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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!

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

eloise999 | @eloise999 | Jan 12 9:08am
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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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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2 replies
eloise999 | @eloise999 | Jan 12 9:17am
In reply to @1pearl "Hi Lori, Yes, I had JAK test and negative. I think they ordered more tests that..." + (show)
@1pearl

Hi Lori,
Yes, I had JAK test and negative. I think they ordered more tests that are not back yet as take more time. I do have an enlarged proximal phanangeal right ring finger joint and sternoclavical joint with no pain but deformed bone but never really determined cause but I have not had injuries or falls to cause them. I did have hand MRI saying to rule out inflammation/infection which was never done. I have negative rheumatoid factor from lab and no psoriasis. I might be able to get a new hand MRI to compare but Hydrea and aspirin is recommended for life now. Hand specialist I saw for first issue in 2023 was pretty useless and did know what I have from the MRI and wanted to do exploratory surgery which I declined. Difficult to get second opinion and rheumatologist did not know what it is either. Mostly frustrated appointments with docs I must say.

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Was the rheumatoid factor testing part of the testing your doctor automatically did? I am waiting for my genetic testing results to confirm ET, but no one mentioned the rheumatoid factor. My mom had rheumatoid arthritis. She got it late in life and it was very severe. My symptoms fit ET diagnosis but I want to make sure there is not another problem lurking.

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1 reply
1pearl | @1pearl | Jan 12 9:28am
In reply to @eloise999 "Was the rheumatoid factor testing part of the testing your doctor automatically did? I am waiting..." + (show)
@eloise999

Was the rheumatoid factor testing part of the testing your doctor automatically did? I am waiting for my genetic testing results to confirm ET, but no one mentioned the rheumatoid factor. My mom had rheumatoid arthritis. She got it late in life and it was very severe. My symptoms fit ET diagnosis but I want to make sure there is not another problem lurking.

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Hi,
I was sent to rheumatology after primary, so yes, rheumatologist ordered that test and it was also negative.

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1pearl | @1pearl | Jan 12 9:35am

Hi Steve,
Thank you for your reassuring comment. I hope to be like your wife and be able to continue the exercise we do here which is biking outdoors as our weather is decent year round with no snow nor even much rain here, walking, hiking, yoga, stretching, swimming in summer, and light strength training.
I know they are still waiting for more test results for me to rule out the dreaded myeloid leukemia that ET can become.
Have a blessed Sunday

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1pearl | @1pearl | Jan 12 9:37am
In reply to @janemc ""Frustrated" is how lots of us feel when we develop complicated health issues. Answers don't come..." + (show)
@janemc

"Frustrated" is how lots of us feel when we develop complicated health issues.

Answers don't come easily.

You are doing everything right: Seeing a hematologist/oncologist, getting tests, and while awaiting further explanations, protecting yourself by taking HU and aspirin.

Having a blood issue you probably didn't even know was possible can make you feel really alone. In this forum, though, you're among friends. We've all been through it. We're here for you.

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Thank you for your positive support.
Have a blessed Sunday

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bshattuck138 | @bshattuck138 | Jan 12 9:38am
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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Good luck with it all. I wonder if the dizziness could be from something else. Hydrea seems to affect people differently. Hopefully your docs can help the dizziness to keep you on your bike.

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nohrt4me | @nohrt4me | Jan 13 8:49am

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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1 reply
mdterp76 | @mdterp76 | Jan 13 11:03am
In reply to @1pearl "I just learned of my ET diagnosis and need for hydra and aspirin for life yesterday...." + (show)
@1pearl

I just learned of my ET diagnosis and need for hydra and aspirin for life yesterday. I was not expecting all this to come from a routine blood test! My platelets were retested and down about 25% from first lab taking nothing, but I guess they are still too high so I am supposed to get treatment with those meds now. I am not looking forward to it. How does it make you feel? I read someone had to give up bike riding and that would be terrible as I bike ride with Mr daughter and sister at least five times per week. I don’t want to give that up. I had no diagnosed conditions before this and feel just fine, but I am 65 now.

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I've been on HU for 2 years, 500 mg, 4x week, baby aspirin 2x day, and iron supplements 1x day. I have some fatigue so I don't go out every day, but overall it hasn't changed what I do. I keep busy with my activities and my grandchildren. I do avoid the sun as HU can put us at a higher risk for skin cancer. Live your life, exercise, eat healthy, and smile. I was diagnosed in 2023, age 69 with ET/Jak2, platelets 800K. Now, platelets are stable at 520-550K. Take care!
P.S. Here I am at Christmas 2024 with 2 of my 5 grands. Living my best life at 71!
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1pearl | @1pearl | Jan 13 12:39pm

Hi and thank you for your positive reply. Have a great week!

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1 reply
1pearl | @1pearl | Jan 13 12:40pm
In reply to @1pearl "Hi and thank you for your positive reply. Have a great week!" + (show)
@1pearl

Hi and thank you for your positive reply. Have a great week!

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If you don’t mind sharing, how high were you platelets when first diagnosed?

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