Greetings everyone. Thank you for joining this Patient Empowerment Network program. In this practice session we will be focusing our attention on positive states of mind that support wellbeing. The mind can be looked at like a garden. In this practice we will be planting seeds in the garden of our minds by focusing our attention on positive states of mind. These mental states become inner resources that are more accessible to us in our daily experiences. So, for this particular practice session we will be planting the seeds of joy.
To start our practice, find a comfortable seat. A chair is perfectly fine. And make any arrangements to support your back if necessary. Allow your eyes to softly close if you feel comfortable doing so. Feeling into the weight of your body being supported by your seat. Bring the mind to an experience of Joy. Recalling any experience that brings to mind Joy. Something that has lifted your spirits. Feel into the joy of the experience. So you want to tap into the joy, the feeling of joy. Letting go of the story and focus on the feeling of joy. Maintaining your attention on joy. If the mind wonders about gently come back to feeling joy. Without fighting your mind gently come back to the feeling of joy. Opening yourself to this joy. Allowing it to fill your mind. Noticing this feeling of joy. Feeling into it like it’s your first time. Taking it all in. Receiving the joy. Giving yourself over to it. Allowing it to become a part of who you are. A part of your being. This joy. This feeling of joy. Notice what is pleasant about this experience of joy. Feeling the presence of joy. Unbounded joy. Exhaling your breath out and taking in a full inhale and exhaling with a soft ah… Gently open your eyes. We hope you enjoyed this Patient Empowerment Network program
https://powerfulpatients.org/wp-content/uploads/Meditation-on-Joy-1.png600600Kara Rayburnhttps://powerfulpatients.org/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2022-09-06 11:44:182022-09-06 11:44:18Meditation on Joy
When I was diagnosed with myelofibrosis, I learned how important it was to continue therapy, so I had already started to see a therapist several years before that for a set of long-term issues in my life. But what I found over time, and I continue to find is the therapy has really helped me cope with not just some of the parts of my personal life that I’m still working through, but really helps me having a chronic illness, and I know from attending patient conferences, reading about myelofibrosis that there is…for one, a significant population of folks who suffer from anxiety with myelofibrosis. And that’s true for other blood cancers and chronic cancers, where there’s this, that there are ups and downs where you’re going through a period of stressful treatments, possibly followed by periods of monitoring or less treatment, and there’s always that fear of or worry about what may happen next, when might I develop a more serious mutation that will affect my prognosis, could I progress any time? Or there’s a smaller percentage of folks with myelofibrosis who can develop acute myelogenous leukemia, that’s always there. And I think therapy really helps for those sorts of outlook, long-term mindfulness, living in the present and gaining perspective about some of those fears. And I think the other part of therapy that’s so beneficial as it relates to having myelofibrosis is kind of learning to cope on a day-to-day basis, learning to think about yourself and your self-esteem that can get lost when you are feeling unwell for long periods of time. I’ve had months where I was deeply fatigued in terrible pain and doing a lot less and having to say no to my kids, I can’t do that, I can’t go here.
I remember going to back-to-school nights for my kids when they’re in high school, and I’m moving so slowly that I’m getting a teacher asking me, “Are you okay, do you need help?” And that can affect your sense of self, especially as you give up activities or work. I’ve reduced my workload significantly, and all to say is there is this dynamic of who you are as a person, that therapy I’ve found can help me get through so that I don’t lose who I am that helps really sustain my mental outlook.
https://powerfulpatients.org/wp-content/uploads/MPN-Patient-Shares-Importance-of-Understanding-Benefits-of-Professional-Therapy.png600600Kara Rayburnhttps://powerfulpatients.org/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2021-10-04 15:24:402021-10-04 15:58:30MPN Patient Shares Importance of Understanding Benefits of Professional Therapy
Resilience is our capacity to bounce back from the inevitable challenges of being alive. When challenges arise, our meandering minds can take us into various worrisome directions, leading to a host of negative emotional states and their subsequent adverse effects on our well-being.
Although we may not have control over the external factors in our lives or needless to say our genetic predispositions, we do have the capacity to cultivate inner psychological faculties that enable us to weather the storms of life with relative calm. For most of us, these internal resources are underdeveloped. They require intentional cultivation through the regular practice of actions that support their development. Among these inner resources are self-awareness, self-acceptance, and a secure inner base to fall back on.
Focusing the attention on the natural breathing process and body cultivates self-awareness and tends to have a calming effect on the mind. By doing so non-judgmentally, we accept the process as it is truly experienced. This is not an advocation of apathy towards our lives. To the contrary, by shining the light of awareness on our experience and accepting it as it truly is, we are given a clarity from which to make any necessary course corrections in our lives.
A secure base is supported by continually returning our attention to our breath and body when distracted by the meandering nature of the mind. By regularly practicing the activities here offered you can enhance your capacity to bounce back and calmly weather the fluctuating trials of life.
Broderick Rodell has a PhD in chemical engineering from the Georgia Institute of Technology and a Doctorate of Naturopathic Medicine from Bastyr University. His search for self-betterment led to his passion for mindfulness. He considers himself a dedicated student and practitioner of yoga including contemplation, meditation, breath work, and mindful movement. Broderick believes that through individual evolution we can all tap into greater possibilities within ourselves.
https://powerfulpatients.org/wp-content/uploads/Daily-Practices-for-Cultivating-Awareness-and-Anchoring-Yourself-in-Resilience.png600600Kara Rayburnhttps://powerfulpatients.org/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2020-08-04 10:24:572022-10-25 13:16:29Daily Practices for Cultivating Awareness and Anchoring Yourself in Resilience
Personally, I’ve been set on a downward spiral from something as simple as a negative thought. And although I still have hard days, I can say yoga has made these stressful times far easier to manage and few and far between.
While yoga isn’t a cure-all, it can make a tremendous impact on how you deal with stress, where you store it in your body, and how happy you are throughout the day. If you haven’t given it a serious try, I strongly suggest committing to this simple, 5 pose routine and doing it every day for the next week. It only takes about 10-15 minutes and requires no prior yoga knowledge.
Let’s have a look…
Why does yoga help with stress?
Most of us store stress in our neck, upper back and shoulders. Many of us also sit at desks for the majority of our days. This leads to bad posture which further exacerbates the tension in our back, neck, and shoulders.
Yoga helps you release tension and stress in those areas, strengthen your muscles and take a moment to focus on your breath. This is doubly important if you’re already experiencing burnout and overwhelm.
When you perform a pose like forward bend or plank, you take deep breaths that trigger a relaxation response in your body. You also strengthen your core which leads to improved posture and physiology.
If you had to picture a depressed or stressed person, you’d probably imagine them looking down, bad posture, and breathing shallow, etc. Something as simple as better posture actually improves your body’s response to stress.
These are just a few ways yoga helps to reduce stress but, I encourage you to try it yourself and report back to us.
Do you need any special equipment?
The short answer is no. If you have a carpet or a soft surface, then you really don’t need anything.
However, there are things that can assist in your practice.
For example, a yoga mat may help you by improving cushioning on your joints as well as giving you a stable surface to practice on. Yoga blocks and straps can help you build form and give you something to hold onto. An anti-gravity yoga swing can help you maintain balance and stability in a number of poses. And a yoga wheel can help you with more advanced positions.
However, none of these items are required, especially when you’re starting out. We encourage you to just focus on committing to this routine, every day, for the next week and see how you feel.
5 yoga poses to perform each day
1. Forward bend
The forward bend is one of those classic, super simple poses that make a big difference in how you feel. This is an especially great pose if you work at a desk for most of the day. When you sit at a desk, your hamstrings are always contracted, your back rounds and your posture can start slipping.
As a result, you breathe more shallow, your shoulders get tight, and the downward spiral begins.
The forward bend relieves the pressure that’s been exerted on your spine, lengthens your hamstrings, and gives you a minute to just breathe.
To perform the pose, stand with your feet shoulder-width apart. Then hinge at the hips and bend forward placing your hands on the ground if you can. Draw in your belly button toward your spine to activate the stretch and feel the tension releasing down your back.
You may notice your back cracks as the pressure releases. Hold the pose for as long as you like making sure that, if you still feel the tension in any specific areas (like your hamstrings), hold it longer until that tension begins to relax.
It’s also okay to have your knees slightly bent if needed but work on straightening them out over time.
2. Cat cow
This is actually two poses that work hand in hand. They’re an ideal combination for releasing tension along your entire back as well as building strength and flexibility in your spine.
To perform the first part (cat pose), get on all fours on your yoga mat or carpet. Make sure your hands are shoulder-width apart and your legs are hip-width apart.
From there, take a breath and then exhale as you round your back and lower your head, pointing your crown toward the ground.
Now, as you inhale you’re going to move into the cow pose. From the cat pose, take a deep breath and move in the exact opposite way. You’re going to raise your head and point your gaze toward the ceiling as you round your belly toward the floor.
As you’ll notice, you’re both breathing deeply throughout the pose as well as improving lower and mid-back mobility.
You may feel a little tension in your upper back while in the cat pose. If so, focus on pushing your shoulder blades out and holding that stretch until it relaxes a bit. This can be 5 seconds or 5 minutes.
3. Corpse pose
At first glance, corpse pose seems intuitive. You simply lay on the floor and relax – just like you do when you’re taking a nap or going to sleep. And while it is somewhat natural, there are important distinctions.
When performing corpse pose, it’s imperative to focus on breath and thought patterns. This is the key to relieving stress and putting in the intentional “me time” our busy lives crave.
To perform the corpse pose, get a yoga mat or go to an area with soft carpet.
Lay on your back with your feet shoulder-width apart and hands straight down at your sides. Lie there for a moment just letting your self breathe naturally and relax into the position.
After a few breaths, become aware of the feeling of the ground beneath you, become aware of the sensations happening in your body, and notice the sounds and smells around you. Release all judgment and just observe.
Now work your way from the bottom of your feet to the top of your head, releasing the tension in each area. Pay special attention to releasing tension in your back, shoulders, neck, and face muscles. Breathe deep, take your time, and relax in this pose for as long as you like.
4. Plank pose
Now that you’re nice and relaxed from the corpse pose, we’re going to perform a more active movement. The plank pose is incredible for building core strength and stability because it hits all of your abdominal muscles and your glutes. In fact, it works the abdominal muscles that crunches are unable to strengthen.
