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With No Symptoms But Positive Jak2 Since 2018, Are Phlebotomies Or Meds Really Necessary. Hematocrit Has Never Been Higher Than 50

A myMPNteam Member asked a question 💭
Reisterstown, MD

Been doing regular phlebotomies since then but due to very low iron just switched to Jakifi but is anything really necessary

January 28
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A myMPNteam Member

I have MDS/MPN-RS-T. On the MPN Component, my MPN is behaving like PV. My Hematocrit number is running above 50. My Oncologist wants that number to be below 45 so he ordered weekly phlebotomy and hydration treatments for 6 weeks. Then he’ll decide what my long-term treatment plan will be. The real issue is I recently had a molecular panel and it indicated I have the IDH1-R132H mutation which is a known oncogenic. Sloan is running additional tests because that mutation is uncommon on MDS and MPN patients. It's common in AML patients but Sloan ruled out AML so now they're trying to figure it out. I do know the cost of the drug to shut down the IDH1-R132H gene is outrageously expensive.

February 10

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