1. < Blood Cancers & Disorders

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.

maryshinn246 | @maryshinn246 | Jan 13 2:44pm
In reply to @bshattuck138 "My wife was diagnosed with ET/Jak2 in the summer of 2024. She's been on Hydrea since..." + (show)
@bshattuck138

My wife was diagnosed with ET/Jak2 in the summer of 2024. She's been on Hydrea since then. 1000mg 3 times /week and 500mg 4 days a week. No side affects at all. She's has run many marathons and completed many triathlons in her lifetime but is now retired from those competitions. However, she is still very active at the age of 72. Indoor cycling for now (we live in New England), hiking, aerobic classes and more with no dizziness at all. We'll be on our bikes cycling again as soon as the winter is over. She was biking in the fall with no issues last year. At least for her, the Hydrea has not slowed her down or affected her life at all! Yay!
Good luck to you,
Steve

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Does she have Polycemia Vera or just ET. I am confused. Thank you and glad she is well.!! Mary Shinn

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maryshinn246 | @maryshinn246 | Jan 13 2:48pm

Is ET with JAK 2 also called Polycemia Vera. I’m confused. Thanks and it’s so nice to be able to ask. Sincerely
Mary Shinn

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1 reply
bshattuck138 | @bshattuck138 | Jan 13 4:01pm

Hi. She has ET. It's driver, if I'm saying it right was the mutation of the Jak 2 gene. It is different than P V. The ET results in her body making too many platelets. This is a great forum. Also look into NCCN.ORG.
Steve

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janemc | @janemc | Jan 13 5:26pm
In reply to @eloise999 "That is reassuring. I am still waiting for my genetic testing results but hematologist very sure..." + (show)
@eloise999

That is reassuring. I am still waiting for my genetic testing results but hematologist very sure I have ET. The dizziness is hard to adapt to I am a bit cautious because I don’t want to fall.

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Dizziness / light-headedness can be symptoms of ET itself.
You're smart to take it slow and easy so you stay upright!

If your hematologist prescribes HU for you, once it brings down your platelet count, you'll get some relief from your ET symptoms.

This doesn't happen overnight but it's encouraging!

I got a lot of energy back once HU lowered my count from the upper 700s to the lower 500s.

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janemc | @janemc | Jan 13 5:39pm
In reply to @nohrt4me "My concern, moving into 17 years after ET started driving up my platelets, is that the..." + (show)
@nohrt4me

My concern, moving into 17 years after ET started driving up my platelets, is that the phase of feeling "great" or even "pretty good for my age" feels like it's coming to a close.

I have co-morbidities, which have symptoms similar to ET (increasing fatigue, dizziness), and that makes teasing out and treating the root cause tough.

And, at 70, I get very discouraged hearing about how great others older than me are doing. My parents lived into their 80s (even my dad with ET). I have better health habits than my patents (no smoking, no alcohol abuse, no bad diet, more activity). But I feel like my quality of life is dwindling no matter how hard I try to maintain and "be positive."

So I would like to hear from folks about coping with this next phase. Right now, diving into books and knitting projects helps. But people kinda wear me out these days, especially if they want to socialize outside my peak window between 1 and 5 pm.

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In case misery does love company . . . I get discouraged too. There are a lot more so-so days now.

And you know what? Feeling mad and bad because we have cancer is absolutely OK!!!!

The pool at the Y is my happy place. I can't do as many laps as I used to, but being in the water relieves my headaches and breathing issues.

We have to find what works for each of us. And we have to be good to ourselves, because this ET stuff isn't easy.

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1 reply
nohrt4me | @nohrt4me | Jan 14 7:16am
In reply to @janemc "In case misery does love company . . . I get discouraged too. There are a..." + (show)
@janemc

In case misery does love company . . . I get discouraged too. There are a lot more so-so days now.

And you know what? Feeling mad and bad because we have cancer is absolutely OK!!!!

The pool at the Y is my happy place. I can't do as many laps as I used to, but being in the water relieves my headaches and breathing issues.

We have to find what works for each of us. And we have to be good to ourselves, because this ET stuff isn't easy.

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Thanks for staying on topic, anyway. Lots of folks on these threads who have been dealing with ET for only a short time, and either want reassurance that everything is fine or to talk about how well they're doing.

