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#1 JoshLee



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Posted 13 May 2014 - 11:31 AM

Hi Guys,

     Went in for my monthly CBC today and my platelets were down to 133. Normally hover around 148-160. Anyone else experience fluctuations like this? I've been having a really hard time lately dealing with the anxiety of CML. I was doing really well for a number of months, but have been very uneasy as of late and could use some encouragement. I am 3 years post dx. Thanks, Josh

#2 hannibellemo


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Posted 13 May 2014 - 11:42 AM


There's such a fluctuation in platelet numbers, I was told that 20-30 either way was essentially the same. Your numbers sound fine to me, after 5+ years mine are in the same range. I wouldn't worry about it.




"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 Melanie


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Posted 13 May 2014 - 02:04 PM

Hi JoshLee,

Sorry you're feeling discouraged and the anxiety is getting to you.  Dealing with a chronic disease like this is difficult, especially when you get monthly labs that become a constant reminder. Hopefully, in time all the CML maintenance you go through will fall more into the life routines we go through, like physicals, exercise, teeth cleaning, etc. to keep us as healthy as we can be.  Not always pleasant but necessary.

Your Platelets are at the low end of the normal range for my lab.  As Pat said, they sometimes tend to fluctuate, so really no need to be concerned. I have chronic low platelets and my Dr isn't concerned until they're below 50. For some people, even at very low levels, they have no side effects from it. Others need to be more careful about cuts and bruising. My dentist won't work on me if platelets are below 40. I tell you this in hopes of reassuring you so you won't worry so much. The unknown is so difficult to manage.

Take care and all 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 Tex


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Posted 13 May 2014 - 03:20 PM

Hi Josh, I'm a former AML patient so we're really dealing with different stuff.  However, my PLT have hovered around 100 for the past six years or so (I had a successful transplant nearly 10 years ago). 

One thing I've learned over the past several years is that PLT are damned near psychotic in their fluctuation.  A flux of 20-30 points is nothing. 

A rule of thumb I'd suggest to an AML patient is don't even think about it unless you have three or four draws where your PLT go down consistently,  That would indicate a problem than needs to be checked.  But never let one drop bother you at all.

So, within the constraints of the differences in our disease, those are my thoughts. 

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Posted 13 May 2014 - 03:53 PM

Hi Josh, Sorry you're not feeling well. My Platelets are down to 128. We are lucky to have this miracle drug that is prolonging our lives.

Take care


#6 Susan61


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Posted 13 May 2014 - 06:16 PM

Hi Josh:  My counts are always low, and have been that way for years.  I am always in the 110 range on my platelets, and I once dropped down to 98.  Sorry your feeling so down.  We all get like that at times, even those of us who have been living with CML longer than you.

    You have to take one day at a time, and you can say that you have beat this disease for 3 years now.

    I still remember when I was diagnosed, and I was so worried about my family. Thought I would be leaving them shortly because I had no match for a BMT.  They had nothing to offer me because the treatment back in 1998 was too harsh on my liver.  Back then my only choice was Interferon shots everyday.  Then I did Hydrea for 6 months just to kill off the cancer cells till they could find something for me.  Then I started the Gleevec, and everything started to get better for me.  I started to count off each year that I survived this disease.  God Willing I can say its year # 16 that I am still here this Christmas.

    We refer to each year that we get through as our Cancerversary.  Your going to do well.


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