Tag Archive for: meditation

What Is Supportive Care Therapy in Cancer Care?

/in , /by

 

In cancer care, what is supportive care therapy exactly? Expert Dr. Jennifer Ligibel from Harvard Medical School discusses the concept of supportive care and a variety of supportive care methods of nutrition, exercise, behavioral therapy, and side effect management.

Download Resource Guide

See More from RESTORE

Related Resources:

Lifestyle Interventions and Cancer Care Outcomes Research

Lifestyle Interventions and Cancer Care Outcomes Research

 How Does Nutritional Screening and Assessment Impact Cancer Care?

How Does Nutritional Screening and Assessment Impact Cancer Care?

 What Supportive Care Treatments Are Available to Patients?

What Supportive Care Treatments Are Available to Patients?

Transcript:

Lisa Hatfield:

The term supportive care may be an unfamiliar term to many patients. So what is it and what are the key components of supportive care? I’m diving deep into this topic, with the Harvard expert on this Patient Empowerment Network RESTORE program. 

Dr. Ligibel, there are so many variations of this term, and it may mean different things for different patients. Can you give us a baseline by explaining what supportive care in today’s cancer care landscape is?

Dr. Jennifer Ligibel:

Absolutely. So when we think about supportive care, we think about all of the things that we do to help our patients feel better after a cancer diagnosis through their cancer treatment, and beyond that can be things that help support people’s quality of life, decrease their side effects, support their mood. There are many, many different aspects of supportive care, but it’s all about trying to help people feel as good as they can throughout the cancer journey.

Lisa Hatfield:

Okay, thank you. Dr. Ligibel, how can patients maximize the benefits of supportive care, such as nutritional counseling and psycho-oncology to manage side effects and maintain their overall well-being during treatment?

Dr. Jennifer Ligibel:

This is a great question and this really does vary by the patient, by the stage of their disease, by the type of treatment that they’re getting. So there are a lot of different elements of supportive care, and some of them may be more useful at some points during the cancer trajectory than others. I think that speaking with their oncology team is a good first step, really being clear about the side effects they’re experiencing as a result of their treatment or after their treatment has been completed. Because there’s a lot of research that’s going on now, trying to figure out what type of supportive care can be the most beneficial for a particular side effect.

For example, there are studies that have gone on looking at treatment of things like nausea, and we know that there are a lot of anti-nausea medications that are in a really important part of the supportive care for patients receiving therapy that help mitigate nausea. But there are other strategies that may also be beneficial, things like acupuncture or altering diet. And so, I think the first step really is talking to the oncology care team about the side effects that are present to start thinking about what types of supportive care modalities can be most beneficial.

Lisa Hatfield:

Okay, thank you. And two of the things that seem to come up a lot with cancer patients, myself included, during treatment and ongoing treatment, are fatigue and then just the mental gymnastics of dealing with cancer. Do you have any suggestions on types of supportive care for those two symptoms or side effects in particular?

Dr. Jennifer Ligibel:

Absolutely. And honestly, we could talk for hours about the best ways of managing those types of issues, because they’re so common for people, and the causes of fatigue in particular can really be multifactorial. Some patients may have a low red blood cell count or be anemic. Other patients, it may be a direct effect of the treatment itself, or the treatment may be causing them to not have an appetite, and so their nutrition is not sufficient during treatment.

So I think the first step in really helping to minimize a side effect like fatigue is trying to look at, well, what are the causes? Is there something else going on that may be contributing to fatigue? Most of the time, honestly, it’s the effect of the cancer or the cancer treatment itself. And in that case, there’s been a lot of work that’s been done to look at, well, what types of supportive care modalities are beneficial, actually, and this often is counterintuitive to many people, the best medicine for fatigue is exercise.

I know it seems crazy in some ways that when you’re already feeling tired, the thought of getting out there and exercising may seem insurmountable. But there have been hundreds of studies that have looked at exercise programs as a way of mitigating fatigue. Most of the time, these programs start really slowly. They involve things like walking, doing kind of low intensity strength training, but the evidence is really consistent that exercise is incredibly beneficial to both prevent fatigue and to treat it once it develops. Another really effective strategy for both preventing and treating fatigue is cognitive behavioral therapy.

And so, this involves really thinking about your energy levels and when your energy levels are higher and matching your activity to the times of day when you have the most energy. There are many other strategies for fatigue that have been explored. Things like mindfulness and meditation. The thing that hasn’t been shown to be that beneficial in most settings for fatigue is medications, unfortunately. And I think that’s something that many of us reach when we’re experiencing any kind of a side effect is for a medication, and in this time period, unfortunately, medications haven’t been shown to be as effective.

Lisa Hatfield:

You heard it here directly from the expert. Thanks for joining this RESTORE program. I’m your host, Lisa Hatfield. 

How Can Wellness Interventions Aid Patients During and After Treatment?

/in , /by

How can wellness interventions aid cancer patients during and after treatment? Experts Dr. Amy Comander from Massachusetts General Hospital and Nicole Normandin Rueda, LMSW from PEN discuss benefits of different wellness practices, practical wellness strategies, and support resources.

