Essential Thrombocythemia: Looking for information and support

@leene808
Your story came up while I was researching hydroxyurea (HU), and I wanted to reach out.
I was diagnosed with essential thrombocythemia (ET) when I was 26. My platelet count was around 900,000, and I tested positive for the JAK2 mutation. Since I didn’t have other risk factors and I was planning to have children, my hematologist kept me on low-dose (baby) aspirin for many years.
I’m now 47, and I recently had a TIA. Because of that, my doctor has recommended starting hydroxyurea in addition to the baby aspirin. My platelet count is currently in the 600,000–700,000 range.
To be honest, I’m terrified of the idea of being on hydroxyurea for decades. ET can feel like a lonely condition because it’s so uncommon, and it’s hard to find people who truly understand what it’s like.
I’m hoping to learn from others who have taken hydroxyurea long-term. How have you tolerated it? Have you experienced significant side effects? Has it affected your immune system or your quality of life over the years?
Thank you for sharing your story. It has already given me hope.

@asindelar hola. Yo actualmente tengo 43 años, me diagnosticaron a los 31 años y al poco tiempo comencé con hidroxiurea. Ya llevo 12 años tomándola a diario!! Y espero poder continuar muchos años más ya que me considero muy joven..
Los efectos secundarios que he tenido son la fatiga y aumento de pérdida de cabello (pero tengo pelo, solamente que más fino y menos densidad).
Espero mi experiencia te sirva de ayuda, saludos!

@vivoconte Hola! Muchas gracias por compartir! La verdad estaba muy preocupada y asustada de empezar la medicina. Pero todas las historias que he leído en este fórum me han hecho sentir mucho mejor mentalmente. Si eres muy joven! Yo soy unos años mas grande que tu, pero me considero joven también!
Si no es mucha molestia compartir, has tomado suplementos para combatir la pérdida de cabello y fatiga? Hay algo que te ha ayudado? Al cuanto tiempo de tomar la medicina te dieron esos síntomas?
Muchas gracias! Has alegrado mi día y mis preocupaciones. Saludos!!

@asindelar, no sé decirte exactamente cuanto tiempo después de comenzar la medicación empecé con los síntomas, pero si puedo decirte que la fatiga la manejo haciendo actividad física dos veces por semana y descansando sin culpa cada vez que lo necesito.
Para el pelo comencé hace 3 meses a aplicar minoxidil tópico porque luego de tantos años de caída era necesario actuar. Por ahora el minoxidil me está dando resultado, aún se cae pero menos cantidad y me está creciendo mucho pelo nuevo, eso me tiene muy contenta!

@asindelar

Remember, aspirin is "Robin" to HU's "Batman." They work best as a team!

Aspirin makes our platelet-heavy blood slippery, less prone to clotting.

HU tells our bone marrow KNOCK IT OFF with the platelet production.

Don't be put off with the "C" word. LeukemiaLymphomaSociety has wonderful website with resources and information. Go to a conference if near by. I went and was very impressed with all the presentations. BTW, they renamed themselves BloodCancerUnited. I've been taking hydroxyurea (HU) for 6 years now, only first year my gut was unhappy. Platelets under control, and I'd rather be taking HU than getting a stroke or heart attack from clots....

Don't be put off with the "C" word. LeukemiaLymphomaSociety has wonderful website with resources and information. Go to a conference if near by. I went and was very impressed with all the presentations. BTW, they renamed themselves BloodCancerUnited. I've been taking hydroxyurea (HU) for 6 years now, only first year my gut was unhappy. Platelets under control, and I'd rather be taking HU than getting a stroke or heart attack from clots....

@janemc I wish the Hydroxyurea was more effective at that. Depending upon what I eat, my platelet count can shoot through the roof, Hydroxyurea or not. If I eat what the doctors and nutritionists recommend (a "balanced diet" with Omega 3 fatty acids, leafy greens,etc) it raises my platelet count. As soon as I stopped eat salmon and tuna and cheddar cheese, my platelets dropped back to the normal range. I can't eat grains and dairy because it raises my blood sugar and I don't want to wind up obese and diabetic again. I'm left with nothing to eat but meat, which works fine for me because it's the staple of my paleo diet, but then doctors tell me it's causing my supposed kidney disease that I have never had any symptoms of. So, what CAN I eat, then?!

@1995victoria When I was first prescribed Hydroxyurea, my platelet count had been recently discovered to be in the millions, yet I had no clots or any worries about heart attack or stroke. The HU relatively quickly brought my platelet count into the normal range, after tinkering around with the dosage for a few months.