Our posture affects how we feel. When you’re slumped over with a rounded back, it sends chemical messages throughout your body.
These messages can trigger stress, lower self-esteem, and even cause issuue with sleep. By performing a few planks every day, you can fight these problems and more. The plank also gets your blood flowing which promotes stress-busting happy hormones.
To perform the plank, get into a pushup pose on the ground. Now drop to your elbows while keeping the rest of your body elevated from the mat. Draw in your belly button to tighten your abdominal muscles and hold the pose for 30-60 seconds. Repeat this 3 times in a row giving yourself about 1 minute in between to rest.
5. Childs pose
This is the perfect pose to end your anti-stress yoga routine. It’s very relaxing, excellent for spinal flexibility and one where you can really focus on your breath.
To perform the child’s pose, simply kneel on your yoga mat or carpet with your legs together and sitting back on your heels. Now bend forward pulling your chest close to your thighs. Reach your hands above your head like you’re trying to grab the far wall. Feel the stretch along your spine and throughout your shoulders.
You can hold this pose for as long as you like. It’s an excellent way to spend some time breathing, relaxing, and preparing your mind for a great day.
Closing
When it comes to stress, yoga is the perfect way to beat the feeling and tension caused by it. By adopting yoga as part of your daily routine (it only takes a few minutes after all), you can build flexibility, improve posture, trigger happy hormones, and just feel happier more capable during the day. Give it a try today and let us know how you feel after.
Brad is the owner of the Freedom Genesis, a blog about yoga and meditation. He enjoys writing and sharing about yoga, meditation, wellness and improving your quality of life. For more articles like this one, check out freedomgenesis.com.
What can YOU do to make a positive impact on your overall MPN care? Researchers Dr. Jennifer Huberty and Ryan Eckert review the latest research on how movement and diet can benefit people living with myeloproliferative neoplasms (MPNs).
Dr. Jennifer Huberty is an Associate Professor at Arizona State University. She focuses her research on the use of complementary approaches to manage symptoms and improve quality of life for patients living with myeloproliferative neoplasms. More about Dr. Huberty here: chs.asu.edu/jennifer-huberty.
Ryan Eckert currently works at Mays Cancer Center, home to UT Health San Antonio MD Anderson Cancer Center. Ryan is the Research Coordinator for the MPN QoL Study Group and assists in research related to complementary health approaches in myeloproliferative neoplasms and other hematological disorders. More about Ryan here: mpnqol.com/research-team.
So, as far as the benefits of exercise for MPN patients, there’s many, and so, I guess starting with cancers as a whole, there’s a lot more research that’s been done in recent decades that looks at the effects of various forms of exercise and physical activity on other cancers. They just tend – researchers tend to do a lot more of that work in breast cancer, lung cancer, colon cancer, et cetera.
And so, the research in exercise for MPN patients is actually really new, and nobody outside of Dr. Huberty in conjunction with Dr. Mesa and a few other researchers have done any research related to exercise specifically in MPN patients. Our yoga studies that we’ve done have been the first venture down that route for MPN patients. But, what we do know in general is that exercise has obviously systemic effects across the whole body.
So, you’re gonna get health benefits just in general from exercise, but as far as for MPN patients specifically, some of the things that we’ve seen with our yoga studies, which is obviously a form of physical activity, is that we’ve seen sleep improve in MPN patients, so we’ve seen a reduction in sleep disturbances or disruptions in their sleep, a quicker time to fall asleep, and then, less waking up throughout the night – so, just better sleep in general.
We’ve seen some reductions in fatigue that have been reported by MPN patients who have gone through our yoga studies, and then, we’ve also seen a few other reductions in some other symptoms, such as anxiety and reduced depressive symptoms, a little bit of reduced pain is another one we’ve seen. So, just in general, we’ve seen some of those effects on MPN patients through some of our yoga studies.
Dr. Huberty:
So, in terms of adding to what Ryan just said, I would just say that exercise – maybe yoga or walking – is good for your body. It’s good for your health. It’s a recommendation that we get 150 minutes of moderate-intensity activity every week. The more that MPN patients can be achieving that goal towards 150 minutes – yoga counting at that – the better off they’re gonna be, and it doesn’t have to be going for a run.
It can simply be going for a walk around the block. It can be standing at your desk when you’re working instead of sitting all the time. That’s not necessarily activity per se, but it is moving your body and less sedentary. So, I think just focusing on the more that patients can move their body every day, the better off they’re gonna be.
Dr. Huberty:
So, yeah, the role of diet in MPN patients – so, this is the beauty about the quality of life study group, because we have all these wonderful investigators that are part of the team, and we do have Dr. Robyn Scherber, who’s at Mays with Dr. Ruben Mesa. She’s doing some work with keto diet right now, so it’s very new, so I don’t know if you’re familiar with the keto diet, but it’s very high-fat and very low-carbohydrate, extremely low levels of carbohydrates. I wouldn’t tell any patient to go start doing those things unless they’ve talked to their physician for sure, but we do know that based on how you eat does certain things to your body.
So, MPNs have high inflammatory markers, and so, we wanna decrease inflammation; we probably wanna eat foods that are going to be anti-inflammatory. So, berries, let’s say, is a good example of fruits that are anti-inflammatory, almonds are anti-inflammatory, and I’m not a dietitian by any means, it’s just that things that I know to be true for my own diet because everybody should be thinking about having an anti-inflammatory diet.
Processed foods are not healthy. They are higher-inflammatory. Breakfast foods, eating out, and the foods that you get when you eat out a lot are going to be more inflammatory than not. So, just those small things – lots of vegetables. Vegetables are very good. Lots of greens. But, there is research going on – again, just like exercise and yoga, it’s in its infancy because MPN has been an under-studied population for years, and we’re trying to power through and make that difference.
Dr. Jennifer Huberty explains how mindfulness, such as meditation and yoga, can have an impact on your overall health and well-being.
Dr. Jennifer Huberty is an Associate Professor at Arizona State University. She focuses her research on the use of complementary approaches to manage symptoms and improve quality of life for patients living with myeloproliferative neoplasms. More about Dr. Huberty here: chs.asu.edu/jennifer-huberty.
If someone is wondering if they’re meditating correctly or not, or if two minutes of meditation is enough, if you turn to the science and the literature in terms of how much meditation you need, nobody knows. For every study that says five minutes, there’s a study that says 20 minutes, there’s a study that says an hour. I think it’s really important that the individual gets in touch with “what works for me.”
I think the most important thing is that if you’re sitting for meditation and you choose to sit for meditation, just simply listening to your breath – when you realize you’re off, thinking about what I’m making for dinner tonight or what’s gonna happen over the Thanksgiving holidays with my family, then you just say, “Oh, thinking,” and then you come back to, “Okay, where’s my breath? I’m breathing in, I’m breathing out. I’m breathing in, I’m breathing out.” So, it’s just being able to do that and not say, “Oh my God, I’m not doing this right, this isn’t working for me.” There is none of that. It’s supposed to be nonjudgment in the present moment.
“Oh, the present moment – I’m thinking. Now, in the present moment, I’m gonna go back to my breath.” So, it’s really understanding that, and I think it’s also important for people to understand that you don’t have to be seated in meditation. You can be standing in meditation, you can be laying in meditation, you can be kneeling in meditation. I think with MPN patients, not all sitting positions recommended in meditation might be comfortable. If you need a pillow under your tail, put a pillow under your tail. There’s no rulebook to say how you need to sit in meditation. I think that’s important.
And, there’s also other ways to be mindful. Coloring can be mindful. Walking and exploring the leaves and the landscape can be mindful. So, I think in our studies, yes, we’re encouraging meditation, using an app, but that’s to give people structure, education, and a background about what is meditation, but then, there is room for expansion to other things.
It’s pretty much the same thing with yoga. You’re quieting your mind; you’re focusing on your breath. There’s no rulebook that says you have to move a certain pace. You’re supposed to move with your breath, so if your breath is slow, your pace is slow. The other thing is that there is no right way to do a pose.
So, again, patients wanna know, “Am I doing this pose right?” Well, I can tell you that if you feel good in the pose, nothing is hurting you, your shoulder doesn’t feel like it’s doing something it shouldn’t, your head doesn’t feel like it’s in the wrong direction, and you’re watching the video and looking at what the instructor’s doing, you’re probably doing the pose just fine.
I think we get stuck on “Is this correct or not?” What we wanna be careful of is safety. You don’t wanna be standing on your head and wondering if you’re doing it correctly. You wanna have a basis, and that’s what we do in our programming, is it’s very basic, very foundational poses that you can learn the practice of meditating in the poses.
https://powerfulpatients.org/wp-content/uploads/Am-I-Meditating-Correctly_-Getting-the-Most-Out-of-Mindfulness-1.png600600Kara Rayburnhttps://powerfulpatients.org/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-11-25 10:22:042022-10-25 13:16:23Am I Meditating Correctly? Getting the Most Out of Mindfulness
Health-related anxiety and worry can be overwhelming. Dr. Jennifer Huberty provides advice for using complementary approaches to cope with the emotional impact of a chronic cancer, like myeloproliferative neoplasms (MPNs).
Dr. Jennifer Huberty is an Associate Professor at Arizona State University. She focuses her research on the use of complementary approaches to manage symptoms and improve quality of life for patients living with myeloproliferative neoplasms. More about Dr. Huberty here: chs.asu.edu/jennifer-huberty.
With anxiety and worry – it’s like we get in this state of mind that we can’t seem to get out of, and then, thoughts just keep piling in and piling in and adding to more anxiousness and more anxiousness, and so, the key is quieting the mind, and the best way to do that is to focus on your breath, and again, just coming back to the moment, coming back to the moment. You can do body scans where you’re just thinking about where your body is in space, going from the tips of your toes all the way to the top of your head.
I recommend guided meditation for MPN patients, especially because it is difficult. The anxiety and worry is real. The fears are real. This is a – it’s a traumatic event to be diagnosed with any cancer, and the brain is a powerful thing in terms of getting in our way of healing and feeling better, and so, knowing that it’s powerful, we can quiet our mind so that our body can learn to let go. And, I will say that spending that time doing that with the anxiety and worry, there will be physiological symptoms that change – so, heart rate goes down, blood pressure goes down, sweaty palms decrease, stomachaches – those kinds of things will tend to go away as anxiety and worry goes down.
