hey guys, after almost a year and a half i still have low counts. my wbc is always between 3600-4500 and my platelets are now around 95-100K (i spent most of last year with 75-85K). i had low counts with gleevec and still have low counts with tasigna. is there anybody out there who passed throught the same situation and the counts got normal at some point? thanks in advance.
still have low counts after more than a year
Started by
Lucas
, Apr 16 2015 02:10 PM
7 replies to this topic
#2
snowbear
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Posted 16 April 2015 - 02:27 PM
I have not yet, but my Onc told me that my counts will be low when they bottom out and not to worry about it when it happens.
#3
Trey
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Posted 16 April 2015 - 04:08 PM
It is not unusual to remain below normal in WBC and RBC for several years or even longer term.
#4
Lucas
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Posted 16 April 2015 - 04:26 PM
hey, trey, thanks. my rbc is fine, i only have problems with wbc and platelets.
#5
Trey
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Posted 16 April 2015 - 06:02 PM
CML normal.
#6
Melanie
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Posted 17 April 2015 - 08:43 PM
Lucas try not to stress over low counts. As Trey says it's CML normal. I'm one of those that have chronic low counts with WBC, RBC, and PLTs and have for years. At first it use to scare me and I've had my share of transfusions and other treatments when they were critically low, but now that they have stabilized, it's just a matter of monitoring. I've learned that my new "normal" is much lower than the standard and that's okay. Who wants to be like everyone else anyway? 😜
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)
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)
#7
Lisa Lisa
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Posted 19 April 2015 - 09:32 PM
Well said.I've learned that my new "normal" is much lower than the standard and that's okay. Who wants to be like everyone else anyway? 😜
How low is ok for WBC without the doc stopping the TKI? My WBC level is 2.5 and I dont want to go any lower! I dont want to stop the Sprycel. I just got over the headache initiation!
Dx 2/2015 BCR-ABL1 (p210) 85.2% (IS) 3/15
22% 5/15 0.13% 6/15 PCRU attained 9/15
Initial dose Sprycel 100 mg 3/15 Lowered 80 mg 5/15 Lowered 50 mg 1/16
Note: dose lowered bc of side effects - not bc onc wanted to reduce dosage
Sprycel: Currently 50 mg per day - taken 10 pm
#8
hannibellemo
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Posted 20 April 2015 - 06:32 AM
What is your absolute neutrophil (WBC) count, ANC on many reports? Docs pay more attention to that. At <1.0 my local onc would give me a break (only happened once, I went down to .9 on Gleevec). My Mayo onc was comfortable with .5 before taking a break.
Sprycel didn't affect my counts nearly as much as Gleevec did.
After 6+ years I still have below normal counts. Don't worry too much! 
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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