← Return to Essential Thrombocythemia: Looking for information and support

Discussion
Comment receiving replies
Profile picture for leene808 @leene808

@asindelar your story is familiar to mine for sure💕 i had to keep my platelet count down below 600k to keep from having TIAs thats why i went on hydroxyurea 35 years ago. I must say it really worked well. The only thing I can say it affected is my immune system. My hair loss was minimal and my skin did suffer from more squamous cell carcinomas. But living in the sun for so long also affected my me. Recently I’ve changed to the new drug (2014. Approved .) Jakafi. This has made a huge difference. It is marketed for polycythemia but your onc doctor can prescribe it for ET. You have to try hydrea first possibly and show you cannot tolerate it. After being on Jakafi for a month i have improved my energy and my hair is growing thicker and my skin feel and looks better than ever! Ask doc about that and see if it can be prescribed. Its not chemo and is more targeted. You will live a full life ! You do not want to keep having TIAs! That could turn into a stroke! Get the counts down however you can and good luck and good thoughts 💕🌺leene

Jump to this post


Replies to "@asindelar your story is familiar to mine for suređź’• i had to keep my platelet count..."

@leene808 Thank you so much, Leene. Your message honestly brought me a lot of comfort. I’ve been so scared about being on hydroxyurea for decades, and hearing from someone who’s been on it for 35 years and is doing well gives me hope.
I have two young kids, and my biggest fear since my TIA/stroke has been not being here to watch them grow up. Reading your words, especially “You will live a full life,” meant more to me than you know.
I really appreciate you taking the time to share your experience and tell me about your transition to Jakafi. If you don’t mind, I’d love to hear how you’re doing in a few months. I hope it continues to work well for you.
Wishing you continued good health, and thank you again for your kindness. ❤️