Tag Archive for: meditation

Navigating Anxiety and Stress Following Follicular Lymphoma Treatment

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Navigating Anxiety and Stress Following Follicular Lymphoma Treatment from Patient Empowerment Network on Vimeo.

What are some ways for follicular lymphoma patients to cope with emotions after treatment? Cancer patient Lisa Hatfied shares coping methods and health lifestyle advice for dealing with stress and anxiety.

See More from START HERE Follicular Lymphoma

Related Resources:

What Are the Signs It Is Time to Treat Follicular Lymphoma

 How Can I Manage Anxiety After Follicular Lymphoma Diagnosis

 What To Do When Newly Diagnosed With Follicular Lymphoma

Transcript:

Lisa Hatfield:

After you are done with your follicular lymphoma treatment (including stopping any maintenance therapy), you may feel anxiety or stress and ask yourself “Well now what?” This range of emotions is normal. One woman  shared, “After a year in remission, dealing with the aftermath of follicular lymphoma has been tough. Initially, the news of remission brought euphoria and excitement that lasted the whole day. However, soon after, I found myself feeling numb—and then grappling with guilt for feeling that way.

You may feel similar to this woman or you may feel like the other shoe is about to drop (i.e. concerned about recurrence in the future). Here are some tips to help manage this stress and anxiety: 

  • Manage your expectations. Give yourself a break and set realistic expectations. After you stop maintenance therapy, you may not feel 100% back to normal right away so give yourself grace 
  • Research has shown that fear of recurrence can be reduced when your healthcare team is able to give people statistics about curability or remission length. Ask your healthcare team if you find comfort in statistics. 
  • Talk to a counselor and seek antidepressant or anti-anxiety medications
  • Exercise and relaxation techniques like meditation and mindfulness may also help
  • Continue healthy lifestyle factors, just like you did during treatment, including good diet/nutrition, getting enough sleep, etc. 
  • Join a support group designed to help people who have completed treatment. It can be helpful to hear what other people do to manage their anxiety/stress and know you are not alone in feeling this way. 

Sources: 

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Expert Advice | Strategies for Managing MPN-Related Fatigue

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Expert Advice | Strategies for Managing MPN-Related Fatigue from Patient Empowerment Network on Vimeo.

Fatigue related to myeloproliferative neoplasms (MPNs) can be overwhelming and may have an impact on other parts of your life. So, what can be done about it? MPN specialist Dr. Naveen Pemmaraju shares advice for understanding and managing this common symptom, including lifestyle choices that may be beneficial. 

Dr. Naveen Pemmaraju is Director of the Blastic Plasmacytoid Dendritic Cell Neoplasm (BPDCN) Program in the Department of Leukemia at The University of Texas MD Anderson Cancer Center. Learn more about Dr. Pemmaraju. 

 

Related Programs:

Understanding MPN Treatment Options _ What’s Available for MF, PV, and ET

Understanding MPN Treatment Options | What’s Available for MF, PV, and ET?

 MPN Essential Testing | How Results Impact Care & Treatment Options

MPN Essential Testing | How Results Impact Care & Treatment Options

 Understanding and Managing Common MPN Symptoms and Side Effects

Understanding and Managing Common MPN Symptoms and Side Effects

Transcript:

Katherine Banwell:

Well, it’s obvious that there’s some symptom overlap along with this.  And so I’m wondering what the strategies are for managing these. Let’s start with fatigue first.  

Dr. Pemmaraju:

Let’s do that.  

Katherine Banwell:

How do you manage that?  

Dr. Pemmaraju:

This is one of the tougher parts of what we do. I’m glad you’re pinning me down to say it, because really this is the majority of what we need to be talking about in the clinic. I’m going to just be honest, you know, with all the scientific breakthroughs and everything, some of these are limited. The fatigue, this is some of the strategies I use and some of the experts in the field. I think one is managing the underlying disease. So, as you mentioned, if you have high-risk, intermediate to high-risk myelofibrosis, one of the great findings of our field is the JAK inhibitor class generally helps to improve symptom burden.  

So, that is the splenomegaly, the fatigue, the pruritus. Maybe not so much the itching, but some of these other things. So, I think treating the underlying disease, that’s okay. Number two is many clinics, onc centers around the country are starting to open up a supportive care or fatigue center clinic. So, I am referring several of my patients there, we’re talking about diet, nutrition, exercise. We used to never talk about these things. Ruben Mesa has found that doing yoga and meditation can genuinely actually help the pathobiology to reduce the cytokine storm and improve the fatigue and quality of life. 

