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  #1  
Old Thu Nov 17, 2016, 07:16 AM
Sue&Dave Sue&Dave is offline
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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!
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  #2  
Old Thu Nov 17, 2016, 12:50 PM
rar rar is offline
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I had a transplant from my sister at age 73. I was in hospital for about a week. Transplant went smoothly and I felt pretty good after a week. I spent 3 months near the hospital and went home. Two days after arriving home I was back in the hospital with graft vs. host for 2 months. I couldn't eat for 3 months. They told my wife to prepare for the worst that I probably was going to die. They didn't tell me so I defied the odds. Now 2.5 years after transplant I have regained my strength and am doing fairly well. I still have GVHD and have a team of specialists who are doing a good job of managing the symptoms of GVHD. My oncologist says I am doing very well and what they did was to trade a fatal cancer for a number of minor problems that can be controlled and that will be a lifetime struggle. I made the right choice in having the transplant.

Check with the social worker at the hospital for housing before and 3 months after transplant. I had 2 options. Brent's place, a private organization, provided us an apartment for the duration of my stay free of charge. The second option was the VA which provides free housing to veterans and their family with no limit of length of stay.

I was given the option of cord blood if a donor could not be found and was told the survival rate was comforbale to a MUD transplant. Fortunately I had 3 sisters who matched and 4 brothers who didn't.

Ray

Last edited by rar : Thu Nov 17, 2016 at 12:54 PM. Reason: add info
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  #3  
Old Thu Nov 17, 2016, 01:58 PM
bailie bailie is offline
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Sue&Dave, you said, "our initial thought was to transplant while he was still relatively healthy". I can't agree more. If a SCT is in the future, timing is very important. Are there any quality locations closer to home than Sloan Kettering for the SCT? My transplant was about 1 1/2 hours from our home and my stay in the hospital was 17 days and 80 days in the apartment following transplant. We were required to live within 20 minutes of the hospital. There is a lot of information available about different transplant hospitals. We wish you the best.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.

Last edited by bailie : Sat Nov 19, 2016 at 11:33 AM.
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Old Sat Nov 19, 2016, 01:41 AM
Debbie W Debbie W is offline
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We know two people who have undergone cord

Quote:
Originally Posted by Sue&Dave View Post
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!!!
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Debbie, wife of Mike age 58, diagnosed RAEB 2 April 2010. Initial blast count somewhere between 10-15% then 20% after two treatments of Dacogen. Completed induction therapy 8/2/2010. BMB 8/31/10 - 4% blasts. SCT 10/1/2010. Relapsed in 10/2014, second transplant from same donor on 12/31/2014.
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  #5  
Old Sat Nov 19, 2016, 10:07 PM
Cheryl C Cheryl C is offline
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I met someone in the infusion/transfusion ward last Thursday who had a cord transplant which lasted 8 1/2 years. He then had an autologous transplant, which only lasted 18 months. Both were due to no match being found. He is now on chemo and hoping to go into remission so he can try for an allogeneic transplant. He is probably in his early 50's.
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Dx MDS RAEB 10% blasts + hypogammaglobulinemia, Sep 2011. Jan 2012 BMB - blasts down to 2% w/out treatment so BMT cancelled. Re-diagnosis RCMD. On watch and wait since Feb 2012. IVIg 5-weekly. BMB Feb 2014 - no blast transformation. 2018 still stable.
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  #6  
Old Sun Nov 20, 2016, 09:49 PM
bailie bailie is offline
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Article about cord blood transplants.

http://ehelth.org/cord-blood-transpl...-for-leukemia/
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #7  
Old Tue Nov 22, 2016, 01:15 PM
Sue&Dave Sue&Dave is offline
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Thanks all. Honestly I think the cord blood transplant (so long as you survive to the initial grafting) is an option with less side effects (GVHD). Among the things that got us second guessing our original transplant decision was when we asked the transplant doc what the 100 day survival rate was - she said, 'do you really want to hear that scary number?' and we also consulted with our original MD Anderson doc and he basically said if the donor was a perfect related/unrelated conventional donor it would be easier to support going for transplant directly. In the case of cord, he would favor starting HMA therapy and decide on transplant based on the response. As far as finding a center closer to home, yes there are centers closer but I don't think they are quite as experienced with regard to cord blood as MSK. Plus I'm not sure how many times I can keep moving him from doc to doc.
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