Thursday, November 27, 2008

A good question from David...

I have a question for you: if you are worried about driving your HCT too low, why are you on hydroxyurea?

Because I have two abnormalities - both related to blood counts and chemistry, the two principal researchers on each condition (PV and Hemochromatosis) have me on 5 separate studies - and trying to save my health in related ways.

My PV doc and his study protocols want to retain the Hydroxyurea to target the Jak-2 effects, and the twice weekly phlebs are really designed to eliminate the iron overload in blood and organs and reduce the amount of damage being done to joints (iron-induced arthritis) and organs - we want to keep the HCT as high as possible so that the iron reduction is maximized with each phleb. With that thought, we then reduce (but don't eliminate) the amount of HU so that the HCT doesn't go below a threshold and cause a temporary hiatus on iron reduction.

Good news all over - my iron (ferritin levels) have gone from ~3000 in July '08 to only 830 last week! So - another 2 months (8-10 phlebs) and we will then reduce to a maintenance level. At that time, we'll probably increase the HU to manage the WBC and platelets to acceptable levels.

Other good news - the Huntsman Cancer Institute (University of Utah affiliate where I am treated) appears to be the first U.S. location for a "new" Interferon study, similar to one just successfully completed in France. If all goes well, I will be on IFN in February - possible breakthrough protocol for PV patients.