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#1
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Bone marrow "islands"
So husbands bmb 10/12
Hypocellularity 40-50% All CBC counts very low. Bmb 2/13 Hypocellularity 5% I asked why would it change so drastically? The answer is , that his counts over the last 3 months supported that during his first bmb, it just happened to hit one of those "islands" of higher cellularity. But the counts support that he is at 5%. Hope that made sense how I worded that. I thought I'd share just in case it helps anyone get the correct dx.
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium. 10/10 MUD 10/10/13 Now no PNH or AA. Mixed Chimerisim |
#2
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Hi Heather,
Just to put something in to confuse the issue further - my husband has MDS and has gone from hypocellular to hypercellular and now has normal cellularity. We also were told that the location of the sample could affect it as well - I assume that is what the islands are about. But I don't think it can necessarily be a definitive way of getting a correct diagnosis. These are strange diseases to say the least. I wish you the best. God Bless, Sally |
#3
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Yup, I too was told that marrow could be patchy (their term). My sons first three biopsies were taken from his right hip, the last one from his left.
The ones from the right side were: 20%, <20%, 5%. The one from the left side was 30%. Fortunately his counts seem to support the 30%. I'm sorry your husband is the other way.
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Edith, mom to Eric, dx 2/11 at age 15 with SAA, began ATG/CsA 3/11, switched to Tacrolimis 8/11, off all meds 9/11 and is now considered to have bone marrow failure not otherwise specified. |
#4
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I can't remember the cellular it's but my reports went from hyper to normal to hypo.
The doctor didn't even think the different results was worth commenting on and I never asked why the results differed. Regards Chirley |
#5
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Sally yes you are correct that is what I mean by "islands",location being a factor.
Edithr its funny the little terms they choose Im happy your sons was the highest Sally and chirley I'm happy to hear the normal results! great news! Sally what I mean by correct dx is that my husbands first bmb did not show him as aplastic so he was not being treated as a pt w AA. Not given treatment options that an AA pt would need to choose from. But his blood counts had been very dangerously low. We were in watch and wait for the Solaris to kick in for PNH. Solaris is not shown to elevate other blood counts so that was only helping him w hemolysis. Frustrating watching blood counts so low and the effects they had on my husband. His Dr at the time would refer back to first bmb thinking well he only has PNH so things should get better... Then we got a second oppion and a second bmb. I understand though why the first Dr thought what he did. Now we know and my husband is on the road to recovery! God is good
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Heather, wife of Ronald 36; dx PNH 2012; Dx VSAA 2013; eculizumab(Solaris) hATG 2/20/13 cyclosporine 400 mg daily. 37 units RBC and 15 units of platelets. Post BMT -pentam,vorconizole,valtrex, valcyte, actigall, Pepcid , prograf, magnesium. 10/10 MUD 10/10/13 Now no PNH or AA. Mixed Chimerisim |
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