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Bone Marrow Failure Causes, treatment approaches, terminology, related diseases

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  #1  
Old Thu Jul 19, 2012, 01:53 AM
gregdeklerk gregdeklerk is offline
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Low HB and high ESR

The docs seem puzzled by my high ESR. It is 125 at the moment. They keep looking for inflamation, but I don't have any.

Has anyone else had a high ESR and what was the cause of it?
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  #2  
Old Thu Jul 19, 2012, 02:18 AM
Chirley Chirley is offline
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Hi, yes my ESR was around 100 or higher for the first few years of anaemia. It finally became normal when I had Vidaza and has never been that high again. The reason for it being high was never found.

Regards
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #3  
Old Thu Jul 19, 2012, 03:30 AM
gregdeklerk gregdeklerk is offline
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Hi Chirley

How low did your HB go? Mine is at 6.4 at the moment and I am due for a transfusion tomorrow. My HB was normal Feb last year and my white cells and platelets are still normal. I have the Drs confused.
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Old Thu Jul 19, 2012, 04:03 AM
Chirley Chirley is offline
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My lowest Hb was 53 but that was before I was being monitored regularly. I ended up having three units of blood every two weeks before I started the chemo. On chemo of course the blood requirement was higher.

Now that I'm having IV copper replacement I haven't had a transfusion since March 17th this year. I had been having transfusions since 2003. I have a normal Hb now and have started having blood taken off to reduce the increased iron in the liver which is caused by numerous transfusions.

Have you had a BMB?

Regards

Chirley
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion

Last edited by Chirley : Thu Jul 19, 2012 at 04:08 AM. Reason: Posted accidentally before finishing.
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  #5  
Old Thu Jul 19, 2012, 04:31 AM
gregdeklerk gregdeklerk is offline
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Hi Chirley,

I have had one BMB. The report says hypercellular with erythroid hyperplasia and megaloblastic maturation. The blood morphology is hypersegmented neutrophils and oval macrocytes. Doesn't sound good!

I have to have another soon.

It looks like I am transfusion dependant too.

I am feeling rather emotional at this point, but I guess it will get better with time.
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  #6  
Old Thu Jul 19, 2012, 05:53 AM
Chirley Chirley is offline
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Hi, I'm not as educated in this area as a lot of others here. The BMB doesn't sound particularly worrying.

Have you had all your nutritional studies done? Things like B12/ folate, iron studies zinc, copper etc. Perhaps you need a gastroscopy/colonoscopy as well, these are tests that every one should have at some stage anyway.

I'm not trying to second guess your doctor and I'm sure that any competent hematologist will ask for a heap of tests to try and establish a diagnosis.

In the meantime, when you first start having medical issues it's a wrrying time but after a while, you realize that your not going to drop dead as soon as you get a bad diagnosis. You are exactly the same person 5 minutes before being told a diagnosis as 5 minutes after. It seems as if a vast majority of bone marrow problems either have effective long term treatments or take quite some time until they impact you negatively.

Best of luck, hope you get some answers soon.

Chirley
__________________
Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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  #7  
Old Thu Jul 19, 2012, 02:35 PM
Hopeful Hopeful is offline
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Hi greg,

Chirley makes a good point that you could have a B12 or folate deficiency going on. Check out this definition of megoblastic anemia due to B12/folate defiency.

http://www.uaz.edu.mx/histo/patholog...w_megalobl.htm

You seem to fit it well with hypersegmented neutrophils, oval macrocytes, and megaloblastic maturation. B12/folate is required to produce RBC's. So, perhaps your bone marrow is in overdrive trying to make the RBC's (leading to erythroid hyperplasia), but the process isn't effective because of the B12/folate deficiency. Some people aren't able to absorb B12 from foods (intrinsic factor). Perhaps your doctor can test for this as well.

An elevated ESR is very non-specific and shouldn't add to your stress.

Good luck - I hope your doctors can figure this out soon!
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52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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  #8  
Old Mon Jul 23, 2012, 02:20 AM
gregdeklerk gregdeklerk is offline
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Thanks guys.

It is not B12 and folate. I was on treatment for this and there was no response. So I am a little worried.

I had another BMB on Friday and should get the results this week. Also another 4 units of blood.

This is driving me crackers!!!!
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  #9  
Old Fri Nov 30, 2012, 11:37 AM
gina66 gina66 is offline
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symptoms?

What other symptoms do you have
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