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MDS Myelodysplastic syndromes

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  #1  
Old Wed Dec 18, 2013, 12:16 AM
kyis kyis is offline
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More confused AA MDS Hypocellular

Not even sure which I have anymore. My doctors say MDS.
Main doctor says get the transplant when the time comes.
2nd opinion says get ATG cyclosporine if my blasts can stay under 10%.
I don't have any chromosome problems apparently.
What else should I be looking at? I get BMB every 4 months or so. Those are fun. Still working 40+ hours a week and feel fine for the most part, though I'm a little concerned about wbc at .8.
Blasts range around 4 to 9% over the last year since diagnosis.
Now they are talking about starting me on vidaza.
Anyone any thoughts would be great.
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Male 56, MDS 2008, pre SCT Hypocellular 5-30%, Normal Cytogenetics. WBC 500, anc 45, Blasts 15%, Platelets 45, HGB 7, RBCC 1.71, HCT 20.5, MCV 120. Became Transfusion dependent 3/2016. 5 cycles VIdaza started 3/14/16 which reduced Blast counts. . Marrow Transplant 9/1/16, Hereditary MDS/AML.
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  #2  
Old Wed Dec 18, 2013, 02:12 PM
Birgitta-A Birgitta-A is offline
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Vidaza

Hi kyis,
You know Vidaza is the first drug for MDS - a little more than 50% will respond. Now they combine Vidaza with other drugs for example Revlimid and get much higher response rate.

I should never start Vidaza treatment with WBC 0.8. Can't you get Neupogen or a similar drug?
Kind regards
Birgitta-A
74 yo, dx MDS Interm-1 2006, supportive treatment with txs, iron chelation and Neupogen until 2010. Thalidomide + Prednisone with positive results 2010-2013. Now trying Revlimid.
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  #3  
Old Wed Dec 18, 2013, 07:38 PM
kyis kyis is offline
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Thanks for the reply,
I've heard Neupogen raises blasts and we don't want that to happen,
But I haven't had any infections, except for my appendix.
I'm a fixit kind of guy and cut myself often, probably at least once a week. Never a problem. Just Lucky I guess.
I'm just worried that I could be treated with atg, but after blasts go above 10% I hear that's kind of off the table as results starts to diminish.
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Male 56, MDS 2008, pre SCT Hypocellular 5-30%, Normal Cytogenetics. WBC 500, anc 45, Blasts 15%, Platelets 45, HGB 7, RBCC 1.71, HCT 20.5, MCV 120. Became Transfusion dependent 3/2016. 5 cycles VIdaza started 3/14/16 which reduced Blast counts. . Marrow Transplant 9/1/16, Hereditary MDS/AML.
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  #4  
Old Thu Mar 20, 2014, 10:30 AM
kyis kyis is offline
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Join Date: Jun 2013
Location: Marin, California
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These have started showing up lately in my blood tests.
Do they indicate progression or problem?
Macrocytes have popped up over the last year or two.
They never say over 1+

Macrocytes 1+
Microcytes 1+
Polychromasia 1+
Ovalocytes,bld,ql, light microscopy 1+
Dacrocytes,bld,ql, light microscopy 1+
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Male 56, MDS 2008, pre SCT Hypocellular 5-30%, Normal Cytogenetics. WBC 500, anc 45, Blasts 15%, Platelets 45, HGB 7, RBCC 1.71, HCT 20.5, MCV 120. Became Transfusion dependent 3/2016. 5 cycles VIdaza started 3/14/16 which reduced Blast counts. . Marrow Transplant 9/1/16, Hereditary MDS/AML.
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  #5  
Old Thu Mar 20, 2014, 04:21 PM
Birgitta-A Birgitta-A is offline
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MDS

Hi kyis,
All of us who have MDS have malshaped blood cells - dysplastic blood cells.

Macrocytes are abnormally large red blood cells and microcytes are abnormally small red blood cells.

Polychromasia means variation in the color of the red blood cells.

Ovalocytes means an abberant shape form of red blood cells also called elliptocytes.

Dacrocytes means teardropformed red blood cells.

If these kinds of red blood cells have increased it is a sign of progression but I should not worry about it - it is still the HGB that is important and indicates how we are functioning.
Kind regards
Birgitta-A
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