Tag Archive for: Quality of Life

Lifestyle Interventions and Cancer Care Outcomes Research

 

What’s important to know about lifestyle interventions and cancer care outcomes? Expert Dr. Jennifer Ligibel from Harvard Medical School discusses lifestyle interventions of physical activity and weight loss on cancer outcomes, controversy about body weight, and exercise levels during cancer treatment that show cancer outcome benefits. 

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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 Is Supportive Care Therapy in Cancer Care?

What Is Supportive Care Therapy in Cancer Care?

Transcript:

Lisa Hatfield:

How can lifestyle changes impact cancer care outcomes? The answer may be more crucial than you think. In this Patient Empowerment Network RESTORE program, we’ll connect with a respected expert on the ground floor of this research. 

Dr. Ligibel, your research highlights the impact of physical activity and body weight on cancer risk and outcomes. Can you explain how exercise and weight loss interventions influence biomarkers associated with cancer risk and outcomes?

Dr. Jennifer Ligibel:

Absolutely. So this research is, I think, both really, really exciting and empowering for patients, because exercise and nutritional change are things that people can do themselves that don’t involve a prescription. But they can also be kind of confusing and leave people sometimes feeling like they’re not sure what the right thing to be doing is to support their long-term cancer outcomes. The truth is we do know that there are patterns that we see in society.

Like if you ask a lot of cancer patients, how much do you exercise and you track their weight. We see that people who exercise tend to have better cancer outcomes. So they tend to have a lower risk of cancer returning and a higher likelihood of surviving their cancer. For common cancers like breast cancer, colon cancer, prostate cancer, not as much evidence in some other cancers. We also know that people who keep their weight in a healthy range are less likely to develop cancer in the first place, and they’re less likely in some cancers, mostly the ones we talked about, breast, prostate, and colon to have their cancer return or die from cancer.

But what we don’t know is what aspect of lifestyle really drives these relationships, because the thing that’s complicated is that somebody who exercises more tends to have a little bit of a different dietary pattern than somebody who doesn’t. It’s not true for every single person. I’ve known marathon runners that live on Twinkies. But for the most part, people that exercise more are thinking more about their diets. They tend to weigh a little bit less, they smoke less. They may be going to do their screening mammograms and colonoscopies more often.

So it can be really tricky when you look at a large group of people and you just ask them what they’re doing and following them to make direct cause and effect relationships between one particular thing, like exercise or eating a particular food and their cancer outcomes. And this is one reason why my group at Dana-Farber, the research that we do really seeks to put people into interventions where we take a group of people that maybe aren’t exercising or they have a body weight that’s kind of above the ideal, and we help them to lose weight or to exercise more.

And we compare two groups of people that were the same at the beginning. One group took part in our program, the other didn’t. And then we’re able to kind of look more directly at whether these types of things affect their cancer outcomes, kind of what happens after their cancer is diagnosed. So we have some ongoing studies that are testing the effect of weight loss programs on cancer recurrence and breast cancer. We have some smaller studies looking at exercise and how that affects cancer. But the truth is we don’t a hundred percent know yet.

If we take a patient who’s not exercising or has weight in a certain range and we change that, is that going to have a direct effect on their cancer? We hope so, but that’s still something that we’re really studying. At this point, what we do know is that healthy lifestyle seems to be linked to lower cancer risk and better outcomes for people who’ve had cancer.

And I think the other thing that is really promising and hopeful is that there’s evidence that shows that even people that maybe didn’t have the healthiest lifestyle before being diagnosed with cancer, if they make some changes, they may have better long-term outcomes. So it kind of shows us that it’s not too late after cancer is diagnosed, but I think we’re still trying to really learn what are the particular factors for an individual person that are going to be most impactful to improve their cancer outcomes?

Lisa Hatfield:

Okay. Thank you. That gives cancer patients a lot of hope too, to know that going forward I can make some changes. In your randomized trials, how have you measured the effects of exercise and weight loss on cardio, respiratory fitness, and body composition in cancer patients? And what have been the key findings in their implications for patient care?