Dr. Angela Fleischman, our colleague at UC Irvine, has done work suggesting that possibly an antioxidant diet such as the Mediterranean diet can help the overall general fatigue, well-being, wellness. And then of course I mentioned earlier, but I’ll mention here too, sometimes fatigue is outside of the MPN. Have you had your TSH or thyroid checked? What about your vitamin D levels? How are you doing on these PCP general checks? Things that may be contributing to the life and the happiness.

And finally, let me make a plug for mental health. I don’t know how much we were emphasizing before the COVID pandemic, but after, the last three or four years have been tough. Healthcare providers, caregivers, patients themselves, mental health checkup, that can also be contributing to fatigue, not getting out of bed, in addition to the organic medical problems. So, let me advocate a multifactorial approach, scientifically summed up as treating what you can with the underlying MPN, fine, treating the side effects and symptoms of the MPN, as you said. 

And then, other, which can be a huge bucket, particularly as we get older, to not forget about that. Again, checking the thyroid level. And then when you’re on these different treatments, you can personalize it. Interferon, obviously, has its own separate set of side effects and then of course the other agents. So, I think that may be the best way to approach it. Maybe a three-bucket approach. The MPN itself, and then the treatment itself, and then the other, something like that.  

Katherine Banwell:

And as you’ve mentioned, it’s all going to be personalized and individualized.  

Dr. Pemmaraju:

Hugely.   

Katherine Banwell:

Right, because what’s going to work for one person is not necessarily going to work for another.  

Dr. Pemmaraju:

Hear, hear, well said to that. You know, you think you make a great diagnosis in the clinic, someone’s having fatigue, they’re on therapy for your MPN. You check the TSH, it’s wildly abnormal. Okay, you refer them to endocrine. Six months later, the thyroid level is completely normal now on thyroid medicine. And yet, the fatigue, brain fog, everything is still not clear.  

The MPN is under good control. What gives? That’s the difficult part of these diseases. So, I really love what you said about the personalization and to keep looking and keep trying. 

Can Mobile Health Apps Lower the Burden of MPN Symptoms?

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Can Mobile Health Apps Lower the Burden of MPN Symptoms? from Patient Empowerment Network on Vimeo.

How can the burden of myeloproliferative neoplasm (MPN) symptoms be lessened through the use of mobile health apps? Blood cancer patient Lisa Hatfield shares common MPN symptoms that patients experience and explains wellness strategies and mobile app study results that decreased the symptom burden for patients.

Download Resource Guide

See More from MPN TelemEDucation

Related Resources:

How Can MPN Patients Continue to Use Telemedicine and Overcome Barriers

 How MPN Providers Want You to Prepare for Telemedicine Visits

 How MPN Patients Can Best Prepare for a Telemedicine Visit

How MPN Patients Can Best Prepare for a Telemedicine Visit

Transcript:

Lisa Hatfield:  

As an MPN patient, you might experience symptoms like fatigue, night sweats, difficulty sleeping, abdominal discomfort, bone pain and others. However, early data using integrative approaches for the treatment of MPNs are promising, including aerobic activity, yoga, meditation, and strength training, to reduce the symptom burden and improve inflammation. With the evolution of smartphone technology, mobile apps have been increasingly popular to document wellness strategies. With this in mind, the University of Arizona Andrew Weil Center for Integrative Medicine developed and successfully piloted a global wellness mobile app, My Wellness Coach (MWC), to guide MPN patients on self-management strategies for their symptom burden. 

The app had patients set at least two wellness goals with clear action steps within these seven areas: nutrition, movement, sleep, resilience, environment, relationships and spirituality to work on over the course of 12 weeks. Within the app, there were links to curated resources and tips. Participants were sent 24- to 72-hour interval reminders before and after each action step and a goal deadline to encourage action throughout the intervention. At the end of the study, improvements were observed in inactivity, impaired concentration, dizziness, numbness, sexual dysfunction, night sweats, bone pain, and quality of life. 

If you’d like to implement something similar to what the participants did, try the following: 

  • Reflect on why you want to change your symptom burden so you feel motivated  
  • Determine which of these categories: nutrition, movement, sleep, resilience, environment, relationships, and spirituality would you like to set goals in 
  • Create two goals from those categories and make them SMART- specific, measurable, attainable, relevant, and time-bound. 
  • Utilize resources available to you through support groups or online tools 
  • Set reminders on your phone or calendar for each step you need to take to complete your SMART goals

Mobile-based apps are another example of how MPN patients can use telemedicine in their day-to-day life and improve care.

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How Can Myeloproliferative Neoplasm Patients Use Integrative Health?

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How Can Myeloproliferative Neoplasm Patients Use Integrative Health? from Patient Empowerment Network on Vimeo.

How can myeloproliferative neoplasm (MPN) patients benefit from integrative health? Experts Dr. Krisstina Gowin, Dr. AnaMaria Lopez, and patient Lisa Hatfield discuss common symptoms of MPN patients, integrative health techniques, and benefits of including integrative medicine.

