Blood Cancer - Polycthemia Vera

MsLivingLife4Now Member Posts: 2
edited April 2017 in Long-Term Survivors #1

Hello everyone,

I'm new here. I was just diagnosed with this blood cancer, polycthemia vera, April 2017. It's a rare cancer where your bone marrow makes too many red blood cells, platelets & sometimes white blood cells that causes your blood to get really thick which can cause blood clots, stroke, or a heart attack. This type of cancer has no stages. You're either primary or secondary. I have secondary polycthemia vera but only my red blood cells & platelets are increased. The treatment for this are phlebotomies, blood thinners, and chemo drugs (i.e hydroxyurea). I'm doing the phlebotomies and blood thinner meds, which I hate taking meds, but am NOT taking the chemo drugs.


I wanted to know is there anyone on here who also have this rare cancer who can share some information about their experiences and living with this. Thanks in advance. 


  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    Hi, MsLiving

    Hi, MsLiving --

    Welcome to the forums. Sorry to hear you have a reason to be here, but if so this IS a great place to be. 

    On the "Discussion Boards," cancer-specific board, there's a "Rare and Other Cancers" Board.  If you go to that listing, you'll see a place at the top of the listings that says, "Add New Forum Topic." Doing that and asking your questions there will give you a better opportunity to get answers.  Also, you might fill out a little information on your "About Me" page. It doesn't need to be much -- you're at the beginning of this, after all -- but it helps others who're reading and responding to know where you are. 

    I'm afraid I don't have any information about your type of cancer.  It's important to focus on the fact that we're "living with cancer, not dying from it" as one of the guys often reminds us on the forum I most frequently read.  Your user name reflects that -- Way to go!