Patient-Doctor Perspective: Regaining Control of Health and Happiness After an MPN Diagnosis

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Topics include: Living Well

A myeloproliferative neoplasm (MPN) diagnosis takes a toll on a person’s body, mind and spirit with residual effects on their physical and emotional well-being that may make everyday life difficult. How can patients reclaim and enjoy their lives? Where can patients find happiness after cancer? Noted MPN expert, Dr. Laura Michaelis from the Medical College of Wisconsin, shares tips on regaining the control many patients feel they’ve lost during or after cancer treatment. MPN patient advocates, Jill and Nick, also give their perspective on life after cancer, how they adjusted and positive changes they made to overcome fear and anxiety. Watch now for simple steps to improve your well-being and live a full, balanced life with an MPN.

Sponsored by Incyte Corporation.

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Transcript

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:

Jill, how have you—you have one daughter got married, you have another wedding coming up. You’re moving on with your life. How do you do that and have this not dominate up here?  

Jill O’Brien:        

Yeah. That’s kind of hard for me, since I have said before, I am kind of the black-and-white person.

The best way I’ve been able to handle it is I tell myself if I hadn’t gone to the doctor and got this diagnosis, I wouldn’t even know what’s going on with me. And I would just be going on with my life. So I can’t control what’s going to happen tomorrow. I can just try to take care of my body the best that I can. And I have to look at the positives and live day to day. But anytime…

Andrew Schorr:

You have a good doctor, you have a good team.

Jill O’Brien:        

Yes. And I think, to me, that is the most important because I have my full trust in Dr. V. He is one of the best. And that is reassuring to me that I know I’m in the best hands I can be in.  

Andrew Schorr:

And you’re staying informed with Patient Power. You’re part of our community. 

Jill O’Brien:        

Yes. So I’m doing all I can do.  

Andrew Schorr:

Nick, what about you? So, there you have a 5-year-old and an 8-month-old, demanding job. So tell us about how you move on now with this diagnosis. 

Nick Napolitano:              

Yeah. It’s difficult. I talk about all of these symptoms, but really, mentally, the mental aspect of this should be thrown in there with this. So when I see my doctor every few months, we talk about how I’m dealing with this mentally, because I’ve expressed to him that I think about life span. I think about my symptoms. How long can I actually live with this? I think about that constantly, frankly. So it’s through my kids. It’s through my family. I have three brothers. I have nieces and nephews. It’s through that sort of team, I’ll call it, my wife, obviously, that helps me cope with it and helps me just move on, my work.

And, Andrew, you mentioned, you have to build a team of doctors that you trust. And once you do that, you can move forward and not have this consume.

Andrew Schorr:

Dr. Michaelis, so, let’s talk about teams. So, my wife, Esther, comes with me when I see Dr. Jamieson all of the time. And we have these conversations. And it’s sort of like, yes, what are we dealing with? What do the numbers say? If I’ve had a bone marrow biopsy, what does it say? But also, kind of like what can we expect. Now, I know nobody has a crystal ball. But for our audience here, what do you say to people? Because, obviously, we have worries that go along with these diagnoses.

Dr. Michaelis:   

So, I try and provide —I say I can provide a lot of information. The information is based on data over the last 30 years, but it’s not based on data that’s going to be in the future.

So one thing I emphasize is this disease can change you—our understanding of these diseases and how to treat them has been changing. In 2005, we discovered what JAK was. By the early 2010 era, people with myelofibrosis were now being treated with a real disease-modifying drug called ruxolitinib (Jakafi). That drug has now been expanded to certain people with polycythemia vera. There is new understandings of how to use either other kinds of kinase inhibitors or these drugs called interferons. There’s a lot more information about those coming up. There are novel drugs being invented. 

So there are better anticoagulants being invented. There are better heart medicines preventing people from having heart attacks and strokes using medicines that are for people with hypertension, for example. So there’s a lot of new research.

And I try and contextualize that new research from the patients. I also emphasize that keeping sane, when you have a chronic disease, takes effort. It takes taking on new things like I’ve never exercised before, but it turns out exercise helps you balance your life. So people take up exercise. I definitely emphasize things like meditation, positive visualization, yoga. Those kinds of things have been known, historically, to help people quiet the mind, reduce anxiety, reduce depression. Those things have been used for hundreds of years, and they have zero side effects. And I consider them to be an excellent adjuvant to the other care that I’m giving people. 

So we’ve got what we know in Western medicine, what we don’t yet know but we’re hoping to get, but also, other types of adjuvant therapy that you can do. And the other thing I do is try and limit people’s time that they spend thinking of themselves as a patient instead of as a person.

And so, everything you do to feel like a whole person, your interactions with your families, as you guys have mentioned, whether or not it’s crafts or art, volunteering for other people who might be less fortunate than yourself, all of those things can kind of take you out of this feeling of being trapped by your disease. So I try and recommend that, too, for people who have the physical energy for it. 

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 July 25, 2018