I would encourage anybody with joint, bone, tooth, or toe pain to mention to doc.

MPNs are rare and poorly understood cancers. The inflammatory nature of these diseases makes some of us more prone to gout and other conditions.

But most medical textbooks still push the old line that ET is a symptomless blood disorder. It is for some here. For others it's not.

Clinical oncologists don't see enough of us to really get a handle on why some of us react badly to HU and some feel better, or why some people have big symptom burdens and others don't.

And ET patients, because they've been told they have no symptoms and are never asked about them, tend not to talk about them and maybe even think they're just hypochondriacs. The discomfort is real. Speaking up will prod docs to understand it better.