Dr. Jennifer Ligibel:

Absolutely. So we’ve done a lot of work in taking people who’ve been diagnosed with cancer and perhaps aren’t exercising regularly, or their diet is not as healthy as it could be, or their body weight is higher than the kind of there’s…a lot of controversy about the best body weight. But we, we kind of look at different levels of overweight and obesity and how they relate to health outcomes.

So we’ve looked at many different studies where we take people who might not have the healthiest lifestyle, and then we help them exercise more. We work, have them work with a coach or take part in a structured program. The first studies that we did really looked at, just how do you get people to make these changes when they’re going through cancer treatment or afterwards? Because there are a lot of extra barriers. We all know it’s not so easy to eat well or to lose weight or to exercise regularly at any point, but then you add cancer treatment to that, and it becomes more complicated.

So our first studies really just looked at how do you get people to do it? Is it safe? And we found indeed it was safe and that we could get large groups of people to engage in these programs. Not just people we enrolled at Dana-Farber, but people from all over the country. And that was really good to see that we could scale things that way.

Then we were interested in looking at some of the biomarkers you talked about, like what happens when somebody who hasn’t been exercising starts to exercise, or somebody whose body mass index is 27 or 30 or kind of in the higher levels showing that they have excess adiposity. What if they lose weight? What changes? So we’ve been able to show that people who exercise or lose weight have favorable changes in their metabolic hormones, favorable in changes in inflammation, which we know is something that relates to cancer risk.

And most recently, we’ve been able to show that exercise in particular has an effect on the immune system, both throughout the whole body and at the level where breast tumors form. So that’s been really interesting and helps to perhaps show us how is it that exercise could lower someone’s risk of cancer and really seeing how it activates the immune system. We’re also doing studies that then look at really big long-term outcomes, like whose cancer comes back and whose doesn’t. Those studies are really, really complicated to do. They involve enrolling thousands of patients, and they take 10 years to get the results.

And so, we’re still waiting for some of the outcomes of those studies. But the work that we’ve done so far shows that it’s safe for people to exercise and lose weight throughout their whole cancer journey, that it is also very scalable, not just to small groups of patients, but we can do this more broadly across thousands of patients. We’ve shown that when you make these types of changes, your metabolism improves, your risk of cardiovascular disease potentially decreases, then people feel better. We’ve done a lot of work with quality of life and fatigue and other side effects, and showing that when you make these types of changes the side effects of cancer therapy are often lessened.

Lisa Hatfield:

Okay, thank you. One quick follow-up question also as a patient. If you were telling me about exercise and how it might reduce inflammation, is that cardio or strength training or a combination of both? Do you have a recommendation on that for patients?

Dr. Jennifer Ligibel:

So, that is a great question and something that has been studied looking at different kinds of exercise. So there’s definitely value to both cardiovascular exercise, things like walking and running or swimming and to strength training. And that can be done using body weight. Things like squats and lunges, using weights, using machines. Strength training exercise is really important for maintaining muscle, and we know that a lot of cancer patients lose muscle, and that losing muscle is associated with losing function. So, doing strength training exercise is so important for maintaining your muscles.

A lot of the studies that have looked at how exercise relates to long-term cancer outcomes have primarily studied aerobic exercise, and that literature is really strong, that as little as walking three times a week can have benefits, long-term benefits in terms of cardiorespiratory health and perhaps even cancer-related outcomes. There’s an important place for both cardiovascular and aerobic exercise.

here’s a group, the American College of Sports Medicine, who tried to bring together all of the research from intervention studies. So studies where they took people and they put them on exercise programs to look at, well, what changes when you’re on an exercise program? And they looked at all these studies and tried to develop what’s called a fit prescription. So frequency, intensity, time, and type of exercise.

So to be able to tell people, “All right, what you need to do is 30 minutes of cardio three times a week, and that’s what’s going to help you feel better from a fatigue standpoint.” And so, they’ve worked out a couple of prescriptions for things like anxiety and fatigue that really are helpful in thinking about, well, how much do you really need to do to start to see a benefit? And in most of these studies, it was at least 90 minutes of aerobic exercise and a couple of strength training each week were kind of the minimal level of exercise where people really started to have benefit.

