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#1
Sun Oct 15, 2017, 02:45 PM
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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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#2
Sun Oct 15, 2017, 05:48 PM
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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", MUD HSCT May 7, 2019.
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#4
Mon Oct 16, 2017, 01:32 AM
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MaryMel,
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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#5
Mon Oct 16, 2017, 05:56 AM
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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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#6
Mon Oct 16, 2017, 09:10 AM
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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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#7
Mon Oct 16, 2017, 04:15 PM
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I am so sorry to hear of your loss. Death is so hard on those left living. Peace to you and yours.
__________________
58 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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#8
Mon Oct 16, 2017, 09:19 PM
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MaryMel,
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. Neuropathy over 80% of body.
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#9
Mon Oct 16, 2017, 10:13 PM
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I'm so very sorry for your loss, Mary.
__________________
Joanne, 65F, 8/17 dx Primary MDS-EB1, Pancytopenia; 6/19 MPN w/CMML characteristics, dr calling it AML even w/blasts <20%; 7/19 Induction w/Vyxeos resulting in complete remission with incomplete blood count recovery.
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#10
Tue Oct 17, 2017, 07:53 AM
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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. 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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#11
Tue Oct 17, 2017, 12:08 PM
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What an enormous loss. Sending love to you and your family.
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#12
Tue Oct 17, 2017, 05:02 PM
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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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