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Old Sun Oct 15, 2017, 01:45 PM
MaryMel MaryMel is offline
Join Date: Oct 2016
Location: ontario canada
Posts: 2
Sad news

Hi everyone. I have been watching this forum for some time but only posted once. Unfortunately my husband passed away August 5th from complications of his transplant. I'm still having a hard time of it and find it hard to even believe sometimes. He was only diagnosed having MDS August of last year from a routine blood test and later a BMB because of low counts. He became transfusion dependant soon after of both red blood and platelets.Of his 8 siblings only his older sister was a perfect match. He was 61 and we had such high hopes. His transplant was on May 5th and everything went well until about 4 weeks after when he developed grade 4 skin gvhd. Downhill from there. I hate this disease and hope everyone on this board has a better experience.
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Old Sun Oct 15, 2017, 04:48 PM
quantpsyc quantpsyc is offline
Join Date: May 2017
Location: Leland, NC
Posts: 8
So sorry for your loss

My prayers are with you. This is a truly terrible disease, and the disease as well as the treatments are so unpredictable.
Kathleen, adoring wife of Ed 67 yo, Dx April 2017 MDS RAEB2, no chromosomal mutations, as of August 2017 only supplement therapy, living and loving each day.
October 2018 started Decitabine, "exceptional response", March 2019 expect MUD-HSCT.
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Old Mon Oct 16, 2017, 12:16 AM
Meri T. Meri T. is offline
Join Date: Aug 2016
Location: Tokyo, Japan
Posts: 127
My condolences

I am so sorry for your loss.
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Old Mon Oct 16, 2017, 12:32 AM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,487

My wife and I send our sympathies. When we read what you posted about the problems getting your husband ready for the transplant, we so hoped it would work out. It's so sad to hear that you lost the chance to be with your husband for many more years.

We hope the memories of better times with your husband will help you cope with this awful loss.
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Old Mon Oct 16, 2017, 04:56 AM
lisa3112 lisa3112 is offline
Join Date: Jun 2016
Location: Melbourne
Posts: 105
So sorry, horrible news. Why, is the only question. The human body is so complicated. Its just so unfair and unexpected when things go wrong. Xo
Now 30yr old. Diagnosed AML dec 2015 (Most likely MDS prior). Trisomy 6. Runx1 mutation also. Had induction and consolidation chemo. Marrow failure ++ so SCT on 21st of March with MUD. Married with a 1yr old!
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Old Mon Oct 16, 2017, 08:10 AM
Callie Callie is offline
Join Date: Jan 2014
Location: Fayetteville, NC
Posts: 23
I am so incredibly sorry! I wish I had some profound words to say, but...Three months later, I still can't believe my dad is gone, and actually am finding it harder, not easier, to accept every day. My heart and thoughts go out to you and everyone fighting/who have fought this battle.
Daughter of Bailie (diagnosed RAEB-2 11/13; transplant 08/14; relapse with Ph+ AML 04/15; remission until 04/17; DLI 06/17; passed away 07/11/17 at Day+1059)...the best dad a daughter could have...
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Old Mon Oct 16, 2017, 03:15 PM
Hopeful Hopeful is offline
Join Date: Jan 2009
Location: California, USA
Posts: 713
I am so sorry to hear of your loss. Death is so hard on those left living. Peace to you and yours.
52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.
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Old Mon Oct 16, 2017, 08:19 PM
DanL DanL is offline
Join Date: Dec 2010
Location: Denver, CO
Posts: 563

My sincere condolences on your husband's passing.
MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD.
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Old Mon Oct 16, 2017, 09:13 PM
JoMac53 JoMac53 is offline
Join Date: Sep 2017
Posts: 61
I'm so very sorry for your loss, Mary.
Joanne, 65F, Primary MDS-EB1, Pancytopenia, 8/17. Weekly CBC, Granix shot if ANC below 1.0.
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Old Tue Oct 17, 2017, 06:53 AM
Cheryl C Cheryl C is offline
Join Date: Dec 2011
Location: Lake Macquarie, Australia
Posts: 827
Very sad to read of your loss. 61 is too young! Wishing you comfort and strength.
Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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Old Tue Oct 17, 2017, 11:08 AM
worriedmama worriedmama is offline
Join Date: Apr 2017
Location: Austin, TX
Posts: 21
What an enormous loss. Sending love to you and your family.
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Old Tue Oct 17, 2017, 04:02 PM
Sue&Dave Sue&Dave is offline
Join Date: Nov 2016
Location: New York
Posts: 50
Mary I can only imagine how hard it must have been on you this past year. From the mind-numbing diagnosis, to trying to learn everything there is to know about this awful disease and then on to the rigors of a transplant. My heart is breaking for you and your family. My hope is that this is the last of this type of post that I will have to read - my reality is that it won't be. Hugs to you.
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