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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!

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lynnevb | @lynnevb | 4 days ago

Hi NoHRT4me,
I was diagnosed in 2003 with ET, 22 years now. I seem to be doing pretty well. I have been taking baby aspirin mostly the entire time. I will admit in the early days I did not understand completely how important it was to my health, but of course now I do. I have been on Hydrea since age 60. I am now 70 yo. I get my blood tested monthly and see the Hem Oncologist every 3-4 months. I am active, eat healthy diet and never skip my meds or antioxidants or probiotics. My weight is within the normal range. I also do take HRT and have been on this since age 54, this has been key to my mental and physical well being. If you have and questions or comments please reach out and all the best to you in 2025.

REPLY
nohrt4me | @nohrt4me | 3 days ago

Thanks for the response. Glad to hear you are doing well!

I have to work to keep weight off because congenital back/heart trouble restricts activity. The cardiologist says not to expect to feel better after the mitral valve repair, just not to get worse. So I don't have a lot of impetus to get that fixed asap. However, my Medicare plan is being "revised" in 2026, so may have repair this year so as not to have insurance surprises.

After my husband's heart attack we both benefited from his new diet, especially in cholesterol levels. I also lost a bit of weight. Sadly the Season of Too Many Cookies and Binge Viewing is upon us, so back to some heightened vigilance about diet and exercise. One of these years it will sink in that the aftermath of holiday sugar and starch isn't worth the momentary pleasure.

My oncologist has been encouraging but vague about ET patients' long-term prognosis, especially CALR, and the long-term effects of HU on co-morbidities.

I get blood checks every three months, but only see her yearly. She suggested every 6 months, but I hate driving in the city and got her to agree to yearly visits if I was assiduous abt blood checks and calling in with any problems.

As things go, I feel well enough to do the things I enjoy except for riding a bike outdoors. Used to be able to go miles and miles out past the cornfields here and see wildlife. Last time I tried I got too dizzy.

Thanks for you thoughts. Good to connect with another long-timer.

Yikes, this was long-winded. Sorry!

REPLY
1 reply
et1055 | @et1055 | 1 day ago
In reply to @nohrt4me "Thanks for the response. Glad to hear you are doing well! I have to work to..." + (show)
@nohrt4me

Thanks for the response. Glad to hear you are doing well!

I have to work to keep weight off because congenital back/heart trouble restricts activity. The cardiologist says not to expect to feel better after the mitral valve repair, just not to get worse. So I don't have a lot of impetus to get that fixed asap. However, my Medicare plan is being "revised" in 2026, so may have repair this year so as not to have insurance surprises.

After my husband's heart attack we both benefited from his new diet, especially in cholesterol levels. I also lost a bit of weight. Sadly the Season of Too Many Cookies and Binge Viewing is upon us, so back to some heightened vigilance about diet and exercise. One of these years it will sink in that the aftermath of holiday sugar and starch isn't worth the momentary pleasure.

My oncologist has been encouraging but vague about ET patients' long-term prognosis, especially CALR, and the long-term effects of HU on co-morbidities.

I get blood checks every three months, but only see her yearly. She suggested every 6 months, but I hate driving in the city and got her to agree to yearly visits if I was assiduous abt blood checks and calling in with any problems.

As things go, I feel well enough to do the things I enjoy except for riding a bike outdoors. Used to be able to go miles and miles out past the cornfields here and see wildlife. Last time I tried I got too dizzy.

Thanks for you thoughts. Good to connect with another long-timer.

Yikes, this was long-winded. Sorry!

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I had open heart mitral valve repair in 2009. My surgeon said I will feel worse for a while after the surgery, but then would improve – – he was right. The first three months after surgery was not fun, however, after that I was so much better, that it was definitely worth going through with the surgery.
I was diagnosed with ET in 2024. – – Still getting used to it.
All the best to you♥️

REPLY
1 reply
nohrt4me | @nohrt4me | 1 day ago
In reply to @et1055 "I had open heart mitral valve repair in 2009. My surgeon said I will feel worse..." + (show)
@et1055

I had open heart mitral valve repair in 2009. My surgeon said I will feel worse for a while after the surgery, but then would improve – – he was right. The first three months after surgery was not fun, however, after that I was so much better, that it was definitely worth going through with the surgery.
I was diagnosed with ET in 2024. – – Still getting used to it.
All the best to you♥️

Jump to this post

Thanks for yr response! So glad you felt better! I have told the cardiologist I want the trans cath procedure. I know he prefers the OHS. So I dread the wrangling ahead.

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