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DiscussionDiagnosed with Polycythemia Vera in August. I was given Hdroxyurea
Blood Cancers & Disorders | Last Active: Sep 29 3:42pm | Replies (20)Comment receiving replies
Replies to "Yes, the Jak2 was positive. And yes, I'm seeing an hematoligist. I knew the phlebotomy might..."
@katrink
Hello,
I have no solutions but only sharing my experience since it is similar to yours. Six years ago I was diagnosed with the Jak2 mutation. Since then I've had phlebotomy about every other month depending on blood test results. Because I have other medical conditions, I choose not to complicate issues by taking any chemo. even though doing so would likely minimize or eliminate the need for phlebotomy. My arm also requires hot packs, pediatric needle and now always a butterfly needle after much searching for an elusive vein. During phlebotomy my blood may flow normally, slowly or actually stop flowing at all. There are many variables. Because of "chronic phlebotomies" I am anemic and feeling poorly. Hence, the next phlebotomy is cancelled hoping that my "blood will rest." Fortunately, this "hiatus" is allowed because my blood test results were unexpectedly "good." More to be revealed at January's appointment with the oncologist. All that is just to get the preliminary blood test before phlebotomy begins on the other arm...which now has a vein with scar tissue so is no longer the point of entry. Yes, things are getting complicated due to my choosing no chemo., so there is always more to be revealed. I wrote simply to help you feel there is another person who mirrors your situation. I do not know of anyone with this condition, so the Mayo site is invaluable. You likely know that this is a "rare incurable blood cancer." Hmmm...does that make us "rare birds of a feather?" I hope my (invisible) feathers are brightly colored! 'Nuff said. Best of luck!
You’re not one to give you your blood freely, huh… I’m sure it’s frustrating for you and your phlebotomist!
Hopefully the HU will begin to reduce your red blood count. 2000mg is a hefty daily dosage. There are other medications on the market as well, so if this dosage isn’t successful in reducing blood numbers your doctor might consider one of the alternatives. How often do you have labs?