Platelets and CML
Posted 01 August 2015 - 06:27 AM
Posted 01 August 2015 - 07:17 AM
Gleevec 400 mg
PCR 53%, 41%, 1.69%, 5.63% (Mutation test negative) September 2013
Sprycel 100 mg
PCR 1.1%, 0.2%, 0.2%, 0.6%, .09%, .06%, PCRU June 2015, PCRU Sept 2015, PCRU Dec 2015, 0.042% Mar 2016, 0.122% April 2016, 0.19% June 2016, 0.176% July 2016, .052% Sept 2016, .031% Nov 2016
Diagnosed Basel Skin Cancer December 2012, October 2014 (All cancer removed)
Diagnosed Melanoma April 2015 (All cancer removed)
Posted 01 August 2015 - 10:03 AM
TKI drugs can sometimes make platelets smooth and "less sticky" so that even if the numbers are adequate they may not work well enough. This should fix itself over time as the blood making system switches over from leukemic cells to normal cells. But in the meantime you have a significant issue to deal with. If you get through the next few months or so (no way to know exactly how long), the hysterectomy may not be necessary. But this is obviously a risky issue to deal with.
Platelet transfusions use platelets which are functional so this is why transfusions work in this situation.
Posted 01 August 2015 - 03:52 PM
I'm a new Gleevec user too and had a similar but less scary experience...had a very heavy and loooong menstrual cycle and ended up with low platelets about three weeks in. My onc took me off Gleevec for two weeks so I could get my platelets back up and then I restarted. Second cycle was better than the first, not so heavy. Maybe take a break from the Gleevec and restart in a few weeks?
DX March 2015, WBC 25,000, FISH 95%, PCR 19.181
Started Gleevec 400mg May 2015
August 2015--FISH 9%, PCR 0.672
November 2015--CCyR, PCR 0.171
February 2016--PCR 6.830 (let it be a warning not to take a supplement with tyrosine in it)
May 2016--PCR 0.115
September 2016-PCR 0.402
December 2016--PCR 0.256
March 2017--PCR 0.152
April 2017--switch to Bosulif
August 2017--PCR 0.109
November 2017--PCR 0.278
Posted 01 August 2015 - 05:36 PM
I already had heavy periods when I started the Gleevec (apparently no iron stored in my bones from it at diagnosis) so I never noticed any difference. I know some of the ladies on Sprycel have had these issues.
Can you go on the pill at all and skip having periods for awhile?
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