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)