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

Hi, I was diagnosed with MPN ET, November last year, complicated by having two mutations in the bone marrow Zak2 and Calr , I was on HU for few months but my haemaglobin kept dropping ( ending up getting three transfusions) , and was making no change to the platelets which were 650, I started on interferon injections 80 and now 130 weekly and Aranesp 300 every three weeks, my haemaglobin has now come up to 11.5 and platelets have dropped to 450. However the fatigue has become more chronic and difficult to cope with, a symptom of MPN and compounded by the two mutations. I am pacing myself and manage just pleased that the injections are at the moment working. I am older than many of you on this site, into my early 80's..hope the above information is of help

Hi, I was diagnosed with MPN ET, November last year, complicated by having two mutations in the bone marrow Zak2 and Calr , I was on HU for few months but my haemaglobin kept dropping ( ending up getting three transfusions) , and was making no change to the platelets which were 650, I started on interferon injections 80 and now 130 weekly and Aranesp 300 every three weeks, my haemaglobin has now come up to 11.5 and platelets have dropped to 450. However the fatigue has become more chronic and difficult to cope with, a symptom of MPN and compounded by the two mutations. I am pacing myself and manage just pleased that the injections are at the moment working. I am older than many of you on this site, into my early 80's..hope the above information is of help

Best wishes for your upcoming appointment, edriels.

I too have the JAK2 gene mutation. I have no symptoms and was diagnosed in April. I've only seen the specialist one time, and because I'm over 60 (age 78) he said I was high risk for blood clots that can cause strokes and heart attacks, which is the big danger with ET. He put me on one low-dose (81mg) aspirin a day to make the platelets more slippery and less likely to form clots. He said he would prescribe HU (Hydrea) to reduce my platelet count if my count got above 600k, which it most likely will as it's been increasing steadily and was 581k last time.

I've read that some doctors don't prescribe meds until the count is higher but that's what he said for me. I guess every patient is different.

He said they don't know what causes the gene mutation, that ET is not hereditary, I wasn't born with it and did nothing to cause it, and they don't know how to prevent it or cure it, but it can be managed.

From all the reading I've done on well respected websites, HU is usually the first med they use for people our age with ET, if they think meds are needed. It seems to be the one most people can tolerate and it may be the safest one as well. I am wary of taking it (or any meds actually) but I will if he says I should, because I don't want to have a stroke or heart attack from blood clots.

My oncologist/hematologist was very optimistic with me, and says he prefers to call ET a "blood disorder," although it is technically a form of blood cancer. But it's not the kind of cancer that's invasive or spreads to other organs. It's a cancer because too many cells are produced. The main danger is blood clots, although in a very small percentage of cases it can progress to something worse, but that isn't common. He said HU is a chemo drug but not one that has bad side effects for most people. It said it doesn't make you throw up or lose your hair. He was very reassuring to me. From what I've read life expectancy is about the same for people with ET who are treated as it is for other people.

I'm not a medical person but am sharing what I was recently told by my specialist so you'll know some things your doctor may tell you. You might already know it. Prayers and good wishes for a good outcome for us all.

There's a lot of good info here - thanks to all who have shared. My first visit with the Oncologist resulted in a diagnosis of Essential (hemorrhagic) Thrombocythemia and he started me on HU (one 500-mg pill a day to start). I will have another blood test in a week and will likely step up to 2/day. Good to learn that it can be monitored and kept under control.

Are you taking any meds yet?

If your oncologist advises a low-dose aspirin, purchase it in coated form. Low-dose aspirin makes our platelet-heavy blood more fluid, protecting us from clots and strokes.

If your oncologist advises hydroxyurea (HU), please be aware that starting at a low dose may be helpful. At first, I took just one 500-mg capsule each week. Then the dose was gradually increased. I believe this is why I've never suffered any ill effects from HU.

You can wander through the threads and learn so much. You can also use the search bar at the top to focus your search.

Having your questions ready for your appointment is crucial, because oncologists are busy people.

Per the Mayo Clinic, thrombocytosis is having too many red platelets. What I read says thrombocytopenia is too few. Conditions ending in penia I think refer to a lower amount of something, for example ostopenia in too little bone density. Maybe I am wrong and I am not familiar with Essential Thrombocytopenia, but it is contradictory to me. You write thrombocythemia. Oops just reread and I see spell diff and I do agree with you. It looks like others have misspelled the condition too. Thanks for clarifying.

Essential thrombocythemia is having too many platelets.

Thrombocytopenia is the term for having too few platelets.

Tongue-twisting, isn't it?