Tag Archive for: stress

Care Partners | Tools for Self-Care and Managing Emotions

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 Why is it essential for care partners to have self-compassion when caring for a loved one? Tiffany Richards, a myeloma nurse practitioner, helps care partners in understanding why they should practice self-care, recognizing the signs of burnout, and learning about support resources available to them.

Tiffany Richards, PhD, APRN-BC, AOCNP is a Nurse Practitioner in the department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center.

See More from The Care Partner Toolkit: Bispecific Antibodies

Related Resources:

Being Empowered | Why Care Partner Should Feel Comfortable Voicing Concerns

Being Empowered | Why Care Partners Should Feel Comfortable Voicing Concerns

 What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

What Myeloma Care Partners Should Know About Bispecific Antibody Side Effects

 Advice for Being Prepared As a Bispecific Antibody Therapy Care Partner

Advice for Being Prepared As a Bispecific Antibody Therapy Care Partner

Transcript:

Katherine Banwell:

Being a care partner can be taxing mentally and physically, how do you encourage care partners to ensure that they’re taking care of themselves during a process?  

Tiffany Richards:

I think it’s really important for our care partners to take time for themselves because if you’re investing all of your energy into the patient, that’s going to deplete you.  

And when you’re depleted, you’re just being set up for you to get sick or for you to have a problem. And so, it’s important to take time, whether that’s meeting your friends for lunch or dinner or something, making arrangements for somebody else to come and stay with the patient. If you don’t feel comfortable leaving them alone, then engage the people around you. I think it’s important to create care teams, not just focusing just on one person that’s dedicated to providing care because if you do that, then you don’t have anybody else brought in that can provide respite. And we all need respite. We can’t always be caregiving 24 hours a day. If I had to caregive 24 hours a day, I’d be exhausted. And so, it’s important to have a care team.  

Look at the people around you, whether that’s friends or whether it’s some sort of religious activity, other family members, and creating a team so it doesn’t fall just on one person. I think you can have one person be like the main reference point to get to information, but then bringing everybody in so that you can get the care that you need for yourself. It’s really, really important. 

Katherine Banwell:

What are some signs of burnout and how are they managed? 

Tiffany Richards:

I would say it’s exhaustion, difficulty concentrating, just feeling depleted; where you feel like all of the energy that you have is being drained out of you.  

Those would be signs that I would be concerned about and say, “You need an intervention.” So, be on the lookout for that. I remember my mom was caring for my dad, and she was getting burnt out by it all. And so, she lost weight because she wasn’t able to eat because she was so stressed. And so, making sure that you’re taking care of yourself is so, so important. I just can’t even stress that enough. 

Katherine Banwell:

You mentioned some things that the care partner can do to take care of themselves, but what about handling emotions and anxiety? Do you have tips for them? 

Tiffany Richards:

So, I think in the world that we live in, and I tell a lot of my patients this, I think all of us could probably use some amount of therapy just to deal with life stressors. The world is a very stressful place to live in.  

And I think finding somebody that you can talk to is so important. Having a therapist allows you the opportunity to talk to somebody who has no judgement, who’s not going to give you their opinions of what you should do. I think that’s important because it offers somebody outside of the situation for you just to be able to download on. And that is so therapeutic; I can’t recommend that more. I really recommend counseling for people just because we all need that person that’s not in the middle of the situation that you can just download on and say, “This is what I’m feeling.” They’re not going to be judging you and saying like “That’s right,” or “That’s the wrong way to feel,” or giving their advice on things.  

And people are well-meaning by giving advice and giving their perceptions of things, but it might not always be helpful to you as a caregiver. And so, having that other person there can be really beneficial. 

Katherine Banwell:

Are there support resources available for care partners? 

Tiffany Richards:

So, there are. I know International Myeloma Foundation has some caregiving resources. I think maybe the Leukemia Lymphoma Society has some.  

There’s probably not enough as there needs to be, but there is some more information coming out. I think concerns about the caregiver and care partners is becoming more frontline as patients with myeloma in particular are living longer, and all patients with cancer are living longer. But they’re living longer on therapy. It can be hard for care partners because it’s not just this six-month period of time. 

It’s like this indefinite period. And so, there’s more things coming out, but I would definitely say probably the best resource is finding somebody that you can talk to.  

Katherine Banwell:

Is there anything you’d like to add about caring for someone who is being treated with bispecific antibody therapy? 

Tiffany Richards:

Yeah. I think knowing as much as you can about how the drugs work is really important, and then also what you can do to help manage and mitigate some of the side effects is important. And then, making sure that you understand the schedule, and as well as the schedule for the supportive medications is also really important. When we transition patients from an academic center to community, we usually have a touchpoint with that community provider. We provide instructions. 

So, I think it would good to ask the academic center for a copy of the letter for the communication that’s being given, so that everybody is on that same page, can be really, really helpful. 

How Do Psychological Factors Impact Diet During Cancer Treatment?

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How can diet be impacted by psychological factors during cancer treatment? PEN Program Manager Joelys Gonzalez and Communication Manager Nicole Normandin Rueda, LMSW discuss common psychosocial factors, various impacts to diet and nutrition, and strategies to help mitigate negative impacts to patient health. 

Download Resource Guide

See More from RESTORE

Related Resources:

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?
What Role Does Exercise Play in Cancer Treatment?

Transcript:

Lisa Hatfield:

Have you ever wondered how psychological factors could influence your dietary intake during cancer treatment? Understanding this connection is more crucial than you might think. In this segment, we’ll dive into the complex interplay between mental health and nutrition on this Patient Empowerment Network RESTORE program. 

So, Joelys, what psychological factors most commonly affect a cancer patient’s ability to maintain proper nutrition during treatment? 

Joelys Gonzalez:

There are many psychological factors here in hand, but some most important ones will be like anxiety, depression, and stress are the most common ones in cancer patients and can significantly affect their ability to maintain the proper nutrition during and after treatment. For example, anxiety can lead to reduce their appetite or cause a patient to skip a meal altogether, because they’re super anxious about their treatment and sometimes they can actually forget to get their meal of day. Depression might also make it difficult for patients to find motivation into prepping a meal themselves, or even buying a meal.

Sometimes they could, specifically if they live alone, sometimes it’s hard to just think yourself, what can I eat? What should I eat? And that can cause stress. That’s where the stress comes, whether from the diagnosis itself, or it could be financial concern or worries about a family member. That can lead to a patient to have erratic eating patterns. And sometimes they can also, they might overeat as a coping mechanism, while there are others that might lose their appetite completely and not even recognize that they have lost their appetite or if they had a meal of the day. Additionally, this can also cause cognitive changes like chemo brain. We have all heard about chemo brain, we forget, or foggy brain.

