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

Keep us posted!

@anavleek I have been taking HU for over 30 years and never had a problem. I pick it up all the time and place it on my tounge then get some water. Maybe I have just gotten used to it. My platelets need to stay under 500K and this week I start on my Besremi injections so I will say good by to HU. It has been a lifesaver for me for so long. Embrace the drug so that it does what you need it to do. None of us expected to end up with these bone marrow proliferations, but the treatments will keep you from having a stroke, which is much worse than the side effects. Good luck and take good care! leene

Thank you so much for your input. Someone else here said not to touch the pill because it is highly toxic, that’s a bit scary. It’s a bit strange my pharmacist didn’t even mention that to me. I am a bit scared to take it, but it seems that is the only treatment for it with my age , 61 . Thanks again any input is much appreciated! Ana

Last few weeks , I have been suffering with headaches, nausea and the fatigue has worsened, still on interferon and Aranesp injections, is it likely my mpn ET is progressing , will see my haematologist next week, anyone experiencing similar problems

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.