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

Hello @mtksnider
I was looking through some discussions on MDS and found your posting. I too have MDS Del 5q or MDS (-5Q). I was diagnosed July 23. I was on Watch & Wait initially. Six months in RBC and Hemoglobin were dropping and I was approaching transfusion. I was started on Revlamid which is apparently the best drug for del 5q. I have finished 2 rounds. Second round was not as harsh as the 1st round. Find out soon whether the 3rd round will be at a reduced dose. Good news is that my RBC are in the normal range. I am told some of us live 5 and 10 years this way. It all just depends on those Myeloblasts. Your story sounds very much like mine.

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?

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?

Hi!
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

My husband had been on Luspatercept and the side effects are severe fatigue and shortness of breath and quite possibly a skin rash which he is still on Prednisone for because it would not clear up. His hematologist wants him to resume it but I am very much against it. I can see what it does to him. He still needs transfusions.

I am having mixed feelings about chemo versus transfusions what is the best option?

I started my 1st dose 10 mg lenalidomide on Monday June 3rd I will be going for a blood test 1 time a week for a period of time I am a kaiser patient in Hawaii and am finding it hard to get information met with cancer pharmacist was handed a packet of paperwork don't know much am hoping to get info from people thru this site

Started chemo on June 3 will take my 1st blood test on Friday I had a phone visit with dietician am trying to eat healthy boost my nutrition along with starting chemo so I am on the path to getting as much nutrition to help me fight this mds

Am new am starting chemo 1st dose was Monday 6/3 took a while to get of pity pot but have a positive attitude nutrition key phone visit with dietician met with cancer pharmacist and getting on this site for needed support