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I have been diagnosed and under treatment for MDS

Blood Cancers & Disorders | Last Active: Dec 18, 2023 | Replies (16)
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@mjpm2406

Anyone diagnosed with MDS/MPN-RS-T? I’ve was diagnosed 5 years ago. There are only 7 patients at Memorial Sloan Kettering with this overlap disorder. Three of them are from Europe. I’m number 7. Stony Brook Medicine has no patients and the VA Hospital has none. I know this is an extremely rare blood cancer but there may be someone on this site who also has MDS/MPN-RS-T.

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Replies to "Anyone diagnosed with MDS/MPN-RS-T? I’ve was diagnosed 5 years ago. There are only 7 patients at..."
bonnieshaffer | @bonnieshaffer | Nov 25, 2023

I have MDS/MPN with SF3B1 and ET. It's basically the same as MDS/MPN RS T - I just don't have the 15% RS required for the diagnosis. My Oncologists are treating me as if I have MDS/MPN RS T.

I am taking 500mg of Hydroxyurea daily since April. My platelets seem to be climbing back up lately, so I'm not sure what will happen with treatment.

On top of all this, I have Osteoporosis and have just tested positive for an autoimmune disease!

All of this is so surreal - I feel like I'm watching a movie or something.

Hope you are doing well!

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