View Single Post
  #1  
Old Thu Nov 17, 2016, 07:16 AM
Sue&Dave Sue&Dave is offline
Member
 
Join Date: Nov 2016
Location: New York
Posts: 50
No donor - Cord Blood Transplant?

Hello - Unfortunately I am new to the forum, by that I mean I wish I never had to ask these questions. Sigh. Anyhow....56 yo husband was dx'd with MDS March 2015, has yet to have any kind of treatment. We are from central New York and traveled several times to MD Anderson in Houston for the first year but found it too expensive to continue (btw, LOVE that place!) We have since transitioned to Sloan Kettering in NYC, but it is still a 4-6 hour drive to get there. Both MDA and MSK have suggested he be tested for transplant and it turns out he does not have either a sibling or unrelated match. MSK has suggested a cord blood transplant with one of our son's as a 'kicker' to bridge the gap while waiting for the cord blood cells to graft. We were on board and he was scheduled to start conditioning treatment in April when he fell and blew open a few blood vessels in his brain (we think he had had a slow leak for several months prior due to ongoing headaches). 3 brain surgeries later, 3 months in and out of the hospital and removal of part of his skull due to an infection has really opened our eyes to the reality of a transplant and neither of us are sure we can stand the rigors of another extended hospital stay, plus living in NYC for another 2-3 months afterwards. That said, we know that a transplant is the only cure and our initial thought was to transplant while he was still relatively healthy. At dx in March 2015 his blasts were 3%, a year later 3/16 they were 5% and now are at 6%. The doc says he has RAEB-1, with the ASXL mutation (I know - not good right?) She did say that right now he is 'essentially stable' so still no treatment. All his counts are low, plt: 36, white 1.8, red 3.13. Sooo..... the question is - has anyone had a cord blood transplant and what has been your experience? Or, if you haven't had a CBT but didn't have a MUD, did you have another type of transplant and how was the experience and outcome? Thanks for reading this very long post!
Reply With Quote