Download Resource Guide

See More from MPN TelemEDucation

Related Resources:

What Telehealth Tools Impact Myeloproliferative Neoplasm Care

 Is Technology Accelerating Progress in Myeloproliferative Neoplasm Care

 How Is Telemedicine Influencing Personalized Medicine for MPN Patients

Transcript:

Lisa Hatfield: 

So I have multiple myeloma, and, of course, that comes with side effects from the different therapies and symptoms of their own. We have a great integrative health center at our cancer center here locally where I live, and I’ve used it for acupuncture for some of my symptom management. I’ve also watched you on different platforms, through webinars and patient support groups where you describe different integrative health techniques and that type of thing. So I’m wondering…two questions. The first part is, what symptoms do MPN patients face the most? And then how can they use integrative health to do that, particularly as it relates to telemedicine? Are there telemedicine options for integrative health? I suppose things like acupuncture, maybe not, but other types of, of integrative health, and can they get a consult for integrative health? Can they even go as far as getting a consult? So if you can answer those questions, the symptoms they face, how to use integrative health, and if they can get a consult for integrative health, that would be great. We’d appreciate that.

Dr. Krisstina Gowin: 

Yeah. Well, Lisa, I want to take a moment just to validate your journey that you’re going through and to congratulate you for your self-advocacy to go look for those integrative therapies to support yourself. And for MPN patients, I will say that it’s a really unique group, and so all cancer patients experience symptoms. But in myeloproliferative neoplasms, it’s really kind of this heterogeneous what we call a symptom burden. And so most patients will experience fatigue about 80 percent of MPN patients. But then beyond that, there’s really a whole slew of different sequelae that can be associated with the disease, which you may or may not think about when you’re thinking about MPNs, such as psychosocial issues, sleep issues, sexual issues.

And then we have kind of the classical issues that happen with MPNs, such as dizziness, but we talked about the fatigue, bone pain, itching, abdominal discomfort from an enlarged spleen and early satiety, or feeling full quickly. It’s really a huge symptom complex, if you will. And we now have validated measurement tools to better understand those. It’s the MPN symptom assessment form, which has really, I think, revolutionized how we look at MPN. It’s no longer just treating the blood counts. We’re treating the patient as a whole, and even within our NCCN guidelines, kind of how we as oncologists go through the algorithms of how to change therapy and how we look at patients. We now have symptoms in there. So even if blood counts are controlled, we may change therapies or even do a bone marrow based on symptoms alone. So symptoms are a huge thing in MPN. So getting to your second question for integrative health.

So I think that MPN…the patients in the community are really early adopters for digital engagement, which is fantastic. Everyone’s very engaged, and I’ve had the opportunity to work on meditation apps, yoga apps, a wellness-based app here from the University of Arizona, and patients just really accrue fast. Everyone’s so excited. And most of these, though, were very small kind of pilot trials, looking at feasibility, can’t we really do these things? But most of them as well are showing some impacts on depression, anxiety, sleep, and total symptom burden. So I do think that these modalities through digital platforms certainly can make a difference on the symptoms. And we’ve seen that with meditation. We’ve seen it with yoga, and we’ve seen it with a seven domain wellness app. And is it the digital engagement? I don’t think so.

I think it’s likely the integrative therapies that they’re receiving through that platform, right? We know meditation works, we know yoga works, perhaps not so well in MPNs. We need to build that evidence base, but other solid cancers, we know those interventions really work. But it’s wonderful to get that kind of early data, say it not only works, but it also works when you’re doing it at home, when you’re doing it on a digital platform. And so I would encourage all patients listening to this to, yes, look at what’s around you, what are the resources, what are the clinical trials? Looking at these different digital modalities for integrative medicine, but also to go get an integrative consultation.

And as Dr. Lopez already had mentioned, she does all of her integrative medicine via telemedicine now, which is fantastic. And so you, it’s really, it’s that, you know, your fingertips. You now have access to wonderful oncologists like Dr. Lopez to guide you in this journey. And the journey is not only allopathic Western medicine, but it’s treating you as a person, you as a whole symptom complex. And that’s really what integrative medicine aims to support you through. 

Lisa Hatfield: 

And you mentioned that Dr. Lopez also does her integrative health via telemedicine. So I’m going to ask, Dr. Lopez, can you speak to that a little bit more? How do you do that with patients? Do they just contact you and set up an appointment for an integrative health consult or appointment? And do you conduct some of that yourself, or do you send them to particular resources in the community?

