Is Idiopathic Erythrocytosis (Polycythemia) cancer?

Posted by Sue G @suzeebee227, Mar 5, 2018

I have had this red cell proliferation for more than 3 years. After 2 years, of doctors managing it with phlebotomies and meds, it appears there's no answers as to why & where it's coming from after much testing and fruitless searching. Doctors have told me it's Idiopathic erythrocytosis, not PV. I'm wondering why there is no information out there on whether it's cancer or not. There seems to be some worldwide disagreement on this. I'm quite frustrated at not being able to find out more. Can someone tell me if it is cancer or not and if there are hematologists that have more knowledge about this disorder so that I may get some answers? I still have rising hematocrit, (now 49%) so I'm concerned about blood clots, etc.

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rmegg | @rmegg | May 3 4:48am

I also have idiopathic polycythemia. It is a balancing act. I only had one iron infusion. I tried iron capsules. They really made it worse. There is a drug waiting for approval.

kkaiser3004 | @kkaiser3004 | May 3 8:11am

In reply to @rmegg "I also have idiopathic polycythemia. It is a balancing act. I only had one iron infusion...." + (show)

@rmegg
Thank you for your response, I am aware of the new drug that could be approved soon and hopefully will be effective.

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