ET? Tell your kids and siblings

Inherting a predisposition to ET doesn't
work in a predictable way, like
the yellow/gray genes in cats. At this time
there is no way to predict whether close
relatives have inherited a predisposition
to ET. And inheriting the predisposition
does not mean someone will develop
ET.

  

Rare Disease Report covered a study in August of this year that showed immediate relatives of ET patients have a 7 percent higher chance of getting an MPN than the general population. Those with a parent who was diagnosed with an MPN at a young age might be at a higher risk.

I wrote about the "diet coke and mentos" theory of ET genetics a couple of years ago, so the study shows more statistical evidence for that theory.

If you spend much time in MPN support groups, you will learn that many patients report they had a grandparent, parent, or sibling with an MPN.  Not all family members had the same MPN; remember that the mutations that cause ET can also cause myelofibrosis or polycythemia vera.

Hydroxyurea Adventure: The first nine months

There's me earlier this
summer, feeling pretty good,
all things considered.

I had my yearly hematologist's visit at the end of October, and Dr. Blood was happy to see a steady downward trend in platelet levels (down from about 800 to 550), and that I have no anemia or any other levels that are of concern.

My MCV/MCH were slightly elevated, which the doc says is a function of being on hydroxyurea, and this isn't something to worry about. She said to think of it as a marker that simply indicates I'm taking HU.

Since starting on the HU, I have had no digestive upsets or hair loss (though you can see in the photo at left that I was cutting my hair short just in case).

So all of that is good news.

The not-as-good news is that Doc told me to take two extra HU capsules twice a week to more quickly nudge the platelets into the normal range.