Lisa Hatfield:

Okay. That’s really helpful. Thank you.

Dr. Jennifer Ligibel:

Sure.

Lisa Hatfield:

Dr. Libel, how do you integrate quality of life assessments into your research on energy balance factors? And what role do these assessments play in evaluating the effectiveness of lifestyle interventions for cancer patients and survivors?

Dr. Jennifer Ligibel:

This is really important, because supportive care is designed to help people feel better. And if we are making people more active or changing their lifestyle in a way that doesn’t help them feel better, then we’re really not satisfying kind of the primary goal of supportive care interventions. And so, this is why we really make sure that we measure what are called patient-reported outcomes. So how does the patient feel as an integral part of the work that we do.

And so, most of the time these types of measurements are done through questionnaires where you ask people, how do you feel? How much does this side effect affect you? How much does fatigue impact your daily life? What about nerve-induced, what’s called chemotherapy-induced peripheral neuropathy? How much does that affect you? How much does that stop you from doing the things that you want to do? So we generally evaluate like, is the symptom present? And if it is, how much does it impact your ability to do the things you want to do? And I think that, when we see that people feel better that these side effects lessen as a result of interventions, that’s really what leads us to want to take things from being part of a research study to part of the standard care that we provide to our patients.

Lisa Hatfield:

That’s great. Thank you. You heard it here from the expert. Thanks for joining this RESTORE program. I’m your host, Lisa Hatfield. 

What Supportive Care Treatments Are Available to Patients?

 

What options do cancer patients have for supportive care treatments? Expert Dr. Jennifer Ligibel from Harvard Medical School discusses side effect management, exercise, nutrition, and integrative therapy for patient care. 

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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 Is Supportive Care Therapy in Cancer Care?

What Is Supportive Care Therapy in Cancer Care?

Transcript:

Lisa Hatfield:

Managing the side effects of cancer treatment can be just as crucial as the treatment itself. But how does supportive care fit into the equation? I’m getting some clear answers from a respected expert in this Patient Empowerment Network RESTORE program. 

Dr. Ligibel, could you speak to some available supportive care options, and how can patients work with their healthcare team to effectively incorporate supportive care into their treatment plans to manage side effects?

Dr. Jennifer Ligibel:

Absolutely. And this is such an important topic. I think sometimes people want to downplay the symptoms that they’re experiencing. And so, they don’t tell their healthcare team when they’re experiencing nausea or fatigue, or they’re just feeling really down because of the effects of their cancer treatment. And these are all areas that supportive care treatment modalities can really help people feel better during their cancer treatment if they talk to their oncology teams about the symptoms they’re experiencing, because there are so many supportive care options that are available now.

These options really run the gamut. So there are supportive care medications. We know that there are really effective medicines for nausea, for example, and sometimes people need different nausea medicines than what was initially prescribed. So really important if you’re experiencing nausea despite the medicines that you’re taking to talk to your care team about that.

here are medications additionally for pain when people develop nerve damage from treatment. Those are other things that there are supportive care medicines that can be really important and really help people feel better. Then there are other types of modalities that people may seek out themselves, things like exercise or changes in nutrition. I always recommend that people talk to their healthcare teams before incorporating any kind of supportive care into their treatment protocol, especially if they’re currently receiving treatment for cancer.

But there are many different ways that people can help themselves feel better by being more active and by making sure that they’re consuming enough calories, making sure that they have enough protein in their diets to really support themselves through treatment. Then there are supportive care modalities that are directed toward particular symptoms. And there are what are often called integrative therapies.

And integrative therapy is a type of treatment modality that really takes the best of both Western medicine and Eastern medicine to try to help support people during their cancer treatment. Integrative modalities often include things like yoga and acupuncture and massage, and there’s a growing literature showing that these types of interventions can also really help support patients during cancer treatment.

