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AA Aplastic anemia

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  #1  
Old Wed Feb 25, 2015, 11:33 AM
rukalukavina rukalukavina is offline
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New diagnosis: Anaemia grav. MPN. Ph-

So, today I got this diagnosis. I'm pretty confused.
I know that MPN stands for myeloproliferative neoplasms, but what does Anaemia grav. MPN. Ph- actually means? Is this a transition to MDS or some kind of leukemia?
Please, anybody who knows for sure what this actually is I would appreciate any help.
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Diagnosed with AA in 2006; on CyA 2006-2014; treated with rATG in 2009; relapse in march 2011, high dose CyA + tapering - success (all values normal); low values in 2015; discontinued CyA, rATG+CyA December 2015; Working full time as of June 2016: CyA tapper to this day.

Last edited by rukalukavina : Wed Feb 25, 2015 at 11:33 AM. Reason: MPN.
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  #2  
Old Wed Feb 25, 2015, 02:22 PM
Neil Cuadra Neil Cuadra is offline
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Quote:
Originally Posted by rukalukavina View Post
So, today I got this diagnosis. I'm pretty confused.
I know that MPN stands for myeloproliferative neoplasms, but what does Anaemia grav. MPN. Ph- actually means? Is this a transition to MDS or some kind of leukemia?
Please, anybody who knows for sure what this actually is I would appreciate any help.
I don't know the terminology that doctors in your country use, but my guess is that "anaemia grav." means that you are seriously anemic (lacking red blood cells) and that "MPN. Ph-" means that you have a myeloproliferative neoplasm that has been found not to have the "Philadelphia chromosome" problem.

As you've probably read, MPNs are a range of bone marrow diseases characterized by excess numbers of cells. What it means for you depends on the specific classification. The "Philadelphia chromosome" is a particular genetic problem, where genes of chromosome 9 and chromosome 22 have changed places, that is useful in classifying MPNs. Having the Philadelphia chromosome problem (being "PH-positive") strongly correlates with having chronic myelogenous leukemia (CML).

You are PH-negative, so you have a different classification and not CML, but they haven't yet told you (so they may not have determined) which PH-negative classification. That's the next thing you'll want to know, since that will determine the treatment you might need and the overall prognosis.

One PN-negative MPN is polycythemia vera (PV, characterized by red blood cell overproduction). Another is essential thrombocytosis (ET, characterized by platelet overproduction). A more serious PH-negative classification is primary myelofibrosis (PMF), with overprodution of stems cells in the bone marrow. I hope they can narrow down your diagnosis soon.

You asked about MDS and leukemia. The connection to these other bone marrow diseases is that MPNs can sometimes evolve into myelodysplastic syndromes (MDS) or acute myeloid leukemia (AML).
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Old Wed Feb 25, 2015, 03:23 PM
rukalukavina rukalukavina is offline
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Thanks for a prompt reply, Neil.
Next Wednesday I presume that they'll give me more precise diagnosis, since that's the next appointment with my hematologist.
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Diagnosed with AA in 2006; on CyA 2006-2014; treated with rATG in 2009; relapse in march 2011, high dose CyA + tapering - success (all values normal); low values in 2015; discontinued CyA, rATG+CyA December 2015; Working full time as of June 2016: CyA tapper to this day.
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Old Wed Mar 4, 2015, 05:37 AM
rukalukavina rukalukavina is offline
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You won't believe this but my "doctor" mixed diagnoses in my release papers. So, nothing has changed, I'm still AA but my platelets are pretty low, ~40.
Drawn blood today, feeling so fatigue, hope this is just a normal reaction to a hospital, which I hate going, seeing all those sick people makes me worse.
Feels like I should be in hospital, lying in bed, in a sterile room. I'm so sick of this "tiredness".
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Diagnosed with AA in 2006; on CyA 2006-2014; treated with rATG in 2009; relapse in march 2011, high dose CyA + tapering - success (all values normal); low values in 2015; discontinued CyA, rATG+CyA December 2015; Working full time as of June 2016: CyA tapper to this day.
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Old Wed Mar 4, 2015, 04:10 PM
Neil Cuadra Neil Cuadra is offline
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I hope they have your diagnosis settled now.

Aplastic anemia is still a lot to deal with. If you find out your absolute neutrophil count from your doctor, then since you also know your platelet count you can judge how severe your AA is by using the Types of Aplastic Anemia guidelines.

It's ironic that when you have low blood counts and go to the hospital, the first thing they do is take blood out of you! (I remember one visit where researchers asked my wife if they could take some blood samples. She said OK, and they filled 22 tubes(!), leaving her rather weak. It didn't take long for her to recover, but we were sure surprised at how much they took.)

Please let us know what the doctor advises you to do, or what treatments are suggested.
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  #6  
Old Sat Mar 7, 2015, 06:52 AM
rukalukavina rukalukavina is offline
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Red face

Oh, yes, that's so typical... Sometimes I joke around with nurses that when they finish drawing blood there will be nothing left for me

So, back to the point. My doc gave me OHB12 ampules to raise B12 in blood.
Anyway, here's my partial BC:
WBC: 2,53; ABN: 0,8; Hgb: 129; Htc: 0,39; PLT: 41; B12: 116; active B12: 43,1; folic acid: 11.
She also prescribed me Aciklovir for Herpes Simplex.
I'm seeing her on Wednesday again, I assume by that time she will get the virology lab results back.
Had a bad cough 2 months ago, so she thinks it's some virus causing this depletion of blood counts. We can't even get sick like regular people
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Diagnosed with AA in 2006; on CyA 2006-2014; treated with rATG in 2009; relapse in march 2011, high dose CyA + tapering - success (all values normal); low values in 2015; discontinued CyA, rATG+CyA December 2015; Working full time as of June 2016: CyA tapper to this day.
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