Living in the Moment: Patient and Doctor Perspectives on Using Mindfulness Techniques

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Topics include: Understanding , Living Well and Mental and Emotional Well-Being

What can myeloproliferative neoplasm (MPN) patients do to keep from fixating on their disease and focus on their well-being? How can patients apply mindfulness to their day-to-day lives? Patient advocates Samantha Trahan and Julia Olff share mindfulness techniques to help others stay present despite the many fears and uncertainties those living with an MPN face and strategies to strengthen the mind and body. MPN expert Dr. Ruben Mesa, from UT Health San Antonio Cancer Center, also discusses different aspects of mindfulness, including physical activity and cognitive pieces, and how practical application can benefit MPN patients. Watch now to find out more. 

This program is 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:               

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 well-being, 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/mental 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, 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?

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 September 9, 2019