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Mindfulness and MPNs: Maximizing Wellness Through Meditation, Diet and Exercise

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Published on October 29, 2018

Managing life with a chronic cancer can be challenging, especially when it comes to managing stress and worry. In this Partners program, Andrew Schorr is joined by leading expert Dr. Ruben Mesa and two patients living with myeloproliferative neoplasm (MPNs). Julia, living with myelofibrosis (MF) for almost 10 years, and Samantha, living with polycythemia vera (PV) since age 26, discuss the ways in which they practice mindfulness in their daily life. They both share their experiences with diet, exercise, yoga, and other tactics that they utilize in order to manage their overall wellness. Dr. Mesa provides research-based insight on the benefits of practicing mindfulness, including results of studies on yoga and meditation. Watch now to learn more.

This program is sponsored by Incyte Corporation.

 

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Transcript | Mindfulness and MPNs: Maximizing Wellness Through Meditation, Diet and Exercise

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.

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, and welcome to Patient Power. I’m Andrew Schorr, joining you from Encino, California, part of Los Angeles. And we have a wonderful program for you. It is to discuss, really, mindfulness and everything that comes under that for those of us living with an MPN. I’ve been living with myelofibrosis since 2011, so believe me, I’m gonna listen and contribute as I can.

We have a wonderful panel to join us. Let’s start with our medical expert, who’s been with us many times. That’s Dr. Ruben Mesa. He is the Director of the Cancer Center at the UT Health San Antonio Cancer Center. Ruben, welcome back to Patient Power.

Dr. Mesa:                      

Hey, it’s always a pleasure, Andrew. Thank you for including me.

Andrew Schorr:            

Thank you. And a patient who I met a couple years ago in New York City, she lives in Westfield, New Jersey, Julia Olff, who’s living with myelofibrosis for how many years now, Julia?

Julia Olff:                      

ET, 2007; myelofibrosis, 2008.

Andrew Schorr:            

Oh, okay. And then let’s get down to Houston, Texas. Samantha Trahan, who is in her forties now, 43, but at age 26, you were diagnosed with ET, and later, that became polycythemia vera, right, Samantha?

Samantha Trahan:         

Yes, that’s correct.

Andrew Schorr:            

Okay. We have a lot to talk about. First of all, let’s start with Dr. Mesa. When we talk about mindfulness, Ruben, what are we talking about? What comes under mindfulness, and what role does it play for those of us living with MPNs?

Dr. Mesa:                      

Well, at least my interpretation of mindfulness, it is a concept of which we’re hearing much more about. And this is really an individual’s awareness of life, of the things that they’re going through, really living each day. As it relates to individuals facing a disease, a chronic disease or other difficult circumstances, the tools of mindfulness have been studied and identified by both psychiatrists and psychologists as potentially being very helpful in alleviating stress, in better adapting to difficult circumstances.

So, that difficult circumstance can be facing a chronic disease, but that difficult circumstance might be something else. Recovering from a hurricane or a natural disaster; a loss in someone’s life of losing a job or a loved one. So, it’s almost a series of different potential resources, techniques for trying to alleviate stress and challenges when dealing with difficult circumstances.

Andrew Schorr:            

Right. And does the medical evidence—and I know you’ve been involved in studies. Do you see patients do better when they’re following some of these practices that we’ll discuss during the program?

Dr. Mesa:                      

Well, I think we’ve known for a long time that an individual’s frame of mind is crucial for overcoming a difficult circumstance, whether that be disease or another difficult circumstance. I think around the focus on mindfulness is trying to identify what aspects of how people deal and cope with difficult circumstances are helpful.

Are there things in there can be taught, or utilized, or shared to help individuals be able to deal and manage with those circumstances? Sometimes that great difficulty as it relates to MPNs is difficulties that they’re facing, either symptoms or complications. But another big component is dealing with uncertainty, right?

Andrew Schorr:            

Mm-hmm.

Dr. Mesa:                      

And the stress that comes with the uncertainty of what the future holds, and will or will your disease not have a big impact on your life further downstream?

Andrew Schorr:            

Right. And I agree. So, I’ve been living with MF since 2011, and I’ve had to live in the moment, because I don’t know what’s next or how long my medication will work. So, let me start with you, Samantha. You were diagnosed with an MPN at 26. So, how have you gotten your head on straight? What are the activities you’ve done?

I know some of the things that can come under mindfulness are just the way you breathe, or sometimes it’s meditation for people; keeping a journal, trying to document things and your thoughts. Could be exercise, and I know you’re very involved in that, or diet. So, how have you used different techniques? Tell us about that.

Samantha Trahan:         

Sure. Well, I’ll say it’s been a long time, and there’ve been periods where I’ve been better at it, and then periods where I have sunk into sadness and just really fixated on the disease. So, I find what’s most helpful for me is to eat well; treat my body well, so that it can work as hard as it possibly can to defeat this with me; and then to get some daily exercise, whether it’s I get up in the morning and I took over walking the dog from my teenager, so that now I get up in the morning, get some fresh air, and get some exercise, to really making a commitment. So, when I started an exercise regimen a couple of years ago, I had to shift some work around.

