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Rising PCR Falling Blood Counts

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#1 xxgirl


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Posted 05 January 2016 - 12:01 PM

A little background:


Diagnosed in April 2014 with WBC over 500,000.  Responded to Gleevec 400mg quickly and PCR fell to 6.8 in six months.  After 9 months, stopped responding to Gleevec when PCR rose to 46.


Started Sprycel 100mg 02/15 and all of my blood counts tanked, but PCR fell again to 9.8.  After five months of low blood counts, numerous transfusions, and rbc stimulating shots, Onc lowered dosage to 50mg Sprycel.  PCR went up to 21 in 6 weeks time.  So back to 100mg of Sprycel.  Continued low blood counts, continued transfusions.  PCR fell almost immediately back to 8.4...until November 2015 when PCR again rose to 18.


I started Tasigna 800mg at the end of November 2015.  Blood counts still trending down, with WBC lower than it has been - it dipped into the 1's, but is now pretty steady at 2.5 and platelets between 20 and 35.  (HGB continues to be low as well.)  PCR as of December 31, 2015 up to 21.8.  Onc said lets give it a few more weeks.  Is that at all reasonable?  I feel like I'm taking medication that is not working.  I'm super stressed out, I've had constant runny nose on Tasigna, and now I have a cold sore.  Not a good start to the new year.  


I've had one mutation test which revealed a 35 neucleotide insertion between exons 8 and 9, but according to most of the literature that I've been able to find - while it possibly may indicate a resistance to Gleevec - it should not prevent me responding to Sprycel or Tasigna.  


At this point, I have no idea what to do.  I had a total of 8 RBC blood transfusions in 2015, and will need another next week.  ( I can usually go until HGB is in the high 6's to low 7's.)  Platelets have not been above 50 in 8 months, and ANC has been between 1000-500 as well.  I have not had any drug breaks, and PCR continues to rise.  Should I demand to be immediately switched to Bosulif or Pontinib?  (Onc wants to run another mutation test, and stick with Tasigna for a couple more weeks.)  I'm missing work every week for dr appointments, I've gained a bunch of weight as I've been unable to do any consistent exercise with my HGB so low (I get extremely out of breath, and it feels like my heart is going to beat out of my chest), and I'm just so sick of feeling sick that I'm beyond frustrated.  


What is my next logical step? Bosulif?  Pontinib?  I'm feeling so discouraged.

#2 r06ue1


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Posted 05 January 2016 - 02:20 PM

Bosulif and Iclusig but the later has some nasty coronary sides.  


ABL001 trial perhaps?  Not sure if you are close to a site.  



08/2015 Initial PCR: 66.392%

12/2015 PCR: 1.573%

03/2016 PCR: 0.153%

06/2016 PCR: 0.070%

09/2016 PCR: 0.052%

12/2016 PCR: 0.036%

03/2017 PCR: 0.029%

06/2017 PCR: 0.028%

09/2017 PCR: 0.025%

12/2017 PCR: 0.018%



Taking Imatinib 400 mg

#3 Buzzm1


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Posted 05 January 2016 - 02:47 PM



What is my next logical step? Bosulif?  Pontinib?  I'm feeling so discouraged.

xxgirl, I'd first want to put myself in the hands of the very best CML Oncologist available to me ... hoping Trey can steer you in the right direction ... 

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.  


Trey's CML BlogStopping - The OddsStop Studies - Discussion Forum Cessation Study

Big PhRMA - Medicare Status - Social Security Status - Deficit/Debt

#4 Trey


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Posted 05 January 2016 - 05:04 PM

You have not been on Tasigna long enough to know if it will work against the CML, or to adjust to it.  So I would give it more time as your Onc suggests.  Maybe ask about the ABL001 trials, and I'm sure there is one in LA.  Otherwise probably Bosulif next if that becomes necessary. 

#5 xxgirl


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Posted 06 January 2016 - 11:15 AM

Thank you for the responses.  I will hang in there, and hope that Tasigna works well for me, and try not to get stressed out about things that are beyond my control.  


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