Dr. AnaMaria Lopez: 

Sure. So, yes, patients can make an integrative oncology appointment directly. I really like to do the consults through tele simply because I can…as I was mentioning, it’s like a virtual house call to really get a sense of the patient. Often a partner, significant other, caregiver might be present as well, and as we know there’s the survivor and there’s the co-survivor. So including both can be very helpful to some people, and I think the initial intake…again, as Dr. Gowin was saying, it depends so much on what the person wants to do. So the first opportunity for coming together is simply, “Where are you? What are your goals? What’s important to you? And of the panoply of options, which might be the easiest or the one that you are most interested in?”

And so depending on what it is, we might work together, we might also bring in others if the person is really interested in making lifestyle changes, let’s say related to nutrition. The person might work closely with a nutritionist for some period of time and then come back, and we’d come together and reassess. You mentioned the acupuncture, and you can’t do acupuncture at a distance, but you can certainly teach people about the points and consider acupressure for certain points. So there are so many ways to engage and interact, but yes, I think like a lot of medicine, it’s a team-based approach.

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Compassion Meditation

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Compassion Meditation from Patient Empowerment Network on Vimeo.

 Learn about cultivating love and tenderness towards others and bolstering feelings of connectedness as well as understanding and acceptance of others. Support your overall psychological and emotional well-being. Watch now.

See More from Rx for Community Wellness

Transcript:

Greetings everyone. Thank you for joining this Patient Empowerment Network program. In this practice session we will be focusing our attention on directing compassion towards another.

Compassion is having tenderness towards someone who is suffering along with a heartfelt desire to alleviate their suffering. In this practice we will be offering this compassion towards someone who is dear to ourselves. Bring to mind someone in your life who is suffering. Someone is going through challenging time. Who may be struggling with discomfort or distress? Picture them in your mind and allow yourself to feel a tender caring for their wellbeing. Allow yourself to hold them in your heart. Feeling their presence.

To your level of comfort, allow yourself to feel into their discomfort, their pain, their suffering. Doing so without overwhelming yourself with their pain, with their suffering. So, doing so to your level of comfort. Feeling your heart continuing to open to them. Wishing them well. Extending your tenderness and compassion towards them in their pain and wishing them well. Wishing them well. Repeating the following phrases or modify them to meet your heart’s sincere desire for their wellbeing: May you be held in compassion, May your pain and sorrow be eased, May your heart be at peace, May you be free from suffering.

Again, you modify any of those phrases that are suitable for your desire for their wellbeing. Repeating to yourself with a tender heart. Bringing this practice to a close. Releasing the phrases and noticing how you feel. Gently open your eyes. We hope you have enjoyed this Patient Empowerment Network program

Is Whole Patient Care a Path to Health Equity?

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As part of our Patient Empowerment Network (PEN) Path to Empowerment, whole patient support is included in the path for patients. Our advocacy program called Rx for Community Wellness focuses on culturally competent whole person healthcare that treats the whole patient in tandem with existing care while also looking at health equity issues. As we prepare to launch into another series of Wellness Rx Meditation and Wellness Rx Nutrition programs, here’s a look at the programs and resources that are already available. The intention of these resources are to improve cancer care for all patients by providing meaningful mind-body tools that maximize well-being.

Equity Rx Webinars 

Unfortunately, not every patient is starting from the same level in their healthcare. Health equity topics must be addressed to achieve equitable care for all, and the Equity Rx webinar series have provided an opportunity to address some of these issues. In the Equity Rx webinars, we pulled together a panel that included a cancer survivor, a naturopathic doctor, and a public health scientist. The panel members discussed the importance of culturally competent whole person cancer care to work toward improved cancer outcomes for all patients. Some of the topics covered in the Equity Rx webinars include: 

  • Ways that healthcare systems can better work toward whole person care
  • Solutions to help overcome trauma and lack of trust to work toward healing
  • Advice from a cancer survivor on how to work toward optimal patient care
  • The effects of stress, anxiety, and depression on physical health
  • How environmental conditions and personal experiences can impact health
  • Existing barriers to diagnosis and a patient’s experience as a Mexican American
  • Barriers to culturally competent care and how to address barrier issues
  • Factors that whole person care examines and obstacles healthcare systems   pose to patient care

Survey feedback about the Equity Rx and Wellness Rx Meditative and Nutritional Tools have been extremely positive with 90.2% of survey respondents believing this program has given them a better understanding of the need for health equity. As more people become aware of health equity issues, they can also advocate on behalf of others to improve care for all patients. 

In addition, 82.7% of survey respondents agreed they are very likely to share their story with others to raise awareness about the need for equitable care after the Equity Rx program. And through the process of sharing their personal experiences, patients can not only help educate others but may also be able to work through some of the emotional load of their cancer journeys.

One survey respondent also came away from the programs with motivation to add holistic care to part of their care team.

My hematologist is pretty responsive, but I don’t have a holistic doctor, and I’d like to get one. This program definitely raised my awareness of equity issues. Sasha was great explaining her issues. Thank you!

