Essential thrombocythemia (ET): When to start hydroxyurea (HU)?

anavleek, as if it weren't confusing enough . . . some doctors say ET is a blood cancer. Others say it is a blood disorder.

ET is triggered (90% of the time) when, for unknown reasons, one of the three proteins that govern platelet production experiences a mutation. (Ten percent of the time, there is no protein mutation. This is referred to as triple negative ET.)

With that mutation, the protein "drives" the blood marrow to produce excessive and misshapen (abnormal) platelets.

Producing abnormal cells is a definition of cancer.

Like many MPN topics, this issue is strongly debated. I personally feel ET is cancer, others may see it in a different way.

If we agree to call ET cancer, note that it is not an acute cancer, such as the cancers that produce tumors. Instead, it is a chronic cancer. It can't be cured but it can be managed.

Speaking personally, accepting that I have a chronic cancer motivates me to take my chemo capsules and work out every day. Maybe this will not extend my life. But it will make every day I have better.

Does any of that make sense?

I share honestly with trusted friends about my ET, symptoms, fears and bad times. I think sharing openly with the right people is helpful for me and those I share with to deepen the trust between this. Positivity can at times be toxic! Empathy can be healing whether giving or receiving. Wonky mitral here, too and mild aortic stenosis. I believe my CALR mutation and the blood pressure increase leading to cardiac issues to be caused by the high stress of caretaking of family member with insufficient help. I lived in state of fight/flight/freeze for over a year. My initial response to the death was relief from witnessing the suffering AND letting go of my responsibilty for responding to constant emergencies. Though my diagnoses didnt come until much later, I link the long term stress to the cause. Diagnoses knocked me to my knees for a while! On hydroxyurea for almost a year now and finally getting platelets down below 600. Its a shotgun treatment, not a rifle.

Oh, boy, I really relate to the fight/flight/freeze of caregiving and relief after death. I was diagnosed about the time my mother started going downhill. I started HU the month before she died. Fortunately, the HU improved fatigue so I could deal with clearing out her house and deal with her estate. My husband was a saint the entire year we had to deal with that mess.