Download Resource Guide

See More from RESTORE

Related Resources:

How Do Wellness Practices Impact Cancer Care Outcomes?

What Is Whole Person Care Exactly?

 Why Is It Important to Address Whole Person Care?

Why Is It Important to Address Whole Person Care?

Transcript:

Lisa Hatfield:

How can wellness interventions help patients during and after cancer treatment? And what specific practices might help? I have many questions. I’m getting to the bottom of it in this Patient Empowerment Network RESTORE program.

Dr. Comander, how can wellness interventions help folks like myself during and after treatment? And while there seems to be only pros here, can you also speak to any risks of certain wellness practices during cancer treatment? And how can patients mitigate these risks?

Dr. Amy Comander:

Such an excellent question. And I do think it’s really important for us to focus on things that a patient can do after his or her diagnosis to take control of one’s health. We know there’s nothing scarier than getting a diagnosis of cancer and going through treatment for cancer. So we want to think about practical strategies that people can employ to feel better, tolerate their treatments better, and ultimately improve their health.

So let’s pick one of my favorites, which is exercise. I know for some people that word exercise sounds intimidating, scary. Maybe they’re not someone who ever really practiced exercise on a regular basis and so when their doctor or nurse practitioner or social worker is talking to them about this, they feel kind of intimidated. Well, I will say a new field emerging is actually called exercise oncology. It’s really fascinating. And we’re really learning about what is actually happening in the body when an individual exercises, what is going on at the cellular level that may actually be fighting the cancer.

And this is really interesting and exciting. And I love reading these scientific papers. But we’re not going to get into that right now. Let’s just talk about, when you talk about practical strategies, if you’re someone who really has not been active, just walking to the mailbox to get the mail. Try to do that each day. Maybe taking a walk in your dining room, a few laps around the dining room table, if you have one, just something basic like that, walking your dog, walking a friend’s dog. Like everyone has to start somewhere.

So when we talk to our patients about exercise, we just meet them where they are and help them get started with something. And I know this sounds very intimidating, but organizations such as the American Cancer Society, American College of Sports Medicine, and my organization, American Society of Clinical Oncology, strongly recommend that individuals going through cancer treatment engage in exercise. And so you just have to start somewhere. So why is this important? Exercise has been shown to help patients tolerate their treatment better, reduce side effects, reduce the need for dose reductions, improve the fatigue that is often associated with cancer, and in many cases, reduce risk of recurrence and improve the outcome. So there are so many reasons to do it.

You also ask about risks. And I can understand that many people are fearful of starting an exercise program if this is not something they’ve been doing on a regular basis. So I would encourage patients to talk to their doctor just to address any particular concerns. Certainly, let’s say an individual has cancer involving their bone and they’re worried that they might be at risk for a fall and a fracture. That’s something they should certainly talk about with their doctor.

As a breast oncologist, I care for many women who are concerned about risk for lymphedema. Lymphedema is swelling of the arm, perhaps on the side of the surgery. And my patients are often worried, will that get worse if she starts a strength training program? Actually, it will not, but that’s a good question for her doctor or her physical therapist. So I think it’s really important to think about exercise as the number one wellness intervention that we want to address. 

Lisa Hatfield:

Okay, thank you. And over to you, Nicole, what are some common wellness practices that cancer patients can adopt during treatment? And how can patients be empowered to take an active role in their wellness during and after cancer treatments?

Nicole Normandin Rueda:

Great question. So just like Dr. Comander said, so physical activity, starting somewhere is going to be of the utmost importance. Nutrition, balanced diet, making sure you’re hydrated, you are following all the recommendations from your medical team regarding what you consume, avoiding anything that you probably shouldn’t be consuming. Stress reduction techniques are all, mindfulness, meditation, deep breathing, the things that help you kind of get back to calm is really critical. We want to make sure patients are aware of their sleep. So the sleep cycle is one of those things that people often complain about, but aren’t really informed on how important it is to your actual overall well-being.

And so if that is an issue, we want to make sure that we are referring them to the appropriate specialist in order to help get that resolved. Social connections, again, huge. We want to make sure people understand that there are organizations and people out there that are here to just serve and help as much as we can. Maintaining the relationships, not just with their immediate family and friends, but also making new connections and new relationships with people that are going to support them throughout this journey is important.

For me as a social worker, empowering patients is what I do…it’s why I’m here. We want patients to have an active role in their wellness, both during and after treatment, because we know, as trained individuals, we know that that is going to overall have a positive impact in their quality of life, in their family’s experience throughout the cancer journey. And that’s important. This is a stressful time for a lot of people. So in order to do that, we always want to make sure we’re providing education and that is first and foremost going to come from the medical providers. Follow up to that would then be everything else, all the ancillary services.

So you have organizations, Patient Empowerment Network. We are very focused on providing evidence-based information in an easy to understand way. And so that is one of those organizations that, as a social worker, I would refer everybody to. But there are others that are doing fantastic things providing education on all sorts of topics, anything that you could possibly want. There are organizations that are doing it well. Now that’s the thing, we want to make sure that we are referring patients to get evidence-based, research-backed information for them to consume and digest at their own pace. Next would be advocacy. If you don’t have a strong advocate in your corner, or if you are not comfortable speaking up or asking questions, this is one of those things that is so incredibly important when it comes to empowering patients to really be involved in their care.

