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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 1 hour ago | Replies (491)Comment receiving replies
My husband has Jak2 and was a poor responder to Hydroxyurea and Jakifi. His hematologist suggested bloodletting but that costs too much for our income. We are hitting brick walls with every turn. He was diagnosed in 2020 after having a heart attack. We have insurance with my employer but copays are unreal and he hasn't been able to work since his heart attack. Just looking for encouragement.
Replies to "My husband has Jak2 and was a poor responder to Hydroxyurea and Jakifi. His hematologist suggested..."
I am so sorry for the nightmare you're going through.
Does anyone know, is there a foundation that assists people with the costs of MPN care?
Have you tried anagrelide? That's what I've been taking for years. I couldn't handle hydroxy at all, every side effect listed almost. Jakafi was great for bringing down platelets, not so great for side effects, and then the insurance wouldn't cover it after a while. Anagrelide works pretty good with hardly any side effects. @dwilson072516
@dwilson072516
Hi, I also have the same diagnosis and through my doctor at Stanford give blood monthly which helps my platelets and red and white numbers go down. This is called rather an ugly word to me; blood dumping. I do this monthly. This is no cost to me. I sure hope you will injure about this. It is helping me along with the daily 81mg of aspirin and 1000mg of hydrea. Denise
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@dwilson072516
Hi.
If your husband does not have the JAK2 V617F mutation, which is commonly associated with Polycythemia vera and other myeloproliferative neoplasms, he may be eligible to donate blood at a standard blood bank.
Primarily managed by organizations like the American Red Cross and America’s Blood Centers.