Starting 17th year with ET. What's ahead?

Posted by nohrt4me @nohrt4me, Dec 29, 2024

I developed ET-CALR in my early 50s, diagnosed at 60, on hydroxyurea and aspirin at 64, now 70. HU has kept platelets stable in 400s with occasional spikes to 500s.

Conventional wisdom is that "many people live for 20 years with ET just fine." But what happens after that?

I'd be interested in hearing from other longtime ET patients. Did your docs do more tests at the 20 year mark? Was progression to MF or AML more of a concern? Did HU start to lose its punch for you? Were you advised to do anything different?

We're all different, and those of us with CALR mutations are pioneers (or guinea pigs, depending on how you look at it) because that mutation was only discovered within the last decade or so. How ET plays out for us may be different.

I'm not a big worrier, but I do like to get a gander at what's around the next bend, even if the answer is "nobody knows." Thanks!

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

@eloise999

I am new to my diagnosis. I am triple negative ET. It looks like that is a small percentage of ET patients. Does anyone here have it? What are the differences? What should I be aware of or look out for. Are treatments the same or do I have a more limited set of drugs?

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Hi eloise999,
I also have ET and I am triple negative. I take hydrea since age 60 and aspirin since diagnosis. I have had this since 2002, that would be 23 years now.
Here is a website I fine very helpful. It takes several readings to start to comprehend.
I am doing well. I hope you are doing well too. Hope you have a good hematologist/oncologist.
Let me know if you want me to share more about living with ET (triple negative).
https://www.nccn.org/patients/guidelines/content/PDF/mpn-patient.pdf

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@lynnevb

Hi eloise999,
I also have ET and I am triple negative. I take hydrea since age 60 and aspirin since diagnosis. I have had this since 2002, that would be 23 years now.
Here is a website I fine very helpful. It takes several readings to start to comprehend.
I am doing well. I hope you are doing well too. Hope you have a good hematologist/oncologist.
Let me know if you want me to share more about living with ET (triple negative).
https://www.nccn.org/patients/guidelines/content/PDF/mpn-patient.pdf

Jump to this post

Thank you very much. I am sure I will have a lot of questions. I am glad you are doing so well.

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