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MDS Myelodysplastic syndromes

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  #1  
Old Sun Mar 23, 2014, 05:54 PM
Shazza Shazza is offline
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Conflicting Bone Marrow Biopsies

Is it usual to have conflicting bone marrow biopsies?

These are the findings from my 2:

May 2013
10% cellularity with all 3 haemopoietic cell lineages represented but reduced.
Granulopoiesis shows maturation to neutrophils.
Erythroid islands are dispersed.
Megakaryocytes are hypolobulated & dysplastic.
Reticulin is normal.
CD34 is negative.
p53 is negative.
CD117 is staining mast cells only.
CD61 confirms dysmegakaryopoiesis.
The megakaryocyte abnormalities raise the possibility of a hypoplastic myelodysplastic syndrome.

October 2013
10-15% cellularity with all 3 haemopoietic cell lineages represented & showing normal maturation.
Granulopoiesis shows maturation to neutrophils.
Erythroid islands are slightly dispersed.
Megakaryocytes are present in normal numbers & show normal nuclear morphology.
Reticulin is normal.
CD34 is staining <1% of all nucleated cells.
p53 is negative.
CD117 is staining mast cells & proerythroblasts.
CD61 demonstrates occasional small forms.
There is no convincing myelodysplasia.

Can anyone tell me if MDS can come & go?

Has anyone else had conflicting biopsies?

I have been neutropenic for about 4 years with neutrophils going up & down between 0.8 to 1.7.
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  #2  
Old Sun Mar 23, 2014, 06:55 PM
Neil Cuadra Neil Cuadra is offline
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Shazza,

I see that in May they found your partially matured platelet cells were lacking in segments and had an abnormal structure (megakaryocytes hypolobulated and dysplastic). In October neither problem was detected.

Your low cellularity means that your bone marrow biopsies are producing only small samples. Cell abnormalities may be present in one sample and not another even if your marrow condition hasn't changed.

MDS can appear and disappear without much explanation, but I think that's uncommon. It would be nice to think your MDS is gone, but that might not actually be the case. I'm sorry that you can't be certain. What the lab results mean is an excellent question for an experienced hematologist.
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Old Tue Mar 25, 2014, 02:33 AM
Shazza Shazza is offline
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Conflicting Bone Marrow Biopsies

Thank you for your reply Neil.

Both biopsies produced 'good core lengths of 22cms' but the aspirates were too haemodilute to diagnose.

At 53 I gather my cellularity should be around 50%.

I'm under Kings College Hospital in London & have every confidence in their findings & they appear to be running with the second diagnosis!

However, with bone marrow cellularity of 10-15% & chronic neutropenia I am left somewhat confused.

I'm back at Kings in May & have a lot of questions for them - I'll let you know how I get on.
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  #4  
Old Tue Mar 25, 2014, 07:59 PM
Cheryl C Cheryl C is offline
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It seems your first biopsy only raised the possibility of MDS and the second was still not clearly indicating that diagnosis.

In my own experience I had chronic idiopathic (unknown cause) neutropenia ranging from mild to severe for 6 years before being diagnosed with MDS. Perhaps MDS will rear its ugly head eventually but in the mean time hopefully you will be able to live a normal life by just being careful to treat wounds/insect bites, sore throats, etc promptly.

All the best as you seek answers to your questions. There are many very knowledgeable people on this forum who may be able to help.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #5  
Old Sun Mar 30, 2014, 02:10 PM
mausmish mausmish is offline
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The two biopsies are not dramatically different. Different pathologists describe results differently.
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Karen, age 62, dx MDS RAEB-2 1/8/10: pancytopenia WBC 2.7k/Hgb 7.4/Hct 22.1/Plt 19k; complex cytogenetics -3,del(5)(q14q33),-6,+8,+mar,17% blasts. MUD BMT Johns Hopkins 11/30/10. Dx tongue cancer 8/31/12. ok now. blog mausmarrow.com
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  #6  
Old Sun Mar 30, 2014, 11:43 PM
ccnarayanan ccnarayanan is offline
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Shazza,
Have you taken a test such as FISH (fluorescence in situ hybridization) test? This can help detect chromosome abnormalities and hence the MDS subtype, if you have MDS.
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Old Wed Apr 2, 2014, 10:36 AM
Shazza Shazza is offline
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Thank you all for your replies.

Cheryl C
I was very interested to hear your personal experience. I haven't always been neutropenic so something obviously is not right.

ccnarayanan,
My Report stated 'As there was no morphological or immunophenotypic evidence of malignancy in this bone marrow sample, cytogenetic analysis would not be informative.' I suppose this meant that I wouldn't need a FISH test?

The doctor told me that bone marrow cellularity does not improve without treatment. Could it remain at 10%-15% for the rest of my life or will it decrease like everyone else. If so, how low can it go & I remain healthy?

I'm going to start a separate thread on bone marrow cellularity.

Last edited by Shazza : Wed Apr 2, 2014 at 11:04 AM.
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  #8  
Old Wed Apr 2, 2014, 12:59 PM
ccnarayanan ccnarayanan is offline
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Shazza,

You may want to take a look at this paper - http://bloodjournal.hematologylibrar...4/979.full.pdf, particularly the last paragraph.

I am not competent enough to suggest whether you have MDS or not; it can be something else. Seeking a second medical opinion might be a good idea.
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Father, 83, dx MDS RCUD (RBC) monosomy 7+del7q+del20q Feb 2014, transitioned to RCMD (RBC+platelet) Apr 2014, started Decitabine on 21-Apr-2014 at 2/3rd the recommended dosage on Regimen 2 with no response, terminally ill and transitioned to hospice care on 30-Apr-2014, passed away on 18-May-2014.
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  #9  
Old Wed Jul 30, 2014, 05:37 PM
Shazza Shazza is offline
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No Daignosis as yet

I went back to Kings in May - It appears I've had all the genetic/chromosome tests & I dont have either AA or MDS.

I asked the doctor how many people do you see at Kings with hypoplastic bone marrow like mine but who don't have chromosome abnormalities that indicate AA/MDS - he said there were no others he was aware of!

He explained that since my condition is so rare, they have no data & could not give me any information other than, I have 3 possible outcomes - AA, MDS or to remain stable.

Apparently as new tests are developed, my blood & bone marrow samples are sent off & they are actively searching for a diagnosis. Until then, I suppose I am on a watch & wait for who knows what, with 3 monthly blood tests.

I have spent the past year trawling the internet for information on my neutropenia & hypoplastic bone marrow. I've read about other peoples experiences & stories & learnt a great deal. However, I could never identify with anyone completely.

I have been fortunate to have met a straight talking doctor who says it how it is. Now I am completely confident with the diagnosis (or lack of) & am assured that they are doing all they can to come up with some more information.

As soon as they do, I'll share it on here so that any hypoplastic neutropenics with a (as yet) normal set of chromosomes will find some info.
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Neutrophils fluctuating between 0.8 & 1.7 since 2000.
Hypoplastic bone marrow (10-15% cellularity).
No cytogenetic abnormalities.
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