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MPN Patient Café: Hope for the Future

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Published on May 2, 2017

In this MPN Patient Cafe segment, host Andrew Schorr talks with patients about uncertainties associated with their disease and having hope about what's coming next in MPN research. Andrew is joined by three patient advocates living with MPNs: Alisa Rouse, Andi Malitz, and David Denny. These patient advocates share their perspectives on living with an MPN and what their hope is for the future.


Transcript | MPN Patient Café: Hope for the Future

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:

So what about uncertainty? Alisa, what about you? So we don’t know what lies ahead, right? I don’t know if you mentioned—you mentioned phlebotomy. I don’t know if you’re doing any other treatments, but all of us we know how we’re doing today. And we wonder, will this keep working, or will there be something better? So how do you think about that?


I kind of am in that situation right now. Dr. Mesa had me on hydroxyurea (Hydrea) for about six years, and it was not controlling my counts. I got really sick. I was hospitalized for malnutrition, because the doses were so high. Then I tried interferon, and I have a congenital heart defect that caused me to stop breathing when I was on the interferon. So that was kind of out the window.

And then the ruxolitinib (Jakafi), I was on it for about a year, and it was the best year of my life, and then it stopped working. We took a kind of vacation for about six months and tried it again, and it is not for me. So I am kind of in between figuring out what we’re going to do. There’s hopefully some clinical trial I would love to get into if I qualify, and it seems like there’s a lot of stuff kind of on the horizon coming, so hopefully there’s something there. But right now, phlebotomies and just making sure I’m hydrated and taking care of myself is a big thing with PV.

Andrew Schorr:

Okay, so you’re in a little bit of limbo right now and thank you for mentioning a clinical trial. I’ve been in two clinical trials, one for the leukemia I was diagnosed with years ago that’s worked for a long time. And then there was another clinical trial for a blood thinner when I was getting DVTs, the blood through the diagnosis of the myelofibrosis. 

So kind of like coincidental, but that’s another benefit of trials, too, is that you’re monitored. So, Andi, what about you? You don’t know what lies ahead. So how do you feel about how things are working for you and your hope for maybe even better therapies? 


I am hoping for better therapies. I have been on a very, very high dosage of hydroxyurea for over 10 years now. Dr. Stein was able to get me down from 2,500 milligrams to 2,000 milligrams a day, and my platelets are still way higher than they should be. We talk very frequently about what’s coming in the future. He doesn’t want to pull me off of it right now, because I’m not having horrible side effects, as it were. But I am curious as to what’s to come in therapies. 

I’m very hopeful through reading and hearing what’s going on through the MPN Foundation and Patient Power of how much recognition, finally, and support that this disease is finally getting and that it’s coming to the forefront in the blood cancer arena. There are the grants, the clinical studies that are going on, so I feel very confident that in a very short time, if you think about it, that we’ve known about this; probably more has been done in the last couple years than probably in all the years combined. So I think we’re all kind of at the forefront right now of hopefully benefitting from some things that will come to fruition in the next few years.


Andrew Schorr:

Yes, I really agree with that. Just one story before we get your point of view on this, Dave.

So Ruben Mesa, who is Alisa’s doctor and a noted authority in this, talks about how they used to go to medical meetings, the doctors who chose to specialize in MPNs. And they were like just a few people, a handful of people in the room. And now they go to these medical conventions, and they get hundreds of doctors trying to learn about it.

Now, we may still want to go to one of those few, the handful. But what’s really—I think the attention, the attention from the drug companies who may develop the therapies of tomorrow, what’s next in clinical trials for you, Alisa, that’s very encouraging.

Dave, what about you? You know, you and I are taking a medicine. We don’t know whether it will—I monitor it on how am I feeling, what’s my dose, what’s my spleen size, do I have night sweats? I’m looking at all these grounders and saying—and my medicine has worked for about four-and-a-half years, so I’m very grateful. 

And I hope it keeps working for a long time, but I don’t know. But what about for you, in thinking how are you doing, and thinking about what could be next? 


Well, like I said, I really am doing well on the Jakafi right now. I feel well; I’m not having the symptoms that I had been having. And so I’m delighted. But then of course, then you watch your CBC numbers. One of the reasons I went on this to begin with was that my white blood cell count was up in the 40s. So we got it down to 21, and then it decided to start going back up, so now I’m back in the 30s. So it’s hard to say what it will do, you know? Will it work, will it not work? Can I increase the dosage; will that make a difference? Nobody knows, and so we’re playing it by ear. 

There’s just no way of knowing. I think you have to try to keep a hopeful attitude. There are a lot of things going on, a lot of things are being studied, and it is possible and it might even be likely that they’ll come up with new drugs that will take the place of ruxolitinib if that stops working for me. Or maybe they’ll come up with a cure, or maybe I’ll have to have an FCT. It’s impossible to say, but I’m hopeful that the Jakafi will work a long, long time and that by the time it stops working they have a kinder, gentler cure.

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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