And, the other important thing I would say is a tip for managing is to be self-compassionate. So, that’s a big part of meditation and yoga philosophy, is self-compassion. And so….being okay with being anxious and being okay with being worried, and there’s nothing wrong with that, and it’s completely normal.
And so, learning to be compassionate in ways that you would be compassionate to a sibling, or a parent, or a best friend – use those same compassionate thoughts and feelings toward yourself.
https://powerfulpatients.org/wp-content/uploads/Expert-Tips-for-Managing-MPN-Related-Anxiety-1.png600600Kara Rayburnhttps://powerfulpatients.org/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-11-25 10:18:282022-10-25 13:16:23Expert Tips for Managing MPN-Related Anxiety
Can yoga and meditation help improve life with an MPN? Researchers Dr. Jennifer Huberty and Ryan Eckert share what they’ve learned in their research in complementary medicine and how you can get involved.
Dr. Jennifer Huberty is an Associate Professor at Arizona State University. She focuses her research on the use of complementary approaches to manage symptoms and improve quality of life for patients living with myeloproliferative neoplasms. More about Dr. Huberty here: chs.asu.edu/jennifer-huberty.
Ryan Eckert currently works at Mays Cancer Center, home to UT Health San Antonio MD Anderson Cancer Center. Ryan is the Research Coordinator for the MPN QoL Study Group and assists in research related to complementary health approaches in myeloproliferative neoplasms and other hematological disorders.
My name is Jennifer Huberty. I’m an associate professor at Arizona State University in the college of health solutions, and I’m preliminarily a researcher.
I do teach a course a year, but I do research, mostly using complementary approaches delivered digitally, and I focus on cancer patients and also middle-aged pregnancy age lifespan, if you will, of women. So, women’s health and cancer.
Ryan:
My name is Ryan Eckert, and I’m a research coordinator with the Mays Cancer Center, which is at University of Texas Health in San Antonio.
So, in regards to what I’m excited about with the research that we have ongoing, I’m excited about the potential to help improve MPNs’ just quality of life and their well-being in general.
It’s a pretty under-studied area, especially as it relates to MPNs specifically, so there’s been a lot of work over the past couple decades as it relates to pharmacologic and more medicine-derived approaches with MPN patients, and we’re just now kind of realizing that there’s a little bit of a gap in some of the research that we’ve been doing, and there’s some unmet symptom burden needs and quality of life needs among MPN patients, and me, my background is more so in exercise science, and so, I’m all about the complementary approaches and the physical activity-based approaches.
And so, it’s pretty exciting for me to see the field of just cancer research in general, but also the research as it relates to MPN, start to evolve more towards the complementary and alternative approach route as it relates to mindfulness, meditation, yoga, and other physical activity interventions.
Dr. Huberty:
In relation to what I’m excited about with MPN research, I could say ditto to exactly what Ryan just said because he said it very well, and I feel strongly the same, and my background is in exercise physiology, and I’ve been working – helping women and cancer patients adopt physical activity behaviors. But, yoga is a physical activity behavior, but it has this really cool mindfulness component.
And, meditation has this mindfulness component where it’s exciting to see that we can be educating and providing MPN patients with a way to manage their symptoms themselves and rely a little bit less on their physicians in terms of “I’m feeling really anxious. What can I do?” If you’re feeling anxious, we’re giving them the tools that they can use to work on the anxiety themselves.
So, quieting their mind, allowing them to understand that it’s okay to feel anxious, and there’s nothing wrong with them, and if they’re having fears, that that’s normal, and that inviting those feelings and emotions in and just quieting their minds through yoga or meditation is so powerful. And so, I’m really excited about the fact that we’re giving them a tool that’s not just “Here’s a pamphlet, here’s what you should do,” we’re actually providing them an opportunity to practice it, to do it safely in their homes, and we’re also giving them a resource that’s consumer-based.
So, all of our interventions – the yoga and the meditation that we’ve been working on – have been with partners. So, our yoga partner is Udaya.com then, Calm.com, which is the meditation app. And so, these are things that we might provide for patients for free during the study, but when the eight-week or 12-week study is over, typically, any patient, any participant wouldn’t have access to the intervention anymore, but here we are with a consumer-based product that’s available to them.
So, we’ve taught them how to use it, we’ve made them comfortable, we’ve helped them to see that they can see improvements in the way that they feel, and then they have the ability to continue to use this as needed. Symptoms are gonna change over time – less anxious, more anxious, less fatigue, more fatigue, those kinds of things – and this helps them with the ups and downs of symptoms. So, I’m super excited about offering something to the patients that can be a lifelong friend, if you will.
Ryan:
So the MPN quality of life study group is a little bit of an acronym for the myeloproliferative neoplasm quality of life study group, and so, Dr. Mesa has obviously been working in this field of MPN research for decades now, and he had what he used to call the MPN quality of life international study group, and that was basically just a variety of different researchers from the U.S., and also abroad internationally.
Based in the U.S., we have a range of different physicians and researchers across four or five different institutions, and we all tend to focus on very similar research involving MPNs or other blood-related cancers. And so, the MPN quality of life study group is essentially just a collection of those – I think it’s somewhere between 10 and 12 different physicians and researchers that do similar research.
So, in order for patients to find out more about the MPN quality of life study group, they can – so, we do have a website that we just created a little less than a year ago, and it’s just www.mpnqol.com, and if they go there, we just have some information related to what our mission as a group is. We also have a tab on that website that explains all the different researchers and positions that make up the group.
So, if you were interested in, say, a particular researcher or physician, there’s links in there to go to their professional websites, and then, there’s also links within the tab of that website that covers some of the ongoing studies that we have. So, patients can go there, click on that link, and fill out an eligibility survey for a study that they might be interested in, and then, the project coordinator or research assistant will be in touch with them related to their eligibility
https://powerfulpatients.org/wp-content/uploads/Improving-Life-with-MPNs_-The-Latest-Research-and-How-to-Get-Involved-1.png600600Kara Rayburnhttps://powerfulpatients.org/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-11-25 10:15:182023-06-26 15:04:57Improving Life with MPNs: The Latest Research and How to Get Involved
Suja JohnkuttyHi there ! I’m Suja Johnkutty, MD a conscientious mom and neurologist . My one simple goal is to provide you honest, practical, simple action steps to experience better […]
Hi there ! I’m Suja Johnkutty, MD a conscientious mom and neurologist . My one simple goal is to provide you honest, practical, simple action steps to experience better relaxation in your life.
In the spring of 2016, I was looking forward to a final year of teaching sociology before a retirement promising new adventures. I felt great and had no reason to think I had any health problems. When my doctor suggested some routine blood work, I readily complied. When the results showed abnormally low white blood cell counts and he recommended a hematologist, I readily complied. When the hematologist ordered a bone marrow biopsy, I still readily complied. When the results came in, my life changed forever.
The biopsy revealed that I had acute myeloid leukemia. Since this disease can kill within months, they recommended immediate treatment. The next day I checked into a hospital and started chemotherapy. I received the standard treatment for this disease for the preceding 40 years: a “7 + 3” cocktail of cytarabine and idarubicin. I spent five and a half weeks in the hospital dealing with various infections brought on by immunosuppression and patiently waiting for my blood counts to recover. As they did, I received the best possible news. The chemotherapy had achieved a temporary remission that bought me time to explore my options for longer term treatment.
As I awaited the molecular and cytogenic data on my cancer, I was told to expect two possibilities. If there was a relatively low risk of relapse, I might get by with additional chemotherapy. If there was a high risk of relapse, a stem cell transplant was in order. When the results placed me in an intermediate risk category, I had a tough choice to make. After researching my options, getting second opinions, gathering advice, and reading my doctor’s cues, I settled on the transplant. My logic was that if I opted for more chemo and it didn’t work out, I would deeply regret not having the transplant. If I had the transplant and it didn’t work out, at least I would feel as if I gave it my best shot and it just wasn’t meant to be. Despite the 15-20% mortality rate from the transplant itself, I was at peace with my decision to proceed.
My benefactors were two anonymous sets of parents who had donated their newborn infants’ umbilical cords to a transplant bank. Once we found two good matches, the cords were shipped to my transplant hospital, the cord blood was extracted, and it was transfused into my bloodstream. These stem cells just “knew” where to go to engraft in my bone marrow and begin producing a healthy new immune system. For the second time, I received the best possible news. Three weeks after transplant, one of my donor’s cells were 99% engrafted. With that result, I returned home for a prolonged recovery.
For the next few weeks, I faced daily clinic visits, blood tests, transfusions of platelets and red blood cells, growth factor injections, and lingering effects of my conditioning chemotherapy and radiation as well as the engraftment process itself. As the weeks turned into months, my recovery proceeded apace. It eventually became clear that I could claim the best possible news for the third time, as my new cells and old body got along with each other and there was no evidence of graft-vs.-host disease. Looking back over the entire process, my oncologist summarized it by saying “this is as good as it gets.”
Many people wanted to give me credit for surviving this disease. While it is tempting to claim such credit, I remain agnostic about whether anything I did had a material effect on my positive outcome. I think my survival was largely a matter of luck, chance, and random variation across AML patients. Nonetheless, there were several practices I engaged in throughout my treatment that deserve mention. At the very least, they brought me peace during a difficult time. And at the most, they may indeed have contributed to a positive outcome for which I am eternally grateful.
The first set of practices that sustained me was mindfulness, meditation and yoga. To the greatest extent possible, these practices helped me let go of ruminations about the past or fears about the future and focus on the present moment. Focusing on my breathing kept me centered as – like my breaths – each moment flowed into the next. Maintaining a non-judgmental awareness and acceptance of each passing moment kept my psyche on an even keel.
Rather than extended periods of formal meditation, I simply sought a mindful awareness of each moment, hour, day and week. I also went through a daily yoga routine even while receiving chemotherapy. Doing so helped me retain my identity as I weathered the toxic treatment and its inevitable side-effects. In the evenings, I used a technique called a body scan to relax and prepare me for a peaceful sleep. The cumulative effect of these practices was a calm acceptance of circumstances I could not change alongside a serene hope that all would work out for the best.
