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People living with ET and taking Hydrea: Anybody setting records?

Posted by lefsequeen @lefsequeen, Feb 5, 2021

I've been wondering if there are any stats on people who have lived the longest with ET and taking Hydrea? As I hit the 30-year mark soon, I'd like to know about long-term survivors! 🙂 Guess I'm looking for some encouragement--haha!

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lefsequeen | @lefsequeen | Mar 27 1:46pm
In reply to @cwhern18 "Hello all! I am new to this forum and I am so glad I happened upon..." + (show)
@cwhern18

Hello all! I am new to this forum and I am so glad I happened upon it. It's been so helpful to hear experiences of others that are living with ET. I'm 70, and was diagnosed in November 2023 through routine blood work. Platelets were over one million so I was started on hydroxyurea 500 MG also. Bone marrow biopsy showed JAK2 and also SF3B1 gene mutation. Has anyone else had this result? I can't really get a satisfactory answer from my hematology doctor on the significance on this, and I can relate to some comments I've read here about frustration with the doctors' answers. The HU was very effective in lowering the platelet count with minimal symptoms. Started on 500 MG four a day, and now down to 2 per week, Monday and Friday, and level was in the 300's last week. I'm not as scared as I was at first, largely due to this forum and all your comments! I'm very grateful to learn that this condition can be managed and treated. I do wish my doctor would provide more info in addition to blood levels.

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I also started with platelets over one million at age 39. Now I'm 69. I'm also JAK2 positive. After 30 years, I often hear from new hematologists (I've gone through a lot!) that I likely know more about living with the disease than they do, since they don't encounter it very often, especially for someone like me who's had it for 30 years. So, if it's a good doc, generally he/she looks at what I've done to treat it, the success I've had, and tell me to carry on and check in every 6 months. If HU is working at that low of a dose for you, that's great. I'd say that as long as HU is working well for you, try to minimize your stress and not worry too much. No one seems to really have answers to the "why" questions, and you may drive yourself crazy in your determination to figure it out. So I just decided to live comfortably with gray areas in my life!

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1 reply
jlore | @jlore | Mar 28 11:35am
In reply to @lefsequeen "I also started with platelets over one million at age 39. Now I'm 69. I'm also..." + (show)
@lefsequeen

I also started with platelets over one million at age 39. Now I'm 69. I'm also JAK2 positive. After 30 years, I often hear from new hematologists (I've gone through a lot!) that I likely know more about living with the disease than they do, since they don't encounter it very often, especially for someone like me who's had it for 30 years. So, if it's a good doc, generally he/she looks at what I've done to treat it, the success I've had, and tell me to carry on and check in every 6 months. If HU is working at that low of a dose for you, that's great. I'd say that as long as HU is working well for you, try to minimize your stress and not worry too much. No one seems to really have answers to the "why" questions, and you may drive yourself crazy in your determination to figure it out. So I just decided to live comfortably with gray areas in my life!

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Gracias por contar su experiencia ,yo tengo 49 y tengo que empezar a medicarme por plaquetas altas ,eso que cuenta me da esperanza.

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1 reply
lefsequeen | @lefsequeen | Mar 28 11:40am
In reply to @jlore "Gracias por contar su experiencia ,yo tengo 49 y tengo que empezar a medicarme por plaquetas..." + (show)
@jlore

Gracias por contar su experiencia ,yo tengo 49 y tengo que empezar a medicarme por plaquetas altas ,eso que cuenta me da esperanza.

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Bendiciones!

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