There’s also meditation and mindfulness, because we know that cancer and cancer treatment has such an effect, not just physically on people, but also emotionally, and really managing the emotional effects of cancer treatment is incredibly important to feeling better. And so, this is an area where there’s a lot of active research, so many more ways that we know now can help people feel better during treatment than even five years ago. And so, it’s important to talk to your care team about the side effects that you’re experiencing and really to be open to different types of supportive care options to help you feel better.

Lisa Hatfield:

Okay. Thank you. Dr. Ligibel, what factors should patients consider when discussing supportive care options with their providers? And how can these therapies help enhance their overall treatment experience?

Dr. Jennifer Ligibel: 

Absolutely. And I think one of the things that we’ve come to recognize is that it’s often easier to prevent side effects than it is to treat them once they’ve already occurred. And so, I think it’s really important for people to be proactive and talk to their oncology care providers from the very beginning about what kinds of side effects they may experience as a result of treatment. And thinking about preventative strategies as early as possible.

We were reviewing all of the evidence, looking at exercise, nutrition, and weight management programs for people currently receiving chemotherapy as part of a project through the American Society of Clinical Oncology and saw really consistent evidence that for people who started exercising even before their cancer treatment started, they were much less likely to experience things like fatigue. They were much less likely to lose strength or mobility. They were less likely to suffer from anxiety or depression, and they had a better quality of life.

So really starting that type of program as early as possible is definitely something that we recommend, but it doesn’t mean that those types of changes couldn’t have value no matter where you are in your cancer trajectory. And there have also been studies that have shown that exercise can help treat fatigue once it’s developed, can help people regain strength. So it’s never too late. But I think that for many supportive care options, the earlier that you start them, the more benefit you may derive.

Lisa Hatfield:

Okay. Thank you. You heard it here directly from Dr. Jennifer Ligibel. Thanks for joining this RESTORE program. I’m your host, Lisa Hatfield.

What Is Supportive Care Therapy in Cancer Care?

 

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. 

From Disbelief to Determination: My Follicular Lymphoma Journey

Follicular lymphoma survivor Jerome was shocked with disbelief when he received his diagnosis. Watch as he shares his experience that began as a marathon runner and through his journey with R-CHOP, shared decision-making, benefits of exercise, and support groups.

See More from START HERE Follicular Lymphoma

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Strength in Shared Decisions: Juanita’s Follicular Lymphoma Journey

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Navigating the Unknown: Roberta’s Journey to a Follicular Lymphoma Diagnosis

Defining Survivorship for Relapsed/Refractory Follicular Lymphoma

Defining Survivorship for Relapsed/Refractory Follicular Lymphoma 

Transcript:

Voiceover:

Shared decision-making involves collaboration between patients and healthcare providers to make decisions that align with the patient’s values, preferences, and individual circumstances.  Listen to Jerome’s journey from shattered with disbelief to being informed  and how it transformed his journey.

Jerome:

Hi, My name is Jerome, and I was shocked to my core to receive my follicular lymphoma diagnosis at age 40. I take pride in living a healthy lifestyle and running marathons on a regular basis in Colorado, so I was truly in disbelief when I received my follicular lymphoma diagnosis. The only symptom that I had along with the lump in my lymph nodes was some slight weight loss, but my diagnosis came back as follicular lymphoma after my lymph node biopsy and blood tests.

 As someone who prefers to attack challenges, I found it frustrating to have to wait a few weeks before starting treatment. After talking with my doctor, she put my worries at ease.  We then discussed my treatment options and made the shared decision that R-CHOP would be the best treatment option for me. My wife was in complete agreement about the treatment decision and has been an incredible support for not only me but for our two teenage sons.

 And some patients in my online support group have been in disbelief about my upcoming marathon plans. Even during my toughest days, I always made efforts to at least do some walking down the hallway. It may sound simple, but I feel that it made a measurable impact on my quality of life during and following treatment. Even in small amounts, I feel that exercise helps cancer patients in their recovery. My doctor agrees with this theory as well, as she’s witnessed the difference that physical activity has made with her patients’ recovery times.

