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Old Fri Jun 26, 2015, 01:00 PM
italianburrito italianburrito is offline
Join Date: Apr 2015
Location: VB
Posts: 61
Some news and insight from all of you

So my dad was unable to be matched on the international registry and will be moving forward with a cord blood transplant. Dr. M says its because we are a minority (Italian) and finding a match is near impossible. We have contacted relatives in Italy and family to bethematch.org in hopes that SOMEONE can be a match. I am extremely disappointed and tired of receiving bad news after bad news. For the people that have had this type of transplant, How are you doing now and what was your treatment protocol? Total body radiation or different chemo? Did you eventually find a donor?
Daughter of father diagnosed with MDS RAEB-II intermediate risk due to normal cytogenetics. Blasts at 13% peripheral blood at diagnosis with no cytopenias. 6 cycles on Vidaza then on to SCT at Duke. BMT from my brother and now showing signs of relapse. DLI in the works.
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Old Thu Jul 16, 2015, 05:33 PM
dfantle dfantle is offline
Join Date: Jan 2012
Location: bellevue, wa
Posts: 150
So sorry your Father hasn't found a match yet. In addition to what you've already tried, have you reached out to the local Italian community to host donor drives thru Be The Match? This could not only benefit your father, but the entire Italian community as well. And maybe it could go viral so these could be held all over the world...

My donor was found on the Int'l Registry & signed up/was swabbed thru a group that was started 20 years ago for my ethnicity. To date this organization has registered over 250,000 possible donors. The actual event my donor was swabbed at 4 years ago was part of a donor circle started for a baby who needed a transplant & didn't have a match. The donor circle for this baby went viral & people signed up all over the world. The reach of groups like this started for patients who don't have matches can be amazing!

For all transplants & especially cord blood, recommend your father has this at a center with a lot of experience, like Fred Hutch/Seattle Cancer Care Alliance or maybe even the NIH... I'm sure there are others... .

Best of luck
Age 54; DX Heavy Chain (AH) Amyloidosis 6/10; AutoSCT 3/11; Amyloidosis remission 6/11; DX SAA 7/11; Horse ATG 3/12; Mini MUD SCT 1/13; Recovered from SAA 5/13 & feeling great
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Old Mon Jul 27, 2015, 02:20 PM
GoodDay5150 GoodDay5150 is offline
Join Date: Sep 2014
Location: Centennial, CO
Posts: 140
I've been told that Europe has a widespread and ever-growing database of potential donors. I will Google this later and check to see if that is so. I'm 1/2 Italian and 1/2 Polish, and from what I understand, ppl of European heritage can usually find matches, (obviously that's not always the case.) My match, from the US, was found within 4-5 mos. As far as my trans went/ goes, I had a mini-trans w/ pretty minor side-effects and some chron. GVHD. Tell your dad that we are all thinking about him.

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Update and some insight would be appreciated italianburrito MDS 4 Tue Jul 7, 2015 11:43 AM

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