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Procrit or Transfusion?

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#1 xxgirl


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Posted 16 May 2015 - 12:13 AM

My pancytopenia has been in a steady downward spiral, with HGB 7.5, WBC 2.7, Platelets 39, and ANC .8 as of yesterday.  Today I received a shot of procrit to try to help stimulate my reds.  Eagerly (not so much) awaiting side effects from that little lovely.  Anyone here have any issues with procrit or similar?


Question: With my hemoglobin dropping every week, is the best course of action the procrit, or a transfusion?  I'm still fairly active - while I haven't been able to exercise very much, I am still working full time, doing housework, and thought that I was feeling better until I tried taking the stairs today.  (Its a good thing it was only 3 flights.)  From what I've read, the red blood cell stimulating shots take a few weeks to kick in, and my hgb has been dropping . 2 - .5 weekly.  Has anyone had both at the same time, or in the same week, or is it usually one or the other?  Should I be restricting my activities more, or am I ok to carry on as usual; albeit at a much slower pace?

#2 DebDoodah22


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Posted 16 May 2015 - 08:30 AM

Please do reduce your pace and activity....Trey would probably have the best info for you here.

#3 Trey


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Posted 16 May 2015 - 08:44 AM

It might be advisable to take a drug break.  Sometimes that will stop the downward cycle.  You might need shots and transfusion both at some point until this stabilizes.


The overall issue is the transition from the blood being dominated by leukemic cells to the blood being dominated by normal cells.  For some that can take a while, and it seems women have this issue more often.  Normal blood cell production is reduced when leukemic cells take over and the body attempts to limit the rising cell count, and leukemic cells do not respond but normal cells slow down production.  So once the leukemic cells are under control the ramp-up of normal cells can require some time.  And the TKI drugs also slow down that ramp-up process.


You can do what you feel capable of doing.  Be a little more aware of any light-headedness which could at times be hazardous. 

#4 Damerault


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Posted 19 May 2015 - 08:37 PM

We seem to have similar journeys. I too experienced very low PLT, HGB and WBC counts while on the TKI drugs. I have had several RBC and PLT transfusions and at one point a Neulasta Injection to stimulate my bone marrow to produce white blood cells. I never received procrit though. I worked full time through it all. I did have to cut back on other activities during this time though. Eventually as Trey stated my normal blood cell production took over. It did take several months though, almost a year. You learn the signs of getting light headed, throbbing in your ears and bruising. You can make it through. Good luck.

11/29/2013 Diagnosis PLT 538 K/uL HGB 6.2 G/DL, HCT 18.5% WBC 557.00 K/uL Enlarged Spleen
Sprycel 100 MG
Hydroxyurea initially 4 capsules daily
By 4/2014 PLT 27, WBC and RBC Low. Off Sprycel for 3 weeks
After 3 weeks, blood counts normal, no mutation, back on Sprycel 50 MG
5/2014 PLT too Low off Sprycel 4 weeks
6/2014 started Tasigna
Side Effects- Nauseous, Headaches, Tired
8/2014 second opinion Mass General CML Specialist
Continuous transfusions of RBC, PLTs and NEualasta to temp increase blood cells to fight off infection.

Remain on full dose Tasigna

Major p210 International Scale

05/11/2015 0.0950
09/08/2015 0.0782
01/19/2016 0.0310
04/28/2016 0.0161
07/25/2016 0.0244
11/04/2016 0.0140
02/06/2017 0.0129
05/23/2017 0.0087
Today 0.0000

Be well, Diane.

#5 Melanie


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Posted 19 May 2015 - 08:59 PM

I can't speak of the Procrit, but my experience with transfusions were good. No side effects except feeling almost immediately better. Usually lasted for at least two weeks or more. Procrit was never discussed as an option. Before any option though, I always tried a drug break first to see if it would "reset" my cell production. When that failed is when we chose transfusions. Hope this helps.
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)

#6 xxgirl


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Posted 20 May 2015 - 12:24 PM

Thanks Trey, I suspect that I'll be having a drug break any day now.  I would feel much better about it if my BCR-ABL number was a little lower as I'm still around 12%, so it's difficult and definitely anxiety inducing to know that while one issue may get better, the other may get worse.


I live at high altitude (above 6500 feet)...doesn't that have some effect on red blood cells/hemoglobin?


Diane and Melanie:  


I've actually had a blood transfusion before, when I was in the hospital shortly after diagnosis.  I didn't have any kind of reaction, except a little nausea, but did not feel noticeably better right away.  It's been a tough week, with my blood constantly rushing in my ear and an elevated heart rate from even the smallest tasks, so it may be time for a transfusion.  Waiting for my normal blood cell production to kick in, but feeling like 100mg Sprycel may just be too high of a dose for me.    

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