Another survey respondent shared how the programs instilled motivation to take a more active role in their care.

I will make more of an effort to get my team members to read information that has been shared on my tests and progress.

Equity Rx Crowdsourced Resource Guide

PEN recognizes the value of educational resources and in gathering input from a wide selection of people – whether they are patients, care partners, or patient advocates. In the printable and downloadable Equity Rx Crowdsourced Resource Guide, whole person care is described with an explanation of why whole person care is important in improving health outcomes for all patients. Equity Rx survey highlights are also shown in easy-to-read graphics in the resource guide along with crowdsourced solutions for working toward equitable healthcare.

Is Whole Patient Care a Path to Health Equity?

Wellness Rx Meditative and Nutritional Tools

Whole person care is a primary tenet of holistic medicine, and nutrition and meditation practices are two ways to incorporate holistic care. Holistic care is one way that can support patients in maintaining healthy minds and bodies. In the Wellness Rx Meditative and Nutritional Tools, we created educational videos and transcripts to improve knowledge about meditation practices and nutrition to boost patient health. Meditation topics that were covered in the series include breathing, abdominal breath, chest breathing, body parts, body scan, complete breathing, joy, whole body, heart center, and breath counting. While nutrition topics covered in the series include the benefits of vitamins, minerals, carbohydrates, fats, protein, and plant-based diets. 

Access to health and wellness options are vital for all patients. We at PEN hope you can take advantage of the Rx for Community Wellness program resources and also share them with others to improve their care. Additional webinars and resources will be coming soon to help patients and care partners move toward improved empowerment, care, and support for their cancer journeys.

Self-Compassion Meditation

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Self-Compassion Meditation from Patient Empowerment Network on Vimeo.

Learn about cultivating love and tenderness towards yourself and bolstering feelings of self-worth, self-acceptance, and resilience. Support your overall psychological and emotional well-being.

See More from Rx for Community Wellness

Transcript:

Greetings everyone. Thank you for joining this Patient Empowerment Network program. In this practice session we will be focusing our attention on directing compassion towards ourselves. Compassion is having tenderness towards someone who is suffering along with a heartfelt desire to alleviate their suffering.

In this practice we will be targeting this compassion towards ourselves. Bring to mind a situation in your life that is difficult, a situation that is causing you stress. To your level of comfort allow yourself to feel the discomfort of the situation in your body. Now please don’t force this. Back off if it is too intense. You don’t want to force this. Saying silently to yourself as you feel into the discomfort: this is a moment of suffering, this is difficult, this is hard, this is painful. Whatever words you can use to acknowledge your distress. Acknowledging that in life there are difficult moments. That you are not alone. So, silently saying to yourself, acknowledging to yourself that suffering is a part of the human experience. We all go through struggles in our lives. Acknowledging your struggle, your discomfort as a human being having a human experience. If you like, you may place a tender hand over your heart. Asking yourself what kind words you need to soothe yourself in this moment of distress, of discomfort, of suffering. See if any of the following phrases work for you or find what works for you in your particular situation: May I give myself the compassion that I need, May I learn to accept myself as I am, May I forgive myself, May I be kind to myself, or May I be patient. Repeating your desired phrase or phrases to yourself with a tender heart.

Bringing this practice to a close. Noticing how you feel. So releasing the phrases. Noticing how you feel. Gently open your eyes. We hope you have enjoyed this Patient Empowerment Network program

Loving Kindness Meditation (Part II)

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Loving Kindness Meditation (Part II) from Patient Empowerment Network on Vimeo.

 Learn about cultivating love and kindness towards others and enhancing your capacity for social connectedness. Watch now.

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Transcript:

Greetings everyone. Thank you for joining this Patient Empowerment Network program. In this practice session we will be planting seeds of loving kindness towards others in the garden of our minds. 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. Begin to feel into the weight of your body being supported by your seat. Taking in a deep breath in through the nostrils and exhale softly out the mouth with pursed lips. Do this several times. Releasing control of the breath and allow yourself to feel into the natural rhythm of your breath. The natural uncontrolled breath. Relaxing with each breath. Bring to mind the feeling of love to the best of your ability. Without forcing it. You may bring up a memory to support you in this process. The important thing here is to feel into the quality of love itself. Again, without forcing it.

Allowing this feeling of love to permeate your mind and body, your entire being. With a loving heart bring to mind someone who is dear to you. With a kind and loving heart begin to silently repeat the following phrases towards them. Feeling into to each repetition of the phrases to best of your ability without forcing it. May you be safe from harm, May you be well in mind and body, May you be happy, May you live with ease, May you be filled with lovingkindness. Let’s circle back and extend this kind heartedness towards all beings.  May all beings be safe from harm, May all beings be well in mind and body, May all beings be happy, May all beings live with ease, May all beings be filled with lovingkindness. Releasing the phrases. Noticing how you feel. Gently open your eyes. We hope you have enjoyed this Patient Empowerment Network program

Loving Kindness Meditation (Part I)

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Loving Kindness Meditation (Part I) from Patient Empowerment Network on Vimeo.

