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Essential Thrombocythemia: Making treatment decisions
Blood Cancers & Disorders | Last Active: May 31 1:16pm | Replies (410)Comment receiving replies
When a doctor says "No, that has nothing to do with ET or HU," what it often means is the doctor hasn't done his or her research.
Doctors seem unable to utter the words "I don't know."
It seems to me that those living with ET can often be a better source of information.
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@janemc YES! It would be so great if docs could say "I don't know" and then tried switching meds or referring you to an expert.
wlm7615's doc just dismissed HU as a cause because it's not a common side effect, which leaves the patient either living with an ever-worsening ulcer or experimenting on his own. That's not the care any of us deserves.