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JAK2 Mutation, Low Iron and High Platelet count
Blood Cancers & Disorders | Last Active: May 24, 2021 | Replies (68)Comment receiving replies
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
Replies to "Hi Debbie, I was diagnosed in January 2019 at Sloan after a bone marrow procedure and..."
Thank you for responding, very appreciated. As of now, knock on wood, the only mutation is the Jak2. I was on hydroxyurea for the high platelets and 81mg aspirin. I got Covid and after recovering, my bloodwork showed my hgb, rbc, wbc got very low so he took me off hydroxyurea. I get bloodwork done again in a couple weeks, I imagine platelets are high again but mine are faulty, they don't stick together. I hope you get positive results soon on your tests. How long have you had this or been diagnosed? I have had anemia for years, always told due to inflammation. My new general physician sent me to a cancer/blood dr when she saw repeated high platelets along with other signs something wasn't right. He ordered bmb and that's when I was diagnosed, so I don't know how long I've actually had it. He stated we'd monitor monthly blood work, treatment as needed, transfusions and chemo. So far 81mg aspirin each day and doing ok. Worried but trying to learn more about it. Hope to hear from you again.
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By the way, check out the websites for
Myleukemia.com, MyMPNteam, MPN Research Foundation, MDS-foundatio.org.
They have good resources.