Learn about cultivating love and kindness towards yourself and enhancing psychological and emotional well-being. Watch now.

See More from Rx for Community Wellness

Transcript:

Greetings everyone. Thank you for joining this Patient Empowerment Network program. In this practice session we will be planting seeds of loving kindness towards ourselves in the garden of our minds.

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. Begin to feel into the weight of your body being supported by your seat. Take a deep breath in through the nostrils and exhale out the mouth softly with pursed lips. And do this several times. Allow yourself to feel into the rhythm of your natural breath. The natural uncontrolled breath. Relaxing with each breath. Bring to mind the feeling of love to the best of your ability. Without forcing it. You may bring up a memory to support you in this.

The important thing here is to feel into the quality of love itself. Without forcing it. Allowing this feeling of love to permeate your mind and body, your entire being. With a loving heart begin to softly gaze inward, inwardly towards yourself. With a kind and loving heart begin to silently repeat the following phrases towards yourself. Feeling into to each repetition of the phrases to best of your ability without forcing it. May I be safe from harm, May I be well in mind and body, May I be happy, May I live with ease, May I be filled with lovingkindness. Let’s circle back through one more time. May I be safe from harm, May I be well in mind and body, May I be happy, May I live with ease, May I be filled with lovingkindness. Releasing the phrases. Noticing how you feel. Gently open your eyes. We hope you have enjoyed this Patient Empowerment Network program

Meditation on Peace

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Meditation on Peace from Patient Empowerment Network on Vimeo.

Learn about taking in the good by attending to the qualitative state of PEACE and making it a more available inner resource. Watch now.

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Transcript:

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 session 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 Peace.

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 to mind an experience of Peace. Recalling any experience that brings to mind Peace. Something that has soothed your spirit. Feel into the Peace of the experience. So, you want to tap into the Peace, the feeling of Peace. And letting go of the story about the experience and focus on the feeling of Peace. Maintaining your attention on Peace to best of your ability. If the mind wonders about, gently come back to the feeling of Peace. Without fighting your mind gently come back to the feeling of Peace. Opening yourself to this Peace. Allowing it to fill your mind. Noticing this feeling of Peace. Feeling into it like it’s your first time. Taking it all in. Receiving the Peace. Giving yourself over to it. Allowing it to become a part of who you are. A part of your being. This Peace. This feeling of Peace. Notice what is pleasant about this experience of Peace. Feeling the presence of Peace. Unbounded Peace. Exhaling all your breath out and taking in a full inhalation and exhaling with a soft ah… Gently open your eyes.

We hope you enjoyed this Patient Empowerment Network program.

Meditation on Joy

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Meditation on Joy from Patient Empowerment Network on Vimeo.

Learn about taking in the good by attending to the qualitative state of JOY and making it a more available inner resource. Watch now.

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Transcript:

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

Chest Breathing Meditation

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Chest Breathing Meditation from Patient Empowerment Network on Vimeo.

 Learn about cultivating an alert quality of mind through controlled chest breathing

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Transcript:

Greetings everyone. Thank you for joining this Patient Empowerment Network program. In this practice session we will be exploring active breathing as a form of meditative practice. Before we start the practice, I want to state that the quality of your breathing is intimately related to the qualitative experience of your mind.

In this session we will be taking advantage of this relationship between the mind and the breath by manipulating the breath in order to manipulate and regulate the mind. To start our practice, find a comfortable seat. A chair is perfectly fine. You may also make arrangements to support your back if necessary. Allow your eyes to softly close if you feel comfortable doing so. By closing the eyes, you minimize visual distractions. Begin to feel the weight of your body in your seat. Begin to lengthen your spine. Relaxing your shoulders. Lengthening the back of your neck. Relaxing your jaw, and the musculature of the face. Begin to take notice of the natural flow of your breath. Maybe by attending to your torso, the abdominal or chest areas, or the movement of the air as it passes through your nostrils. I invite you to imagine your torso as a cylindrical tube made of a lower chamber, the abdominal area, and an upper chamber, the chest area. In this practice we will focus on the upper chamber, the chest area. The lower chamber/abdominal area will remain steady and still throughout this practice.