This can also affect the meal planning or prepping. This can make it very challenging as many patients can lead to unhealthy eating habits. It’s also worth noting that taste can also change during treatment, which can also be a really huge side effect that many patients go through. As we can know, previously maybe a person, a patient enjoyed certain foods. Now they might not be able to taste that food, and they might find it unappealing. And making the patient’s ability to eat well, super complicated.

And I feel like to help address these issues, I have been working with patients closely to identify these psychological barriers and creating some coping skills or some coping strategies that can make it easier for them to eat or to make some easy to prep meals more enjoyable such as small meal prepping, like, just involving your family or friends overall to make something that you used to, that you used to like, or that you used to enjoy. That can help also a patient kind of overcome that barrier by having also the emotional support that many can gain from counseling or support groups or their family members or their neighbors. It could be anyone. Also, like for example, a puppy. You could have a puppy providing you emotional support.

I am a huge fan of puppies, and just recognizing and addressing these psychological factors is very crucial in helping a patient maintain their nutrition and overall health during and after treatment. And not just patients but also the care partners. Care partners also go through those challenges, especially wanting to make sure that the patient is eating well or that the patient is getting the correct nutrition.

Lisa Hatfield:

Okay. Thank you so much. 

Lisa Hatfield:

So for both you, Nicole and Joelys. We’ll start with Nicole. first. What strategies can be employed to help cancer patients overcome psychological barriers to healthy eating, such as anxiety, depression, or changes in taste and appetite? 

Nicole Normandin Rueda, LMSW:

So piggybacking off of what Joelys just offered, I think that really utilizing your health care team and all the resources available is going to be critical. So we want to make sure there’s nutritional counseling available.

So a lot of times, for example, a lot of times getting enough protein is difficult because, I mean, if you’re not eating a whole bunch of chicken all day, I mean, it’s hard to get enough protein in all three meals. So, things like Ensure or Boost or whatever, whatever it is that your health care team recommends, not only can they recommend it, but usually there are social workers that can help you get, either coupons or discount codes or whatever, because the cost can also add up. So that’s a huge strategy, right? Utilizing your network, your health care team, to really make sure that you’re helping alleviate any of those issues that you may be having is first and foremost.

Next, I would say, if you needed it, there are cognitive behavioral therapy techniques, as well as like behavior change techniques that you can use, and you can go through with a counselor to figure out how you can change your thought process and help set goals, monitor, food journals, all these little things that for some people super helpful, other people, maybe not so much. Other people might just be like, hey, I just need to remember to eat something today. I need to be able to keep my food down in order to take my medicine. So that’s where we’re going to prioritize our efforts, right?

And then also, as far as the taste and texture thing. There are texture things that some people either can no longer handle or have never been able to handle really. And so we want to make sure that we are encouraging or offering suggestions that are helpful. But also, there are things that happen with side effects when it comes to your mouth, your salivary glands, your taste buds, all of that, your throat.

There are side effects that so many different patients with cancer experience that are not really talked about. And so we have to make sure that we are just on top of it. So we’re making sure that if you’re not eating something, if you’re not, if you don’t go near a certain food, what’s the reason there? And then we can offer suggestions if we need to. Another thing that is difficult to do is mindful eating. And what does that mean, right? Promoting like slow eating. So there are chemicals in your brain that whenever you are eating too fast, your body doesn’t understand, like it takes a while to catch up and say, oh wait, I’m full or oh you know what, this is not what I needed right now.

So we want patients to just slow down. Make sure you are listening to your hunger, like, if you don’t really think about it, sometimes you’re like, oh my goodness, it’s gone eight hours, and I haven’t had anything but an apple. That’s not going to be helpful long term.  So we want to make sure we’re having patients understand the consumption process, what it looks like, how often should I be eating, and what are the meals, what should they look like? Are berries enough, or do we need to add like a protein, some walnuts in there to eat the berries with the walnuts?

What is it that I need to do in order to make sure that I am meeting these nutritional recommendations? 

Lisa Hatfield:

Okay, thank you, Nicole 

Lisa Hatfield:

And, Joelys, do you have anything to add to that? Different strategies that can be employed by cancer patients to help overcome those barriers to eating healthy? 

Joelys Gonzalez:

Honestly, I want to piggyback on what Nicole said. She mentioned most of the strategies that I can possibly think of at the moment, but making sure you work closely with your healthcare team. It’s very important. That could be either the dietitian or your mental health professional making sure that you are having a unique personal plan for you. That’s very important, not just for the nutritional needs of a patient but also for the psychological needs.

For example, like I mentioned before, anxiety and depression, if you’re feeling anxiety and depression, psychological support might be like counseling or therapy can be super beneficial, because they can help you manage those emotions and find motivation and for eating again. Also, for example, you mentioned the changes of taste, you can also continue to try small spices or different spices or different texture until you’re able to get to that comfortable space that you’re looking for. And not just trying to give up at the first hand, I know it can be tough.

t is tough to be focusing on whether your mental health or your nutrition, but also being able to focus on having to celebrate that little small step. It’s very important to continue motivating yourself. And also, I encourage having small meals. Don’t think about it as a full meal perspective when you’re looking at your nutrition, because starting small is better than starting big and being disappointed and having that disappointment or overwhelming feeling.

Lisa Hatfield:

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

What Role Does Exercise Play in Cancer Treatment?

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How can exercise benefit cancer patients? PEN Program Manager Joelys Gonzalez and Communication Manager Nicole Normandin Rueda, LMSW discuss the benefits of exercise to cancer health and recovery, recommended exercise types, and tips for patient support and maintaining some level of activity. 

Download Resource Guide

See More from RESTORE

Related Resources:

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?

 How Do Psychological Factors Impact Diet During Cancer Treatment?

How Do Psychological Factors Impact Diet During Cancer Treatment?

Transcript:

Lisa Hatfield:

How can staying active during cancer treatment benefit your overall health and recovery? In this Patient Empowerment Network RESTORE program, we’ll explore the vital role of exercise in cancer care and uncover how incorporating physical activity into your treatment plan may enhance your well-being and support a better outcome. 

Joelys, how can physical activity be safely incorporated into a cancer treatment plan? And what types of exercises are most beneficial for patients? 