Yes, I do feel I am losing ground with my health overall, but clearly this is the wrong forum for airing it.

So going to take a break from here and look for other ways to address my issues.

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2 replies
janemc | @janemc | Jan 14 7:17am
In reply to @maryshinn246 "Is ET with JAK 2 also called Polycemia Vera. I’m confused. Thanks and it’s so nice..." + (show)
@maryshinn246

Is ET with JAK 2 also called Polycemia Vera. I’m confused. Thanks and it’s so nice to be able to ask. Sincerely
Mary Shinn

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There's a lot to take in!

Our blood has four main components: White blood cells, red blood cells, plasma and platelets.

With the various blood cancers, the mix goes a bit bonkers.

If you have ET, your blood marrow makes too many platelets.

If you have Polycythemia vera, your blood marrow makes too many red blood cells.

HU treats both ET and PV.

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janemc | @janemc | Jan 14 7:26am
In reply to @nohrt4me "Thanks for staying on topic, anyway. Lots of folks on these threads who have been dealing..." + (show)
@nohrt4me

Thanks for staying on topic, anyway. Lots of folks on these threads who have been dealing with ET for only a short time, and either want reassurance that everything is fine or to talk about how well they're doing.

Yes, I do feel I am losing ground with my health overall, but clearly this is the wrong forum for airing it.

So going to take a break from here and look for other ways to address my issues.

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THANK YOU for the help you gave me when I was in shock from the diagnosis.

You're right, that is the crisis that brings most of us here.

But then comes the next challenge -- OK, I've got this AND I have to live with it until I die?

I haven't been really happy about anything since I was diagnosed in October 2024. I get through my chores and don't have any spark left for fun.

I'm just a few months into this! You have been carrying the burden for 17 years.

Please find something that gives you joy. Know your posts have meant the world to lots of us.

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Mentor
Lori, Volunteer Mentor | @loribmt | Jan 14 9:18am
In reply to @nohrt4me "Thanks for staying on topic, anyway. Lots of folks on these threads who have been dealing..." + (show)
@nohrt4me

Thanks for staying on topic, anyway. Lots of folks on these threads who have been dealing with ET for only a short time, and either want reassurance that everything is fine or to talk about how well they're doing.

Yes, I do feel I am losing ground with my health overall, but clearly this is the wrong forum for airing it.

So going to take a break from here and look for other ways to address my issues.

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Good morning, @nohrt4me I hope you won’t take too long of a break! ☺️ I think I can speak for all of us in the group with how much we truly value you sharing your life experiences with ET and well, just life!

I’ve said it before here in Connect, but I like to think of us all sitting around a kitchen table having our morning beverages, snacking on coffee cake, hashing out the good, the bad and the ugly of whatever life is tossing at us. I grew up with my mom, auntie and grammy talking about everything under the sun around that table... Some days it was nothing but whining and blue smoke. LOL. Other days, there’d be resolution or commiseration or a 3 tissue box discussion over loss. And just like the kitchen table the conversations in some of the discussions do veer off topic.

I know you are hoping to get responses from other ‘members who have ET with the CALR mutations and the impact long term. To get a better understanding on the potential progression of the disease. Give it time, they will find you.
In the meantime, this discussion, even though it zigs and zags, is valuable to the other members who maybe are new to the site or to ET and will appreciate the openness, honesty and vulnerability of the conversations here.

I hope you’ll rejoin the table soon…I’ll bring the coffee cake. ☺️

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1 reply
1pearl | @1pearl | Jan 14 10:22am

Hi,
I am just curious how those of you with diagnosis of essential thrombocytosis had diagnosis confirmed. Is just high platelets enough? What if platelets are decreasing with no treatment, but white blood cells are high, and neutrophils are increasing? I ask because I went to doctors for four years about my very enlarged right ring finger proximal phalange joint. MRI from two years ago was unable to determine problem and that radiologist recommended needle aspiration to rule out infection. Rheumatologist I saw through difference insurance now since I became Medicare age recently ordered ultrasound guided needle aspiration about two weeks ago but hasn’t been able to find where to schedule me for that. I think infection should be ruled out before I take Hydrea which is a serious cytotoxic chemo med.
In summary, how were those in this group with ET have their diagnosis confirmed? If you are comfortable sharing, please comment.
Thanks

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