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Platelet roller coaster

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#1 Jamie2015


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Posted 27 March 2015 - 10:40 AM

After being on Sprycel 100 mg for just 3 weeks my platelets went from 800,000s to 119 and also my WBC dropped lower than normal as well. So my doctor decided to try the Sprycel 100 mg every other day. My WBC is now normal and platelets went up to 290. He was satisfied with that so He told me to continue on with that dosage. My blood counts came back and my platelets are back down to 99.

When I was diagnosed it was extremely early. I had no issues with WBC only thing up was the platelets. Do you think going to every other day is okay for me at such an early stage? We are checking the bcr/abl chromosome next week.

Is the platelets fluctuating normal? Will they stabilize on their own?

These blood test give me such anxiety waiting on results then over analyzing every outcome! So sorry for all the questions :)

Also found out my Vitamin D is low at 19 so I'm going to begin taking supplements for that.

#2 hannibellemo


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Posted 27 March 2015 - 08:40 PM

Not sure what you mean "by my WBC dropped lower than normal". If you asked most of us our "normal" WBC is lower than what is considered normal for people who don't have leukemia.  Platelets are notoriously hard to count because they are sticky, 99 could just as easily be 129. Unless your counts are dangerously low I wouldn't let my onc mess with my meds so early in the game. By that I mean ANC is 500 (.5) or lower. Platelets are often the last to normalize and 99 doesn't put you anywhere near a danger zone.


Attaining CHR (complete hematological response), the first benchmark, just means your counts are within (or below) normal range.


I'd be nervous messing with the Sprycel dosage this early in the game. You want to get and keep your CML under control. More important than your blood counts in the long run is your FISH and, later, your PCR results. Getting and keeping the CML under control is your goal. 


You'll be fine, but it will be awhile before your counts decide on a level and stay there!   :)



"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>

#3 Tedsey


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Posted 28 March 2015 - 02:44 PM

PLT 99 would not be cause for alarm unless you have issues with bleeding (nosebleeds, blood in stool--bright red streaks or black tarry stools; cuts that won't clot, etc.).  If all is OK here, as long as you are being monitored, I would not dwell on it.  Usually, below 20K is cause for alarm, and there are some people who do not have bleeding issues even this low.  It is hard to say how well your platelets are functioning unelss they are put to the test or tested in a lab.  I have had low PLT for 5 years.  They have dipped in the 20s and 30s and I have been fine.  I had more bleeding issues on Gleevec than Sprycel, but we all process the drugs differently.  Eventually, your PLT should stabilize (but don't expect overnight--it could take months or years).  You may need dose adjustments.  Your onc can determine this if he or she believes in it (mine does not--I suffered through everything on a full dose with no breaks except at the very beginning on Gleevec due to bleeding). 


Hang in there.  Try not to think about the PLT unless you have the issues I posted above.  Getting your blood tested every other day seems like a lot, but you can ask your onc his/her reasoning behind it.   Weekly tesing seems to be standard early on.  It is important to see how you are responding to the drug.


Hang in there,


#4 pammartin


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Posted 29 March 2015 - 08:49 PM

When my platelets bottomed out to 56,000 I had blood work every day. Of course when they were 198,000 I had blood work every day. I am interested in the every other day dosage. Reduced dosage would seem a better option especially early into diagnosis and treatment.

Treatment, views, and medications have changed so much since I got on this ride in 2011. Amazing stuff

#5 Trey


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Posted 29 March 2015 - 09:07 PM

Platelets are often the last blood count to stabilize.  And since the spleen is trying to normalize at this point, the spleen "messes with" platelet counts by sequestering (withholding) platelets until needed.  So overall the platelet count will take quite a while to get back to some degree of stability.

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