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.

lynnevb | @lynnevb | Jan 19 2:30pm

In reply to @eloise999 "I am new to my diagnosis. I am triple negative ET. It looks like that is..." + (show)

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

eloise999 | @eloise999 | Jan 19 4:08pm

In reply to @lynnevb "Hi eloise999, I also have ET and I am triple negative. I take hydrea since age..." + (show)

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

anavleek | @anavleek | Apr 13 12:08am

In reply to @1pearl "If you don’t mind sharing, how high were you platelets when first diagnosed?" + (show)

I believe she said 800.

nohrt4me | @nohrt4me | Apr 13 8:48am

In reply to @lynnevb "Hi eloise999, I also have ET and I am triple negative. I take hydrea since age..." + (show)

As another long-timer (17 yrs ET CALR), I agree that this is a really good source of info!

1pearl | @1pearl | 6 days ago

In reply to @anavleek "I believe she said 800." + (show)

988 when diagnosed with ET on 1/10/25 and 844 when diagnosis changed to Myelofibrosis one 2/10/25

lynns51 | @lynns51 | 6 days ago

I have recently been diagnosed with ET. I am currently at 601,000, but my platelets have been rising steadily for two years. There is a mutation on the CALR gene, so this won’t go away. When I hit 750,000, my doctor will prescribe Hydrea. I have had headaches and am very tired most of the time. I thought this was caused by having had COVID19 in 2020, but what I read here is it might be the ET and Hydrea will help eliminate the fatigue and headaches. Has anyone experienced this?

anavleek | @anavleek | 6 days ago

In reply to @1pearl "988 when diagnosed with ET on 1/10/25 and 844 when diagnosis changed to Myelofibrosis one 2/10/25" + (show)

What is your mutation ? It changed so quickly ?

Colleen Young, Connect Director | @colleenyoung | 6 days ago

In reply to @lynns51 "I have recently been diagnosed with ET. I am currently at 601,000, but my platelets have..." + (show)

Welcome, @lynns51. I moved your question about about ET with CALR gene to this existing discussion:
- Starting 17th year with ET. What's ahead? https://connect.mayoclinic.org/discussion/starting-17th-year-with-et-whats-ahead/

I did this so you can read previous posts and connect easily with members who have walked this path before you like @nohrt4me @lynnevb @et1055 @lynnebgraham @janemc and many others.

How are you managing the fatigue and headaches?

lynnebgraham | @lynnebgraham | 6 days ago

I have good days and bad days, who doesn't. Find have nap in the afternoon helps recharge my batteries. No headaches so that is good. 🙃🙃

lynns51 | @lynns51 | 6 days ago

In reply to @colleenyoung "Welcome, @lynns51. I moved your question about about ET with CALR gene to this existing discussion:..." + (show)

I act like I’m not tired, and that makes it worse! The headaches go away if I take 25mg Imitrex my doctor prescribed for me. It works great! I didn’t tell my hematologist/oncologist that I am tired because I am 73 and thought my age and COVID19 are to blame.

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