If you like, you can rest a hand on your chest to help you with this exercise. Begin by actively exhaling the breath out the nostrils. Then begin to inhale smoothly and gradually through the nostrils, feeling the expansion of the upper chamber by allowing your lower ribs to fan out in all directions without straining, then your mid chest to upper chest and back without straining. When the upper chamber fills, gently and smoothly exhale out the nostrils allowing the chest area to descend. Continue this smooth and gradual controlled breathing in and out the nostrils as long as time permits. Allowing your next exhalation to be your final round and return to attending to the natural flow of your breath. Gently open your eyes. We hope you enjoyed this Patient Empowerment Network program.

Abdominal Breath Meditation

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Abdominal Breath Meditation from Patient Empowerment Network on Vimeo.

Learn how to cultivate a calm and soothing quality of mind through controlled abdominal breathing.

See More from Rx for Community Wellness

Transcript:

Greetings everyone. Thank you for joining this Patient Empowerment Network program. In this practice session we will be exploring active breathing as a form of meditative practice. Before we start the practice, I want to state that the quality of your breathing is intimately related to the qualitative experience of the mind. In this session we will be taking advantage of this relationship between the mind and the breath by manipulating the breath in order to manipulate and regulate the mind.

To start our practice, find a comfortable seat. A chair is perfectly fine. You may also make arrangements to support your back if necessary. Or you may lie down on your back for this particular practice. Allow your eyes to softly close if you feel comfortable doing so. By closing the eyes you minimize visual distractions. If you are seated feel the weight of your body in your seat. Begin to lengthen your spine. Relaxing your shoulders. Lengthening the back of your neck. Relaxing your jaw, and the musculature of the face. Begin to take notice of the natural flow of your breath. Maybe by attending to your torso, the abdominal or chest areas, or the movement of the air as it passes through your nostrils.

I invite you to imagine your torso as a cylindrical tube made of a lower chamber, the abdominal area, and an upper chamber, the chest area. In this practice we will focus on the lower chamber, the abdominal area. If you like, you can rest a hand on your abdomen to help you with this exercise. Begin by actively exhaling the breath out the nostrils, gently drawing your abdomen back towards your spine. Then begin to inhale smoothly and gradually through the nostrils feeling the expansion of the lower chamber in all directions without straining. While allowing the upper chamber/chest area to remain steady and still. When the lower chamber fills, gently and smoothly exhale out the nostrils bringing the abdomen towards the spine. Continue this smooth and gradual controlled breathing in and out the nostrils as long as time permits. Allowing your next exhale to be your final round and return to attending to the natural flow of your breath. Gently open your eyes.

We hope you enjoyed this Patient Empowerment Network program.

Chronic Lymphocytic Leukemia: Shirley’s Clinical Trial Profile

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Chronic Lymphocytic Leukemia: Shirley’s Clinical Trial Profile from Patient Empowerment Network on Vimeo. 

Chronic lymphocytic leukemia (CLL) patient Shirley felt she had a different experience not fitting the typical CLL patient demographic. Watch as she shares about her journey as a BIPOC patient, the value of clinical trials, and her advice to other patients for ensuring optimal outcomes.

See More from Patient-to-Patient Diverse CLL Clinical Trial Profiles

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Transcript:

Shirley:

In my late 30s, I started feeling extremely fatigued, and I went to my GYN. She ran a couple of tests, and she has sent me over to a hematologist because she just determined that it was something that she was not knowledgeable about. Then I had a physician contact me after several blood tests, and they had told me that it was a form of cancer, and it was leukemia, and it was called CLL, which is chronic lymphocytic leukemia.

When I heard the word chronic, I immediately thought, “Oh my God, this means like death instantly.” But they had told me that, “No, it was aggressive, but it’s definitely slow-moving,” and I have a great chance of fighting it. I was concerned because I did not feel like I wanted to be a lab rat, because I was told that I did not fit the demographics for having CLL. Most of the individuals were male of Caucasian descent, and they were much, much older than I was possibly in the late 60 to 70s, so I got a lot of stares and it made me feel very uncomfortable. So, I just didn’t want to feel like they were just like, “Okay, this is a different case. We can make a name for.” I wanted to make sure I was getting the best treatment.

I didn’t tell too many people in the beginning because I really didn’t know what was going on, but a lot of people was able to tell because no matter how much the time of sleep I got…I was always tired. The fatigue is just overwhelming. I decided to just remain optimistic about my future, because I know whenever you’re trying to battle any kind of ailment your attitude means a lot, you have to really put it out there into existence that you’re going to get better and you believe it, you have to really believe it in order to put that energy into finding out about the treatments and so forth. My doctors, they gave me a booklet that was maybe about it, and they said to me, “Take this home, study hematology and learn about your disease, how we’re going to be trying to treat it, and you know what you’re going to be feeling and you need to tell us everything if your nose itches, your eyes burn. We need to know everything that happens.”

