Quote:
Originally Posted by Sue&Dave
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!
|
transplants, we met them both at Hope Lodge in NYC, living in NYC for a few months is not so bad, especially when the lodging is free and you can be at a major transplant center within 30 minutes. And Sloan now runs a free shuttle, something they did not do in 2010 and Cornell is just across the street. This was my husband's second transplant at Sloan, during our first 'tour' at Hope Lodge in 2010/2011 they were doing very few cord transplants, but that changed in late 2014/2015 during our second stay after transplant. One person had a double cord with a haplo at Sloan and one of the cords became her donor. The other person had a single cord plus haplo at Cornell and her brother became the dominant donor. Generally they use the haplo as a bridge while waiting for the cord to take hold, but as noted above that does not always happen. They both just celebrated their two year anniversaries and are doing very well. One back to university and the other working full time.
I agree with bailie that if the docs feel the only cure is a transplant then doing it sooner rather than is a good idea. But if he is stable and can avoid transplant that is also fine especially considering what you have both been through recently.
Just do not be scared of staying in the city for a few months, cord transplants have taken a great leap in the past 5 years.
Just make sure the docs monitor his blood levels and if you ever have an doubts then ask questions, either from the docs or online. It never hurts to ask! Wising you the best!!!