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Anyone diagnosed with ET w/Calr?

Blood Cancers & Disorders | Last Active: 7 hours ago | Replies (20)

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@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.

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Replies to "@suzannebhi Diagnosis hits like a train. Few of us even knew that our blood could go..."

@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.