My husband just started Gleevec for gist the tumor was removed and we were told he would be on gleevac for 1 to 3 years. But according to what i have read he may never get off. Has anybody gotten off?
How long did you have to take Gleevec for?
- 28 Nov 2013 by Graci12
- 24 February 2014
Sorry, this is not exactly an answer to your question so feel free to downvote me - However, I was just diagnosed with GIST too and will be taking Gleevec (I am a 24 year old female). If you don't mind me asking - how large was your husband's tumor? I am having my first appointment with my oncologist tomorrow and I am using Dana Farber in Boston (which has an entire GIST department and in fact created Gleevec and 4 years later were also the ones to discover its positive effects on GIST since Gleevec was originally only used to treat certain types of leukemia). I am very lucky. If you have any questions you would like me to ask these GIST specialists, I am more than happy to ask them for you. I will already be asking them if they think I will ever be off of it (while my cancer didn't spread (!!! ) my tumor was still rather large... described as a man's fists put together... so I imagine I'll be on for a minimum of 3 years). From talking to my surgeons (who are not GIST specialists) my suspsicion is that if the tumor was rather large but there is no residual disease, they will put you on Gleevec for three years, take you off, and see if it starts to grow back. However, if there is any residual disease - because (from what I have READ ONLINE so not necessarily an accurate source... I will know more tomorrow) Gleevec doesn't CURE the cancer (it can prevent it from growing back and shrink existing tumors) you will likely be on it the rest of your life. Keep in touch if you'd like!! It's hard to find others going through this! Best of luck to your husband :) I'm sure he'll do just fine!!!
My surgery was 2/1/13. It was a grapefruit size and half my stomach and a little bit of my esophagus was removed. I was told that if it hadn't been so large that surgery might have been enough. My surgeon felt confident he got all of it and no "seeds" leaked into my abdomen. My first annual CT was clear. Im in my tenth month of treatment and some side effects have lessened and some increased. I think im going to try and stick it out for the three years simply because i told my family that i would do my best to live as long as possible. My quality of life is so different. Muscle fatigue, pain, weakness. Battle depression. Limited choice of food i can eat with the nausea and choking. 27 months of therapy does stretch out like an eternity but i try to make the best of it. Ive decided to give my loved ones as i can and still function. I have a fellow gist person here in my town that was on the original trials. She took it for one year and was diagnosed eight years ago and is healthy.
- Gleevec Information for Consumers
- Gleevec Information for Healthcare Professionals (includes dosage details)
- Side Effects of Gleevec (detailed)
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