A second practice involved being a proactive patient. Perhaps it was my training as a social scientist that allowed me to bring an analytical curiosity to my disease and the treatments my doctors were deploying. I asked lots of questions during their all too brief visits, and they patiently responded to all my queries.
On several occasions, my proactive stance made a positive contribution to my treatment. When I developed a nasty, full body rash, it took a collaborative conversation between me, my oncologist, and infectious disease doctors to isolate the one drug among so many that was the culprit. I identified it, they switched it out, and the rash abated. On another occasion, I was able to identify two drugs that were causing an unpleasant interaction effect. I suggested changing the dosing schedule, they concurred, and the problem resolved. The sense of efficacy I received from this proactive stance also helped me retain a positive mood and hopeful stance during my prolonged treatment.
A third practice involved maintaining a regimen of physical activity. During my first, five-week hospital stay, I felt compelled to move and get out of my room for both physical and social reasons. I developed a routine of walking the halls three times a day, trailing my IV pole behind me. They tell me I was walking roughly 5 miles a day, and every excursion felt like it was keeping my disease at bay and connecting me with all the nurses and staff members I would encounter as I made my rounds.
When I moved to my transplant hospital, I was confined to my room but requested a treadmill that met the physical need for activity even as I sacrificed the social benefits of roaming the halls. But throughout both hospital stays and later at home, I maintained stretching activities, exercise workouts, physical therapy routines, and yoga to keep my body as active and engaged as my circumstances would allow. These activities also gave me a welcome sense of efficacy and control.
A fourth practice involved maintaining my sense of humor. I have always appreciated a wide variety of humor, ranging from bad jokes, puns and double entendre to witty anecdotes and stories to philosophical musings. Cancer is anything buy funny, which is precisely why humor has the power to break through the somber mood and fatalistic worldview that so often accompanies the disease. Using humor became another way of keeping the cancer at bay. It was a way of saying you may make me sick and eventually kill me, but I’m still going to enjoy a good laugh and a bad joke along the way.
Alongside these practices I could control, there were also beneficial circumstances beyond my control that worked in my favor. These included the privilege of being a well-educated white male that led to my being treated respectfully and taken seriously by all my health care providers. In addition, my doctors and nurses consistently combined skill and expertise with compassion and empathy in ways I will never forget or could ever repay. And finally, my privileged status and excellent care played out against a backdrop of strong social support from a dense network of family, friends, colleagues and neighbors.
A final practice that integrated everything else was writing my story as it unfolded. Upon my first hospitalization, I began sending emails to an ever-expanding group of recipients documenting and reflecting upon my disease, treatment and recovery. Narrating my story for others required me to make sense of it for myself. The ostensible goal of keeping others informed became a powerful therapeutic prod for my own understanding of what was going on around me and to me. While my doctors’ ministrations cured my body, my writing preserved my sense of self and a coherent identity.
I eventually sent over 60 lengthy reports to a group of roughly 50 recipients over a 16-month period. This writing would eventually serve three purposes. It was a sense-making procedure for me. It was a communication vehicle with my correspondents. And finally, I realized it could be a resource for others in the broader cancer community. With that insight, I did some additional writing about lessons learned and identity transformations and published the resulting account.
As I mentioned at the start, I will never know if any of these practices or circumstances made a material contribution to my survival. But they maintained my sanity and preserved my identity during the most challenging experience of my life. Regardless of the eventual endings of our journeys, sustaining and nurturing ourselves along the way is a worthy goal in itself.
Steve Buechler is the author of “How Steve Became Ralph: A Cancer/Stem Cell Odyssey (with Jokes),” which was recently selected as an inspirational “Suggested Reading” by the Leukemia and Lymphoma Society. He recently recorded a 5-part webcast series that expands on his recovery story here. Steve’s numerous blog posts, video presentations, and more may be found at www.stevebuechlerauthor.com and he is on Facebook at SteveBuechlerAuthor.
https://powerfulpatients.org/wp-content/uploads/Facing-Acute-Myeloid-Leukemia_-Notes-from-a-Survivor”.png600600Steve Buechlerhttps://powerfulpatients.org/wp-content/uploads/New-Logo-300x126.pngSteve Buechler2019-06-11 16:49:272022-11-08 13:58:01Facing Acute Myeloid Leukemia: Notes from a Survivor
Certified Yoga Therapist Raquel Jex Forsgren shares a short yoga and breathing technique to help you reduce anxiety and increase relaxation. You can refer back to these practices in stressful situations to help control your mind and breath.
You can check out more of Raquel’s videos on her YouTube channel, Yoga With Raquel.
Transcript:
Raquel Forsgren:
So what I’ll ask all of you to do, even those of you that are on‑‑joining us with Andrew‑‑and Dr. Subbiah, you can do it as well‑‑I’d like all of you to feel really comfortable, just to sit in your chair or if you’re watching this in your bed lying on your back, just wherever you are I want you to just simply close your eyes if you feel comfortable doing that. And immediately feel the surface of whatever it is that’s supporting you, the chair, the bed, see if you can sink into it, even 5 percent more than you were initially.
Wherever your hands are, feel the bottoms of your hands, maybe the bottoms of your feet, your toes, your heels. Just feel the body itself. Now notice your breathing and don’t judge it, just notice what it’s doing, if it’s nice and slow and fluid as you inhale and exhale or shorter little breaths or sticky or clunky in any way. Don’t analyze it. Don’t go into any thinking other than just noticing.
Begin to expand your muscles in your ribs as you take your next inhale. Just think about expanding your ribs out just a little bit more, taking two more nice, slow inhales and exhales. And I want you to bring to mind one thing you’re really grateful for today. One thing. The next before we move on, bring to mind a goal, an intention. It could be how you want to feel for the rest of the day, emotionally or physically. How do you want to feel or what do you need? Beautiful.
Softly begin to open your eyes and bring your hands right in front of your heart with your palms placed together. We’re going to do just a few movements of our arms so that you can see what it’s like to connect movement, your body and mind and breath together, and also thinking about lung cancer just something that helps expand the lungs and just activate all of those muscles themselves that need to be nourished.
So as you inhale just open your arms like an (? cast) or goal post. And you’ll need to adjust this. If you have had surgery along the central plate, take it nice and easy, just open, inhaling. As you exhale bring your arms together, touching your palms together, elbows and forearms. Inhale, open the arms again. Exhale, closing the arms together. Just take two more only moving with your own breath. And closing. One more time just like that, beautifully opening and relaxing. And releasing the palms back down on your hands.
Close your eyes one more time. I want you to notice if anything has changed within your body, your mind or your emotions, and there’s nothing wrong if nothing’s shifted. I just want you to notice. And softly blink open your eyes again because I want to show you and have you go through with me one of the best anxiety reducing breathing techniques that can be done. It’s published in the literature.
It’s called alternate nostril breathing. You can do this while you’re waiting at the doctor’s office for results, if you starting to feel panicky or anxious, when you’re inside an MRI machine or a CT scan, when you are just waking up in the middle of the night with racing thoughts and you can’t seem to shut them off. So you’ll take two fingers, sometimes it’s the outer fingers but sometimes with arthritis in older hands it’s a little tougher, so I like to use two fingers, you’re going to bring them up to your nose, and you’ll be closing off one nostril at a time. And I want you to breathe normally and naturally, okay. So this isn’t anything forced.
Close off the right nostril first, and just delicately push it. You don’t have to push it clear into your nose. Just delicately push it. Exhale all the way out the left side of the nostril. Then inhale through the left nostril, exhale out the right nostril. Inhale through the right nostril, exhale out the right nostril. We’re going to do three more of these. Inhale through the left, exhale out the right. Inhale through the right and exhale a little longer out the left. One last time. Inhale through the left and exhale longer out the right side.
Bring your hands back down to your lap and close your eyes again. Take a nice normal, natural breath. And I want you to notice what’s different in your breathing, if anything. Just notice it. Notice your heart beating. Come back to that intention or that goal you set for yourself. And softly blink open your eyes with a smile. I’m expecting all of you watching to be smiling even though I can’t see you. And Namaste.
https://powerfulpatients.org/wp-content/uploads/yoga.png600600Kara Rayburnhttps://powerfulpatients.org/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2018-07-02 18:10:522022-02-16 15:51:02A Yoga Technique to Increase Relaxation and Reduce Anxiety
Mind-Body Medicine: How Can Cancer Patients Utilize Supportive Care Therapy Tools?
Recent studies support mind-body interventions, like yoga and mindfulness, as being responsible for helping to stabilize and manage symptoms and side effects of treatment. Preliminary studies show that mind-body medicine has the ability to lessen fatigue, anxiety, respiratory toxicities, sleep disturbance and emotional distress for not only patients, but care partners. Watch along as Certified Yoga Therapist Raquel Jex Forsgren and Dr. Ishwaria M. Subbiah explore mindfulness.
To see all our Lung Cancer programs, please visit our Lung Cancer page.
And hello. I’m Andrew Schorr with Patient Power. And (? Inaudible). We’re going to help you be more in control of your cancer journey, you as a patient or you as a care partner. And I want to thank our sponsors for the program, Celgene Corporation, Genentech, Helsinn and Novartis for their financial support.
Now, you can send in questions if you haven’t already. Send them to questions at patientpower.info, questions@patientpower.info, and we’ll take your questions later on with our experts. Okay.
What are we discussing today? Well, think about it. If you have lung cancer or, like me, chronic lymphocytic leukemia‑‑I have another cancer too, 22 years I’ve been dealing with this, some of it‑‑myelofibrosis, a myeloproliferative condition, if you have multiple myeloma or pancreatic cancer, whatever it may be, you may get hit with heavy duty treatment, and that has side effects. How do you cope with that? And then you have all the issues that go with your diet, if you feel like eating, your mental health, your physical health. Are you moving? What are you doing? The same for your care partner as well because they’re there along the way.
We’re going to be discussing all that, and we have some leading experts and I want to introduce them. First of all, I want to start with my wife, Esther Schorr, who has been on this journey with me for 22 years. Esther, welcome to the program and being my partner in life and on this. Hi, Esther
Esther Schorr:
Oh, I can’t say that it’s been easy being your partner all these years, but it’s my pleasure to be here, and it’s been a pleasure to go along on this‑‑not a pleasure, but I’m happy to go along on this journey (? Inaudible).
