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DiscussionIs anyone involved in clinical trials for ET, specifically for CALR?
Blood Cancers & Disorders | Last Active: Jul 23 8:13pm | Replies (89)Comment receiving replies
Replies to "@drbart86 We each have our own Everest! You don't need to go all the way around..."
@gingerw Well got through the first 3 weeks on the dose titration; I guess fortunately on a fairly low dose compared with those with MF. My fatigue was really bad for the first week+, but kept pushing for longer walks with my dogs - was up to over 2 1/2 miles over the weekend (prior to treatment was typically 5 - 6 miles).
Had my first 3 week dose yesterday, so entire day spent in the infusion center (only a 6 hour observation). Really affect fatigue, but not a bad as the 3 weeks in a row. I got in about 2 miles this morning. But still not sure about getting season pass to ski - but that might be my best motivation!!!!
I'm optimistic about this product as I communicated with another with ET at a similar (slightly higher) dose that at 6 months is showing no allele burden. So maybe there is finally a cure on the horizon with CALR ET.
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@gingerw at this point, yes. When I was young, I once hoped to do all the highest peaks on every continent . Then life happens. I have few regrets and have been fortunate in many ways and seen so many places in the world meeting /seeing many great people so can't complain.