5 replies to this topic

[xxgirl]

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?

[DebDoodah22]

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

[Trey]

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. 

[Damerault]

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.

[Melanie]

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.

[xxgirl]

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.