Essential Thrombocythemia: A Case Study - Jerry L. Spivak, MD

Jerry L. Spivak, MD (Johns Hopkins University School of Medicine, Baltimore) discusses essential thrombocythemia at the 10th International Patient Symposium on Myeloproliferative Neoplasms on October 23, 2019 in New York City.

[@jeanwarech4982]

I have ET. I’m going into my 6th year with this MPN. I am 66 years old. No hx of cardio vasular disease or thrombosis. Only my age. I have Jak 2 kinase. My question is, can I get a stem cell transplant? I am a twin. My twin brother will definitely donate stem cells. When I get to that stage. Thank you, excellent video! Originally my platelet count was 1,150,000.
Dr put me on Hydrea and Anagrelide. I failed Hydrea. It didn’t fail me, I failed it. I have been on Anagrelide 0.5mg q.i.d. I do the 0.5 because it is cheaper. I had breast cancer and was treated with high doses of radiation. I believe that is what caused my ET!
I realize I may be older, but I will have a new husband. I want as much time with him as I can get. I want to live and love longer! 🙏🤞🏼🎄

[@gailgray6653]

Hi Jean i have et aswell. My specialist has just suggested a transplant for me in the future. Would love to hear how you are going. Im in Melbourne, Vic, Australia. I dont know anyone with this disorder.

[@jeanwarech6428]

@@gailgray6653 Hi Gail, I’m now going into my 8th year! I am scared. I’m getting more and more symptoms.

[@jeanwarech6428]

I failed Hydroxuria. I have been on Anagrelide 0.5mg 2 in AM, 2 in PM
I take 4 everyday. I thought I had Jak 2. I don’t. I’m triple negative! They say I’ll have a bad outcome. When I get to Acute Myoloid Leukemia, I won’t respond to treatment! Have you ever listened to Dr Rubin Mesa? He’s great!
How are you doing? Your age? Mutation? I’m sorry for the questions. I’m curious. I don’t know anyone with ET. I’m in North Carolina.

[@arianaperfumes]

I am looking for a hemathologist in Bucharest, Romania who understands and applies what dr Jerry L Spivak is talking about. So far ,all 6 doctors i went to see suspect ET and are asking for bone marrow biopsy(which I refused) so they can tell the difference between ET and PV and start me on hydoxiurea , although i have no symptoms. I am 32 years old and my blood count is 800k to 1 mil platelets ,all other blood values are normal.I still have to check for Jak2, Calr, Mpl.These videos taught me more than the doctors I saw could explain, they all sounded like robots citing WHO criteria and getting mad at me for refusing the bone marrow biopsy saying only with it they can give me treatment.
If you know of such doctor please let me know.Thank you

[@dianah5547]

Hey Ariana, si eu sunt din București, stabilita in USA acum. Am 33 de ani si am fost diagnosticata cu ET in 2022 la 31 de ani. Voiam sa te intreb daca ai gasit un medic in București intre timp si ce tratament ai primit.