Anyone living with Essential Thrombocythemia with JAK2?
Has anyone been living with,ET, jac2 mutation
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
Has anyone been living with,ET, jac2 mutation
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
@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.
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5 Reactions@makindoilies
So you would say your platelet count stays stable longer this way...not just to ease sluggish symptoms during the day.
I have no trouble with energy level on HU ...so my interest is the stabilization factor.
Thanks.
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1 Reaction@debhammel
Thanks...I'm thinking splitting the dose might be more helpful.
@kat260
Thanks, kat, and prayers that your new treatment continues well!
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2 Reactions@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?
@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.
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3 Reactions@debhammel
Thanks and that's encouraging to hear!
I was having tingling so they told me to leave the HU off on weekends. Platelets were in the low 200s. My red count is just slightly below normal and white count is at the bottom of normal. This concerned me a little but PA said the numbers are very good. I'm hoping my platelets behave with the reduced HU.
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2 ReactionsNewly diagnosed and waiting for bone marrow biopsy results now. What is the standard treatment for most? TY!
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2 ReactionsHas anyone had to lower or stop hydroxyurea because of anemia?
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1 Reaction@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!
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