Joelys Gonzalez:

Well, incorporating physical activity into a cancer treatment plan requires more of a personalized approach, considering the type of cancer or the treatment being received or the overall health. I often start this discussion with patients by letting them know the importance of exercising during and after treatment, explaining how it can help manage side effects such as fatigue, stress, and depression. I usually recommend starting with low impact activities such as swimming, walking, or gentle yoga, as long as, of course, the patient is able to move around, whatever you’re capable of, which can be just adjusted based on the patient’s energy levels and how they’re feeling on day by day. Of course, if they’re feeling low, they can start doing small activities, light activities, such as moving your fingers or moving your head around. 

I also stress the importance of listening to your body, making sure you know how your body works, and making sure that you’re not overstressing your body. It’s very important. Resting as much as needed. It’s very important to be able to stay active. To ensure safety, I encourage them to check in regularly with their healthcare team just to make sure that they are having a tailored, a personalized plan, a personalized exercise plan with them. That could be involving physical therapists or their dietician to make sure that they have a unique plan. And by making physical activity as flexible as possible and adaptable to their part of their daily routine, patients can enjoy its benefits without feeling overwhelmed and alone.

Lisa Hatfield:

Thank you for that. And I really appreciate your comments. And I know Nicole and I have talked before, even small movements like moving your fingers and your toes or any movement is better than no movement, because sometimes we are just flat out too exhausted or in too much pain to do much more. So I appreciate you saying that for patients that you can do any little movement and that’s beneficial. So thank you. And, Joelys, what are the potential benefits of maintaining an active lifestyle during cancer treatment, particularly regarding treatment outcomes and overall well-being? 

Joelys Gonzalez:

Maintaining an active lifestyle during cancer treatment can have some profound effects on both treatment outcomes and the patient’s overall well-being. And when I mentioned that physically, physically staying active helps fight the treatment-related side effects, such as fatigue or muscle loss or weight changes. It could also support the cardiovascular health, which is very important since most cancer treatments can affect your heart. For instance, if you do such light exercise like walking or cycling, that can help you improve your blood circulation, helping you reduce the risk of blood clots or other complications from the treatment.

And this can also help you mentally. Maintaining that regular physical activity can significantly reduce your stress and improve your mood, especially when it comes to anxiety and depression, which are the most common among patients living with cancer. I’ve seen patients who incorporate daily movements into their routine, which has made them stronger than they have been before in the sense of control over their overall health, which boosts their confidence and their resilience during their cancer treatment.

Additionally, exercise has been shown to improve sleep, which is often disturbed during their treatment. And from a social work perspective, engaging in group activities or even walking with a friend or a family member can reduce your feelings of isolation, the feelings of being alone, and it can actually help you in building that support network that you need through your cancer journey, which is very very important. I really reiterate that having someone next to you not just to talk and just to make small exercise that can help you a lot during your cancer treatment, and the overall maintaining an active lifestyle helps patients manage their treatment better and contribute to a higher quality of life during and after cancer treatment.

Lisa Hatfield:

Nicole, how can healthcare providers effectively support and motivate cancer patients to stay active despite the challenges posed by their treatment? 

Nicole Normandin Rueda, LMSW:

Great question. So healthcare providers are often the first line of defense, right? And so they have this unique opportunity to really invest in getting to know their patients, which will then in turn…it will be the strategy that they use whenever it comes to tailoring the actual like exercise plan, for each patient. What that means really is that we get to know the patient’s needs, their abilities, knowing a little bit more about their diagnosis or their treatment, the side effects, or potential barriers. The more, the better you can tailor the actual personalized plan for each patient.

That also means not just the oncology team, but all the ancillary services. So your physical therapist, your exercise specialists, there are movement specialists. I mean, there’s a whole, a plethora of resources that can be brought in to help make sure that a patient…their treatment stage, their overall health, any secondary or other diagnoses that they may be managing as well as their just physical capabilities are all things that we want to make sure are very…we’re thinking about those at all times. We want to make sure whatever it is that we’re asking them to do is safe and achievable and aligned with their needs.

The encouragement from your oncology team and hearing that you know what you’re doing great, your small steps are baby steps, but they are steps and we are proud of that. Kind of that affirmation is huge. The next thing I would say would be setting the realistic goals and being on top of the potential barriers. So we all know how great it feels to check something off a box or cross something off a list, right? So we want to give patients that sense of pride and the sense that they are able to do whatever it is that we’re asking them to do, even if it’s very small and manageable.

Our goal is to help alleviate any potential future issues or current issues, secondary to their diagnosis. So if that means it’s fatigue, if it’s pain, if it’s the circulation, all of these things that we want to alleviate or inhibit from happening or getting worse, that’s important that patients know why we’re asking them to do something and setting the goals that are small enough and achievable that they can feel that sense of accomplishment is a big deal. Again, I mean, I can’t say this enough, I want every patient to know they are not alone. There are fantastic resources online to get, even if it’s stretching exercises.

I mean, there are things that are tailored to people with cancer that are absolutely incredible and free, that patients should be able to have the support that they need. Not just emotionally, but also physically, if that’s in-person or virtual, there are resources available that can help get whatever it is that patients need under their belt and so that they have the tools they need to go and accomplish whatever it is that they are being asked to accomplish. And that gives them that sense of pride that also makes it usually a success story, right? At least for that small piece of their treatment, they can say, I was able to do what it is that you asked me to do. That’s great.

And healthcare providers, like I said, are the first line of defense. They’re the ones that are checking in and asking the questions and so making sure that we’re always asking, but also listening to what it is that patients are saying. So if they’re saying, no, I didn’t really get around much today. Maybe we need to tailor what it is that your homework is going to be for the next week or whatever, to make sure that you are getting what it is that you need from us. 

Lisa Hatfield:

Okay. Thank you. And I appreciate that you talked about even celebrating the smaller, what seems to be smaller accomplishments. Like, sometimes if you can walk even five feet a day, you’re trying to walk again, even that, Yay, that’s exciting. Instead of thinking, well, before I used to be able to walk a half a mile or whatever. I think celebrating those small, those smaller steps are just as important. So thank you for bringing that up. It does give patients a sense of pride. You’re right.

Nicole Normandin Rueda, LMSW:

Absolutely.

Lisa Hatfield:

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

Breaking Barriers: Enhancing Veteran Support in Lung Cancer Care

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Breaking Barriers: Enhancing Veteran Support in Lung Cancer Care from Patient Empowerment Network on Vimeo.