Andrew Schorr:
Right. In a minute we’re going to talk about some of our coping strategies, but I want to introduce you to our two other experts on this. First of all, let’s go to Houston, Texas, to the MD Anderson Cancer Center where we’re joined again, because she’s been with us before, Dr. Ishwaria Subbiah, who is assistant professor of palliative, rehabilitation and integrative medicine. Dr. Subbiah, welcome back.
Dr. Subbiah:
Thank you so much for having me. It’s a pleasure to be here.
Andrew Schorr:
Okay. We’ve got a lot to talk about. And now let’s go up to Chicago where we’re joined by an expert in yoga, a certified yoga therapist, and that’s Raquel Forsgren who is an expert in yoga as it applies to cancer. Raquel, welcome to the program.
Raquel Forsgren:
Thanks, Esther. Thanks Andrew.
Andrew Schorr:
Okay. Let’s go back to Esther for a minute, and we’re going to catch up with you two in just a minute. So, Esther, a little about our story, when I was diagnosed with leukemia, when we were diagnosed, if you will, 22 years ago with chronic lymphocytic leukemia I didn’t say this to you, but I thought I’d be dead in short order.
Esther Schorr:
Well, I didn’t say it to you, but I was concerned the same way, Andrew. It was very, very frightening.
Andrew Schorr:
So the diagnosis sends any of us reeling, and the care partner as well. So let’s talk about that. Esther, you had me getting distilled water for the house.
Esther Schorr:
Distilled water for the house‑‑
Andrew Schorr:
Wondering if we should move away.
Esther Schorr:
Yeah. We wanted to move away from power lines and went to an energy therapist. I think you even had hot stone therapy. I can’t remember all of the things. We were juicing at the time Andrew Weill had his‑‑
Andrew Schorr:
He had me stop drinking coffee because you saw a program with Dr. Weill from University of Arizona, an integrated medicine expert, and he said, well, maybe you shouldn’t drink coffee. We lived in Seattle where there’s a Starbucks on every corner‑‑
Esther Schorr:
It was really hard.
Andrew Schorr:
And expanding, so.
Esther Schorr:
Yeah, but there were other things, Andrew, really more relevant. I mean, those are the things that I think you and I thought, well, maybe we can get some control over what’s going on. But really at the root of some of this is the things that really helped us, at least I can talk for myself. I know you and I went into counseling to try to figure out how to cope together, and for me knowing that I had to be your care partner‑‑and we also had two small children at the time‑‑I’m a very anxious person by nature, and I found, and it may not be right for everybody, but I found that medication really helped me.
And that started about the time that‑‑it started at the time when you were diagnosed and to this day it’s really been helpful to me and I can’t wait to talk to Raquel because I now do yoga, and we’ll talk about that. Yoga has helped me tremendously along the way.
Andrew Schorr:
And we did continue to exercise. Esther and I have been joggers, if you will, and so we did that, and we continued that as I got chemo and other treatments. Maybe we couldn’t run as far or I didn’t run as far or as fast, but we’re big believers in exercise to this day. And it’s helped. And the one other thing I would say is the religious component, we’re Jewish, so we would consult with our clergy and trying to get my head on straight related to our faith. And if life would be shorter, how did we live our life, what would we say to our children or whoever would follow about what our life was. So religious, psychological, exercise, medication support, right, Esther, related to anxiety.
Esther Schorr:
And leaning on community. You know, I know for some people it’s hard to ask for help, but if you can find it in yourself to let go a little bit of your ego and pride. I know for me and I think for you too, Andrew, just reaching out to our closest friends and family and saying, hey, we need some extra support. Give us what you can, was really, really helpful.
Andrew Schorr:
Right. All right. Dr. Subbiah, let’s have some terms that we understand as we begin. So, first of all, your palliative care, you’ve explained this to us in other programs, it’s not about necessarily you’re near death. It’s about helping support you on your cancer journey. Supportive care, what does that mean? Mind‑body medicine, what does that mean? So maybe you can define some of this for us today so we all have a common lexicon, if you will.
Dr. Subbiah:
Absolutely. And so when you hear the terms “palliative care” most people, the first thing they think of is hospice care. So something that, a service that’s engaged towards the end of life. But the reality is that palliative care is symptom management. It’s been taking care of that whole person and the people around them who matter to them as they go through the treatment for cancer.
So palliative care, we’re involved more and more, really from the time of diagnosis because most people feel the burden of this diagnosis, sometimes even before because you know that something is wrong leading up to the diagnosis for many people. And so a bulk of my practice is taking care of a person as they go through cancer treatment. So we refer to that as supportive care. We’re supporting you through (? Inaudible).
So things that may come up, cancer pain, nausea, trouble breathing, depression, anxiety, distress, spiritual distress, spiritual pain. So there are many elements that go with this diagnosis of cancer. So our multidisciplinary team helps with managing that in the supportive care realm.
Palliative‑‑supportive care falls under palliative care, and so there is a component that is closer towards the end of life where the‑‑your body is going through the changes that are very natural. And we want to make sure that the suffering that you’re afraid of or somebody who cares about you is afraid of, we can minimize that to a great extent. The pain of that moment of life may not change, but the suffering that we associate with our passing from any reason doesn’t have to be there with the engagement of a palliative care physician.
Andrew Schorr:
Okay. I want to get to mind‑body connection. So this has been a debate in the medical profession for years, both for you and maybe your care partner. So do we have like some control with the way we live our life or think about things that affect cancer?
Dr. Subbiah:
So mind‑body, there are many schools of thought on what it is, but if you put all the academic aside the meaning comes down to exactly what’s words are. Your mind is very closely related to your body, and your body function is very closely related to your mind.
So what it means for us in the realm of cancer care either as a provider or as a patient is there is a component of everything that you’re feeling that can potentially be modified by mindful practices. It may not change it altogether, it may not make it go away altogether, but there’s a component of symptom management that is beyond medications, that’s beyond a pill that involves practices that are what fall under the realm of mind‑body practice. And so some of these are ones you’re heard of, acupuncture, massage therapy, guided imagery, music therapy and certainly yoga as well.
Andrew Schorr:
Yeah, and generally exercise. Okay. So you mentioned yoga. So, first of all, there has been a study to show I think preliminarily that yoga, and I’m not sure if it was done at MD Anderson or where it was done, where there was a benefit they said for yoga, for yoga participation, both for the patient and especially the care partner, right?
Dr. Subbiah:
Absolutely. And so that study was done at MD Anderson, and it was spearheaded by our department. So what we wanted to show is that for a person who is going through chemotherapy and radiation for their lung cancer, that would a structured yoga intervention help them as well as their caregivers. So what you’re looking at is an intersection where we not only acknowledge the distress of the person with the cancer and going through treatment but also of the person who is going with them on that journey.
And so this yoga intervention was structured to be given to both‑‑to be practiced by both the patient as well as their caregiver. And so it was done for a 12‑week period with follow‑ups subsequently. And we were able to show that there was a statistically significant and clinically meaningful difference improvement in the level of fatigue, in the level of activity in that person, which we measured by a six‑minute walk test.
So if the person was able to do a bit more physically as a consequence of participating in this program when compared to the control arm, which did not receive this structured yoga intervention. And so there are implications on your functional standards, your mood, your energy level of adopting mind‑body practices.
Andrew Schorr:
And this was done for the caregivers as well, wasn’t it?
Dr. Subbiah:
Absolutely. And so the caregivers also reported an improvement in their overall mood as a consequence of this.
Esther Schorr:
(? Inaudible) I’d just like to interject as a caregiver, a care partner, and I know that Raquel probably will mention this, but I know that there’s a whole range of things that fall into the category of yoga and mindfulness, and again people talk about that, but I know for sure that I have experienced the mind‑body connection in controlling anxiety. The anxiety thoughts about what‑if in the future for you, what if for user family, that in the mindfulness and the breathing and the things that come with yoga, not just the positions that you do, and I know we’ll talk about that, but it’s more about centering your thinking more positively and turning inward and visualizing good instead of bad scenarios was tremendously helpful. So (? Inaudible).
Andrew Schorr:
Okay. All right. So, Raquel, I’ve got some questions for you. So you have a background related to yoga and cancer and sort of yoga tied in with cancer. Tell us what that means and how you got involved in that because normally you wouldn’t think of that.
Raquel Forsgren:
Yeah, how it came to be. Well, I started researching breast cancer on the bench about 28 years ago and into the pharmaceutical side, on the drug development with side as a pharmacologist, and obviously it worked with a multitude of different types of cancer, and it’s been my passion my whole entire adult life. And I’ve also had several family members that have gone through the battle, some have won, some have lost, and so it’s very personal for me.
And then on the flip side with yoga therapy, just as Dr. Subbiah was talking, I like to see the entire person, the whole person be addressed. And we need the oncologist to focus on the treatment and doing all they can to really fight at the disease level, but I think, as all three of you a have just mentioned, a yoga therapist comes in on the other side with what else can you do to help empower the person to actually take control over what they can. Because there’s so much of a loss of control. So I’m inspired by that.
And then I work with a lot of the other tools that we’ll talk about in a minute to just help that person control their mind, their breath, their thoughts, their rituals, all positive things that Esther was just talking about. So that’s sort of my background and my interest in how it became to be working with cancer patients.
Andrew Schorr:
Okay. So Esther is into yoga. Esther, you started doing that what about four or five months ago, and now you do it two, three times a week.
Esther Schorr:
Right. And actually I’m kind of sad I didn’t do it sooner. But I will say I came into it because I was transitioning to much more let’s say aggressive exercise, running, some weight lifting. But I found that the combination of yoga‑‑you know, a combination of yoga and the mindfulness and (? Inaudible) somewhat medication is really not hard on my body and really good for attitude. So, yeah, I mean, I’m a big advocate.
Andrew Schorr:
Okay. So, Raquel, so yoga might be foreign to people. I mean, I knew‑‑I learned how to run and jog, but if you had asked me until Esther has been exposed to yoga I’d say that’s foreign. So maybe you could ease us into it. Maybe there’s some simple things you could show Esther or you two could demonstrate together that would be helpful for maybe the bulk of us who have never gone near any of this stuff but we do want to feel more in control.