I had to say, I’m not going to take conference calls before 9:00. I’m going to make my health and my exercise and my diet as important to me as I do anything else—my family, my doctor’s visits, my own work. And keeping focused on what I can do to strengthen my body and to treat it well so that it can help fight this disease is critical. And the more that I find that I focus on that and on my wellbeing, the better that I feel.

Andrew Schorr:            

Okay. So, you go to the gym how often?

Samantha Trahan:         

I try to go three times a week. I get some cardio. I get some light weight training. I’m not in this to become a body builder. I’m only in this to keep my body strong, and so that I feel good. So some cardio, some weight training. I started with really just barely being able to walk around the block, and then moved up to some regular courses.

I went to a barre studio for about a year, and I found that that was a great stepping stone to getting into being committed to doing some regular exercise.

Andrew Schorr:            

Okay. Julia, so you have MF, like me. It’s been quite a journey.

Julia Olff:                      

Mm-hmm.

Andrew Schorr:            

Medications, fatigue. You have other symptoms that you’ve been treated for. I understand—you were telling me before, the program, that you’ve recently seen an integrative medicine doctor, and there’s been a discussion about meditation. How do you feel about that?

Julia Olff:                      

I’m looking forward to it. I’m sort of excited that there might be a non-medication form of treatment that can help me. So, I just tapered off of Jakafi after being on it for five years. I still have – although my counts are under control right now, I still have some residual symptoms; some fatigue, not as much; body aches; I’m itchy at this very moment. And I’m kinda hopeful – Samantha was very motivating. 

Love what she had to say. And I realize that so much of dealing with this disease, because it is ongoing, you know, you can’t say six months from now, I’ll be done with dealing with this. So much of it is a physical and an emotional/metal experience. And so, I’m kind of open to the idea of this guided meditation that might help me feel better and, as Dr. Mesa was saying, sort of cope better.

Andrew Schorr:            

So, you walk the dog as well, right? You talk walks.

Julia Olff:                      

Well, so, I’m reminded, our dog—our last dog, we had two—passed away last year. And it has absolutely had an effect on my weight and on my walking. And I live in a walkable town, so I try to get myself on nice sunny days like today to walk as much as I can. But it’s—a pet is an amazing—in terms of getting you out.

And the teenagers did not walk the dog, so I walked the dog. So, now I’m just trying to walk on my own. 

Andrew Schorr:   

Okay.         

Julia Olff:    

Yeah.                  

Andrew Schorr:            

Well, and I’ll just chime in, since I’ve been living with the condition too. So, Esther and I either run—she goes to yoga. I’ve only done that a couple of times. I go to the gym otherwise or ride my bike. And I do walk the dog, little Donovan, little Borkie, morning and night. And that routine really helps me. And that’s about living in the moment. So, Ruben, when you see patients, do you talk to them about trying to celebrate and work on how they can control, take back some control, rather than just feel it’s all up to you, the practitioner?

Dr. Mesa:                      

Well, I think without question, that as I’ve heard from even this call, individuals, when they have an MPN, whether they’re on medicines or not, usually still don’t feel 100 percent, whether that’s symptoms, whether that’s anxiety, whether it’s difficulty with sleep—it’s a whole range of things. And my colleagues and I have been really interested in trying to better understand how—what else can be done in addition to just medicines to try to help people feel better. And I think as I discuss things with the patient, I think there’s a range of options. We’re both studying these options, but we know they’re helpful. It’s a question of how is that a best fit for each individual. And I’d say those options really range from, one, things related to physical activity. Without question, whether you are perfectly healthy or have an illness, if you’re not being physically active, you’re gonna feel worse. People who are inactive even without disease don’t feel well. So, being active, yeah, is incredibly helpful.

Second is really some aspect of meditation. And yoga, which is somewhat of a combination of both activity and meditation, is very popular, because it has some component of both. Now, those things are helpful both in terms of the activity, but also, they seem to really help with another major deficiency, which is really good sleep. Many of these things are not only helpful, but one of the reasons that they do help is that they do seem to have an impact on the time and the quality of sleep that people experience each day. And that has such an amazing restorative effect on our bodies, on inflammation, on things both related to MPNs with the rest of our health, that that’s incredibly important.

And then the final part is really a cognitive piece. Mindfulness is part of, let’s say, a suite of different activities. Another in that sort of group is something that’s called ACT therapy, which is, again, a series of mental technique exercises, thought points to try to organize your thoughts around uncertainty. Do you spend a good chunk of the day worrying about the uncertainty of the future, or are you able to use some of these techniques to be able to put that in a box? Now, I don’t know what five years from now is gonna hold. But if I spend two hours of today worrying about that, that ruins today. And it doesn’t change anything about five years from now. Now, it’s easier said than done, without question. But sadly, that’s true for any of us. I don’t have an MPN. But do I know what five years from now is gonna be? I don’t. I may not see five years from now. That’s the reality that all of us face.

