Today is my third anniversary of diagnosis and starting Gleevec. About one year into it, I had my bone marrow work come back showing a possible mutation (there was none) and elevated BCR-ABL AND FISH. I was bumped from 400 mg to 600 mg and that brought me back in line. In this last year my red cells have been very low on several occasions. My doctor and I discussed switching to Sprycel or Tasigna but made the decision to stick with the Gleevec, as I have almost achieved PCRU (0.003) for the last year. I started eating more protein and some things I don't really like but it has bumped up the red cells.
My biggest issue is that as I age, and I'm about to turn 60, my degenerative arthritis combined with bone pain from Gleevec, is making me feel like I'm 100! Hang in there because without these new meds we wouldn't be here. Marcie -----Original Message----- From: Donald Donofrio <[email protected]> To: cmlhope <[email protected]> Sent: Tue, Mar 13, 2012 10:27 am Subject: Re: [CMLHope] Re: loss of effectiveness of gleevec and sprycel May 1 will start my wife's 13th year with CML and gleevec. Her readings are normal and she returns to the doctor every 5 weeks. her problem is she has spinal sinuous and has to us a walker. The CML is in remission. Don Donofrio From: Frank <[email protected]> To: CMLHope <[email protected]> Sent: Tue, March 13, 2012 7:56:24 AM Subject: [CMLHope] Re: loss of effectiveness of gleevec and sprycel What were your last 12 months bcr/abl test results? Regards, Frank On Mar 12, 1:54 pm, skink1100 <[email protected]> wrote: > I have had cml for nearly 10 years. For several years I was at the > not detectable level in my pcr tests. Last year the gleevec seemed to > no longer be as effective...and my doctor switched me to > sprycel...about 4 months ago...my results continue to decline, > although my blood looks ok. Has anyone had a similar > experience...could it be a new mutation? Where does on go from > here...getting worried. -- [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 -- [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 -- [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
