MDS is a bone marrow failure disorder
MDS is a blood cancer
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Welcome to the MDS Patient Message Board. We hope that you will find this to be a very valuable resource in your journey. We have recently revised the format of our forum to be much more user friendly and pleasing on the eyes. Let us know if you have any problems, or if you have additional suggestions on how we might further improve our site.

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  • RoseAnn Norton

    I live in Florida now but I am originally from NY. I still go back to Memorial Sloan Kettering (MSK) every 6 months for a bone marrow biopsy and to meet with Dr Giralt who is world renowned in his field. Look him up, he treated Robin Roberts. The new facility at the David H. Koch Center for Cancer Care at MSK, 530 East 74th Street, 12th Floor, New York, NY 10021 (between York Avenue and the East River) is wonderful and has the quiet calming environment you need to help with your care. And the doctors are top notch. Worth a visit for sure. I was previously treated for breast cancer there and was very happy with the care I received.

    in reply to: Reblozyl/Luspatercept #58709
    RoseAnn Norton

    I also have SF3B1 mutation with ring sideroblasts along with ASXL1 and have been on Neupogen and Procrit to keep my hemoglobin up. They seem to be working as my hemoglobin is in the 10 to 11 range most weeks. I have not had to have any transfusions. I was diagnosed in 2021 and have been taking the injections weekly for over a year. I am 65 this week and hoping to have many years before progression of the disease. I am glad to hear that luspatercept is working for you. That will probably be the next thing in my course of treatment. Are you still considered low risk and will this help delay possible bone marrow Transplant? Any advice you can give me to help delay progression? Thanks.

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