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Platelets: maybe never reach normal levels


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#1 Lucas

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Posted 06 November 2015 - 05:24 PM

I was DX almost 2 years ago and for the first year of my treatment my platelets where between 74-87. This year i had better results with platelets between 98-103.Today i've got my new CBC and my platelets were 91...anyone in the same situation? Does it gets better over time? Thanks in advance!

#2 Trey

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Posted 06 November 2015 - 07:14 PM

The spleen is constantly messing with the platelets, grabbing them up and holding on to them, (sequestering them) until they are needed.  So it is difficult to get a good reading on them.  Also, the testing uses a centrifuge, so it is not so accurate. 

 

If you get cut and you stop bleeding at a normal rate, that is more important than CBC PLT numbers.



#3 Melanie

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Posted 07 November 2015 - 12:39 PM

Lucas,
I've struggled with low platelets for several years and have been in a clinical trail for a couple years, taking Promacta, to keep them up to around 90. I'm ready to stop the trial if I can get my Dr's blessing. I think I can function just fine without the drug and live with low platelets of around 30-40.

All I have is easy bruising and I clot fine when I get a cut. As Trey states, that's the real measurement.

You've shown that given time your platelets are recovering. If you're not experiencing any adverse events, then it would appear your platelets are fine. Wishing you the best!

Melanie
Dx - 05/2011; PCR: 15.04; Fish: 87% Slow responder due to pancytopenia. Current - Bosulif - Nov: 2012, Mar 2016 lowered to 300 mg. 07/16 back to 400 mg. Clinical trial drug, Promacta, Feb 2013, for low Platelets.
CyCR - Aug 2014, Positive for 1 chromosome Sep 2015. PCR: 12.77 in Oct, 2012 to 0.04 (MDA) in Mar, 2016. 4/2016 - 0.126 (Local lab (IS); 05/2016 - 0.195 (local); 6/2016 - 0.07 (MDA); 7/2016 - 0.03 (local) 9/13/2016 - 0.16 (MDA); 9/26/2016 - 0.31 (MDA); 11/2016 - 0.012 (local); 01/2017 - 0.24 (MDA); 04/2017 - 0.09 (MDA); Cytogenetics show der(1:7)(q10;p10)7 chromosome mutation. Repeat of Sep 2015. PCR - 6/2017- 0.035 (local); 10/2017- 0.02 (MDA)

#4 Gail's

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Posted 07 November 2015 - 12:55 PM

Main reason to have platelets above 100 has to do with major trauma or surgery. Anesthetists are reluctant to do spinal or epidural anesthesia if platelets are low due to chance of bleeding into the space around or in the spinal cord. In an emergency, they use general anesthesia anyway. I agree with Trey. Ask for a clotting study if you're not getting it already. Maybe ask about the trial drug brown is using if clotting time is low. Since I work in OB, we see low platelets fairly often and they are treated with steroids to bring them up. Not sure why it works or if it would work outside of pregnancy. Just a few thoughts.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#5 Lucas

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Posted 07 November 2015 - 07:30 PM

Thanks for the insight, guys. Actually i think i clot fine. I was just dissapointed with the result. I know that's not something to worry about, but that's the second time my platelets went lower - 103 in August, 99 in september and 91 now. Not a big variation. The funny thing is that my platelets went lower but my platelets volume went higher.

#6 Gail's

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Posted 07 November 2015 - 08:22 PM

Volume likely influenced by whether you're well hydrated. When we give large volumes of IV fluid in the hospital the CBC will be falsely low due to hemodilution. Once the person pees off the extra fluid you get a truer CBC result. Seems like lab tests can be skewed for lots of reasons and aren't absolute.
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#7 Lucas

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Posted 08 November 2015 - 01:51 PM

gail, so maybe my platelets were lower because i had to much fluid, isn't it?



#8 Gail's

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Posted 08 November 2015 - 07:20 PM

Not positive but dehydrated patients definitely have more concentrated cells and hemodilution is a real phenomena as well
Diagnosed 1/15/15
FISH 92%
BMB 9:22 translocation
1/19/15 began 400 mg gleevec
1/22/15 bcr 37.2 IS
2/6/15 bcr 12.5 IS
3/26/15 bcr 10.3 IS
6/29/15 bcr 7.5 IS
9/24/15 bcr 0.8 IS
1/4/16 bcr 0.3 IS
Started 100 mg dasatinib, mutation analysis negative
4/20/16 bcr 0.03 IS
8/8/16 bcr 0.007 IS
12/6/16 bcr 0.002 IS
Lowered dasatinib to 70 mg
4/10/17 bcr 0.001 IS
Lowered dasatinib to 50 mg
7/5/17 bcr 0.004 IS
8/10/17 bcr 0.001. Stopped TKI in prep for September surgery.
9/10/17 bcr 0.006
10/10/17 bcr 0.088

#9 hannibellemo

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Posted 09 November 2015 - 12:31 PM

Lucas, if it makes you feel any better my onc told me (several years ago) when my platelets dropped from 104 to 91 he considered it to be the same number. Platelets are notoriously difficult to count because they stick together.

 

Those numbers should be fine for your "everyday" injury needs!  :)


Pat

 

"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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