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

I have a question about the effects of HU. The doctor, PA, and I expect I'll have to start it at some point (he said when my count is over 600k), as my last count was 581k. I know it reduces production of platelets in the bone marrow, but does it also reduce the production of red blood cells and white blood cells? My counts on those are fine and don't need to be reduced.

I know these are questions for the doctor at that time, but this forum is such a great resource I'd like to hear from those who are taking it. Are your other blood cell counts okay while taking HU?

Thanks.

I am brand new to this forum and have yet to be formally diagnosed by an oncologist/hemotologist. That said, my last routine blood test had a platlet count of 867, so I'm trying to learn as much as I can before my appt next week. I also have a JAK2 V617F mutation. Just turned 75. Retired Navy. Thanks to all of you who have posted comments on this thread.

The instructions I received with the capsules said do not touch them with your hands. When taking the capsule I dump it from the prescription bottle into a small disposal cup (bathroom dixie cup). I fill my mouth with water and empty the capsule, from the cup, into my mouth. This has worked for me.

I took HU , was not told i could t touch it. Now im on OJJAARA that definitely came with warnings and gets shipped in biohazard bags.

Nohrt, yes it is helpful and I thank you. I hope your fatigue improves, but just yield to what your body is saying when it's yelling at you to rest.

Hi Ana,
I have never had any issues touching the capsules and I've been taking it over 20 years. I guess you could be more sensitive to it. The instructions , when you look it up online do say not to touch it... I take it once a day and two on Monday, Wednesday, and Friday.

Welcome to Club ET. I have had it for about 17 years, tho researchers say the driver mutation (mine is CALR) is likely detectable for many years, even decades, before it shows up in abnormal CBCs. Once the flurry of diagnosis is over, the course of the disease slows to a c-r-a-w-l. Hence "chronic but indolent."

I am 70, on Year 7 of hydroxyurea (HU). Platelets swim around in 400s, and doc calls that "stable." No blood clots, bleeds, or skin cancers from the ET. Can't seem to shake fatigue in the past year, but given my dad's experience--he also had ET--I'd say we all age at different rates and I suspect that ET exacerbates anything else you have. That wonky blood feeds all your other organs, after all.

There are many folks here well into their 70s who feel great with ET! I'm not one of them right now, but I do work at maintaining perspective and not being a trial to myself and others. I wish there were more long-timers here to talk about long-term effects of ET, but glad to share with newer patients if that's helpful.

Thank you for the reactions and I'm glad to see a new post, too. The posts are helpful and reassuring to me, as all this is new for me.

I want to be part of an active discussion as my treatment progresses. Thank y'all and God bless!

Hi all, I was diagnosed with ET about 15 years ago. They first tried anagrelide but it gave me awful headaches. Then they put me on hydroxyurea every other day. After a while I started taking it every day and now it's 2 on Monday, Wednesday and Friday 1 a day the rest of the days. My numbers are still over 600 typically. You will find that if you have injuries or surgeries the numbers will spike. I go for labs every 4 months to keep a check on it. I never had any reaction at all to the hydroxyurea. I guess im lucky that way.
I was shocked to hear it was a cancer because the doctors in the past just called it a blood disorder.
I have was diagnosed with stage 3 melanoma in January 2022. I went through 13 months of immunotherapy and I've been cancer free since then. As little as about 10 years ago melanoma would have been a death sentence and now it's treatable! So hopefully there may be more effective treatments for ET than aspirin and hydroxyurea. So hang in there...

Hi Ana,

Your question and comments and the replies are already helpful to me; my thanks to all.

I just found this forum and this page popped up. I don't know if anyone will see this reply but here goes.

My story and limited knowledge, so far:

I've recently been diagnosed with JAK-2 positive ET and sent to a specialist. Other causes of my high platelet count were ruled out but no blood marrow biopsy was done. My platelets have been slowly and steadily increasing for quite some time and are now 518k. Everything else is normal. The specialist said if they get above 600k he will put me on Hydrea. He said it is a chemo drug, but not to freak out because for most people it is well tolerated and "just a pill you have to take." He said for most people it doesn't make you throw up or lose your hair. He also said ET can (rarely) progress to a form of leukemia in a very small percentage of cases, or cause blood marrow problems, but the biggest danger is blood clots which can cause strokes, heart attacks, or go to the lungs fatally. He put me on a low-dose aspirin a day to make the platelets less sticky. Btw, I have no real symptoms, just the high platelet counts.

I've of course been reading like crazy about this disorder and the drug. I just finished reading two clinical studies tonight and then found this forum from the same Google search. I'll share what they said. Some of it was Greek to me but some was in plain English.

The studies reassured me (and I hope they will reassure you), because both agreed Hydrea (by any of its names) is often the first line treatment for ET, especially for people over the age of 60 or who have had previous blood clots. Much younger people may be given something else first. I haven't had clots but I'm 78, so I sure qualify age-wise! (Yes, I know I'm blessed to not have had the problem sooner.) The studies showed that Hydrea did reduce blood clot (they used the medical name) events, and had a lower incidence of causing leukemia than some of the other drugs that could be used for ET. The studies reassured me. (I hate to take meds because I know they go all over your body and can do unintended things, but I know sometimes they can be life savers.)

My specialist said they don't know what causes ET, nor how to prevent it, and nothing I did caused it. It's not known to be hereditary (thankfully) and is rare. It's not curable but is treatable, and the prognosis is good. He said it is technically a form of blood cancer but he'd prefer to call it a blood disorder or blood condition. It's not invasive. It was a bit unsettling to have to go to a cancer center but I'm thankful to have good doctors nearby. From what I've read life expectancy is about normal, especially for those 60 or older. At my age I probably shouldn't worry about ET!

The PA I also met told me I'll likely have to go on Hydrea because I'm already so close to 600k. I think, just as with all meds, we have to weigh the risks to the benefits. Hydrea has a very small risk of causing leukemia, but ET itself also has (maybe a larger?) chance of causing it, too. And the risk of fatal blood clots is a huge factor.

All the replies here have made me feel so much better about having to take this drug, if I do. I admit I didn't want to even think about it. I have to go back in 3 months. THANK YOU, THANK YOU, all!

And Ana, good luck to you, and everyone else, with your treatment. I share your concerns. Please post how you are currently doing.

(Sorry so wordy. I'm a fast typist which is probably a forum curse, LOL.)

J. (cec2)