So, being able to deal with that uncertainty is another huge challenge, as well as being able to deal with chronic symptoms or difficulties that you just can’t control. That’s itching that’s there all the time, is there a way to be able to kind of put that in a box and put it more at the back of your mind? Sometimes easier said than done, but that’s where there’s a lot of effort into these different techniques. Now, what we hope to learn is, are there techniques that are more effective than others? And how do we deliver these techniques in a way that people can utilize them online, at home, on their phone or apps, other ways to make them practical for people to use?

Andrew Schorr:            

Well, I know you’ve got three of us here who will help you, Ruben, in the clinical community do that. So, Samantha, so you alluded to the fact you’ve had some low times. At some point, you had to say, “I am gonna live in the moment. I have today. I don’t know where my MPN’s going. It switched from ET to PD, and I don’t know how I’m gonna feel tomorrow or next week.”

So, how have you taken the little voice in your head, maybe the big voice in your head that was even shouting sometimes, and say, I’ve got my family, I’ve got my kid, I’ve got my dog, I’ve got my life. What did you?

Samantha Trahan:         

Yeah. That was tough. I mean, so a couple of years ago—I mentioned I’m no longer really over-proliferative. So, it threw me into this time period of uncertainty. And the first thing that I do, because I am involved in my own medical care, is I started flying around and seeing different doctors, and what do you think? And what do you think? And what’s gonna happen, and where am I? And I need a new bone marrow biopsy. And that hamster in that wheel just started running and would not stop. And then that became what I focused on, so then every day, I was looking up research journals and then contacting authors to get full publications. And then I got to where I was no longer focusing on what was really important.

And I needed to spend more time with my family. I needed to really stop looking at research journals in the morning when I drank coffee, because it was not accomplishing anything but creating more time with that hamster on the wheel. So, I made a conscious effort. I’m going to stop. I don’t know what’s going to happen, and I don’t know what’s going on in my body right now. I’m somewhat of an anomaly. I’ve been over-proliferative for a long time, and now I’m not. How long is that gonna ask? I asked every doctor I saw. No one knows, because this is not an exact science. This is something that we’re all just working through, and there are frankly not that many of us, and not that many young patients to come up with a definitive answer.

Andrew Schorr:            

Right.

Samantha Trahan:         

And I had to set aside the fact that this—there was no answer. My doctors couldn’t give me an answer. I couldn’t find an answer, no matter how many research journals I looked at, how many ASH reports I read, and I just had to stop. 

And so, what I do is I go see my doctor quarterly now, and I set aside time, whatever that week is going to be, and I review my symptoms. I do a little bit of research to see if there’s anything new that I’m curious about. But other than that dedicated time that I set aside to focus on my health, I ignore. And I try to live the healthiest, best lifestyle that I can so that I strengthen and I feed my body. But other than that, I just have to turn it off, and I set aside dedicated time, and that’s when I worry about it.

Andrew Schorr:            

Well-said. Julia, you’ve shared that you see a counselor to get some help. Tell us about that and how that helps you.

Julia Olff:                      

I think it’s of tremendous benefit, and I’m one of those people that believes in therapy, particularly cognitive behavioral therapy, where you’re learning to deal with problems. You’re learning to cope. It’s not necessarily about looking back into your past, but rather—Dr. Mesa spoke to it so well, essentially—sort of figuring out how to cope with challenges, how to get through the tough times, the adversity, I think it has helped me recognize that chronic illness does have an impact on one’s life. And a therapist helps validate that. It also has helped me figure out in small ways how to allow myself the breaks or how to sort of pace myself. So, it has helped me have permission, as well as helped me persevere.

You know, I think I’ve practiced my own sort of mindfulness, if you will, at key times. Like when having a bone marrow biopsy, I sing or hum to sort of get through and distract my brain from the discomfort, pain, and sort of fear of the procedure. And I feel like going to therapy, or counseling, or thinking about how you think and reframing it, redirecting it, helps you just sort of get through those things that you have to deal with with this disease and the uncertainty. And Samantha and I are similar, I think, in that we’ve had a long time to learn how to do this. And I talk to people most often who are newly diagnosed, and I hear the fear. I hear the “why did this happen?” 

They’re not necessarily ready to embrace mindfulness, I think. And one of my questions is sort of when is it—I’m also a health educator, so I have to acknowledge that—is where in the experience would you benefit most from what we’re talking about? Because I do think you also have to left yourself be sad and let yourself go through the emotion, that—it doesn’t mean you’ll stay there. So, when I’ve had acute episodes and have been hospitalized, I definitely get low – I mean, my mood changes. I start to think, oh my god, I’m dying. I’m ready for a bone marrow transplant. And then I get out of it. So, a long-winded way of saying I think therapy has helped me roll with all of that much better than I might have otherwise.

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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