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

Discussion

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

Blood Cancers & Disorders | Last Active: Mar 22 9:54am | Replies (35)
Comment receiving replies
@loribmt

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?

Jump to this post

Replies to "Hi Jeff, Welcome to Connect. I know from experience that we’d like our meds to work..."
jeffreykassover1 | @jeffreykassover1 | Mar 13 1:04pm

Hi Lori and thank you for your response. I was diagnosed with MDS about 3 months ago, and initially I was given injections of something, that had no effect. Now I've started with Remlivid and am hopeful that I will see better results.

I really had no obvious symptoms other that Anemia, which was low for quite a few months. I had colon surgery this past summer, and needed a transfusion before surgery (which went well)
Then my Internist suggested I see a Hematologist who told me I had MDS.

I have tolerated all my medications well, and have other serious issues. Of course I was disappointed and depressed when I heard the initial results, however now, with some of the comments, I feel much more comfortable about waiting for the medication to work.
Thank you so very much for your support, and I look forward to having further discussions with this group. Jeff

VIEW AND REPLY