthewS951
    MatthewS951 Member Posts: 8
    #3
    lisac said:

    In October 2000, I had a tumor removed and was diagnosed with Leiomyosarcoma. I went through chemotherapy and the cancer returned 10 months after my last chemo treatment. This time I was told that it was inoperable due the extent of the disease. My oncologist told me about Gleevec and the response it had on GISTS and I started taking it in May 2002. The tumors began to shrink and in February 2003 I again underwent surgery. I continue to take Gleevec and have had little to no side effects.

    Thanks LisaC. My Oncologist has discussed Gleevec with me, but as of this date I have been declared cancer free. The big question is how long will that last. I am happy to hear that you have been having good results with Gleevec. Hopefully you are having a good recovery from your last surgery in February. My last surgery was in the end of November and I'm just now feeling as I did prior to my surgery. I'm 51 years old and was in good condition and excellent health until this happened to me in late Nov. I'm just glad they found it when they did and that surgery was able to remove it. Thanks again for your post here. Take Care, Matthew S.
  • tjsiebs
    tjsiebs Member Posts: 2
    #4
    I too had a GIST attached to my stomach. They found it because I was in extreme pain - as it turned out, bleeding into the tumor. I had exploratory surgery and they took a biopsy, found cancer and followed w/ removal of tumor last summer. Margins were clear, but because the tumor was resting against my liver, they recommended a year of gleevec. I am nearing the end of that year and would like to know if anyone else has made this trasition OFF the drug? Thanx, TJ

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