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#1 buckyfandan


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Posted 02 December 2011 - 05:34 PM

I was diagnosed with cml in August of 2009.  I used Gleevec for a year and a half, and my pcr log reduction was at 3.99 (I''m not given the international number).  Then it dropped to 2.66, and then 2.33, and my onc did a mutation test that came back "No result."  At this point my onc switched me to 100mg of Sprycel, and my lungs immediately filled with fluid.  I was switched to 70mg, felt fine, and my log reduction was back to 2.84.  The next pcr came back at 2.63, and I was put back on 100mg.  Again, my lungs filled with fluid, and now I'm taking a diuretic every so often to get rid of it.  Since going on the 100mg about a month ago, I slowly started to feel like total crap: muscle cramps, joint and bone pain, and very fatigued.  Of course I'm concerned that the symptoms mean my cml is going nuts instead of this being related to the Sprycel.

I'd appreciate comments on the treatmet course my onc is following, and what you think my current symptoms are related to.  Also, and this is a long shot, I'm a quadriplegic due to an accident 25 years ago.  Anyone else out there dealing with this combination or am I just extremely lucky?

#2 Trey


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Posted 02 December 2011 - 10:41 PM

Overall, your log reductions show a good response.  The Onc seems to be the right things, but the pleural effusion is certainly an issue for you.  The symptoms you describe do not mean anything regarding drug response and the CML, but rather it is just side effects.  You cannot "feel" anything related to the CML down at the roughly 2+ log reduction status.

Your case does not act like a kinase mutation.  Anyway, the mutation test does not work very well below approximately 2 log reduction levels.  But more likely just a more generalized form of low level Gleevec resistance, which can have multiple causes that the other drugs can overcome.

Your Onc could put you back on 50mg Sprycel for a while, and you might be able to work through the side effects you are having.  They can take a few months to even out.  Or the Onc can switch you to Tasigna.  The Tasigna may be a better choice for someone who does not move actively, if that is your condition, since the pleural effusion can be a bigger issue if the person is more sedentary. 

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