Connect
← Return to Anyone diagnosed with ET w/Calr?
Discussion
Anyone diagnosed with ET w/Calr?
Blood Cancers & Disorders | Last Active: 7 hours ago | Replies (20)Comment receiving replies
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.
Replies to "My husband was diagnosed through his routine blood work in 2024. Ever since then, we have..."
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.
Connect
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.