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?

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.

I’m curious about this too. I’m 48 and my platelets are in the critical range at 1,142K. The highest was 1,394 and my oncologist-hematologist said I’d have to start HU if they reach 1,500. He’d like to wait until I’m 60 before starting this, since women’s risk of stroke increases at that age. I was diagnosed with ET relatively young, at 43, and my first count was 697. I only take baby aspirin daily, and stay relatively active for cardiovascular health. I’m curious about what others do to feel some sense of control over this condition.

I wrote a correction today regarding my lab results that I misunderstood .

I incorrectly wrote that there was a 7.1% probability that JAK2 caused the high platelets.

My lab results stated JAK2 at 7.1% . This actually means that the mutation was found in 7.1% of the blood cells and it has nothing to do with the chance aspect of my diagnosis. That value is considered "low positive" . According to DR Google research 10-15% JAK2 mutation is a general starting point for taking action.

My doctor did not discuss the lab results with me during our appointment. I found the results on my patient portal and asked DR Google what it means.

Check out your lab results and maybe there is a positive percentage shown with the CALR results.

I hope this helps. I find this post to be useful for understanding personal reactions to medications and general tips.

I am already working on a 2nd opinion with a doctor at Mayo for understanding medical questions and medical advice.

Good luck and sorry for the confusion.