Anyone living with Essential Thrombocythemia with JAK2?

Newly diagnosed and waiting for bone marrow biopsy results now. What is the standard treatment for most? TY!

@pps26

You've just been diagnosed with ET? Condolences! This is a "jackpot" none of us wants to win.

Your bone marrow results will help your oncologist determine your best treatment plan.

IF medication is considered for you . . . the go-to drug for ET is hydroxyurea (HU). HU tamps down ET's over-production of platelets. It works really well for me. HU's taken in capsule form.

Low-dose, coated aspirin is also often recommended. Aspirin makes our platelet-heavy blood more slippery, easing circulation.

Just-approved for ET (and PV) is Besremi, which is administered by injection.

HU is widely available and pretty inexpensive. Besremi is quite expensive, but is believed to not just suppress platelet production, but reduce the cause of platelet over-production.

No medication is entirely wonderful. Some people have problems with these medications. Please remember, though that left untreated, ET can make you pretty miserable with exhaustion and terrible headaches. It also makes you more vulnerable to blood clots and strokes.

Your own oncologist -- not me, not Google -- should decide what's best for YOU.

Please keep asking questions. Some one here will have the answers!

Has anyone had to lower or stop hydroxyurea because of anemia?

Newly diagnosed and waiting for bone marrow biopsy results now. What is the standard treatment for most? TY!

@cec2 No neuropathy. My red blood cell count is slightly low and white blood cell count is normal. My Heme/Onc is not concerned at all and says my blood counts indicate that I am doing very well on HU. He also regularly reviews the portions of the blood tests that indicate kidney and liver function and says both are fine.

@debhammel
That's such good news that your treatment is working so well! Thanks for sharing.
How are your red and white blood cell counts, and have you had any neuropathy?

@mjfp49 My O/H told me to take HU twice a day. He didn't specify when, and I take one 500 mg capsule with breakfast and one with dinner. Seems to work for me - I was diagnosed in October, 2023 and HU brought my platelets down from 792 to right around 200 very quickly - and I've been stable since then.

@cec2 Hi and thanks for your reply. I haven't checked in here for a while either.
Interesting. As time goes on, I'm sure we'll find out more about the effects of the covid shots and covid itself. Fyi, I had 3 shots of Astra Zeneca (the one related to thrombotic events about 2 weeks after the shot, in people over 50). My platelets started increasing a few weeks after my first shot. I only know this because I had regular blood tests to monitor other conditions and my GP showed me on a graph which was pretty obvious. I have had covid 3 times and don't do any covid boosters.
Regarding the different protocols in treating ET, I thought I'd give you an update as my treatment plan has changed dramatically.
With my original Haematologist I was only on 1 asprin 100mg, platelets 900's. When I changed to an MPN specialist 3.5 months ago, I increased to 2 aspirin and added 2 x 500mg Hydroxy per day. My platelets dropped from high 900's to high 200's in just 8 weeks. I was then reduced to 1 aspirin, 1 Hydroxy. I'm currently on 1 Hydroxy 3 times per week but I also started Pegasys 45mcg mid July. I've now had 2 increased doses of 67.5mcg. So far so good with main side effect being fatigue but it's manageable. I feel very lucky so far and hope I will remain well as the dose is increased with the aim to drop the Hydroxy altogether.
Platelets 326 last week, white cell count had been increasing slightly but now in normal range. Liver numbers also slowly increasing, still higher than normal range but nothing crazy. I'm now 61, also have family history and a moderate calcium score so I am also high risk.
Wishing you all the best in your treatment. It really is a lottery and there seem to be varied treatment plans depending on who you see. My MPN specialist is confident that there will be other treatments upcoming in the not too distant future so I am ever hopeful for that.