Anyone diagnosed with ET w/Calr?

@lynns51

Each of us experiences ET and HU differently. So please understand, this is just my personal perspective.

It's ET itself that exhausts us. Fatigue is the most reported symptom. While my platelet count was highest, I couldn't climb a flight of stairs without stopping halfway.

As HU brought down my count, most of my energy returned. It took a while! Please note, while HU has quickly reduced your count, at 623 you are still WAY above the normal range. Your body is still burning so much energy overproducing platelets.

My advice would be to keep exercising. If you can't do your full workout, do half of it. Don't attempt any marathons, but enjoy that stroll around the park.

Keeping our hearts pumping and our blood circulating is good in itself. And there's the bonus of mood-boosting endorphins too!

To better days ahead.

I am 72, had ET CALR x 17 years, 8 on HU. No life-altering issues from ET per se outside of fatigue and the self-berating I do because I used to be able to run circles around everybody else. HU got rid of migraine headaches. Honestly, I was happy when I was diagnosed after years of docs blowing off symptoms as menopause and stress.

CALR patients tend to run higher platelet counts but clot less frequently than those with JAK2, so that's a teensy plus.

Keep your circulation going, reduce overall stroke risks with heart healthy diet, get your labs regularly so your platelet trends can be properly tracked and treated. If you are still working, exercise can help reduce fatigue.

You are in this for the long haul, and you may notice that symptoms increase with age. But age pretty much exacerbates everything.

Focus on what you can do. Avoid unrealistic expectations. Be vigilant about your general health. Just because you have ET doesn't mean other things can't go wrong.

My dad also had ET. He lived to be 82 and died of something else.

My husband was diagnosed through his routine blood work in 2024. Ever since then, we have both lived in constant fear.
I have read other forums, and I don't see anything about the new drug in trials(Incyte), or any advocacy to expedite it. I don't even know if that's even a thing. I am sorry if I sound immature, but is anyone here dealing with the whys and oh my god, what will happen in the future? How are you dealing with it?
He does not want to go on medication and wants to try alternative therapies. Is anyone aware of any therapies that can lower the platelet counts?
I thank you all for sharing your personal experiences with the disease, and I wish you all well. Can't wait for the medicine to become available to the public so we have a cure.

Hi @suzannebhi,
I completely understand your concerns. It’s a difficult situation, and your reaction is very natural.
In addition to that, Incyte currently has several clinical trials underway, and there are already some promising treatment approaches emerging, which is encouraging.

For many patients, conventional therapy remains the first line to prevent vascular events (thrombosis/hemorrhage).

You might find this paper helpful for more detailed information:
https://www.sciencedirect.com/science/article/abs/pii/S1530891X25009693.

@swalex Thanks for your quick response. Any advice on how to deal with the constant mental chatter and the worry?
Thanks for sharing the link. He has been taking vitamins D I did not know about calcium; it's worth a shot.

@suzannebhi
I wish I had better advice to offer.
What’s helped me deal with the constant mental chatter, and the stress of living with APS and worrying about a stroke, is focusing on keeping my adrenaline levels down.
I’ve also learned that worrying about something doesn’t help at all.
Instead, I try to gently redirect my attention toward calming, pleasant activities that help me feel more grounded and at ease.

@swalex Thanks, we do the same, but some days are just really tougher than others, and I think all of us here are experiencing the same. I hope and pray for a cure soon so we all can resume our lives or go back to where we were before the diagnosis.
Thanks for listening and responding, I wish you well.

@suzannebhi

Diagnosis hits like a train. Few of us even knew that our blood could go rogue. And very few of us got any guidance from our doctors about how to live with ET. Speaking for myself -- I lived in horror and dread for the first year. Made my will, Swedish death-cleaned!

But here on this forum, I met lots of people living strong with ET. And as hydroxyurea (HU) brought my platelet count down, I regained strength and hope.

ET and the other MPNs are so rare and poorly understood that, alas, it's unlikely we'll live long enough for a cure.

My suggestion is to study all the ET threads here. Learn from others' experiences. Pursue the links to medical articles reporting the latest findings.

Doing the homework not just empowers you. It gives you a perspective on what may best help your husband.

Of course nobody wants to take a chemo drug! But as swalex has said, at this point conventional therapy -- and HU is the go-to drug -- gives the best outcomes. And please remember, HU helps not just people with MPNs. It also make a life-saving difference to people with sickle cell anemia and cancers of the throat.

I'm 71 years old, female, and I take 1000 mg of HU six days a week, 1500 mg the seventh day, plus 81 mg aspirin every day. I have no debilitating side effects. I am back to full strength with my animal rescue work, which involves wrestling big dogs and frisky cats, and driving hundreds of miles over the mountains.

I have ET, but it doesn't have me.

You're among friends here, suzannebhi.

@janemc, thank you for sharing and giving me hope. I appreciate you encouraging me to read more and learn more about ET, so I can work on my fears and be a better support for him.
Thank you, and my best wishes to you.

@nohrt4me thank you for sharing your experience with ET. It is helpful and encouraging to learn that one can still live a normal life.
To better days ahead!