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Anyone have or heard of MDS with 5q-syndrome?

Blood Cancers & Disorders | Last Active: Mar 22 9:54am | Replies (35)
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@jeffreykassover1

Hi I have MDS with 5Q and started taking Lenalidomide about 2 1/2 weeks ago. I was just tested and the results were unchanged. How long does it take before I mights see some positive results?

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Replies to "Hi I have MDS with 5Q and started taking Lenalidomide about 2 1/2 weeks ago. I..."
Lori, Volunteer Mentor | @loribmt | Mar 13 9:35am

Hi Jeff, Welcome to Connect. I know from experience that we’d like our meds to work immediately! It’s not always the case with blood cancers. Unless it’s a strong chemotherapy, some of the treatments can take more time to slowly change blood chemistry.

There’s a current discussion where I think you might find more members sharing their experience with taking Revlimid (Lenalidomide) for their MDS as well as MM.
Here’s the link to:

What are your experiences with lenalidomide (Revlimid) for MDS?
https://connect.mayoclinic.org/discussion/what-are-your-experiences-with-lenalidomide-for-mds/
Please feel free to jump right into the discussion where you’ll meet @gingerw @darlaburley @janetlen @5qdeletion and others.

How long ago were you diagnosed with MDS? Where you having symptoms that led to the discovery?

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helentickle | @helentickle | Mar 13 7:49pm

I started taking Lenalidomide almost 2 weeks ago. I will see the doctor when 4 weeks are up. Hoping for good results. Thank you for sharing.

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