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JAK2 Mutation, Low Iron and High Platelet count

Blood Cancers & Disorders | Last Active: May 24, 2021 | Replies (68)
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@stefnclr

I was recently diagnosed with MDS/MPN-RS-T with Jak2 mutation also. My doctor recommended this site. It makes me feel better to know of someone with this. I have so much to learn. I find info on MDS or MPN or Jak2, but this is the 1st time I've seen anyone with my same diagnosis. I'd love to learn more about your experiences if you'd consider sharing. Thank you. Debbie (age 63)

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Replies to "I was recently diagnosed with MDS/MPN-RS-T with Jak2 mutation also. My doctor recommended this site. It..."
mjpm2406 | @mjpm2406 | Mar 22, 2021

Hi Debbie,

I was diagnosed in January 2019 at Sloan after a bone marrow procedure and a molecular panel. MDS/MPN-RS-T is extreme rare. Only seven patients at Sloan in Manhattan and they see leukemia patients from the Tri-state area and international patients. Sloan said there are approximately 700 cases per year in the states. That goes to the point that this is an extremely rare disorder. I’m on a daily 500 mg Hydroxyurea and 81mg aspirin regime. So far so good. My hematologist/oncologist says we have a 30% chance of mutation to AML but that means we have a 70% chance this sucker won’t mutate. So the odds aren’t that bad. My blood labs are now within or near the normal range so things are going well for now. I also have a severe form of Axonal Neuropathy. I had Exome Sequencing and Whole Exome tests done on November 5, 2020 at Weill Cornell Hospital in Minhattan and I’m waiting (impatiently) to learn which subset of that disease I have. Hopefully, not the worst forms. Do you know which genes have mutated?

How are you tolerating the treatment so far?

Marty

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