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