Are there VA services to help veterans with the financial and mental stress of lung cancer? Expert Dr. Michael Kelley from Duke University School of Medicine discusses transportation and financial barriers to care, Community Outpatient Based Clinics, and support services for mental stress and anxiety.

[ACT]IVATION TIP

“…if you have a concern or a barrier, please talk to your care team. There are many resources that VA has that will try to address any challenge that you’re facing.”

Download Resource Guide  | Descargar guía de recursos

See More from [ACT]IVATED NSCLC Veterans

Related Resources:

Do Disparities Exist for Black and Latinx Veterans Facing Lung Cancer?

Do Disparities Exist for Black and Latinx Veterans Facing Lung Cancer?

 Can Veterans in Rural Areas Facing Lung Cancer Access Experts Via Telemedicine?

Can Veterans in Rural Areas Facing Lung Cancer Access Experts Via Telemedicine?

 Navigating Lung Cancer Clinical Trials: VA Support and Resources for Veterans

Navigating Lung Cancer Clinical Trials: VA Support and Resources for Veterans

Transcript:

Lisa Hatfield:

Given that transportation and financial coverage for travel are major barriers to lung cancer care for veterans, what strategies or interventions do you believe could be implemented to alleviate these challenges and reduce associated anxiety and stress for veterans?  And maybe a better way to ask that question is, are there any resources within the VA system to help veterans deal not only with the financial impact, but also with the emotional impact of a lung cancer diagnosis?

Dr. Michael Kelley: 

Yes, so there are certainly some resources. So some veterans are eligible for travel pay based on their distance and some other factors that I’m not an expert in, so I won’t try to enunciate those. But there can be other resources. Sometimes the American Cancer Society will have travel funds. There is a volunteer service at most VA hospitals, and sometimes they have funds. The way to access all those different options is generally through a patient navigator that might be a social worker at a particular VA hospital. Talk to your provider or the provider’s team about any barriers that you’re experiencing around transportation or other barriers, but transportation, and they can redirect you to the appropriate person on the team who would be able to discuss that with the veteran.

There is another approach that VA is taking for transportation is that the…that question implies that the veteran has to travel to the care and what VA is doing is bringing the care to the veteran. So right now we deliver most of our cancer care at medical centers and we are in the process of pushing that care into our clinics called CBOCs, Community Outpatient Based Clinics. So these services will make it much easier for more veterans to access closer to where they live which would reduce that transportation barrier.

So that’s one thing. And then you also asked about other types of barriers like anxiety or stress. Many of our practices now have embedded mental health. So that’s one resource which may be available for you. So again, talk to your provider team if you have stress or anxiety and you’d like to talk to someone about that. It should not be a stigma to have a discussion with someone about any of the thoughts that you’re having or reactions to the diagnosis. There are big decisions that have to be made.

It’s understandable that you might want to talk to someone, and so we do provide that service and these are professional mental health people, but there’s also a palliative care team at every medical center. The palliative care team is really good about going through and spending a lot of time talking with you about decisions that you would want to make in the situation about care decisions about how you might want to weigh those decisions. That can also be a resource for veterans. So my activation tip in this area is, if you have a concern or a barrier, please talk to your care team. There are many resources that VA has that will try to address any challenge that you’re facing.

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Lung Cancer Biomarker Disparities | How Precision Medicine and Research Can Help

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Lung Cancer Biomarker Disparities | How Precision Medicine and Research Can Help from Patient Empowerment Network on Vimeo.

How can lung cancer research and precision medicine help with biomarker disparities? Experts Dr. Joshua Sabari from NYU Langone and Dr. Eugene Manley from SCHEQ Foundation discuss testing factors that need improvement, patient groups that show disparities, and how clinical trial participation can move research forward.

[ACT]IVATION TIP

“…we really have to more universally test everyone equally to really have an impact on outcomes.”

Download Resource Guide  | Descargar guía de recursos

See More from [ACT]IVATED NSCLC Biomarkers

Related Resources:

Hope Unleashed: Advancing Therapies for Defiant Mutations in Lung Cancer

Hope Unleashed: Advancing Therapies for Defiant Mutations in Lung Cancer

 Maximizing Biomarker Equity: Leveraging Partnerships to Close Biomarker Disparities in Lung Cancer

Maximizing Biomarker Equity: Leveraging Partnerships to Close Biomarker Disparities in Lung Cancer

 How Can We Leverage Lung Cancer Biomarker Data to Address Health Disparities?

How Can We Leverage Lung Cancer Biomarker Data to Address Health Disparities

Transcript:

Lisa Hatifeld:

So, how can advancements in precision medicine be made more inclusive and equitable to ensure that biomarker-driven treatments benefit diverse populations equally? Second part is, what do you see as the most pressing research priorities in understanding and mitigating these biomarker disparities?

Dr. Joshua Sabari:

So I think first and foremost, testing is key. I mean, educating clinicians, healthcare providers, that every single patient, no matter what clinical characteristic that may be, age, sex, ethnicity, race needs to be tested broadly with the same mutational sort of profile or same biomarker profile. Having somebody in your office who never smoked, those patients generally will have broad panel and next generation sequencing. If you have an 85-year-old patient who is a former heavy smoker, the rate of mutational testing comes down.

So I think we need to remove that bias, that those clinical biases that we have, that we carry with us on a day-to-day basis. We need to test all patients with lung cancer regardless of any clinical characteristic. And what I tell my fellows, my residents, and what I talk to patients about is really all you need is lungs to develop lung cancer.

We need to remove that stigma and when we remove that stigma, we will be testing more broadly in our practices. There are also a lot of systemic biases, a lot of racism that exists, that prevents clinicians, I believe, from doing the best thing for their patients. And if you look at clinical trial enrollment in this country and that’s something that we do need to improve in order to develop better treatment options for our patients, particularly our patients of Latin American descent or Black Americans in the United States.

We need to enroll more patients of more diverse backgrounds onto our trials. Otherwise, we’re only limiting our treatments to specific or small percent of our patient population. So to be honest, I don’t know how well our EGFR inhibitors work in Black patients. I know it’s approved and we utilize it, but we don’t have nearly as much data prospectively treating novel therapies.

A lot of our trials have inclusion rates as low as 2 percent to 3 percent. And we know that our Black patient populations make up 13 percent to 15 percent of our practices. So I think more needs to be done to align our enrollment on trial, I think from institutional policies as well as governmental. So the FDA has really made a forceful statement here to pharmaceutical companies that if your data is not inclusive of a U.S. patient population, this will have ramifications for approvals in the future.

