Dear Angie,
I stopped gleevec after being on 400 mg for 2 yrs and 2 mos. It was because I had a brain bleed, then another. I decided back in 2007 before it was popular that I'd rather take my chances and keep myself monitored by blood tests than die of a stroke. I did have a big stroke then in 2010. So I went for 7 yrs without a tki, and my IS numbers were up to 23 when my doc and I decided to start bosulif at 100 mg. This was at Northwestern Medical in Chicago. I am doing fine on it. It took about 9 mos. to come into remission and my doc would have preferred to have me on a higher dose. I am convinced they are all finding out that many patients don't need the high dosages they are prescribing. Don't be afraid to go off!!! They can monitor you and do something quick if you go up fast, which you probably will not. Trust me, the benefits outweigh any fear. No fear, Angie, no fear! 18's, Susan F. Zimmerman -----Original Message----- From: Giora Sharf <[email protected]> To: cmlhope <[email protected]> Sent: Wed, Jun 17, 2015 2:35 am Subject: RE: [CMLHope] Stopping Gleevec Hi Angie We have similar story. I started Glivec on 14.2.2001 and was on 400 mg till 10.6.2014 when I agreed to my Dr's advise to stop. I am now 1 year without treatment doing very well, monthly PCR are all in deep MR4.5 response. I fully understand your concern, I had the same issues and didn’t agree to stop for couple of years. When I saw the data indicating that all the patients who stop and relapse (about 50-60 %) respond well when they restart treatment, I agreed to stop. I also didn’t have severe side effects on Glivec, but I am happy to be drug free and do very strict monthly or 6 weeks monitoring. Please remember if you decide to stop- the most important thing is a very strict monthly PCR on international scale. (IS) Good luck whatever you decide Giora From: [email protected] [mailto:[email protected]] On Behalf Of ANGELYN ESDERS Sent: Wednesday, June 17, 2015 4:03 AM To: [email protected] Subject: [CMLHope] Stopping Gleevec I just received an email from my oncologist telling me that it is safe for me to stop Gleevec for 3 months. I started Gleevec in January 2001, and reached cytogenic remission in July 2001. I've continued on 300mg per day. I was in the study for 12 years. I feel like it is my safety net between wellness and reoccurrence of CML. I am almost afraid to stop it. I no longer have any side effects from it. Who has stopped Gleevec, and what have you experienced as a result of doing so? Thanking you all for your input... Angie in Canada -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/d/optout. -- -- [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [email protected] For more options, visit this group at http://groups.google.com/group/CMLHope --- You received this message because you are subscribed to the Google Groups "CMLHope" group. To unsubscribe from this group and stop receiving emails from it, send an email to [email protected]. For more options, visit https://groups.google.com/d/optout.
