Thread: MDS Questions
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Old Sun Mar 4, 2018, 01:22 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
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Quote:
Originally Posted by rich7 View Post
Thank you all. Makes you wonder why the doctors attitude is so lax at times unless my results are not an issue. Maybe its possible that these things are no big deal without full blown symptoms? I did notice some things in doing my own research and trying to decode the BMB results and I wanted to ask what this means:
I can try and help with some of this:

dys = abnormal
poiesis = the development of

So...

Dysmegakaryopoiesis = the abnormal development of megakaryocytic (platelet precursors)

Dyserythropoisesis = the abnormal development of erythroid cells (RBC precursors)

Hypocellular marrow = less blood cells in the marrow than what is normal for someone your age.



I can't really comment on what they were looking for below in the flow cytometry report:

Quote:
Originally Posted by rich7 View Post
CD 71 shows erythroid precursors
MPO shows myeloid precursors
CD 61 shows megakaryocytes
The comments below are saying similar things as above in that there are abnormal shapes in the cells that are to become your red blood cells and platelets. Many things can cause these changes - some are more benign than others.

Quote:
Originally Posted by rich7 View Post
These are on my biopsy results along with the diagnosis section showing myeloid hypoplasia, erythroid megaloblastoid changes, and megakaryocytic dysmorphic changes.


If you have a mild number of dysplastic (abnormal) cells, the normal ones may be able to compensate. Sometimes the marrow is able to heal itself, which may be why your doctors are waiting to see how this develops.

They also may not have enough data to interpret the MLL mutation in the absence of lower counts. I am not sure that there is anything that they could do to treat you at this point, assuming they have done all the other standard deficiency and differential tests.

I can imagine that this is very unsettling - especially not doing anything! That's why many are suggesting that you get other experts involved, especially given the MLL mutation and the SLE. I consulted with multiple experts when trying to get my diagnosis. They each had invaluable contributions for tests, treatment options, and timing. If I didn't do the outside consults, I probably wouldn't be here typing this message! Knowledge is power - especially when dealing with rare conditions. The experts in this field will be eager to talk to you.


I am not a doctor but hope my experiences can help you.
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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