So a lot needs to be done in the sense of education both from the healthcare provider and…but also from the patient, and to really motivate patients to enroll in trials. And one positive that I’ve seen from the patient support groups, the advocacy groups, particularly EGFR Resisters Group, for example, we’ve seen a tremendous sort of push for patients to enroll on trials, again, to benefit themselves as an individual patient diagnosed with EGFR mutant lung cancer, but also to help those who come before or after them in their journey with lung cancer.

Lisa Hatfield:

And, Dr. Manley, do you have anything to add to that?

Dr. Eugene Manley:

I think he hit most of it, but I will say that you have to test everyone because there are people that have risk factors for lung cancer and those that don’t. And like, one of the leading risk factors is history of smoking, but there’s a significant population of specifically Asian females that don’t smoke. Even recently, that have been showing that Black women that don’t smoke also have increased rates of lung cancer. And these are, we don’t know why.

So we still need to be able to test all these patients across all the indications and maybe cross-reference with stress income, socioeconomic status and really try to determine maybe if there are certain specific drivers and what we didn’t talk about. We know that there are some epigenetic changes that may occur due to stress. We also know that there are some changes in tumor mutational burden, some stuff out of MSK. And I think there is some stuff that even shows differences in the immunomarker frequency and response in Black populations. So, we really have to more universally test everyone equally to really have an impact on outcomes.

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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. 

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What Are Common Issues That CAR T-Cell Therapy Care Partners Face?

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What Are Common Issues That CAR T-Cell Therapy Care Partners Face? from Patient Empowerment Network on Vimeo.

CAR T-cell therapy is a long process, but what can care partners expect? Expert Sarah Meissner reviews common issues that care partners face, and Adrienne, a care partner, shares the difficulties that she encountered as well as the lessons she learned that might help ease difficulties for other care partners.

Sarah Meissner, RN, BSN, BMTCN, is a Blood and Marrow Transplant and Related Donor Search Coordinator at the Colorado Blood Cancer Institute. Adrienne is a Care Partner to her husband, who underwent CAR T-cell therapy.

See More from The Care Partner Toolkit: CAR T-Cell Therapy

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How Can a Social Worker Help CAR T-Cell Therapy Care Partners?

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Are You a CAR T-Cell Therapy Care Partner? Why You Should Ask for Help

Transcript:

Katherine:

Sarah, I wanted to ask you, “What are some of the common issues that care partners face?”  

Sarah Meissner:

I think this is a very stressful time here. Your loved one is not feeling well, and there are these potential side effects. And so, that can cause a lot of stress on caregivers that they’re kind of the one in charge. They’re looking for these things. Of course, they want the best for their loved one. So, it can be a very stressful time. 

Frequent appointments. Here in Denver, we have terrible traffic. So, if people live far away from the center, it’s fighting rush hour every morning to get here. That can add a lot of stress as well as if you have other things going on at home, too, other family members who need you, it’s a lot to take on. 

Katherine:

Adrienne, what experiences or issues did you have in taking care of your husband? 

Adrienne:

Well, we do have a child. She was 2 at the time. So, I did have to plan childcare pretty much every day for two weeks, which I am fortunate to have lots of friends and family here in Denver, so I was able to get that covered.  

Katherine:

It’s a lot of responsibility for you. 

It’s a higher level of responsibility, I guess, right, because you’re taking care of your child and now, your husband is very sick. And you want to make sure that everyone’s needs are being met. 

Adrienne:

Right. And driving, like Sarah had said, the driving was an issue, because it was so far for us. There are potholes and with the little bit of change in mood and not feeling well, it was hard for him to be in the car so long and not getting to drive himself. So, I think that was not the best experience. I think if we did it next time, we would try and just be closer to the hospital.  

And for me to take care of everybody else, I did make sure that I would try and work out and not being able to leave the house with him. So I work out in the living room just to get some of my own stress out, or I would have somebody come and watch him if I really wanted to go to a class to work out. And like I said before, we were very lucky to have his parents that live in town and then my mother and my sister. So, that’s something that is important to have a network of people to help you because I don’t know, depending on what you have on your plate. I think it would be almost impossible to do it all by yourself, especially if you have to work or you have children to take care of.  

So, that’s some advice or what I’ve learned from this experience. 

Katherine:

Yeah. Was it hard for you to take time for yourself? Did you feel guilty? I know a lot of people think “Oh, I need to focus all of my attention on my child or my sick spouse.” It can be difficult to say to yourself, “I really need to take half an hour or an hour,” and then, find somebody to help you out with the caregiving.  

Adrienne:

Yes. I did find it difficult. And you just know that there is going to be an end in sight. You think, ”If I can just last through the month so I did sacrifice.” But at the same time, my main concern was that my husband would get through this. So, I did feel a little guilty. And I would get a little bit of time.  

But me, personally, I just wanted to push through that month and especially that first two weeks. And then, I knew that I would be back to doing the things I love. 

Katherine:

Yes. Rather than looking too far forward, I guess it’s trying to get through every day each day. Yeah. I’m going to switch back to ask Sarah a question. Sarah, why is it so important that care partners communicate any issues with their healthcare team?  

Sarah Meissner:

So, those side effects that we talked about, there are drugs that we can use to treat them, but they work best when we can get those drugs in as soon as possible. So, if we’re starting to see signs of cytokine release syndrome, we want to get that tocilizumab (Actemra) infused in the patient within two hours. 

So, it’s really important that we know that these side effects are popping up so that we can treat it appropriately. 

Why Should People With Prostate Cancer Share Emotional Issues With Their Team?

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Why Should People With Prostate Cancer Share Emotional Issues With Their Team? from Patient Empowerment Network on Vimeo.

Prostate cancer expert Dr. Tanya Dorff explains common emotional issues that arise during treatment and monitoring, and why it’s important for patients to speak up about any feelings that may be causing distress.

Dr. Tanya Dorff is Associate Professor in the Department of Medical Oncology & Therapeutics Research at City of Hope. Learn more about Dr. Dorff.
 
 

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 Strategies for Treating Advanced Prostate Cancer Symptoms

 What Is Personalized Prostate Cancer Medicine?

Transcript:

Katherine:

Beyond treatment, another large part of thriving with prostate cancer is dealing with the emotions that come along with the diagnosis, like fear and anxiety. Whether it’s the stress of being in active surveillance or worrying about progression, many patients need help coping emotionally. Why do you feel it’s so important for patients to share these emotions with their doctor or their healthcare team? 

