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  #26  
Old Mon Sep 19, 2016, 08:45 PM
PaulS PaulS is offline
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Hi Baile - I go into the hospital tomorrow for placement of the dreaded Hickman Catheter - next day starts chemo - with the actual transplant scheduled for the 26th. They harvested 10 million stem cells from my brother today - which is very exciting - I think they were only able to get 700,000 from my last donor - which contributed to delays in engraftment and my counts rising - I'm hopeful things will go more smoothly - and there is something nice about receiving stem cells from my big brother.

I"ll keep you posted.

Stay well! Best wishes to your daughter too.
Paul
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Lower risk MDS diagnosed 2012. Recurring skin nodules treated with prednisone, otherwise watch and wait. HG dropped from 11.5 to 8.7. Kept going down to 5. Vidaza didn't work. BMT from MUD on September 10 2015
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  #27  
Old Tue Sep 20, 2016, 08:44 AM
KatailS KatailS is offline
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Quote:
Originally Posted by PaulS View Post
Hi Baile - I go into the hospital tomorrow for placement of the dreaded Hickman Catheter - next day starts chemo - with the actual transplant scheduled for the 26th. They harvested 10 million stem cells from my brother today - which is very exciting - I think they were only able to get 700,000 from my last donor - which contributed to delays in engraftment and my counts rising - I'm hopeful things will go more smoothly - and there is something nice about receiving stem cells from my big brother.

I"ll keep you posted.

Stay well! Best wishes to your daughter too.
Paul
Keeping you in my thoughts and prayers today and for the coming days/months!
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Kathie - 54 yr old mother of 4, pancytopenia since 11/2014, moderate AA 8/2016, small PNH clone (now increasing), monitor bloodwork every three months
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  #28  
Old Tue Sep 20, 2016, 12:44 PM
bailie bailie is offline
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I didn't have a Hickman. I had a three lumen Neostar, I think about the same thing. One of my surprises was that the procedure didn't seem to be a problem at all. I hope everything goes very well for you. You did so well (compared to my experience) during Day -4 to Day 0, I am hoping this time you will do just as well.
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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 : Tue Sep 20, 2016 at 05:31 PM.
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  #29  
Old Tue Sep 20, 2016, 07:50 PM
Cheryl C Cheryl C is offline
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Great news about the abundant harvest of stem cells, Paul. You have everything going for you with your positive attitude. All the very best and I'll be watching for your posts.
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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. Watch and wait from Feb 2012. IVIg 5-weekly. New diagnosis Oct 2019 AML 23% blasts in marrow, 10% blasts in peripheral blood.
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  #30  
Old Sun Sep 25, 2016, 12:54 AM
Debbie W Debbie W is offline
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Hang in there Paul, been absent for awhile ...

from this forum.

My husband's relapse was discovered at his 4 year check up in October 2014. His WBC had dropped almost 3 points in May 2014 from February 2014, but it was still 'within normal range.' Looking back a blood test should have been done between May and October to make sure all was OK.

So always question, be a polite pain in the ass!

WBC in October was in the 2's and they called us back to do a BMB that day. Results showed he was 60% donor and a second transplant was ultimately recommended. Induction in Oct/Nov, admission on Christmas Eve and transplant began on New Year's Eve 2014, it was a fractionated transplant given over 3 days with a couple days in between.

Fast forward to today, things have been relatively smooth, although they did detect a FLT3 mutation this time so he has been on a low dose of Nexavar since March or April of 2015, he is due to discontinue this drug in December at the two year mark.

Second time around is difficult, but possible!
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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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  #31  
Old Sun Sep 25, 2016, 10:39 AM
bailie bailie is offline
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Debbie, I don't want to detract from Paul's thread here (how are you doing Paul I hope well?) but did your husband relapse with the same mutations as prior to his first transplant? When I relapsed about 18 months ago, I had no prior to SCT mutations, but picked up a new one (the "Philadelphia chromosome (9;22) which is very rare for AML). How about blast count? I am really curious if when a person goes to "60 percent donor" is the other 40 percent the original blood type? My blood type changed from A+ to O+ at transplant.
Thank you.
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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 : Sun Sep 25, 2016 at 02:28 PM.
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  #32  
Old Thu Sep 29, 2016, 12:04 AM
Debbie W Debbie W is offline
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Hi Paul and bailie ...

Paul hope you are doing well, a second transplant is difficult, but if you happen to read this just do what is needed to get through this until your counts climb. It took longer for my husband's counts to rise the second time, but in retrospect it was a breeze, although if you told me that almost two years I would say you were delusional.

bailie, I replied in the thread linked below. Feel free to pick my brain and will do my best to respond.

http://forums.marrowforums.org/showt...1420#post41420

Quote:
Originally Posted by bailie View Post
Debbie, I don't want to detract from Paul's thread here (how are you doing Paul I hope well?) but did your husband relapse with the same mutations as prior to his first transplant? When I relapsed about 18 months ago, I had no prior to SCT mutations, but picked up a new one (the "Philadelphia chromosome (9;22) which is very rare for AML). How about blast count? I am really curious if when a person goes to "60 percent donor" is the other 40 percent the original blood type? My blood type changed from A+ to O+ at transplant.
Thank you.
__________________
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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  #33  
Old Thu Oct 6, 2016, 09:21 AM
bailie bailie is offline
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Paul, we realize you might not feel like posting but we are continuing to think about your situation and hoping for the best. Right now, as we all know, is a difficult period of time. Stay strong and keep your attitude great as it always has been.
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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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