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MDS Myelodysplastic syndromes

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Old Wed Feb 14, 2018, 01:07 PM
rich7 rich7 is offline
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MDS Questions

Hello,

I am a 40 year old male and my recent BMB shows moderately hypocellular marrow at 30-40 percent with mild myeloid hypoplasia. Also, it shows mild erythroid megaloblastoid changes and mild megkarycoytic dysmorphic features.

My blasts are 2 percent, WMB is low 3.2, basophils high at 1.2, neutrophil low at 1.5. My RBC is 4.88 and platelet value at 209 while my HGB is 15.8. My WBC three to four years ago hovered around 8.

I initially went to Mt. Sinai after referred for possible Polycythemia Vera which is ruled out and now they feel it is MDS. It's been 4 months and no answers and they sent my sample back out for more in-depth testing.

I have extreme fatigue, always cold, constant pruritus, chest pain, and general weakness. So I am here asking if anyone has any insight after seeing my results what to expect or if anyone has similar findings and what your situation is? Can I get help decoding these results?

Thank you all

Last edited by rich7 : Wed Feb 14, 2018 at 02:10 PM.
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Old Thu Feb 15, 2018, 01:38 AM
DanL DanL is offline
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Rich7,

I am sorry that you are in limbo about your condition currently. It can be frustrating and nerve-wracking. I was initially diagnosed with ITP due to low platelet counts and otherwise normal counts, but my platelets were dysplastic, or abnormal once we completed the bone marrow biopsy.

Anything that I mention here is solely based on my experience, observations, and research on MDS and blood disorders. I am neither a doctor, nor a researcher, nor scientist of any kind, so please take any information with these disclaimers in mind.

MDS is very rare at your age (and mine - i was diagnosed at 36), Without prior treatment for some other cancer. De Novo MDS under the age of 60 is pretty uncommon, but does happen.

Dysplastic cells can be caused by other immune related problems, or even vitamin deficiency, so a diagnosis may be difficult to confirm without clear markers of MDS, such as cytogenetic changes, gene mutations, or very clear dysplasia in more than 10% (i think) of cells analyzed.

The extreme fatigue, pruritis, chest pain, and weakness, doesn't seem to be typical for a person with such high RBC and HGB counts, but they are common in people with low counts.

As for deciphering results? HGB is solidly normal, as are RBC and platelets. WBC is a little low, but they fluctuate greatly in response to viral infections, bacterial infections, immune issues, etc. As an example, within the past month my whites have been from 4500 (low normal) to 15000 (elevated), as i was fighting an infection that then was treated with antibiotics and brought the count back down. Viral infections can really eat away white blood cells. Blasts at 2% in the marrow falls within the normal range (anything less than 4% is generally considered normal). 2% in the peripheral blood is considered a poor sign.

Hypocellular marrow is atypical in mds, but does occur in about 15% of cases, normo-cellular and hyper-cellular is more common. The megaloblastoid erythroid cells means that red blood cells are making it into the blood stream too early in the maturation process. mild megakaryoctic dysmorphic changes indicates a problem with either the creation or maturation of your platelets.

Just looking at what you provided, it appears that there is some stress on the marrow, but the cause is uncertain. Many blood diseases are determined by process of elimination, meaning that they are diagnoses of exclusion - which sometimes means a lengthy process.

Four months seems like a long time to get results to me. If you can, get a copy of your biopsy and peripheral blood smears to a center that specializes in blood diseases to help move the process along for you. This shouldn't take any more than 3 weeks based on my experience.

I hope that you get answers soon.
__________________
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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