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

Blood Cancers & Disorders | Last Active: Jun 18 10:35am | Replies (18)

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MDS 5q what happens now?I was diagnosed with Mds 5Q in 2019 did required blood tests now at 2024 I am now at low risk pre leukemia I am 77 and will begin my Chemo this week with lenalidomide I understand my prognosis is good my question is what other treatment is available or is this my only option?

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Replies to "MDS 5q what happens now?I was diagnosed with Mds 5Q in 2019 did required blood tests..."

Welcome, @mamapocho01. I moved your question about myelodysplastic syndrome (MDS) with deletion 5q to this existing discussion:
- Anyone have or heard of MDS with 5q-syndrome? https://connect.mayoclinic.org/discussion/anyone-have-or-heard-of-mds-5q-low-risk/

I did this so you can connect with other members like @janetlen and @mtksnider who have a similar diagnosis.

As you know, people with this subtype of MDS have low numbers of red blood cells, and the cells have a specific mutation in their DNA. Until the discovery and approval of lenalidomide (Revlimid), patients were treated with repeated red blood cell (RBC) transfusions. Now most patients can be treated successfully with lenalidomide.

@mamapocho01, I believe that only other options are repeated RBC transfusions or possibly bone marrow transplant.

When do you start?

I am impressed you have been on "Watch and Wait" for so many years. Revlamid is best for del 5q. There are some people who live 5-10 years on the med. The first 8 weeks you will have weekly blood tests and metabolic panels. The Dr's may have to adjust your dose during that time. There are other options. Luspatercept is an option but the side effects may be worse. As I understand it, all of the drugs they use for MDS eventually stop working and something else will be tried. When the drugs quit working, we become transfusion dependent.

If you have not done so, go to mds-foundation.org and use the IPSS-M calculator to show your risk. I know you are low right now, but knowing how your risk score is calculated is helpful. You need your latest blood counts and your latest Bone Marrow biopsy.

Good luck! Keep us posted on your progress.

I have low risk MDS and have been receiving treatments of Reblozyl These treatments have been successful!! My hemoglobin increased to 11.8. Treatments are every three weeks. I have not needed treatment in two months