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MDS Myelodysplastic syndromes

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  #1  
Old Fri Jul 22, 2016, 05:14 PM
GAK GAK is offline
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New to all of this--BMT insights
Hi, I'm new to this forum and it's encouraging to know that there are others going through all of this. I'm scheduled for a BMT visit next week to get the process started and wondering if there are others out there who would be willing to help me understand what to expect. I'm Asian and they say finding a match could be more difficult and take longer also.
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  #2  
Old Fri Jul 22, 2016, 07:24 PM
bailie bailie is offline
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Welcome to the forum! If you have a chance to go through the archives in this forum you will be able to learn about many experiences. You will quickly find out that all experiences are not the same. Let us know what your situation is regarding diagnosis, lab results, age and how you are feeling. We wish you the best.
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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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  #3  
Old Sat Jul 23, 2016, 01:43 AM
GAK GAK is offline
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Thanks Bailie,

I'll start looking through the forum discussion and will also come back and post more of my details for better counsel. First time I've joined a forum, actually amazing to know there are others out there.
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  #4  
Old Mon Aug 1, 2016, 12:38 PM
kyis kyis is offline
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I too will be transplanted soon. Day zero is set for August,18. Matches must be getting better. I am half Asian and had 16 perfect matches. Best of luck
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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 Mon Aug 1, 2016, 01:33 PM
GAK GAK is offline
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Thank you
kyis, many thanks for your post. This is very encouraging. They are just starting the process for me to find a match. Awesome that you have 16 perfect matches. I wish you the best and please stay in touch. GAK
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  #6  
Old Tue Aug 2, 2016, 02:51 AM
Cheryl C Cheryl C is offline
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Location: Lake Macquarie, Australia
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What is your diagnosis GAK?
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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  
Old Tue Aug 2, 2016, 01:11 PM
GAK GAK is offline
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Hi Cheryl,

My Dx is MDS RAEB1, 8% blasts, ANC 400, Hbg 4.7 (now transfused), platelet 106. I have meaningful marrow fibrosis and they are putting me on the "fast track" to BMT.

Thanks for any thoughts
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  #8  
Old Wed Aug 3, 2016, 01:21 AM
Cheryl C Cheryl C is offline
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Location: Lake Macquarie, Australia
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Hi Gak - I'm sorry you've ended up joining the MDS club. I hope a match can be found for you promptly.

There are some very helpful people on this forum so keep posting!
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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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