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MDS Myelodysplastic syndromes

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  #1  
Old Tue Mar 10, 2009, 07:26 PM
april april is offline
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Dad dx MDS, info needed please

Hi everyone,
I'm new to this forum and need some info please. My dad, aged 76 was recently diagnosed with MDS. After two unsuccessful bone marrow test, his MDS was finally typed by blood test (cytogenetics). Hypercellar bone marrow, 6% blasts, trilineage(?), deletion of short arm of chromosome 17, isochrome 17.

Luckily, third bone marrow test yielded liquid marrow so he is able to participate in clinical trial. Began clinical trial ARA-C/Sorafenib, end of Feb. Also taking Eprex (epoetin alfa) once a week.
Beginning blood counts: HBC 96; RBC 3.95; WBC 14.9; platelets 22.

Questions:
1- Does anyone know where I can find specific info on MDS chromosome 17 abnormality?
2- Do our platelets fluctate within a range from day to day or do they remain stead? Dad's platelets were 24 yesterday, but 18 four days ago. Is this a normal fluctation within a range? Or is this an increase? (however small)
3- What is trilineage?

Thanks to everyone on this site. It is comforting to find somewhere to turn.
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April; My dad dx MDS, IPSS intermed_2; started clinical trial ARA-C/Sorafenib Feb 27, bad response stopped after 2nd cycle. Started Vidaza May 18/2009.
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Old Wed Mar 11, 2009, 06:32 AM
Birgitta-A Birgitta-A is offline
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Chromosome 17

Hi april,
I am afraid chromosome 17 aberrations are dangerous: http://ash.confex.com/ash/2008/webpr...aper11037.html. Your fathers doctor is giving him strong treatment.

Platelets fluctuate much - a lot of drugs and different kinds of food can decrease platelets http://www.pdsa.org/itp-information/itp-warnings.html.

Trilineage means that all three blood lines are affected - I have it myself with very low Hb at dx and transfusion dependence since dx May 2006, low white blood cells treated with Neupogen injections since Sept 2007 and low platelets (last count 41). I try to take care of my platelets and avoid everything that could possibly harm them.
Kind regards
Birgitta-A
70 yo, dx MDS Interm-1 May 2006, transfusion dependent, Desferal for iron overload, Neupogen for low white blood cells, asymptomatic
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Old Wed Mar 11, 2009, 07:30 PM
april april is offline
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Join Date: Feb 2009
Location: ON, Canada
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Thank you

Thank you sooo much Birgitta. The abstracts are an incredible find. Thought the news is not good.
I was afraid it was dangerous. His doctor's strategy was not restrict his options/treatments. If she had started him on Vidaza and it did not work, he would not be eligible for the clinical trials. It is frustrating because it seems any course of action is a coin toss. In the meantime it is very hard to see a strong patriach become weak.

Wishing you many platelets & happy Thoughts..
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April; My dad dx MDS, IPSS intermed_2; started clinical trial ARA-C/Sorafenib Feb 27, bad response stopped after 2nd cycle. Started Vidaza May 18/2009.

Last edited by april : Wed Mar 11, 2009 at 07:49 PM.
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  #4  
Old Thu Mar 12, 2009, 05:51 AM
Birgitta-A Birgitta-A is offline
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ARA-C and Sorafenib

Hi april,
We hope that the combination of Ara-C and Sorafenib will be effective and that your father won't have adverse reactions! It's a new treatment and not many studies reported yet.
Kind regards
Birgitta-A
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