Dr. Dorff:

I think it’s a conversation that’s not held enough between patients and their physicians, and if we don’t remember to ask our patients, we will just focus on the medical because that’s our main wheelhouse, that’s what we’re best at. So, if a patient brings forth that they’re having some emotions related to the cancer, it is helpful to us in remembering – we ought to do everything 100 percent all of the time, but let’s face it, we’re physicians with time pressures and certain areas of comfort and expertise. So, if a patient brings it up, that is super helpful because then we know someone’s needing assistance, which probably every patient is, whether they tell us or not, but that triggers us to then offer appropriate referrals. 

And also, it tells us they’re open to it. If we have to ask every patient, “Are you having any emotional distress?”, even if someone answers yes and then we make a referral, they may not have actually been ready for it or open to it. So, having the patient come forth and raise that, I think, is really helpful and important. 

How Can Palliative Care Help People With Prostate Cancer?

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How Can Palliative Care Help People With Prostate Cancer? from Patient Empowerment Network on Vimeo.

Some prostate cancer patients may receive palliative care, but how is it used exactly? Expert Dr. Tanya Dorff explains research studies about palliative care and how it can be used to improve quality of life for patients.

Dr. Tanya Dorff is Associate Professor in the Department of Medical Oncology & Therapeutics Research at City of Hope. Learn more about Dr. Dorff.
 

Related Resources:

Managing the Side Effects of Advanced Prostate Cancer Treatment

 Strategies for Treating Advanced Prostate Cancer Symptoms

 What Is Personalized Prostate Cancer Medicine?

Transcript:

Katherine:

What is palliative care, and how can it help men with prostate cancer? 

Dr. Dorff:

Palliative care is something that we think about more towards the end of life, where we’re focusing on cancer symptoms more than treating cancer. However, some studies have shown – very prominent studies – that early palliative care in some malignancies is associated actually with better survival, meaning that paying attention to the patient’s symptoms is actually a really important part of keeping them well and keeping them alive as we treat the cancer. 

So, more and more, we’re starting to integrate palliative care earlier in the disease.  

I think that can sometimes signal a little alarm for patients – “Oh, I’m being referred to palliative care, that means my doctor doesn’t really think they can treat my cancer anymore” – and it’s gonna take some education to really help people transform their thinking about palliative care as a strategy that’s not for the end, but something that really should be part of our treatment all along. 

So, our palliative care team, or what we call supportive medicine at City of Hope, uses treatments to manage pain. They have a broader spectrum, they’re more focused on all the different modalities to treat pain, so an oncologist or urologist can treat pain, but when we refer to palliative or supportive medicine, you get just that extra expertise, especially if people are having a lot of side effects from pain medicines, but our supportive medicine doctors aren’t only pain management doctors. 

They help with other symptoms, like nausea or constipation, to some extent urinary symptoms for my prostate cancer patients, although we rely heavily on urology for that, and also just the existential, or spiritual, or emotional components. 

Our supportive medicine team typically includes not only an MD, an advanced practice provider like an NP, but also someone from psychology, someone from social work, because dealing with cancer is really stressful and challenging, and in an ideal world, palliative care is not only taking care of the symptoms of the cancer that are physical, but also helping the whole being, the whole family unit that’s going through this experience have less emotional distress as well. 

8 Tips For Coping With Christmas When You Have Cancer

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Christmas is traditionally a time of celebration, feasting on festive foods and drinks and gathering with family and friends. However, if you have cancer, this may also be a time of overwhelming emotions, exhaustion, or physical discomfort. Add in concerns about the current coronavirus pandemic, and you’ve got a recipe for a stressful holiday.  “As our second COVID Christmas is fast approaching and with our world so desperately wanting to return to normal comes a lot of holiday festivities, says Marissa Holzer, who has been living with metastatic breast cancer since 2014.  “Some of these parties and gatherings may bring unnecessary stress and anxiety, even during normal times, or they may make an immunocompromised individual feel unsafe.”

Let’s take a look at some ways we might reduce the stress of the festive season.

1. Plan Ahead

Consider what aspects of Christmas may be difficult for you, and plan ahead of time for what will help you cope.  You may find it useful to write a list. For example, keep snacks, hand sanitizer, and masks in your bag when traveling away from home.

2. Listen to Holiday Music

This tip comes from two-time breast cancer survivor, Terri Coutee, who finds listening to holiday music lifts her spirits. “It can be in the form of quiet instrumental when I am feeling peaceful and reading or resting,” she explains. “When I am cooking or decorating I might put on a favorite artist with a little jazz or swing to it and dance a bit while preparing for the holidays.

3. Ask for Help

The run-up to Christmas is a hectic time filled with food shopping, gift wrapping, decorating, and extra household jobs. Now is the time to call on the assistance of those who offered to help when you were first diagnosed.  Reach out to them and ask for practical help with Christmas chores. Also, do as much of your grocery and gift shopping online as possible.

4. Schedule Rest Time

Don’t expect to be able to do what you could do before cancer. Know your limits and don’t expect too much of yourself. You may find it helpful to think of your energy reserves as your ‘energy bank’. Whenever you do an activity you make a withdrawal. And when you rest you make a deposit. It’s important to balance withdrawals with deposits. If you keep doing too much whenever you feel like you have energy, you’ll run out completely and not have any reserves left for the things that are important.

Cathy Leman, who works with post-treatment survivors of hormone-positive breast cancer, says that “one thing that helps my clients cope during the holidays is being deliberate in creating space for themselves; ideally before they start their day. As little as ten minutes devoted to setting an intention, doing deep breathing or journaling can help you feel grounded and balanced.”

5. Adjust Your Expectations

Arising out of the previous tip, Jennifer Douglas, who was diagnosed with DCIS, suggests keeping expectations flexible. “Since our energy fluctuates so much during and after treatment it can be really difficult to know how much to put on one day,” she explains. “I found that giving myself grace to do a lot, or a little, with regards to holiday preparations, enabled me to feel more at peace. Some days I felt good and could do a lot, and other days I didn’t have the energy. Either way, I listened to my body and did what I could. Having flexible expectations of myself helped me get through the busy season while preserving my precious energy.”

6. Set Firm Boundaries

When you visit with friends and family the subject of your diagnosis and treatment may come up at some point. It’s perfectly acceptable to tell someone that you don’t want to talk about cancer if you don’t. It can be helpful to plan ahead of time how you will respond to these questions.

