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MDS Myelodysplastic syndromes

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  #1  
Old Sun Oct 9, 2016, 10:01 PM
Eva's daughter Eva's daughter is offline
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RAEB-2 How often do you have blood levels checked?

Hi all,

Anyone have a round about figure of how often should my Mum be having blood tests (with 11% blasts)?
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  #2  
Old Sun Oct 9, 2016, 10:53 PM
bailie bailie is offline
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I have had CBCs every two weeks and sometimes every three weeks for the last three years. I have charted all of these results to see if there are trends. The surprising thing for me is how much the results can change from time to time.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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Old Mon Oct 10, 2016, 06:15 AM
Cheryl C Cheryl C is offline
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Like Bailie, I have been charting my blood results (usually 4-weekly) for years now. It's interesting to compare the yearly averages and so on.

How often is your mum seeing her specialist?
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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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  #4  
Old Mon Oct 10, 2016, 11:52 PM
Eva's daughter Eva's daughter is offline
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hmmm. Mums last blood test was almost 4 weeks ago. Best ring the haematologist and check when her next one'll be.

Thanks for info, theres so much to know about this disease!
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  #5  
Old Thu Oct 13, 2016, 08:57 PM
Katehhi Katehhi is offline
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Question Tolerance Revlimid

I am over 80. Just starting 3rd round of Revlimid. Get Epo shot every two weeks. How long for positive test and do you start to feel better as time goes on? First post.
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