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#1
Tue Jan 15, 2013, 02:28 AM
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Survival Birthday-22 years
This week is my survival birthday. I have made it 22 years post diagnosis.
 I am so happy to be here. I am also irritated that I still have this stupid disease. I am so very blessed and grateful. 
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#2
Tue Jan 15, 2013, 04:42 AM
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Wow - thats really something, keep going strong!
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Sandi, partner of Paul 62, diagnosed MDS Intermediate 2; July 2012. Pancytopenia, Cytogenetics -7 +8 Chromosomes. Low Blast cell count. Currently on EPO & G-CSF and having great response. MUD found will be admitted to Royal Perth Hospital 27 March 2013 to start SCT process.
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#3
Tue Jan 15, 2013, 08:47 AM
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Congratulations! Your news is very comforting, encouraging and positive to read!
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Lori, female age 53 dx MDS-RAEB-II 15% blasts 10-2010. Induc Chemo 10/14/10 for 7 days - results unacceptable so 5 additional days chemo. Complete Remission 12/10/10!! SCT 1-11-11 remission achieved!!! BMB 1-29-11 100% Donor! cgvh eyes,skin (Caringbridge.org/visit/loripatrick)
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#4
Tue Jan 15, 2013, 12:34 PM
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Quote:
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RP, Daughter of SK age 66, diagnosed MDS July 2012
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#5
Wed Jan 16, 2013, 08:07 PM
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Lovely of you to let us all know how long you have survived with MDS, especially since most of the prognoses for different types of MDS are pretty grim. Thanks for the encouragement and hope!
I'm really interested to know what type of MDS you have?
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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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#7
Tue Jan 22, 2013, 06:03 PM
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Thrilled for you especially since I am told the stats say I have 5 years! I wonder if you are having treatments or has your disease been stable always? I'm so happy for you.
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DX MDS RA Low Risk August 2012. DX Changed to MDS RAEB1. Progressed to AML July 2013. Participated in clinical chemo trial CPX351 and relapsed four months later in March 2014. Maintenance chemo -VIDAZA (AZA) stopped after 4 rounds. Awaiting full report from BMB.
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#8
Tue Jan 22, 2013, 10:56 PM
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Recent French analysis of IPSS-R from ASH 2012...
There is a brief summary posted today on the MDS Beacon Site that has updated overall survival for some higher-risk patients treated with Vadaza.
 In summary "... median overall survival was 31 months for intermediate-risk patients, 18 months for high-risk patients, and 10 months for very high-risk patients ... using only the chromosomal abnormalities criteria of the IPSS-R, they also found ... median overall survival was 22 months for patients with good chromosomal abnormalities, 12 months for patients with intermediate chromosomal abnormalities, 15 months for patients poor chromosomal abnormalities, and 7 months for patients with very poor chromosomal abnormalities."
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Ric: Low-risk MDS (blasts <4%); 4 cycles Revlimid no positive response; PRBC transfusion dependent; so far, 392'units' over 8 3/4 years; BMB #4 (15/04/01) shows evolution to AML (blasts 20-30%  ) 47,XY,del(5) (q22q35),+21[24][cp24]/46,XY(1).
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