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DiscussionIs anyone involved in clinical trials for ET, specifically for CALR?
Blood Cancers & Disorders | Last Active: Jan 17 6:39pm | Replies (14)Comment receiving replies
Replies to "Thanks for the support. It will not be an easy decision as I know the control..."
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@drbart86
A friend with ALS volunteered for a drug trial. It was a heroic choice, but absolutely horrible for her. Her ALS progressed very quickly; she had less than a year after diagnosis.
Participating in the trial meant taking 10 (extra) pills a day as well as multiple two-hour trips to the clinic. Worst of all, it meant she couldn't take a medication to ease a heartbreaking symptom of ALS, uncontrollable sobbing. That wasn't disclosed when she signed up for the trial.
Please be sure you fully understand what this drug trial would entail.