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MDS Myelodysplastic syndromes

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Old Mon Apr 1, 2013, 09:10 PM
KathyM KathyM is offline
Join Date: Mar 2013
Location: Philadelphia, PA
Posts: 23
donor backed out

First I want to thank everyone for their support.

We found out today that my husbands donor has changed his mind. Dennis was scheduled to have his port in this Friday and then be admitted for induction chemotherapy Monday April 8th.

We are sick about it.

The coordinator says there is another donor who is a 50 yr old male, same blood type, 10/10 match. He has to do some testing now and hopefully this will only push things back a week.

I know he is fortunate to have a backup donor, its just the mental anquish..the waiting is really draining...now I completely understand why this has to be annoymous. I'm not having very nice thoughts about the 19 yr old backing out.

Thanks for letting me vent.
Kathy, wife of Dennis (58 yrs old) diagnosed October 2012 w/MDS; bone marrow biopsy confirmed significant fibrosis;blast cells of 5%-10% of total cells, high risk refractory anemia w/ excess blasts (RAEB1); 3 cytogenetic markers; +1, -7, and +21
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Old Mon Apr 1, 2013, 09:16 PM
sstewart09 sstewart09 is offline
Join Date: Feb 2013
Posts: 65

I'm so sorry this happened to you. I can unfortunately sympathize as we had a donor back out as well. We looked at it like that person wasn't meant to be our donor. Our next one pulled through and we are on the road to recovery. Fingers crossed for your family! Everything happens for a reason
Samantha, wife of Joe age 34; diagnosed vsaa 2012; MUD BMT February 2013
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Old Mon Apr 1, 2013, 09:23 PM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,514
Kathy and Dennis,

I can't imagine someone doing such a thing when somebody else's life is at stake. I thought donors are carefully screened and repeatedly asked to make sure this doesn't happen but as you and Samantha (sstewart09) learned the hard way, it sometimes does. I suppose there could be a family emergency or sudden health change behind it, but this is awful for you no matter what the reason. Thank goodness it was before chemo began.

The new donor is probably in a different location, so it'll be a different crew who did the screening. They'll no doubt get the job done this time. And an adult is more likely to be in a stable place than a teenager so I think you can trust this donor to come through for you.
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Old Tue Apr 2, 2013, 06:59 AM
MDSPerth MDSPerth is offline
Join Date: Sep 2012
Location: Perth, Western Australia
Posts: 74
I read your post after starting a new thread under 'transplants'. I cannot begin to understand what you must be going through and my heart goes out to you.

Paul is now five days into chemo with the final stronger does tomorrow. We know the cells will be flown in fresh from overseas. I will now be having nightmares that all is safe.

I hope Samantha is correct in that everything happens for a reason. I am sure the fifty year old will be a better bet for you.

Best wishes
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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Old Tue Apr 2, 2013, 08:58 AM
AngieA AngieA is offline
Join Date: Sep 2012
Location: Decatur GA
Posts: 15
I'm so sorry. That scares the hell out of me! My husband goes in this Saturday to start the chemo/radiation A donor backing out after that is done would be his death sentence! I pray that the back up donor is good and you will proceed next week.
Angie, wife to Bill age 65; Diagnosed MDS May 2012; Post mini MUDD almost 2 years. Has some GVHD in mouth, otherwise doing well.
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Old Tue Apr 2, 2013, 10:25 PM
DebS DebS is offline
Join Date: Mar 2013
Location: IL, WI
Posts: 154

I am so sorry to hear about this. It is bad enough that people have to deal with this disease in the first place, let alone throw in obstacles!

I hope things work out for you and your husband soon. I tend to agree that sometimes things happen for a reason. Here's hoping that the "real" donor will be a winner!
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