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

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.

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.

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?

Basically your doctor disagrees with the majority of hematologists and MPN specialists about ET's reclassification as a cancer around 2006. As long as the doc is following accepted treatment protocols, your care plan may still be the same as everyone else's--test for driver mutations, monitor blood every few months, take baby aspirin, start HU when you are in the high risk zone, and visit at least once a year.

If it were me, I would ask why your doc doesn't agree with the cancer designation. The answer might tell me something about his attitudes, whether he keeps up with new info, and what kind if care I can expect.

I am confused about ET being a cancer my hemp/onco told me it is not a cancer but a blood disorder ?!?

By working closely with your O/H, taking baby aspirin and staying active, you're taking great care of yourself, lalalura.

anavleek, for me at least HU not only brought down my platelet count, it also gave me my energy back, and relieved those killer ET headaches.

Not only do we have a weird cancer, we all go through it a bit differently.

I guess that makes us very special.

Beautifully said, nohrt4me.

Just a couple general comments about fatigue, being a drama queen, and HU:

1. If you have a heart issue on top of ET, I guarantee you will feel more tired. ET is already a strain on your body. Any other illnesses or conditions or worries add to it. I have a wonky mitral valve and scoliosis. I am aging. I am worried about my husband's cognition. Cumulatively that adds up, even if I eat well, exercise, and get good sleep. We learn to pace ourselves, ask for help (hard!), and live with a little less perfection.

2. Urging people to be strong, fight, stay positive, or "you got this" works for some people. We're all different. But I always hear that stuff as criticism: "Suck it up, Buttercup! You're falling down on the job. You're making everybody feel bad by talking about being sick. Quit bitching and get in the Positivity Parade." If you can't be honest about how crappy you feel some days on here, that's another strain and source of stress.

3. HU does make some patients feel better for awhile. I was one of those lucky ones for several years. It makes some people sick. Nobody knows why people have such differing response to it. That's cuz research goes into new drugs that hardly anybody can afford, not into helping people cope with old ones that most people take. You can actually improve life for others by being honest with your hemo about how you feel. If they hear it enough, maybe the palliative care will improve!

I hope everybody reading this has a good moment today--pet the cat, watch the birds, read a book, see a good show, eat something yummy!

Hola, buen día. Si sirve como aporte, tomo hidroxiurea hace 10 años. La manipulo como cualquier otro medicamento y la tomo del mismo modo.
Nunca tuve llagas o úlceras en la boca ni en mis manos.