Marrowforums

Marrowforums (http://forums.marrowforums.org/index.php)
-   Transplants (http://forums.marrowforums.org/forumdisplay.php?f=14)
-   -   Some news and insight from all of you (http://forums.marrowforums.org/showthread.php?t=5001)

italianburrito Fri Jun 26, 2015 12:00 PM

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?

dfantle Thu Jul 16, 2015 04:33 PM

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

GoodDay5150 Mon Jul 27, 2015 01:20 PM

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.

Mario


All times are GMT -4. The time now is 01:58 AM.

Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org