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AA Aplastic anemia

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  #1  
Old Thu Dec 10, 2009, 02:13 PM
David M David M is offline
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Location: Fayetteville, TN
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Slowly Declining Blood Counts???

Hello,

I am just curious... is there anyone out there (or do you know of anyone) with pancytopenia / AA whose blood counts have slowly declined over a period of years?

My counts have been slowly declining for at least the last 10 years (noticed it in 2000). I still am not at treatment-required levels, but I seem to be slowly headed that way.

I guess I am just curious as to how odd this is... I have met at least one other person who has had AA it this way, so I know it happens.

Thanks for all the good posts and info out there! it has been very helpful to me.

David M
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David M, reds/whites/plats slowly declining since 2000; hypo-cellular bone marrow; diagnosed Mild AA; low counts, but stable since 2009; watch and wait -- no treatments required to this point.
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Old Sat Dec 12, 2009, 06:56 PM
leeslay leeslay is offline
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I was diagnosed in March 2009, did the rabbit ATG in April and my red blood counts have never gone up on their own. I am now going through the desensitization process to try the horse ATG so hopefully this will work!!!!

How much are your counts going down? You haven't had any transfusions yet?
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Lee-39 years old-AA,PNH and chromosome 12 disorder-1 rabbit ATG treatment and 1 horse ATG treatment. Getting my bone marrow transplant on November 23, 2010!!!! Counts as of 12-27-10 HGB 12.0, WBC 7.8, platelets 80, Neut# 3.9(12-24-10)!!! Just a touch of GVHD but back home!
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Old Sat Dec 12, 2009, 11:20 PM
David M David M is offline
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Rate of decline

Although all 3 bloodlines (reds, whites, and platelets) have been declining, the decline has been most noticeable with the platelets. When I first started getting my blood checked (about 10 years ago), my platelets were around 130K to 150K. Gradually they have declined over the years -- about a month ago they were measured at 40K. The platelet drop has been more or less linear and predictable. Last time, neutrophil counts were down to ~1.3. Hemaglobin has been measured as low as ~9.5, but last time it was 10.5 or so.

I have had 3 bone marrow biopsy & aspirations through the years... The first one about 10 years ago showed me as hypocellular with ~25% cellularity ("normal" should have been ~64%). I had another one about 3 years ago, and then one just a few months ago. The latest showed me as still being hypocellular with ~20% or less active cells ("normal" should have been ~55% at this point, I think).

Up to this point, I have been very blessed -- I have not had any treatments or transfusions of any kind. I also have not had abnormal bleeding or bruising. I have noticed some extra fatigue -- but it is hard to know exactly what is going on with that (i.e. who doesn't feel tired?).

I hope your ATG works out for you this time!

David M
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David M, reds/whites/plats slowly declining since 2000; hypo-cellular bone marrow; diagnosed Mild AA; low counts, but stable since 2009; watch and wait -- no treatments required to this point.
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Old Sun Dec 13, 2009, 05:59 PM
Lisa V Lisa V is offline
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David, what you describe doesn't sound that unusual for MAA, which seems to typically be slower moving than SAA. I know we've heard from others with a similar scenario. You might try posting on Aplastic Central too, or do a forum search on both sites for MAA.

Hope this helps,
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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  #5  
Old Fri Dec 18, 2009, 10:22 PM
Deanna16 Deanna16 is offline
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what/where is aplastic central? )
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~Dee~ ) 29yr, wife and mom of 3 :: Dx Moderate AA 9/09, treated with IV iron, currently "watch and wait" :: RBC,Platelets "ok" - low WBC and ANC
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  #6  
Old Sat Dec 19, 2009, 04:02 AM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by Deanna16 View Post
what/where is aplastic central? )
Aplastic Anemia Central (one of the "Patient Resources and Support Groups" listed on our Medical Resources page) is a website for AA patients run by Bruce Lande. It has its own forums.
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Old Sat Dec 19, 2009, 10:24 PM
Deanna16 Deanna16 is offline
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Thank you!!
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~Dee~ ) 29yr, wife and mom of 3 :: Dx Moderate AA 9/09, treated with IV iron, currently "watch and wait" :: RBC,Platelets "ok" - low WBC and ANC
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