And I can tell you firsthand, my mom was my dad’s biggest advocate. It was kind of embarrassing at times, but in hindsight, thank goodness, because had she not been so ferocious and asked so many questions, there’s a lot of things that we wouldn’t have known as a family going through a cancer diagnosis. So that’s really important. And I know working with medical teams, they want somebody to ask questions, they want to be able to provide as much information as they can. That’s a good backbone for people to understand, that their medical teams are going to want to make sure that they walk out of the room feeling like they have the information they need. 

And so we want to make sure that we are providing as much information, as many resources as we can. And then it is up to the patient and their care partners or their family members to then take that and run with it. But we want to be able to make sure that we’re giving them what they need in order to ask the right questions at the right time to the right people. And if they have the resources that they need to go and make it happen.

Lisa Hatfield:

Okay, thank you so much, Nicole. You heard it here directly from the experts. Thanks for joining this RESTORE Program. I’m your host, Lisa Hatfield.

Myelofibrosis Care | Impact of Diet & Lifestyle Modifications

/in , , , , , /by

Can diet and lifestyle help manage myelofibrosis symptoms? Dr. Pemmaraju explains how the Mediterranean diet and practices like yoga may improve quality of life for patients. 

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

Download Resource Guide

See More from Elevate Myelofibrosis

Related Resources:

Myelofibrosis Symptoms and Side Effects | Why Speaking Up Is Vital

Myelofibrosis Symptoms and Side Effects | Why Speaking Up Is Vital

 Emotional Health | Why It’s Vital for Myelofibrosis Patients to Share Concerns 

Emotional Health | Why It’s Vital for Myelofibrosis Patients to Share Concerns

 Advice for Shared Decision-Making | Myelofibrosis Care and Treatment Goals

Advice for Shared Decision-Making | Myelofibrosis Care and Treatment Goals

Transcript:

Katherine Banwell:

“Can diet play a role in either manifesting the disease and or helping with healing? Also, how important is exercise to the healing?”  

Dr. Naveen Pemmaraju:

I give a lot of credit to this area, to my colleagues, Ruben Mesa, Dr. Angela Fleischman, and Dr. Robyn Scherber. A lot of data that’s come out of these groups, which has shown two major findings in our MPN patients of potential clinical significance. One is as the questioner is asking about diet. It is true that we’re, several studies are pointing towards the anti-inflammatory Mediterranean diet as a potential benefit to our patients with MPN. Lots of different ideas there when they measure cytokines. 

These abnormal protein signatures that are in MPN patients can cause fatigue and some of the bad quality of life can be dramatically improved in some cases by following a strict Mediterranean diet over weeks and months. So, that’s something important. People should check it out. Obviously, diets have to be addressed with each patient and each provider because sometimes a diet may work for someone and not for you because of comorbidities, vitamin deficiencies, electrolytes, etc.  

Then the second aspect, if I may include in this question, is also the concept of yoga/meditation. Dr. Ruben Mesa and others have shown, the same thing, that you can have a potential downregulation of some of these abnormal cytokines. However, the caveat is it must be done right with a guided trainer in a real program over a certain period of time. What I think both of these non-pharmacological interventions tell us is that there are things beyond medicines and pills that may really help our patients in some aspect of the disease.  

Well, if that aspect is fatigue, night sweats, headaches, I think that’s a really important thing. So, let’s say together on this program that these data sets are evolving, they’re interesting, they’re intriguing. For some people, it may be an easy incorporation. Frankly, some people may already be doing these things, but as you ask nicely, let’s include in the discussion non-pharmacologic as we heavily investigate the pharmacologic as well. We’re all open to that. Let’s see the data, and the data is evolving.   

Navigating Anxiety and Stress Following Follicular Lymphoma Treatment

/in , , , , /by

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: 

Share Your Feedback:

Create your own user feedback survey

Expert Advice | Strategies for Managing MPN-Related Fatigue

/in , , , , , , , /by

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?

/in , , , , , , , /by

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.

Share Your Feedback:

Create your own user feedback survey

How Can Myeloproliferative Neoplasm Patients Use Integrative Health?

/in , , , , , , , /by

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.

Share Your Feedback:

Create your own user feedback survey

Compassion Meditation

/in , , , , , , , , , , , , , , , , , , , , /by

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?

/in , /by

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

/in , , , , , , , , , , , , , , , , , , , , /by

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)

/in , , , , , , , , , , , , , , , , , , , , /by

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.

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 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)

/in , , , , , , , , , , , , , , , , , , , , /by

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

/in , , , , , , , , , , , , , , , , , , , , /by

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.

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 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

/in , , , , , , , , , , , , , , , , , , , , /by

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.

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 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

/in , , , , , , , , , , , , , , , , , , , , /by

Chest Breathing Meditation from Patient Empowerment Network on Vimeo.

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