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Platelets and CML


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#1 Krock41976

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Posted 01 August 2015 - 06:27 AM

I ended up in the hospital severely anemic last Sunday from heavy menstrual bleeding that they could not get to stop with any hormonal method. Had to have blood transfusions and then a platelet transfusion right before an endometrial ablation surgery. If the ablation doesn't take, I'll need a hysterectomy. Had a follow up with my ONC yesterday and she's worried about my platelet count. It was fine when I went into the hospital but has been all over the place since then. She said something about needing to make sure it's not the Gleevec causing it. I have to go back for weekly CBCs for the next few weeks to track it. She said not to even worry about white cell count right now, that we needed to figure out the platelet thing. So I'm just having a little trouble understanding how/why my platelets are doing this? I've been on the Gleevec for three weeks now. Any insight? Thx!

#2 CML2012

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Posted 01 August 2015 - 07:17 AM

I had similar issues with my cycle when I started on Gleevec. My oncologist had no idea what to do because I am his only patient still having a cycle. My platelets were low but leveled out. My cycle was not as bad as yours. I did not have the ablation nor did I need a transfusion but it was pretty horrible. I am now on Sprycel and my cycles are still not regular. I wish I had some better insight for you. I am sorry you are going through this but I wanted you to know you are not alone with this side effect.
Diagnosed CML December 2012
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)

#3 Trey

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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.



#4 Sassenach

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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


#5 gerry

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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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