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low counts on sprycel


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#1 idahobeavers

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Posted 03 June 2012 - 07:45 AM

   

heres my last special cbc the one they send off

wbc 2.5,rbc 2.41,hgb 9.7,hct 28.6 mcv 118.7 mch 40.3 mchc 34.0 rdw 20.7 plt 46 mpv 9.8 ne%42.4 ly%42.5 mo% 8.4 eo%6.7 ba%0.0 ne#0.9 ly#1.4 mo#0.05 eo#0.2 ba#0.0

manual diff

segs%34 lymphs%56 mono 2 eos 8 baso 0 band 0 plt morph normal plt est decreased aniso 2+ macro 3+ poik 1+ teardrop rbc rare rbc frag rare .does this say anything to you. and no i am still taking 100 sprycel daily and she has cut me down to seeing her every 3 months

hope your memorial weekend is a good one

  



#2 hannibellemo

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Posted 03 June 2012 - 08:43 PM

Sarah,

IMHO you have a couple of counts that are too low for your doc to say she only has to see you every 3 months. Are you at least having regular CBC and Diffs? They should be following your platelets and ANC probably weekly to make sure they don't drop any lower.

When my ANC dropped below 1.0 on Gleevec I took a vacation until they came back up. That's pretty conservative as we're probably ok as long as they are .5 or above, but I felt better psychologically when they above 1.0. For some reason Sprycel did not supress my blood counts like G did.

Pat


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"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 Trey

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Posted 03 June 2012 - 08:51 PM

Generally, it shows anemia.  Your overall "blood quality" has not stabilized.



#4 idahobeavers

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Posted 06 June 2012 - 10:29 AM

no she only wants to see me every 3 mos. i am so weak and tired i dont want to do anything. i push myself. it scares me to have them so low!!!!



#5 hannibellemo

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Posted 07 June 2012 - 06:08 AM

Sarah,

I just re-read your other post and came back and looked at your Hgb. No wonder you are tired - you're pretty anemic.

I understand your onc only wants to see you every 3 months, I'm thinking you need a new onc. Quite frankly, she doesn't seem to know what she is doing in your case. Your counts are way too low to only be seen every 3 months. I was seen every week and then every couple of weeks for a long time until my counts stabilized.

You have to be your own advocate! I know it's hard when you are feeling like crap but you are not getting the medical care you need, you are not being seen as often as you should be seen and your onc is not listening to you when you tell her how you feel.

I don't mean to seem harsh but sometimes when we're feeling bad that is the only thing that gets through the fog. I can be sympathetic (and I am) or I can tell you something you need to hear - get a new doctor, this one is not helping you OR to be fair to the doctor, take someone with you to the appointment  you are going to make with her today and make sure she understands how bad you feel and that your counts are too low not to be followed closely and you want to see her every two weeks for blood work until they stabilize! Then if she still isn't responsive ask for a referral to another onc for a second opinion.

Good luck!

Pat


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>


#6 Melanie

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Posted 07 June 2012 - 01:58 PM

Sarah,

I agree with Pat. I have similar low counts and am concerned that your onc wants to wait 3 months to see you.  I have weekly blood draws and see my onc every two weeks. I also get a call from his office each week after they get the lab results on what adjustments to make. I saw your other post about the extreme fatigue and I totally understand. Maybe if you got a second opinion and / or had closer monitoring you would feel more supported, in control and there may be light at the end of the tunel.  Too much can happen in 3 months. I wish you all the best and please keep us updated.

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)

#7 idahobeavers

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Posted 09 June 2012 - 11:33 AM

i will get a appt as soon as possible.i also shot a email to the cml experts.






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