And I was just not a complaining type of person, so there were plenty of times where I was experiencing like pain on my side and I was just like, “Oh, it’s probably just gas from the medication,” and then later found out that the medication they were giving me was enlarging my spleen, so it was pushing against my stomach, which was causing me an enormous amount of discomfort. So the doctors had to then give me other types of medication to help treat that issue that I was having, so it was definitely a long journey. This was an unusual diagnosis for someone of my heritage. The doctors explained to me that there was no blueprint for my treatment, this was, they were going to be trying things, they had a team of individuals, maybe it was like 10 or 15 of them, and they’re actually studying my case on this big screen in this room.

So it was constant medication, it was constant them trying, running the blood test, you were always, always getting blood tests, they were always giving you observations. Someone was always in your room, at least every two hours, checking to see what was going on. I just remember some time sitting in the hospital was just feeling very overwhelmed and definitely feeling isolated alone. I remember one time I was in so much pain, like my bones were hurting me so bad that I literally was just losing my mind in the bed. So they gave me some morphine, which I’ve never taken before in my life, and I wind up throwing up the chemo medication that they gave me. it was just so bad. So, the nurses and I were really overwhelmed at that point. I remember contacting family members and telling them, “I need to get out of here, I feel like they’re just trying whatever they want to try on me, and I don’t think it’s working. I don’t feel this is the place for me, like I need to really get out of here.”

So my doctor who was actually giving a seminar in Switzerland was just like…he was really amazing. He said to me, he said, “You are my prize patient. I am working every day really hard trying to get you back to being your 100 percent yourself,” He said, “You’re always like a light of sunshine.” The women that he worked with are always looking in the patient portal, and they’re like, “Shirley is coming in,” like, “Oh my gosh, she’s coming today.” And they’re excited because I always maintained a great attitude, and I always came in there dressed up.

So my doctor also recommended it when my treatment, a hospital stay was over for me to practice on taking out walks and exercising, yoga was very good meditation, they told me to get all these apps on my phone and therapeutic massages, those have been like a savior for me. I think having a good support system around you is extremely important, people who understand. Never be afraid to tell people what exactly you are experiencing. The mental fatigue that you go through is really unpredictable, and it’s off because that was not something that they, that no one prepared you for. So my doctor and his colleagues, they were just one of the greatest teams that I have experienced, them being very transparent about what was going on with me, even when I was at one time being very stubborn, I got so upset that I pulled the IV out of my arm and I was like, “You know what, I’m not doing this, I’m tired. I’ve got to get out of this hospital. I can’t stay here.”

I mean, people were just so sick, and this is not me. And they had to assure me, “It is you. You are sick, and you do have a blood cancer, and the sooner you come to terms with that, the more calm you’re going to be in being susceptible to accepting treatment. We’re here to help you, but we need you to tell us if something is not working, you don’t feel good on what’s going on in your body, we need to know.” The blood tests don’t lie, they tell them exactly what’s happening, the doctors know if the treatment is working, they monitor the CLL extremely closely. They were way more advanced at honing in on the type of treatment that I needed, so I was really assured that you’re in the right hands, and after when I started feeling a little bit better, then my trust totally opened up in staff, because I saw that they were excited about my treatment working. They were giving me the three combinations of chemo, and they were like, “This combination is working for you now.”

They started a new trial which was bringing in venetoclax (Venclexta) along with the rituximab (Rituxan), and that is what really started sending me on a better path, getting better. And then once I came off of the rituximab, which was an IV-infused chemo treatment, they decided to just keep me on the pill form of venetoclax, I was able to go into the office, which I was ecstatic about.

Advice I like to give to patients who are considering a clinical trial is definitely ask a lot of questions. Don’t be afraid, don’t be shy or hesitant and don’t feel like you feel like you’re ignorant. And always address it with a positive attitude. Keep in mind that they are there for your best interests and trying to get your health back to normalcy. Just know that you’re not in it alone. And always find someone that you can always have a conversation with if you don’t feel comfortable. Never be afraid to ask questions and just even if you do look different as opposed to everyone else that… and just get that everyone else that is sick. Don’t feel like you’re in it alone, regardless of how you look for what your demographic background is, just know that the team that’s there that’s in place is always fighting for you, and you can always say no or get a second opinion. That’s very important to know that you have options.

So, never feel afraid to ask about the clinical trials and do your research, it’s important. It’s inspiring to see people on the leukemia organization website that are exercising, they go for runs right after they receive treatment, that inspired me to say, I’m going to out and take the dog out for a walk or go out for a run and help myself get better,” and it works. It works, it really does.

Can Diet and Exercise Reduce MPN Symptoms?

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Can Diet and Exercise Reduce MPN Symptoms? from Patient Empowerment Network on Vimeo. 

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.

See More From the The Path to MPN Empowerment

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Transcript:

Ryan:

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.

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