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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: 5 hours ago | Replies (591)Comment receiving replies
@gigi05
Actually I don't talk to anyone about it. Friends and family know I have something weird and I take a chemo pill for it..............I'm sure that is all they could say.
I did not do my "go down the rabbit hole thing" I usually do-- about the HU. I just figured if I had to take it, I would just do so and not quibble. Although quibbled to my hematologist for months before agreeing to take it. After getting on here I see how debilitating the disease and/or the medicine can be. I thought I just had an age spurt!! Which I may well have had :-0)
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@jodyjazz I did a bunch of research on the HU. Found this discussion thread. Found a MPN specialist, or rather bonemarrow diseases specialist, after my HEMO said to just take HU, and aspirin, like no big deal, HU after all is "generally well-tolerated"!. Well, that was a bit of a shocker for me, as I , like many on here, was not on any medicines, take quite good care of myself, and did not even have aspirin or tylenol in the house. As a result of now seeing the bone marrow specialist, I have been on 'just' aspirin, and we are watching my platelets via bloodtests every 3 mos. They have been 'stable' around 480 for the past year and half. So, I have saved myself that time of not being on HU.