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MDS Myelodysplastic syndromes

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  #1  
Old Wed Jan 13, 2016, 06:03 PM
carrieridge carrieridge is offline
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Join Date: Jul 2014
Location: Bellflower, Ca
Posts: 30
good luck and best wishes to everyone

this isn't the board for me but I wish you all good health. any recommendations from anyone looking for a more active board

thanks
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  #2  
Old Wed Jan 13, 2016, 07:03 PM
Neil Cuadra Neil Cuadra is offline
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Location: Los Angeles, California
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carrieridge,

I hope you and your husband find what you're looking for and get the information and support you need.

You might try the LLS Blood Cancer boards, which can be fairly active.
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  #3  
Old Wed Jan 13, 2016, 09:39 PM
bailie bailie is offline
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Join Date: Dec 2013
Location: McMinnville,OR
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carrieridge, I would like to know what you are looking for in a forum? More technical information, or what? I think part of the problem might be that there are so many diverse situations with MDS, or any of the blood diseases, that it is sometimes difficult to find others on a similar pathway. Thank you for all of your previous comments and I wish both of you the very best.

p.s. If you do find another forum that you find useful (more active) could you report back to us?
Thank you.
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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 Thu Jan 14, 2016, 06:36 AM
Cheryl C Cheryl C is offline
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Location: Lake Macquarie, Australia
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I've tried the English one but it's nowhere near as active as this one so I rarely access it.
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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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