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6+ Years remission but now...

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#1 Sageterra


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Posted 13 October 2016 - 11:23 AM

At my last check up, the doctor said she was concerned with some of my blood results-I believe it was the hemoglobin and hemocrit.  I'm attaching all of the results here.  At any rate, she is having me retested in a month, then she may do a bone marrow biopsy again if she remains concerned.  Thoughts?


I started on the generic Gleevec (I've been on gleevec 400 mg all this time) six months ago. 


Thank you! 

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#2 Trey


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Posted 13 October 2016 - 06:45 PM

Your numbers are fine.  Nothing to worry about.  Most of us have some odd counts, mostly caused by the TKI medication (Gleevec).

#3 Buzzm1


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Posted 14 October 2016 - 12:26 AM

Sageterra, since you have been in remission for 6+ years, it might be advisable to consider reducing your dosage to help alleviate any side-effects being caused by Gleevec.  

For the benefit of yourself and others please add your CML history into your Signature


02/2010 Gleevec 400mg

2011 Two weakly positives, PCRU, weakly positive


2013 PCRU, PCRU, PCRU, weakly positive

2014 PCRU, PCRU, PCRU, PCRU (12/07 began dose reduction w/each continuing PCRU)

2015 300, 250, 200, 150

2016 100, 50/100, 100, 10/17 TFR

2017 01/17 TFR, 04/18 TFR, 07/18 TFR 0.0012, 08/29 TFR 0.001, 10/17 TFR 0.000

2018 01/16 TFR 0.0004 ... next quarterly PCR 04/17


At the earliest opportunity, and whenever possible, lower your TKI dosage; TKIs are toxic drugs and the less we take longterm the better off we are going to be ... this is especially true for older adults.  


In hindsight I should have started my dosage reduction two years earlier; it might have helped minimize some of the longterm cumulative toxic effects of TKIs that I am beset with.  


longterm side-effects Peripheral Artery Disease - legs (it's a bitch); continuing shoulder problems, right elbow inflammation.   GFR and creatinine vastly improved after stopping Gleevec.


Cumulative Gleevec dosage estimated at 830 grams


Taking Gleevec 400mg an hour after my largest meal of the day helped eliminate the nausea that Gleevec is notorious for.  


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#4 Sageterra


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Posted 14 October 2016 - 09:07 AM

Thank you Trey and Buzz!  Shortly after I posted this, I got a call that I had to come in for another blood draw as they neglected to send out for the BCR Abl test.  Sigh.


I used to be on here as Terrasage but nothing I tried let me back into that account!

#5 hannibellemo


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Posted 15 October 2016 - 08:17 AM

Your tests look "CML normal" to me! After 8 years my counts are mostly all in the normal, there's always one or two that have to be the exception.



"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>

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