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#2
Tue Jul 29, 2014, 07:12 PM
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__________________
Married, father of three daughters; now 46; diagnosed w/ Major form MDS 6/18/2013; had low counts across the board; Multiple chromosome abnormalities; Finished 2nd round Dacogen 9/13; SCT - Oct. 31, 2013; Sibling match 10/10  ; 5.5% blasts down to 3%, now 1% (post BMT)
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#3
Tue Jul 29, 2014, 07:25 PM
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I am very sorry to hear about your husband's relapse. There have been a number of studies on using Vidaza along with DLI as a second line therapy for relapse after transplant, but because it is a fairly new approach, there aren't large numbers to work with, so any study done may not present all of the relevant facts as to success rates or improvements in the approach, or really the full demographic picture of why it works on one person and not another.
Here is the largest study I could find to date: http://www.bloodjournal.org/content/122/21/4642
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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#4
Wed Jul 30, 2014, 11:19 AM
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Thanks
Thank you to Whizbang and Dan L for the info. We go to the doctor tomorrow and I want to be as informed as possible. Also good luck to you Whizbang on your upcoming 2nd transplant. Your amazing attitude and young age will be so important.
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#5
Fri Aug 1, 2014, 06:42 AM
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My husband had a DLI June 13--I just updated my post in transplants. He is not taking Vidaza--doctor just did DLI but did say that he may consider adding Vidaza depending upon how he responded to DLI. He never had Vidaza before the SCT.
Wish you and your husband the best.
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#6
Fri Aug 1, 2014, 12:44 PM
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Is Vidaza ever offered as a routine post transplant regimen? Or, is it only included in special circumstances?
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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
Fri Aug 1, 2014, 01:04 PM
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Baille, One of our members goes by the handle "JILL" relapsed after 8.5 months and she has been on Vidaza for 3.5 years. Otherwise, some facilities offer Vidaza for a year post transplant to reduce(hopefully) the incident of relapse, handle "Mausmish" had that regimen.
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#8
Fri Aug 1, 2014, 03:40 PM
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Thank you. That is what I was thinking. I will be interested to see what my Dr. says about this when we meet Monday for our last appointment before my transplant. I reacted positively with the Vidaza treatments leading up to the transplant so I think it will be worth discussing.
I hope you are doing well and things are working out fine. I appreciate your comments.
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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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#9
Fri Aug 1, 2014, 09:32 PM
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We met with our doctor yesterday and didn't really learn a whole lot. He said that we would do 3-4 cycles of Vidaza and then do another biopsy. He indicated that DLI is still the preferred treatment, but that we might just continue with Vidaza if it is working. My husband has only had one cycle at this point, so we don't know if it is working or not.
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