First, thank you all who responded today to my post regarding life insurance. Its truly overwhelming to know Im not in this battle alone. Not the answer I was hoping for but it helps. It looks like a few others also had the same question so Ill say thanks for them too. :) Second, I was on Gleevec for two years (2010-2012) after I had a 16 cm GIST removed during emergency surgery. I had very little side effects while on Gleevec. A little moody (got frustrated easy), I burnt to a crisp the first time in the sun, and thats about it (besides of course the loose BMs). My oncologist, who did not specialize in GIST, said it would be ok to stop taking Gleevec after two years as all my scans were clean. I continued to have scans which were all fine until I again experienced abdominal pain this September at which time I learned that my stomach was littered with tumors (too many to count). Besides having a fairly constant dull pain on my right side, I feel great. I started Gleevec again and my body is accepting it well. First CT-scan (3 months after starting Gleevec) didnt show any significant change but my Dr. said she didnt expect to see much of a change for at least 6 months. Im seeing a GIST specialist at the University of Chicago Medical Center. Im sharing this information for two reasons: 1) I cant stress enough to find a GIST specialist. Its almost a 6 hour drive for me but well worth it. My first oncologist was super kind and Im sure very knowledgeable about certain types of cancers but a GIST specialist wouldnt have allowed me to stop taking my medication after only two years. My current Dr. was actually shocked. And the oncologist I saw right after I learned it had come back sounded more like a hand slapping, baby kissing politician then a doctor. He made my discussion very easy to find a GIST specialist. And 2), I cant be the only person with GIST who has little to no side effects from Gleevec. I felt that way after reading a lot of the past posts last night. To those new to this disease, its very possible you may have very little side effects to Gleevec and it may work great for you. And to those of you whos fight is more challenging, I urge you to please continue to fight the good fight. I loved the comment about finding something meaningful in your life. Your children, grandkids, volunteering; find whatever it is that gets you fired up to win today. We all can make a difference.
Posted on: Fri, 09 Jan 2015 01:01:17 +0000