Hi Carol, I have been off gleevec for over 6 years now. (Was on it for 2 yrs, 3 mos.) My numbers are slowly climbing. I have tried sprycel and tasigna and had problems with both. Now the only remaining one left to try is bosutinib. I have a tendency to have brain bleeds, which can certainly be fatal. One big stroke in 2010 and now kind of waiting before taking anything due to that. If your doc monitors your numbers there is no huge risk to going off for a vacation, if you are undetectable at present. I am hoping for that vaccination to come into reality that may be a better answer for me than meds. Praying for your continued remission and all to go well for you.
Blessings, Susan F. Zimmerman -----Original Message----- From: Richard H <[email protected]> To: cmlhope <[email protected]> Sent: Sun, Nov 24, 2013 11:41 pm Subject: [CMLHope] Re: sprycel questions Sorry to hear you are having problems with the different TKIs. You have mot mentioned if you where ever undetectable. I was on and off Gleevec for 6 months proving the Gleevec was the cause low hmg counts and having have transfusions every 3 weeks. My ONC did his research and agreed I could go off Gleevec under close oberservation. That supervision was extended to every six months. I would not want to take an extended vacation without some trial periods to see if your body is ready to control the CML(I lost my undetectable but have maintained a low count for 5 1/2 years. I too have kidney issues because of heavy duty drugs for various issues. I do have a medigap insurance, but it would cost me a 25-30% co-pay. I was fortunate that the VA has me qualified for drugs for a small co-pay. I will be praying that you find a resolution to your problems. Richard H. On Sunday, November 24, 2013 10:06:43 AM UTC-6, [email protected] wrote: Hi to all, haven't posted in a long time seem to need some advice now...Was on Gleevec for 10 years..switched to sprycel due to kidney issues...was on sprycel for 2 years when I developed pleural effusions. .I have had 4 drained and now have a chest tube, which is miserable as I still work...I see my oncologist tomorrow and have decided to go off sprycel...due to other reasons I cannot take Tasignia, so will probably go back to Gleevec....here is my dilema...I would like to take a chemo break...how long is safe and how many have tried this? Also, I now have to sign up for medicare...has anyone found a medigap plan that will cover these drugs....thanks so much for all the support that is given on this site...amazing people with amazing faith and strength.. Carol -- -- [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/groups/opt_out. -- -- [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/groups/opt_out.
