Patient Story: Why I’m Confident in My MPN Care

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Should you participate in a clinical trial? What is it like? Myelofibrosis (MF) patient, Edmund, shares his story of progression from polycythemia vera (PV) to MF and why he chose to participate in a clinical trial.   

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Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Andrew Schorr:

Hello.  I'm Andrew Schorr, and I'm sitting with a fellow patient.  I have myelofibrosis, and Edmund here does, too.  

Edmund:

Right. 

Andrew Schorr:

And sometimes you can have myelofibrosis diagnosed initially, primary myelofibrosis, but sometimes it is a progression from polycythemia vera. 

Edmund:

Right. 

Andrew Schorr:

And that's what happened to you.  So age 37, I think you were diagnosed, PV with a routine blood test. 

Edmund:

Yes.  It was my annual checkup, and the doctor found out that my counts were extremely high, and that's when they realized something was wrong. 

Andrew Schorr:

Kind of a shocker. 

Edmund:

Yeah, it was.  And I didn't know what to make of it at the time, so I actually did some research and realized what it was and how rare it is at the time.  So, yes, I figured I hit the jackpot.  

Andrew Schorr:

Oh, my, my.  Okay.  Now, you're married, you have a couple of kids, two teenagers now.  You're living with PV, and as people learn, it can progress to myelofibrosis. 

Edmund:

Right. 

Andrew Schorr:

You knew that was a possibility.  

Edmund:

Yeah. 

Andrew Schorr:

It happened. 

Edmund:

Yes, it happened.  

Andrew Schorr:

Many years later, now four years ago.  So how did you react to that change?  

Edmund:

Actually, it wasn't too bad.  I mean, I was kind of expecting that it was going to evolve into something. 

Andrew Schorr:

Like another shoe dropping. 

Edmund:

Yeah.  Yeah.  So—so it was just kind of like a progression, and to me it was no—I mean, it wasn't earth-shattering or anything.  It just happened.  

Andrew Schorr:

Hmm.  Okay.  So as you know there's a lot of research going on in this field.  You've chosen to be in a clinical trial. 

Edmund:

Yes. 

Andrew Schorr:

So how come? 

Edmund:

Well, Jason tried very hard to convince me.  

Andrew Schorr:

Your physician, yeah.  Jason Gotlib. 

Edmund:

Yeah, and—no.  But I think, you know, the hydroxyurea (Hydrea), which I was taking at the time, you know, it seemed like it got to a point where it wasn't really doing anything for me, and it was time.  

Andrew Schorr:

So you're in a clinical trial.  How are you doing? 

Edmund:

I'm doing actually great.  You know, I think before I started the trial my spleen was huge, right?  But once I started the trial everything came under control.  My counts were great.  My spleen, you know, shrunk to a relatively normal size, and I've been feeling quite well. 

Andrew Schorr:

Hmm.  Now, you work and you have teenagers.  

Edmund:

Yes. 

Andrew Schorr:

You're married.  You have an active life. 

Edmund:

Mm?hmm. 

Andrew Schorr:

So how would you say your quality of life is even living with myelofibrosis? 

Edmund:

You know, aside from, you know, fatigue sometimes and every once in a while I get headaches, quality of life has been very, very good.  I mean, it's more than bearable.  I don't even think that I—I mean, I don't usually think that I'm, you know, not well, at all.  

Andrew Schorr:

Wow.  You just go about your day.  

Edmund:

Mm?hmm. 

Andrew Schorr:

So you're in a clinical trial, so you're seeing science progressing, but yet you're living—let's face it, you're living with a cancer.  

Edmund:

Mm?hmm.  

Andrew Schorr:

What's your view of the future and medicine, newer medicine help you live a long time?  

Edmund:

Well, just the fact that JAK2 made this change, you know, to my—to my health, I'm just like thinking very soon this is going to be completely managed and controlled.  I mean, it's probably not going to be an issue anymore very soon.  

Andrew Schorr:

I hope so.  I hope so.  So you're feeling positive and your family is, too. 

Edmund:

My wife worries a lot more than I do. 

Andrew Schorr:

That's natural.  My wife worries, too. 

Edmund:

But I try to—I mean, yeah.  I just don't think of it as a day-to-day thing.  I mean, it's in the back of my mind, but it's not something that I want to deal with or have to deal with.

Andrew Schorr:

Sitting here with Edmund, this is a man who is cool, calm and collected, and I think—just being that way, I think inspires a lot of people.  So what would you say about clinical trials?  There was a discussion between you and your doctor.  For people watching, in a field that's changing, would you advise them to consider being in a clinical trial?  

Edmund:

Oh, absolutely they should consider it.  I mean, of course they have to look at it from all angles, whether it fits their lifestyle or whatever they're going through.  But in my case I've been very lucky, you know, to be on the one that actually worked really well for my body, and it's great.  

Andrew Schorr:

Okay.  Edmund, wish you a long, long healthy life. 

Edmund:

Thank you so much. 

Andrew Schorr:

Thank you for being with us. 

Edmund:

Thank you. 

Andrew Schorr:

And hopefully you can dance at your kids' wedding. 

Edmund:

Oh, I don't know about that dancing stuff. 

Andrew Schorr:

Well—well, hopefully everything goes well for you. 

Edmund:

Thank you so much.  

Andrew Schorr:

And thanks for being in a trial because that helps everybody. 

Edmund:

Yes.  I'm glad to be.  Thank you. 

Andrew Schorr:

Andrew Schorr with Edmund, a clinical trial participant who's living well with myelofibrosis.  Remember, knowledge can be the best medicine of all. 

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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Page last updated on October 6, 2015