Rod Ritchie who was diagnosed with breast cancer in 2014 (followed in 2016 with a diagnosis of prostate cancer), steers clear of cancer conversations as much as he can. “Because I don’t want to turn a Christmas party into a pity party, I don’t mention the ‘C word’ unless it comes up for discussion,” he says. “ It doesn’t hurt me to have a day off the topic as well!”

7. Feel What You Feel

Christmas is a time of high expectations and the reality of our experience doesn’t always match these expectations. Tell yourself that’s ok. Let yourself feel whatever it is that you are feeling. Even if how you feel doesn’t correspond to what others expect, your feelings are still real and valid.

Breast cancer survivor, Nancy Stordahl, still grieves the death of her mother from breast cancer and finds Christmas can be a challenging time. “There is nothing wrong with honoring your grief by feeling it,” she says. “No one should feel guilty about grieving during the holidays or during any time of year, for that matter.”

Prostate cancer survivor, Gogs Gagnon, who lost his sister to ovarian cancer says he finds “comfort in sharing stories at family gatherings. Reliving my favorite memories and allowing myself to cry without fear of judgment is incredibly healing and therapeutic.”

8. Prioritize What is Best For You

You get to decide the kind of Christmas you want. It’s ok to say no to certain things, such as not visiting friends or family. Discuss your needs with friends and family, but remember that it’s ok to prioritize what’s best for you, even if others don’t seem to understand. In the words of Marissa, “My motto this season:  If it doesn’t bring peace, joy and love to your heart it is absolutely okay to say no.”

My wish for you this holiday season is that it will be a time filled with an abundance of peace, joy and love, and that the new year will bring good health and happiness to us all.

Merry Christmas.

How Does Stress Correlate to Our Physical Ailments?

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How Does Stress Correlate to Our Physical Ailments? from Patient Empowerment Network on Vimeo.

What are the effects of stress, anxiety, and depression on physical health? Dr. Nicole Rochester and Dr. Broderick Rodell discuss how personal experiences and environmental conditions can impact patient health and a prostate cancer study that examined prostate cancer cells in Black patients.

See More From Rx for Community Wellness

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Why Is It Important to Address Whole Person Care?

Transcript:

Dr. Nicole Rochester:

We know that stress and anxiety and depression and all of those things impact your physical health, and as I said earlier, I think traditionally, there’s been this ridiculous disconnection between our minds and our bodies, and we know a lot more now, in fact, there’s a study, there are many studies, but there’s a study specifically looking at prostate cancer by Dr. Burnham, a researcher. And what they found in this study is that they looked at prostate cancer cells from African American patients and white patients, and when they treated these cells with stress hormones, they saw that the Black patient’s prostate cells would begin to up-regulate the genes and the proteins that are known to make that cancer more resistant to therapy. And so it starts to look at the role of stress and stress hormones, and we know that there’s increased stress among minority communities, among… sorry, urban communities, those who are otherwise disenfranchised, so from your perspective, can you just share a little bit about the connection between stress and physical illness and maybe how you approach that in the work that you do?

Dr. Broderick Rodell:

So, these various patterns we don’t operate, we have a framework that we all operate from, and it’s beneath the surface of our conscious awareness. And so our subconscious mind operating system is there, but that operating system comes from our conditioning, we’re conditioned by our families, by our local communities, our societies. And so, the various structures that are in place are facilitating our conditioning and from our conditioning we…that our conditioning creates our perspective, the framework that we operate from, that’s determine…that’s going to determine how we relate to our experiences. And how we relate to our experiences can be gracefully, or it can be stressfully, just to put it in those two different terms, and so that stress that is created based on how we’re relating to our experiences has a historical perspective, and so we have to address those issues. We can address our familial issues that has a historical relationship and say that maybe the relationship that my mother and father or grandparents had towards their own health is not necessarily to be the most optimal way to do that. And they may have had those ways of relating to their experience, based on their conditioning, based on the suffering that they’ve experienced, environmental conditions that were conducive for that mental framework that they’re operating from, and so we have to work towards transforming that, and again, the place where we have the most power in ourselves, “How can I change myself?”

I have to advocate for myself, and so how do we increase that by increasing our education and learning about ourselves and learning about our mental models that we’re using to relate to our experiences and transforming those mental models to reduce unnecessary stress and tension? Because when we’re under unnecessary stress, we have our epinephrine cortisol, these hormones that are increasing in our body, that’s going to suppress our immune system. It’s going to cause damage in our blood vessels, organs are not going to function optimally, and I think that we’re going to keep finding out more and more about this. I was interested, as you hear that about the prostate, prostate cells in African Americans, why would that be the case? You’ve got generations of hyper-vigilance for historical reasons, cultural reasons, or social reasons. Then, of course, that’s going to get passed on from generation to generation, a sense of hyper-vigilance, a sense excessive amount of stress hormones was floating around in the bloodstream, and it’s going to have a significant influence on how the body is capable of dealing with various illnesses – be it cancer, be it cardiovascular disease, or any other disease that’s associated with, or probably all disease that’s associated with stress these days.

In particular, with cancer it’s very interesting, that relationship and why are these cells dividing and rapidly producing in the way that they’re doing, and how is that related to stress? I don’t think it’s…no, simple relationship there. You can’t just say, “Stress causes cancer.” I’m not saying that at all. But there is a correlation, there is a relationship, and if the thing that we can tackle, we can’t change our genes, but what we can do is change our relationship to our experience. Transform that to reduce the amount of stress or suffering and maximize well-being, and that’s the kind of work that I try to focus my attention on and what comes out of that is, “Okay, I need to work on how I relate to my experience,’ but also “How do I create favorable conditions in my internal system, in my body through the food, in through the exercise that I do, through the literature and I expose myself to, etcetera?”

How Stress Can Play a Role at the Time of a Cancer Diagnosis

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How Stress Can Play a Role at the Time of a Cancer Diagnosis from Patient Empowerment Network on Vimeo.

MPN Network Managers Jeff and Summer share how they’ve overcome and continue to overcome the stresses that follow a cancer diagnosis. 

Although, surprised at the time of her diagnosis Summer remained positive. As a care partner at the time of diagnosis, Jeff was fearful because he knew very little about myelofibrosis. To counteract this stress, he armored hisself with knowledge from various resources. Both Jeff and Summer use their hobbies as an outlet whether it’s nature photography or teaching improv classes to further relieve stress. 