Raquel Forsgren:
Yeah, I definitely will. First of all, I will say that’s a myth. There’s a lot of myths around yoga with not being able to do it because it’s too rigorous. You mentioned Esther kind of coming from a rigorous running, jogging. A lot of people think of yoga and they think of the postures that they see on social media or in magazines or TV or whatever, and they’re upside down where they’re doing different things, and that’s a beautiful aspect of yoga, but it’s only one.
There are so many different things we can do with yoga, the postures, the breathing, the imagery, as Dr. Subbiah talked about, and deep relaxation, which multiple studies have shown that can actually reset and rebalance someone’s nervous system. So talk about mind‑body and being able to control that yourself.
So if you’d like to go you through a few techniques now we can do that. What I would do is invite all of you who are viewing the program to do it with us and see if you can sense the difference in just a few minutes of doing some of these very simple practices, and then what you can do after this is recorded come back to this video and watch the practice again and just implement these, like Andrew said, a little bit on your own.
So what I’ll ask all of you to do, even those of you that are on‑‑joining us with Andrew‑‑and Dr. Subbiah, you can do it as well‑‑I’d like all of you to feel really comfortable, just to sit in your chair or if you’re watching this in your bed lying on your back, just wherever you are I want you to just simply close your eyes if you feel comfortable doing that. And immediately feel the surface of whatever it is that’s supporting you, the chair, the bed, see if you can sink into it, even 5 percent more than you were initially.
Wherever your hands are, feel the bottoms of your hands, maybe the bottoms of your feet, your toes, your heels. Just feel the body itself. Now notice your breathing and don’t judge it, just notice what it’s doing, if it’s nice and slow and fluid as you inhale and exhale or shorter little breaths or sticky or clunky in any way. Don’t analyze it. Don’t go into any thinking other than just noticing.
Begin to expand your muscles in your ribs as you take your next inhale. Just think about expanding your ribs out just a little bit more, taking two more nice, slow inhales and exhales. And I want you to bring to mind one thing you’re really grateful for today. One thing. The next before we move on, bring to mind a goal, an intention. It could be how you want to feel for the rest of the day, emotionally or physically. How do you want to feel or what do you need? Beautiful.
Softly begin to open your eyes and bring your hands right in front of your heart with your palms placed together. We’re going to do just a few movements of our arms so that you can see what it’s like to connect movement, your body and mind and breath together, and also thinking about lung cancer just something that helps expand the lungs and just activate all of those muscles themselves that need to be nourished.
So as you inhale just open your arms like an (? cast) or goal post. And you’ll need to adjust this. If you have had surgery along the central plate, take it nice and easy, just open, inhaling. As you exhale bring your arms together, touching your palms together, elbows and forearms. Inhale, open the arms again. Exhale, closing the arms together. Just take two more only moving with your own breath. And closing. One more time just like that, beautifully opening and relaxing. And releasing the palms back down on your hands.
Close your eyes one more time. I want you to notice if anything has changed within your body, your mind or your emotions, and there’s nothing wrong if nothing’s shifted. I just want you to notice. And softly blink open your eyes again because I want to show you and have you go through with me one of the best anxiety reducing breathing techniques that can be done. It’s published in the literature.
It’s called alternate nostril breathing. You can do this while you’re waiting at the doctor’s office for results, if you starting to feel panicky or anxious, when you’re inside an MRI machine or a CT scan, when you are just waking up in the middle of the night with racing thoughts and you can’t seem to shut them off. So you’ll take two fingers, sometimes it’s the outer fingers but sometimes with arthritis in older hands it’s a little tougher, so I like to use two fingers, you’re going to bring them up to your nose, and you’ll be closing off one nostril at a time. And I want you to breathe normally and naturally, okay. So this isn’t anything forced.
Close off the right nostril first, and just delicately push it. You don’t have to push it clear into your nose. Just delicately push it. Exhale all the way out the left side of the nostril. Then inhale through the left nostril, exhale out the right nostril. Inhale through the right nostril, exhale out the right nostril. We’re going to do three more of these. Inhale through the left, exhale out the right. Inhale through the right and exhale a little longer out the left. One last time. Inhale through the left and exhale longer out the right side.
Bring your hands back down to your lap and close your eyes again. Take a nice normal, natural breath. And I want you to notice what’s different in your breathing, if anything. Just notice it. Notice your heart beating. Come back to that intention or that goal you set for yourself. And softly blink open your eyes with a smile. I’m expecting all of you watching to be smiling even though I can’t see you. And Namaste.
That’s in a nutshell what I would say. So that was about five minutes. You tell me what you noticed. How did you feel after doing it?
Andrew Schorr:
Well, as a patient I’m more relaxed. I think I need a nap. I’m worried about‑‑Dr. Subbiah has probably got (? Inaudible).
Dr. Subbiah:
Oh, I’m in a good place, so thank you.
Esther Schorr:
I can tell you that it steadied my breathing. It’s deeper. And my heart rate just calmed. It just calmed. I mean, it wasn’t super agitated before, but as we went through that exercise it’s just, I’m like even. I’m like even. That’s the only way I can explain it.
Raquel Forsgren:
Yes, that’s the most common description. Thank you.
Andrew Schorr:
So, Raquel, a few questions. Okay. So let’s say we have 100 people here who are more relaxed, and they say, well, okay, I get it. How can I be trained to do this again, either alone with others? How does that happen? So wherever people are, and they could be all over the world watching, how do they seek out resources to do this?
Raquel Forsgren:
Oh, it’s such a great question. I would say across the country, particularly in cancer centers now, especially like MD Anderson and even the clinics. It doesn’t have to be within the context of a big academic institutions, just ask. Ask the nurse. Ask your social worker. I’m working with a lot of social workers now within the context of support (? Inaudible) support groups, so we’re mixing talk therapy with mind‑body. So just ask your nurse navigator or any of them. So that’s number one.
Number two, it is important to look for someone that is certified as a yoga therapist because we’re trained as a subspecialty in trauma, in serious disease, in cancer. So that helps. And you can go to the International Association of Yoga Therapy. Go to their website and type in your zip code, and any number of certified therapists will come up with that information. So those are two simple ways to find it.
Andrew Schorr:
Okay. Dr. Subbiah, okay. So‑‑and you all picked yoga as the modality you were testing as well. So, first of all, what’s your take on what we just did, and what would you say to our folks as far as making use of that along with other approaches?
Dr. Subbiah:
So I went along with all of you and did this myself, and so everything regarding the heart rate, breathing, I’ve experienced it, and I noticed that my shoulders are much less tense. So that’s always something that I notice when I do this in my office.
So yoga can be intimidating in that some people think that you need to set aside 40 minutes, an hour to do this. The reality is you can gain benefits really in a very short period of time, and that’s one of the elements that we’re testing. Is initially if an intervention, a yoga‑based intervention is a 45‑minute session, do we still have the same effect when we do a 30‑minute session, a 20‑minute session? And we’re working on one now that’s an 11‑minute session. So we want to see if the beneficial effects in people going through cancer treatment and their caregivers can be experienced by shorter and shorter time sessions. And so we’ll put that data out once we get it.
Now, the two ways, the easiest ways to access it, are like what was said, which is engage your healthcare team and ask them about resources with integrated medicine within their practice, within their nearby hospital, within the city. And so at MD Anderson we have a separate department of integrated medicine that’s devoted to the alternative and complementary aspects of care of someone with cancer.
And so the integrative center has classes every day in tai chi, Qigong, multiple‑‑every day that’s open to anybody, and so the patients, caregivers, whomever comes with them. And so we would encourage our patients to take advantage of that, especially if you have an appointment in the morning and maybe an infusion in the afternoon and there’s some time in between the day is to go and spend that time in the integrative medicine center.
The other resource that I use is the integrative medicine center’s web page within MD Anderson. And so you can access it from anywhere in the world. Just Google integrative medicine at MD Anderson. It will come up. And there we have several videos there with our yoga expert here. Dr. Alejandro Chaoul is one of the world leaders in yoga in the context of cancer therapy. And so (? Ali) has several videos where he guides you through this. So I’ve done this at home. I’ve done this in the office.
And so you can open it up, do it on your smartphone and try it out. And you can go back to it as many times as you want. And don’t forgot to go back to it. It’s not a one‑time. The benefit comes from doing it repeatedly over the course of‑‑really it’s a lifestyle modification, so.
Andrew Schorr:
Esther, so you’ve made this part of your life now. So I did feel a benefit just doing this. And I did go to one class with you, so I’ve got to go again. But as a caregiver, what do you see? What change have you seen?
Esther Schorr:
Well, you know, other than what Raquel pointed out in that demonstration, for me, I’ve seen myself become physically stronger now, and I’m well aware that (? Inaudible) cancer patients some of the more advanced parts of yoga, the physicality of it may or may not be appropriate given what your mobility is and your physical being.
But if it is, whether it’s a caregiver or a patient, the really good thing about yoga that I found is it’s not a competitive sport. It is a practice, and it’s very individual. So you can do as much or as little as you want. The mindfulness part, the breathing, what we just did, everybody can do. And then you can build on that if for example you’ve gone through treatment and there are parts of your body that you have strength or you want to build strength yoga is very‑‑it builds on itself, so you can just build it at your own speed.
And so, for me, I found it’s not tough on my body like running was. It accomplishes to lower anxiety, etc., and at the same time what I found is it strengthened my physical body and my ability to tolerate other stressors.
Andrew Schorr:
Right. And as a patient I have definitely seen a change in Esther, which has helped me be calmer as well.
Esther Schorr:
Oh, I’m glad there’s that by product. That’s great.
Andrew Schorr:
So Raquel, are there video you’re‑‑so great. Are there videos that you’re in as well that we can link to that would be helpful? I’d love to see again.
Raquel Forsgren:
I do. Actually, I have a YouTube channel that has just a couple on there that I focused around, a long, deep relaxation, and this is one we didn’t talk about today much. It’s about a 25‑ to 30‑minute deep relaxation, and it works through progressive muscle relaxation, body sensing, using the breath, and also really gets into the subtleties of the mind and what you’re starting to think about and process emotionally while you’re relaxed. So that’s number one, and it’s on there. It’s Yoga With Raquel. That’s the name of it.
The other two that I have put on there were related to anger, grief, and dealing with difficult emotions and how do you welcome those and deal with them and process them. And some of those I put on because of some people I was working with, was working with at the time, who were just diagnosed, and they had that swarm of emotions and they didn’t know what to think about what the oncologist had even told them. They were angry. They were sad. It was just a mix.
