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Is anyone involved in clinical trials for ET, specifically for CALR?
Blood Cancers & Disorders | Last Active: 1 day ago | Replies (86)Comment receiving replies
@garyr443 nope just meds. Fro 15 years and lots of cranberry, overlapping with ET for 8. Regardless platelets kept going up. Started wit 500 mg HU 3X/week eventually up 2000 mg/d then had reaction after about 3 years, then on Jakafi at increasing dosage - constantly elevated plt. But seen where some are on HU low dose for many years with no side effects (plus cost is really low). So each of us have a different journey. Best wishes on yours
Replies to "@garyr443 nope just meds. Fro 15 years and lots of cranberry, overlapping with ET for 8...."
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@drbart86 My hematologist has told me I'm one of his more unusual patients. I've been on HU 500mg once daily for two days, followed by one day at two doses, then back to one. So, 1, 1, 2, 1, 1, 2, etc. seems to work for me most of the time, unless I make a dietary change or change my supplements. I added CoQ10 and that drove my platelets up. Same happened when I ate pink salmon, tuna and cheddar cheese for a month or two. As soon as I went back to what I was eating before, my platelets came back down. Sticking with my paleo diet, though, there are no surprises. I won't know for sure until I'm tested on July 3rd, but I expect my platelets to stay normal with nothing but my paleo diet and the cranberry juice. We'll see. So, yes, everyone seems to have a different experience.