Want to connect with Jeff and Summer? Email them at question@powerfulpatient.org or text EMPOWER to (833)213-6657. 

How Does Stress Correlate With Your Prostate Cancer Diagnosis?

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How Does Stress Correlate With Your Prostate Cancer Diagnosis? from Patient Empowerment Network on Vimeo. 

How do stress and cortisol levels contribute to prostate cancer incidence and aggressiveness in Black men? Dr. Leanne Burnham explains her research studies where they looked specifically at the role of stress in prostate cancer, tumor aggressiveness, and Black men — and also shares research about cortisol levels in African American children.

See More From the Prostate Cancer TelemEDucation Empowerment Resource Center

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Transcript:

Dr. Leanne Burnham

I have a few publications that look at the role of stress and prostate cancer, tumor aggressiveness, and Black men. And so, I looked at Black men specifically, because I have wondered if Black men who maybe were exposed to more stressors in their lifetime if that had any correlation to Black men getting prostate cancer earlier in their life and getting a more aggressive disease. And so, there were very realistic ways that we were able to look at that in the lab and then also in collaboration with public health colleagues that I have. Because what we know there are studies that show that African American children experience more stress, and their cortisol levels in their bodies are effective much earlier than any other race, and their studies that show the distress begins in the daycare setting based on discrimination that they may have from the adults that are taking care of them in that setting. And so, imagine cumulatively how that looks, and so we have ways that there are validated scales to assess levels of stressors that people have been exposed to. So that could be…what are your finances looking like? Have you been affected by incarceration yourself or anyone in your family? Have you experienced the death of a loved one? Has your home been broken into recently?

There are all kinds of, there are hundreds and hundreds of questions, and we can get to the root of how much stress has somebody been exposed to. And we know that unfortunately, African Americans in this country are exposed to more of these stressors than other demographics, and so what we did was look at the elevated stress, we could look at the cellular level and see, now if we’re growing prostate cancer cells, so that’s what I did. I was growing cancer cells in the lab that were from Black patients and white patients, and I would expose them to stress hormones in the flask, or maybe you like to think of it as kind of like a petri dish, but in the flask where the prostate cancer cells were growing. I would treat them with stress hormones, and then I would look and see do the cells grow differently, do they express genes and proteins differently based on race? And what I found very surprisingly, disturbingly, whichever adverb you want to use, that the African American prostate cancer cells, when they were exposed to stress hormones, the tumor cells became more aggressive, and they up-regulated genes that we know prime a patient to resist therapy.

So, the genes that were up-regulated in these prostate cancer cells are genes that we know, let’s say if a patient were to get chemotherapy, that patient would be more likely to fail that chemotherapy early, which is a terminology we call chemo resistance. And so those are studies right now that have just sort of, they’re newer to the forefront looking at stress and tumor aggressiveness. But there are studies going on nationwide right now involving thousands of African American men participants, where we are looking at the role of stress and what that does in terms of prostate cancer, aggressiveness in Black men specifically, and seeing what we can do to address it. But first we have to acknowledge that the problem is even there, a lot of people don’t think the problem is there, but we are scientists, we think the problem is there. So, we have to get the data to show the public that the problem is there, and then we need to really address the systemic racism that leads to this elevated and chronic stress that other demographics don’t have to deal with, because it’s literally leading to increased disease and increased health disparities. And if that’s something that we can change at some very basic levels, then that will improve health overall.

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.

Am I Meditating Correctly? Getting the Most Out of Mindfulness

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Am I Meditating Correctly? Getting the Most Out of Mindfulness from Patient Empowerment Network on Vimeo. 

Dr. Jennifer Huberty explains how mindfulness, such as meditation and yoga, can have an impact on your overall health and well-being.

Dr. Jennifer Huberty is an Associate Professor at Arizona State University. She focuses her research on the use of complementary approaches to manage symptoms and improve quality of life for patients living with myeloproliferative neoplasms. More about Dr. Huberty here: chs.asu.edu/jennifer-huberty.

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Transcript:

Dr. Huberty:    

If someone is wondering if they’re meditating correctly or not, or if two minutes of meditation is enough, if you turn to the science and the literature in terms of how much meditation you need, nobody knows. For every study that says five minutes, there’s a study that says 20 minutes, there’s a study that says an hour. I think it’s really important that the individual gets in touch with “what works for me.”

I think the most important thing is that if you’re sitting for meditation and you choose to sit for meditation, just simply listening to your breath – when you realize you’re off, thinking about what I’m making for dinner tonight or what’s gonna happen over the Thanksgiving holidays with my family, then you just say, “Oh, thinking,” and then you come back to, “Okay, where’s my breath? I’m breathing in, I’m breathing out. I’m breathing in, I’m breathing out.” So, it’s just being able to do that and not say, “Oh my God, I’m not doing this right, this isn’t working for me.” There is none of that. It’s supposed to be nonjudgment in the present moment.

“Oh, the present moment – I’m thinking. Now, in the present moment, I’m gonna go back to my breath.” So, it’s really understanding that, and I think it’s also important for people to understand that you don’t have to be seated in meditation. You can be standing in meditation, you can be laying in meditation, you can be kneeling in meditation. I think with MPN patients, not all sitting positions recommended in meditation might be comfortable. If you need a pillow under your tail, put a pillow under your tail. There’s no rulebook to say how you need to sit in meditation. I think that’s important.

And, there’s also other ways to be mindful. Coloring can be mindful. Walking and exploring the leaves and the landscape can be mindful. So, I think in our studies, yes, we’re encouraging meditation, using an app, but that’s to give people structure, education, and a background about what is meditation, but then, there is room for expansion to other things.

It’s pretty much the same thing with yoga. You’re quieting your mind; you’re focusing on your breath. There’s no rulebook that says you have to move a certain pace. You’re supposed to move with your breath, so if your breath is slow, your pace is slow. The other thing is that there is no right way to do a pose.

So, again, patients wanna know, “Am I doing this pose right?” Well, I can tell you that if you feel good in the pose, nothing is hurting you, your shoulder doesn’t feel like it’s doing something it shouldn’t, your head doesn’t feel like it’s in the wrong direction, and you’re watching the video and looking at what the instructor’s doing, you’re probably doing the pose just fine.

I think we get stuck on “Is this correct or not?” What we wanna be careful of is safety. You don’t wanna be standing on your head and wondering if you’re doing it correctly. You wanna have a basis, and that’s what we do in our programming, is it’s very basic, very foundational poses that you can learn the practice of meditating in the poses.