So I created those just off of training I’ve had with Richard Miller and others to build those and put those out there for people. And they’re free resources that anybody can tap into. And they’re six and seven minutes long, but I would highly encourage anybody, especially I think for care partners, Esther like you and I have talked, you know, you’re wanting to be strong and be there for the person, for the loved one. You don’t want them to see you falling apart inside or being afraid, and I think you need an outlet to feel what you’re feeling and then be able to go back and be present for the loved one. And so that’s also been behind, in my mind, in creating a lot of these things now for that. But, yeah, check those out for sure.
Esther Schorr:
Well, and yoga can be done together, too.
Raquel Forsgren:
Absolutely. Absolutely.
Andrew Schorr:
So, Dr. Subbiah and Raquel and Esther and me, we’re getting questions, and if you have a question the best way to do it is to send it to questions@patientpower.info, and Tamara Lobban‑Jones, our wonderful producer, will help forward those to us.
Dr. Subbiah, I just saw a quick question that came in from Canada where someone asked, well, can yoga help with peripheral neuropathy pain? So, for instance, our myeloma folks, some others, have medicines, and I think of those but there may be others across cancer, where you developed neuropathy in full or numbness, so what about that? Or are there other ways to manage it, and that’s part of your discussion with your palliative care specialist?
Dr. Subbiah:
Absolutely. Now, that’s a great question, and peripheral neuropathy, it can be anything from a nuisance to debilitating, and so it’s‑‑and it’s experienced by so many as a side effect of so many different cancer medications and so many of the other medical problems, like diabetes. And so the impact on lifestyle can be tremendous.
And so we look at the pharmacological interventions that are out there that you may have worked with with your doctor, whether it’s the gabapentin or pregabalin or duloxetine. These words may all ring a bell to some of you who are suffering from peripheral neuropathy.
The mind‑body realm just has some options for peripheral neuropathy, and these work in the same way that most mind‑body techniques work, which is in conjunction with (? Inaudible). And so one of the interventions that we have data for to support its use in peripheral neuropathy, the primary one that comes to mind is acupuncture.
And so acupuncture, we have small trials that shows an improvement in the pain when compared to those who don’t receive acupuncture in their peripheral neuropathy. So it does have a role when you use it for the management, and it may be that you use it in addition to a medication that you may have been taking that may have helped but not to the extent that you want it to. So acupuncture has a tremendous role in the management of peripheral neuropathy.
The remainder of the techniques have a role in anxiety management, and even the distress that goes with having a peripheral neuropathy, so it’s not to say that there isn’t a role. The whole concept of this is you have to take care of the whole person, so it’s not just about the pain in your left foot. It’s the left foot that’s attached to that person who’s having to stop running because their left foot is bothering them.
So mind‑body techniques have a very important role, especially as you go later on in your treatment or as a survivor. Some of these side effects stick around with you for a very long time. So these mind‑body practices, you can take them with you for life.
Andrew Schorr:
We talked about anxiety, and Esther referred to that as a caregiver. Previously and at other times we always talked about medication for that or depression as well. What about some other things that come up? I know when I went through chemo Esther had me taking ginger. And I even had one of these little zappers like some pregnant women use for nausea, and that happened me, right? But there were things like that. And then I think I was an MD Anderson patient at the time, they even did have some other medicines, even suppositories I used because I couldn’t take anything by mouth. I couldn’t keep it down. And that helped me a lot.
So but that was in communication with my healthcare team. So nausea, sleeplessness, anxiety, and even diet generally. I know some people particularly with lung cancer have I think you’d call it cachexia or even myelofibrosis, which I have, where people just are like wasting away, right? They’re not eating at all.
Dr. Subbiah:
Absolutely. So this concept of cancer cachexia is very complex. So from a medical standpoint it’s the loss of good muscle in your body and fat, and the reasons are not clear because you’re eating but you’re going through active treatment for cancer. And what we attribute it to is the cancer itself, the chemicals, the cytokines that the cancer releases, the changes that it has on the body causing it to break down good muscle.
And so that has tremendous implications on body image. If you don’t look the way you used to and you feel your appearance, your identity changing on a weekly basis, that can have a tremendous impact on your whole person well‑being. And so at the moment there are really no effective treatments to stop cancer cachexia or even reverse it. There are ways to potentially slow it down, and that may well mean meeting with the dietician to optimize the food that you take to make sure that you are getting enough calories, the right kind of calories.
Working with physical therapy on strength building, not necessarily to run a marathon but to have enough strength to go about your daily activities around the home, be able to walk and do things here. These are ways to try to combat the physical changes that you feel. So we brought up the anxiety as well. So it’s‑‑mind‑body practices have a very important role in anxiety management. And in fact I would say that the most robust data for mind‑body interventions, be it yoga, or massage therapy, meditation, guided imagery, is the management of mood and anxiety.
Andrew Schorr:
Right. You talked about body image. It’s all tied together in how you feel, how worried you are about the future, etc., so anything like Raquel was demonstrating to us is so important.
Here’s a question we got in from Pam. I’m willing to bet she may be dealing with multiple myeloma, I’m not sure, but she says, what effect, if any, does high calcium levels have on the ability to exercise? So anything‑‑I don’t know whether Raquel, you would comment or Dr. Subbiah, let’s start with you. Calcium, you know, you have all these bone lesions and stuff like that, you can have this calcium problem but yet you want to do this stuff. Any thought there, Dr. Subbiah?
Dr. Subbiah:
Sure. And so hypercalcemia, it’s a very real medical entity, so you have to work very closely with your oncologist, with your physician, the provider team to make sure that the calcium is kept at a reasonably safe level. What your body experiences as a result of hypercalcemia is real. There is changes in energy pattern, changes in the strength, changes in your bowel function, changes in your mind and mood. So hypercalcemia has real implications on really the whole body experience.
So it’s one of the electrolytes imbalances. You know, you have‑‑I’m sure people listening to this have their potassium checked, their magnesium checked, the phosphorus checked among all other things at some point time during this journey. Hypercalcemia is one where the person feels it a lot more than maybe another electrolyte that may be low or high. So it’s very important to work with the provider team to get it down to a reasonable level, and know that some of what you’re feeling may be not necessarily the cancer per se or the treatment for the cancer. It may be because of the electrolyte imbalances.
Andrew Schorr:
Wow. Okay. Raquel, go ahead. You’re muted, so‑‑there you go.
Raquel Forsgren:
Yeah. I think the one thing that I also would add to that too, Dr. Subbiah’s point about it affecting‑‑hypercalcemia affecting the whole body, the deep relaxation that I spoke about earlier, the way that that works specifically is around turning off that fight or flight mechanism in that part of our nervous system that kicks in when our body is in a state of trauma, which is kind of what’s happening in hypercalcemia from a just simplistic perspective.
And so when you’re in that deep relaxation state and leveraging the breathing, you’re reducing cortisol levels that are pumped out from your adrenal glands, and that entire cascade that happens in your body just starts to slow and relax. And the neurotransmitters, the chemicals in the brain that are released, it’s just a cyclic event.
And so even though one might not be able to do any particular movements even, the breathing, the imagery and those deep relaxations shouldn’t be underestimated for the role they play in boosting the overall health of the inside off the body and all of the other mental components with it. So I just wanted to add that little spin on what those do even if you feel like you can’t move out of your bed.
Andrew Schorr:
Well, thank you. Here’s a question we got from Susan. Susan wants to know, how can I protect myself from the effects of chemo outside of massage and meditation? So chemo and even some of the non so‑called chemo drugs are very powerful and they have effects. So, Dr. Subbiah, what about protecting yourself? What can you do?
Dr. Subbiah:
So it’s‑‑there are added effects that one experiences. That’s very different from therapy to therapy. And so the interventions are, what you would do is dependent on the side effects of what you are taking at the moment. So it starts with that discussion with your provider team. What are the most common side effects, and what are some of the more rare side effects? So it gives you a sense of what you’re most likely to experience and also to be on alert in case you happen to be that person who has a rare side effect as a consequence of the therapy.
Now, there are side effects from chemotherapy and targeted therapy and immunotherapy and cell therapy (? if anyone is on CAR‑T). There’s only so much that can be done to protect yourself from this. So the preventative aspects of the side effects is not there yet. That is something that we work towards. That’s something we hope to have so that the person doesn’t have the side effect to begin with.
So at the moment the way symptom management is is we have to‑‑we address the side effect after it happens. And so the approach‑‑some of the most common side effects that are fatigue, nausea. (? Inaudible) there are medications there. You can talk to your medical provider about if there’s a role for a small, lower dose of steroids to help with fatigue. If there’s a role for a lower dose of methylphenidate to help with fatigue, which is a stimulant. So there are some data to support these in smaller trials.
There’s‑‑as with many medication interventions for fatigue management, the data is always mixed, and so there are some trials that think it’s important, others that don’t, and so at the end of the day my approach to it is if somebody’s having severe fatigue and they’re on a treatment that’s helping their cancer, treating their cancer, keeping it under control‑‑and we have a lot to gain from having the cancer under control‑‑let’s try a medication or two for the fatigue and see if it helps. If it doesn’t help you, then stop it and move on.
But there’s so much variation from person to person, how you respond to a medication that’s there for supportive care and the side effects of the original cancer treatment.
Andrew Schorr:
Okay. Raquel, here’s a question we got in from India. I’m going to read that in a minute. I just want to mention, if you have a question‑‑we have a few more minutes‑‑send them to questions@patientpower.info. So this one is from India, and they didn’t give their name, but they said, how helpful is yoga for interstitial cystitis and with pelvic discomfort for a cancer patient?
So here’s somebody with that problem or I don’t know what the gynecologic cancer is, well, can yoga help at all just for the pain?
Raquel Forsgren:
Interstitial cystitis is a complex condition.
Andrew Schorr:
Amen. It is.
Raquel Forsgren:
Even aside from the cancer component. I see Dr. Subbiah smiling and nodding. It would be kind of similar to the other mind‑body practices we talked about. So the number one thing is relaxing the body. It’s just relaxing the muscles. Your pelvic floor and everything around it will tighten just as much as your shoulders or the other parts of your muscles, and the more you can relax them the better.
