It's been five weeks since I went to Mayo to take p32, radioactive potassium. It is knocking out my platelets, hopefully not all of them (they say the slaughter slows). I have lost 3/5 of the platelets I had five weeks ago. I took it to avoid a stroke, which can happen with platelets over a million, where mine had been for several years.

Dr.Wong said this would not help my foot pain (pain of PN and vascular narrowing in the little vessels in the toes), but it did! I can now walk several blocks. I can do my housework better, although still sit in the wheelchair to do sit-down chores like loading the dishwasher. Also I am taking half of the anti-histimine I take to stop violent itching, a common thing in Polycythemia Vera.

It took me a year to get courage to do this. The danger is a 10% or so leukemia chance. But most people don't get leukemia and live longer if they have p32, or at least live more comfortably.

I rock and roll when I go on my new walks, but who cares?

Because I have porphyria too, I reacted badly to every chemo I tried.

Mariel (old MS dx, Porphyria, Polycythemia Vera, Monoclonal Gammopathy)