Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > MDS
Register FAQ Search Today's Posts Mark Forums Read

MDS Myelodysplastic syndromes

Reply
 
Thread Tools Search this Thread
  #1  
Old Wed Jul 8, 2015, 07:06 PM
KarenE KarenE is offline
Member
 
Join Date: Jul 2015
Location: Sacramento, CA
Posts: 7
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
__________________
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.
Reply With Quote
  #2  
Old Thu Jul 9, 2015, 02:08 PM
Whizbang Whizbang is offline
Member
 
Join Date: Aug 2013
Location: Central NJ
Posts: 299
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.
__________________
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)
Reply With Quote
  #3  
Old Thu Jul 9, 2015, 03:24 PM
PaulS PaulS is offline
Member
 
Join Date: Sep 2014
Location: New York
Posts: 247
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.
__________________
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
Reply With Quote
  #4  
Old Thu Jul 9, 2015, 09:09 PM
KarenE KarenE is offline
Member
 
Join Date: Jul 2015
Location: Sacramento, CA
Posts: 7
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.
__________________
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.
Reply With Quote
Reply


Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Time between Revlimid use and SCT? bailie MDS 0 Tue Jul 1, 2014 12:37 AM
Chromosomes and Revlimid Birgitta-A MDS 2 Sun May 19, 2013 07:42 AM
Revlimid dosing Birgitta-A Drugs and Drug Treatments 0 Tue Aug 9, 2011 05:18 AM
Long Term Effects of Revlimid? FZ_MM_free Drugs and Drug Treatments 0 Mon Jun 6, 2011 02:43 PM
New Oral Medication Gives Hope to Patients with Blood Cancer Doug Mylie Canada 0 Sat Mar 8, 2008 01:27 PM


All times are GMT -4. The time now is 07:47 PM.


Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright © 2006-2020 Marrowforums.org