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Anyone living with Essential Thrombocythemia with JAK2?
Blood Cancers & Disorders | Last Active: Nov 1 2:25pm | Replies (164)Comment receiving replies
@arti4
Thank you for your reply. Yes, our stories do seem very similar, although my tiredness doesn't seem nearly as severe as yours. But it's hard to know the cause and people all age differently, too.
I, too, am now on two low-dose (coated) aspirin a day. Do you take one twice a day, or both at the same time? When my primary care doctor doubled mine, he didn't say and I didn't think to ask.
600k seems to be both our threshold platelet counts for having to go on HU. I too am dreading that, but with the one recent exception when my count decreased, my counts have steadily only gone up.
I wish you the best in managing your ET and for good health.
Replies to "@arti4 Thank you for your reply. Yes, our stories do seem very similar, although my tiredness..."
@cec2 Hi, if you don't mind, I'll add my information here. I am ET with JAK2 also—age 76, male. When my platelets hit 600, my hem/oncologist told me to take one or two baby aspirin 81 mg/day. I did some deep research on it from many different medical articles. Many doctors suggested their patients split the dose, with one aspirin in the AM and one with or after. The reason was that research showed that the risk of thrombotic cardiovascular events, such as heart attacks and strokes, peaks in the morning, particularly between 6 a.m. and noon.
So, taking one in the evening ensures you still have a high level until you take your morning baby aspirin. Made sense to me! So I take mine with breakfast or after breakfast, and with dinner or after dinner.
As far as "dreading" hydroxyurea, please don't have anticipatory anxiety about it. It's been used for 47 years, and many people have no or minor symptoms. I started it 8 months ago at 500 mg/day, and my symptoms are very minor, off and on, skin itching (not a big deal), and sometimes feeling a bit sweaty at night. But I do not sweat much at all—no soaking sheets or T-shirt—and it is again, not painful or very bothersome. I wear bamboo fiber tees and jockey shorts to "wick" away moisture. But as I said, it is a minor percentage of people who have side effects bad enough that they need to quit. The alternative 1-2 drugs have different and, in many cases, worse side effects.
If you want to keep all side effects and also your cancer as stable as possible, switch lifestyles if you have not read about the importance of low-inflammatory diets, daily exercise, weight control, taking anti-inflammatory supplements, stress control, and 7-8 hours of sleep nightly. The Mediterranean Diet and supplements like Omega-3 Fish oil caplets daily have improved my quality of life more than anything else. Those lifestyle changes also keep platelet count lower (high stress raises platelet counts) to a healthier level.
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@cec2
FYI: I take one low-dose aspirin in the morning and one in the evening. Nobody told me either, about whether to take them together or not. But when I’m asked about that, they’re satisfied that that’s the way I’m doing it.
Best to you.