I just wanted to welcome you Peter to the group. I am sorry you have had such a hard time with Tasigna. sounds really challenging. I did not have those problems with tasigna, I had pancreas and liver enzyme elevations that took me off of it. so I don't know what to say about your specific problem. There are other options to try....Sprycel is 300X plus more potent than gleevec, one of the positives of it, and many people are able to use much less than a whole dose and have achieved MMR or CMM on it. It has it's issues for many people, but for some, lower doses are very effective and produce less side effects. Mostly I am holding hope for you that you can find the right med for you at the right dose that will work best for you. My only thoughts with your toxicity profile, and I am no doc, just my personal experience, is If you do try a new drug I would encourage starting with a lesser dose, do blood work in a month, assess, and go from there,..perhaps titrate up to what your body can tolerate, or stay at alower dose if the trend says it's working......It seems that if we start high and get very toxic, lowering dosages when the body is already under distress causes more problems than clearing the body of the old drug, and starting with a solid but lower dose and going up from there...Other's might disagree...it's just based upon the individual... your heart side effects are worrisome....so the three other options out there may be a thought! Take care, Beth -----Original Message----- From: Peter <[email protected]> To: cmlhope <[email protected]> Sent: Sat, Jul 6, 2013 10:54 am Subject: [CMLHope] Tasigna does not like me
Hi everybody :) After reading your posts for a few months, I thought it is time that I introduce myself. My name is Peter (62), I am from Whitby, Ontario. I was diagnosed with CML in May 2010. It took me about a year to get used to Gleevec, to the point where I could (kindof) live with it. At the end of two years, the only remaining issues were chills, muscle cramps and some fluid retention. The problem was, it did not get me any higher than a 2.7 log reduction - close, but no cigar. I switched to 800mg Tasigna, which got me up to 3.4 log within three months. But I could not tolerate the high dosage, so we lowered it to 600mg. Now I am stuck at a 3.0 log reduction, but Tasigna appears to be doing a number on my cardio - hypertension, palpitations, fast pulse, irregular heartbeat. I take Proprapnolol, Cilazapril, Hydro and the occasional Ativan to keep a lid on these issues, but with limited success. In addition, I am also experiencing extreme fatigue and weakness. Has anybody here had these kinds of problems with Tasigna? If yes, I would be really grateful for any helpful hints you can give me. -- -- [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.
