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#1
Wed Jul 8, 2015, 06:06 PM
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Revlimid after SCT
Hello everyone, I am a new member here although I have been reading everyone's posts for over a year now.
On March 24, 2014 my 33 year old son was diagnosed with MDS & AML, he underwent introduction and 3 rounds of consolidation before having a MUD SCT and has done well with a few bumps but always moving forward. They decided at his 8 month visit to put him on Revlimid as a preventative measure against relapse and I am wondering if anyone else has been put on this medication after SCT. Thank you in advance for any advice you can offer. Karen
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Mother of 34 year old son who was diagnosed with MDS & AML at the same time. He underwent induction and 3 rounds of consolidation before having a MUD SCT on 8/28/14. 
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#2
Thu Jul 9, 2015, 01:08 PM
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At my husband's 7 month appt. doctor also recommended it. We were shocked. We had no idea that with brand new stem cells that he would need chemo again. My husband was very against it. I did read that Robin Roberts did have some sort of chemo to prevent relapse. Not sure if our decision made any difference because 3 weeks after we decided not to get the chemo my husbands MDS transformed into an aggressive rare form of AML called Erthroid Leukemia. He passed away 7 months after relapse at the age of 46. I know it's a really difficult decision. Our doctor felt good about him not doing chemo. In the end it probably would not have made any difference. We will never know.
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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
Thu Jul 9, 2015, 02:24 PM
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Hi - I've not yet had my transplant but have discussed going on a low dose regimen of Vidaza at some point after the transplant - I don't believe its efficacy is proven, but there seems to be at least a good theoretical basis for doing so. I believe that is the drug Robin Roberts was on after her transplant. I have not heard of using Revlimid. You might want to ask your doctor why Revlimid and not Vidaza - perhaps it has something to do with your son having AML or the type of MDS he had.
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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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#4
Thu Jul 9, 2015, 08:09 PM
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Thank you for your replies and Whizbang I am so sorry about your husband.
The doctor explained to him that it is a clinical trial that they felt was good for him since his MDS transformed to AML immediately. His AML was low risk but they elevated it to moderate because of the MDS.
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Mother of 34 year old son who was diagnosed with MDS & AML at the same time. He underwent induction and 3 rounds of consolidation before having a MUD SCT on 8/28/14.
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