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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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@janetlen

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.

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Replies to "Hi! I am impressed you have been on "Watch and Wait" for so many years. Revlamid..."

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.