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DiscussionPolycythemia Vera and low iron
Blood Cancers & Disorders | Last Active: Jun 12 12:22pm | Replies (34)Comment receiving replies
Replies to "I have Polycythemia Vera with Jak2 an 76 years old and diagnosed 3 yrs ago. My..."
@jerrlin I have PV. 500 mg hydrea ,9 a week. Phlebotomy about every 4-6 weeks. Iron deficiency. Oncologist says no iron supplement. You are fortunate.
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@jerrlin
Diagnosed with PV 10 years ago. I am now 75 yrs old. Its been a roller coaster for me with PV. I have gone as long as 2 years without a phlebotomy but now it seems I need one almost every 6 months. Hydroxyurea has pretty much been a "bust" for me as itching continued and lab levels did not improve. The Hydrea at 500 mg/day also led to patches of skin cancer on my face.
I would love to agree with you on Jakafi, as when I was on it (almost 2 years) I required no phlebotomies. Unfortunately, it led to skin cancer and several MOHS procedures.
I understand there is a new drug called Rusfertide that is more effective than the Hydrea.
I have very low iron levels (Ferritin of 9) but my hematologist does not recommend iron supplements. Let's face it. There are far worse cancers but PV is a very challenging disorder that will affect your life style. Just have my fingers crossed that we can all avoid Mylelofibrosis or leukemia.
I can't think of a more diabolical way to sabotage the body than to "infiltrate" the blood supply that provides oxygen to all major organs including the heart and brain.
Splenomegaly is another thing that my heamatologist watches carefully. The out of whack spleen is the "core" problem here. I don't know if the hematologists understand it as well as they should. In other words what is the factor that is causing it to malfunction?
Hang in there. We can manage this disease somehow.