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Looking for experiences with the progression of MDS

Blood Cancers & Disorders | Last Active: Dec 24, 2023 | Replies (32)
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@momz

Anne-Marie,
I do not know my IPSS-R
Score is or even what that means? I will definitely be asking for more information and explanations next Dr. visit. Much appreciation for sharing your knowledge.
😊Brenda

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Replies to "Anne-Marie, I do not know my IPSS-R Score is or even what that means? I will..."
janetlen | @janetlen | Dec 24, 2023

Hi Brenda! New here. Just diagnosed in July, but evidence suggests I have had the disease since 2020. You can go to Mds-foundation.org and order books about MDS, but more importantly use the online tool to find out what risk level the MDS has(Ipss-r or ipss-m). It is an important factor, but understand that about 1/3 of cases will develop Acute Myeloid Leukemia which has a lower survivability rate.

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