What I'd like to see in 2016 for ET patients

Perhaps the miracles of modern medicine will one day be able to correct the genetic mutations that cause MPNs. Understanding these genes has come a long way since my dad was diagnosed with ET over a decade ago. And research is moving toward targeting or even correcting the effects of the genetic mutation. All this is good (though I continue to be skeptical of the costs of these treatments).

For now, my desires are pretty modest. Here's what I'd like to see for ET patients in 2016:

Better emotional support. Having a firm diagnosis of ET reduced my anxieties in some ways because I know what I've got. But the progress of ET is a crap shoot: Will it morph into a more serious MPN? How would oral chemo affect me? How will my other ailments be affected by ET? This creates a lot of anxiety, and sometimes you feel the need to be with others who understand that you're not only physically sick, but that your mental coping skills are at times stretched to the max despite trying to remain realistically optimistic. Finding a support group specifically for ET patients is almost impossible because the disease is so rare. There are a few online groups, but that's not the same as the energy and help you can get from live, warm bodies.

More and better info and explanations from doctors. Hematologists and oncologists have many acutely ill patients to work with whose short-term prognosis is much worse than those of us with ET. Unless your platelets are sky-high or your ET has morphed into a more serious MPN, you aren't going to be a big priority. And maybe you shouldn't expect to be. But there are scads of pamphlets in most oncology offices about every kind of cancer imaginable ... except MPNs. If you want to understand your disease, you have to ask good questions and maybe do some research on your own. I'm hoping some of the links at right will help people.

Symptom control. ET doesn't usually come with unrelenting, severe pain. But headaches and itching can be debilitating at times. For me, the worst part of ET is the lethargy. Those whose ET has progressed to the point of taking chemo report more severe symptoms and side effects. Exercise, a healthy diet, and drinking lots of water help. Some patients report they take B-12 shots. Others have tried American ginseng, which a recent NIH study showed seemed to help with fatigue. Barring a cure, what are some ways we can help ourselves without falling prey to quackery?

My wish for everyone with ET this year is to remain stable and healthy. As Red Green used to say: "Keep your stick on the ice!"

Be well.

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