The more you can defocus away from that pain with guided imagery, that has also been known to help. I don’t know specifically for interstitial cystitis, but I’m just talking about other types of internal pain, bone metastases, things that very‑‑you some things that are not on the outside of the body. So I would say deep relaxation for sure.
Dr. Subbiah, for you, do you believe that pelvic floor postures could benefit someone in that way, or do you think that it could potentially aggravate the pain? That could be kind of a follow‑on question because making posture is in really pulling the bellybutton in towards the spine and engaging that pelvic floor. What do you think?
Dr. Subbiah:
So that’s along the lines of what I was thinking because you’re asking‑‑the person who asked the question is asking about a very specific condition, and so to my knowledge I’m not aware of any particular trials for mind‑body interventions for the purpose of interstitial cystitis. And so then you start to think about, okay, what are‑‑what do we have data for where the symptoms may be similar and in a similar part of the body? And so you immediately think of the gynecologic cancers where a person may have had surgery or radiation in that area of the body and causing over time that inflammation turns into a fibrosis.
And so I’m thinking of a woman who may have had a gynecologic cancer and having discomfort and pain, frankly, in that area and a pain that’s probably not going to go away because it’s a sequela, a consequence of the treatment. And so in those contexts there is some support for mind‑body interventions.
The pelvic floor exercises are one that we do suggest, and so would it help with particularly interstitial cystitis? I’m not quite sure simply because I can’t think of any data or a study where a person has asked that question. And so my recommendation, as with all of these interventions, is to, number one, speak with the physician or provider who knows you the best, and have this discussion on, number one, do you think there is data, number two, do you think it will help, and number three, do you think it’s okay if I try it.
And then you take that information, you absorb it, as with all (? Inaudible), and then you make an informed judgment for yourself. Okay, do I want to try this mind‑body practice? I know that there isn’t a big randomized trial to show its benefit, but my doctor said it may not necessarily hurt me to try it, and so should I go ahead and make that attempt to see if this mind‑body practice will help me in any symptom that you could be feeling.
Andrew Schorr:
I want to ask about trying. So we have women probably watching and some of them have had maybe lymph node surgery and maybe even dealing with lymphedema and may even wear (? sleeve) and things like that for breast cancer. We have people who’ve had debilitating treatment for lung cancer. We have people going through or have gone through transplant of various kinds, things like that. So you see it, Dr. Subbiah, Raquel probably as well.
So you say, well, okay. Do I‑‑how do I assess what I can do? I can’t, you know I can’t‑‑maybe I can’t go to a class and Esther goes to classes and there are like 20 people in there and they do these different positions, and that’s a little a daunting to me, right? So how do I celebrate what I can do and maybe increase that over time but at least I start. So, Raquel, let’s start with you. The whole idea of starting or trying even if it’s just like that, you know?
Raquel Forsgren:
Yeah, and I think that is one of the biggest things that stops people from trying, from thinking there’s something else they could do to help take control of what they’re going through. It’s the daunting task of do I go to the yoga studio on the corner that I see people going in in these outfits and doing different things. Like, I’m not that person. And that’s the most important take‑home message I know I could give as I educate oncologists and nurses and people that are diagnosed with cancer to do is to do the research, do what Dr. Subbiah talked about, speak to the nurse, talk to the nurse navigator.
Look for classes within a hospital, number one. Because they will be modified and tailored to people that are going through what you are. And I know from a yoga therapist’s perspective I tailor yoga therapy sessions based upon the type of cancer, the stage of disease, even the types of treatment that the person’s going through. I will tailor the entire practice around that with modifications. And it changes. It changes from at diagnosis maybe at second round of chemo to tenth round of chemo to post chemo, it all changes.
And so I would just be open, step through the fear, use this as a way to take control where you have the control. You can’t control what the cancer’s doing, you can’t control the treatments the oncologist is giving you, but you can control your own lifestyle changes and your own quality of life. And that’s what I love about yoga therapy is because it really does empower you because, as you all saw from just the small five minutes, you felt something. You felt something shift, and that’s what will happen even if you do it for six minutes or 12 minutes.
And you do not have to be in a class at a studio. You can do it within the context of even your own home. And after you do some research you’ll find there’s a lot of online options. You’re more than welcome to send questions in to Patient Power, and they can forward them to me. I’m happy to try to help you find somebody in your local community that could even help you from a yoga perspective. And I so I’m more than happy to help you as much as I can as well.
Andrew Schorr:
Wow. You’re so devoted. Thank you.
So, Dr. Subbiah, part of this is communication. I think Raquel really explained about putting it in context and resources for people to start. But there you are in your white coat. All of us have doctors and be maybe we have multidisciplinary teams. We have nurses and sometimes other kinds of therapists that we can draw on, but we’ve got to speak up, right? So what would you say about whether it’s the patient themselves or the care partner, like Esther, to advocate so that we get these approaches brought to bear, whether we need training or medication in concert so that we get what we deserve?
Dr. Subbiah:
Sure. So the field of complementary medicine, integrative medicine, it’s coming more and more to the forefront, but the reality is it’s always been on the periphery for really decades. And so when you present a‑‑when you bring up an option of a particular mind‑body practice that you may want to try, the person listening to it on the other end, whether it’s your nurse, your nurse navigator, whether it’s your nurse practitioner, your physician or whomever it may be, they may not have been exposed to that in the course of their training and their years of experience.
And a person responds to that in different ways. Sometimes if they don’t know about it they may dismiss it. Other times they may be more supportive to say, okay, let’s look into it a little bit more. But if they don’t have that background experience with it‑‑and that’s the way medicine has been for decades, so it’s not so much a fault of their own. They just haven’t been exposed to it as much.
Then ask them is it okay if I pursue it a little more, do some more research and bring some information to you to help me interpret it. And so I think we‑‑when we‑‑when you as the patient and the caregiver are gathering the information, just be aware that the person reading it may already be familiar with it or may not. And then based on their level of comfort with it go forward in that discussion.
If they have recommendations that’s great. If they don’t, we mentioned some of the resources where you can search online to find appropriately certified and trained personnel to deliver these mind‑body practices. And so if you happen to be in a smaller area of the country or even in the larger area but don’t have immediate access to an integrative medicine center to at least get you started, then it’s a great way to‑‑it’s a great opportunity to do some of the leg work yourself and then work with your care team to find what’s right for you.
And you’re right. The circumstances are that you may end up having‑‑when you end up doing your research you may actually know more than the persons in your (? Inaudible) just because of the way medicine has been but not where medicine is going, which is we’re all becoming much more cognizant.
Andrew Schorr:
Well said. Esther, I want to get a final comment from you. When I was diagnosed 22 years ago with chronic lymphocytic leukemia, we were in tears. I felt like a victim, maybe you did too. This came out of totally left field. And I think our whole time with this has been what Raquel and Dr. Subbiah have been saying, trying to take back control. And we’ve had providers along the way. Some have been knowledgeable and some have not, but we’ve been trying to be advocates in doing what we can do, right?
Esther Schorr:
Right. And what rings very true for me and our experience is Andrew shared and I guess I did too in a sense, some of these supplementary things that we researched and tried and it was always is this all right. Let’s talk about this with his oncologists, his medical team. And in one instance, I don’t know if you remember, Andrew, in one instance there we had read and done some research about accelerating the amount of a certain vitamin to help you when you were diagnosed with leukemia.
And we had the conversation with your oncologist at the time and he said, what vitamin supplement are you taking. And when we told him, he said, I think you should probably not do that because in your particular case, in your particular kind of cancer there are studies that say that’s not a good idea. So I bring that up in that this dialogue has always been really important for us, and I would think that that’s really what you both have been saying is research it, but before you dig in whole hog with some of these other complementary and supplementary things, have the dialogue with your medical team because some may be really helpful and some of it, there may be evidence that it’s not. So, you know.
Andrew Schorr:
Well, you can see that Esther and I have been on a long journey together and just‑‑for those of you watching (? look), not always, but there are people living longer with lung cancer now. There are people living longer with advanced prostate cancer, with advanced breast cancer. We have a long way to go with a lot of the cancers, but we have are making progress with some of them, the blood cancers that I’ve been affected with. Twenty‑two years ago I didn’t know I’d be there for the next month or the next year, and you’re stuck with me. Here I am, and I hope Esther and I are going to be together for many, many years with our 33rd wedding anniversary coming up.
So then you say, well, how can I take control back from this where I started maybe feeling like a victim. And that’s what we’re talking about here. So this field that Dr. Subbiah talks about and now Raquel is very involved in on her end, these are relatively new and not having proliferated everywhere. But you have the benefit here. Take this into your life, we hope. Have conversations with people like this or seek them out, seek the online resources. All right. I’m not going to preach anymore. I just hope this program has been helpful.
I want to thank our guests. Dr. Subbiah, thank you for being with us once again from MD Anderson and your work in integrative medicine. Thank you so much.
Dr. Subbiah:
Absolutely. Thank you so much for having me and this opportunity to talk with all of you.
Andrew Schorr:
Well, we’ll do it again. And Raquel Forsgren joining us from Chicago and taking us through a guided program. I’m going to look up those videos. Thank you so much.
Raquel Forsgren:
Thank you.
Andrew Schorr:
Esther, here’s a big hug and kiss. Thank you for being with us.
And one other thing is we’re going to have some resources for you that we’ll put with this program on the Patient Power website. It will have links to all the things we’re talking about. So be sure to look out for that. We’ll be sending you e‑mails with alerts. Tell others about this. Have them sign up with Patient Power so they always are in the know as we do more programs. And let and Esther and Tamara, our producer, know. You can always send a comment to questions@patientpower.info. Let us know if this was helpful. Okay?
I want to thank the Patient Empowerment Network for this program and achieving wonderful support from Celgene and from Genentech and Helsinn and Novartis, and we really appreciate them being part of the cancer community, not just developing drugs but supporting our discussions like this one. I’m in California. We have our guests around the country and Esther upstairs where we live here. I’m Andrew Schorr. Remember, knowledge can be the best medicine of all. Thanks for joining us.
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.
https://powerfulpatients.org/wp-content/uploads/mind-body.png600600Kara Rayburnhttps://powerfulpatients.org/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2018-06-27 16:37:162022-11-08 14:19:42Living Well with Lung Cancer: Mind-Body Medicine
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