To other patients and caregivers out there, I hope sharing my story helps you or your loved one on your journey. I’ve educated myself about follicular lymphoma treatments, and the future of care looks bright. Even though my journey began with being shattered with disbelief, I now feel whole and hopeful for all patients facing  follicular lymphoma.

How Is an AML Treatment Plan Determined?

 

Dr. Daniel Pollyea explains the importance of collaborating with your healthcare team on your AML care decisions and discusses factors that guide an individualized AML treatment plan, such as age, overall health, and personal preference. Dr. Pollyea also addresses the role of common AML gene mutations when choosing therapy.

Dr. Daniel Pollyea is Clinical Director of Leukemia Services in the Division of Medical Oncology, Hematologic Malignancies and Blood and Marrow Transplant at University of Colorado Cancer Center. Learn more about Dr. Pollyea.
 

 

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AML Treatment | Understanding Induction and Consolidation Therapy

AML Treatment | Understanding Induction and Consolidation Therapy

An Overview of Current AML Treatment Types

An Overview of Current AML Treatment Types

AML Treatment Planning | Key Questions to Ask You Doctor

AML Treatment Planning | Key Questions to Ask You Doctor

Transcript: 

Katherine Banwell:

When it comes to choosing AML therapy, it’s important to work with your healthcare team to identify what will be best for you. Would you walk us through the factors that are considered when choosing therapy for AML? 

Dr. Daniel Pollyea:

Sure, yeah. So, we now have options in treatments for this disease and for decades, that wasn’t the case. This was a one-size-fits-all type of disease. And in the last eight years, that has completely changed.

So, there are approaches and diagnosis that vary between very intensive chemotherapy and less intensive treatments. What we call “targeted therapies” in some cases can be considered or be appropriate.  

And so, having a sense, after learning a little bit about this, of how much would you be willing to tolerate an intensive chemotherapy regimen and all the risks inherent in that, if that’s even being presented as an option, and if so, what does that look like? And if not, hey, what are the other options if that sort of doesn’t sound like something that you would be willing to accept? So, I think those kind of probing questions.  

First, asking yourself and then sort of translating that into your treatment team, into “Hey, this is sort of how I define quality of life.  

And these are some red lines that I wouldn’t cross,” that can really help the healthcare team because, again, this is not one-size-fits-all anymore. We do have several options to consider at the time of diagnosis. 

Katherine Banwell:

What other factors would you take into consideration? Do you look at age and overall health and fitness, test results? 

Dr. Daniel Pollyea:

Absolutely. So, the relevant factors at the time of diagnosis would be, as you described, age, to some extent. And there’s no magic cutoff. “When a person is a certain age, this is no longer a treatment.” But age just gives us guidelines. Other comorbidities, other disease that you may be dealing with, things in your past, organ dysfunction; all those things are really, highly considered.  

And also, sort of your own attitude toward “Hey, would I be okay with a month-long stay in the hospital or is that something that there’s no sort of outcome that that would be okay for me to withstand?” But then, the other huge part of this are things that are sort of, at diagnosis, unknown to you and unknown to your doctor for a little bit. And those are disease factors. So, what are the mutations that make up your disease? What’s making your disease tick? And now, just with normal clinical care, we have unbelievable access to this information. We can essentially learn within a week or two every relevant mutation that’s contributing to your disease.       

And that helps us tremendously with respect to prognostication, sure, but also treatment selection because there are some treatments that will work, we think, better with certain disease biology, and other treatments that will work less well.  

And we even have targeted therapies; so, based on particular mutations or other abnormalities, sort of a rationally designed therapy for exactly that disease biology. So, that is also a huge part of treatment selection, and we call those disease factors. 

Katherine Banwell:

Why is molecular testing important following an AML diagnosis? 

Dr. Daniel Pollyea:

Right. So, this basically just gets into what we were just discussing. So, that molecular testing is the testing that will tell us all the mutations that make up your disease biology. And so, that is crucial for prognostication, but also treatment selection.  

And frankly, also when thinking about how to potentially cure your disease, those will be factors taken into account to make decisions that are pretty significant, such as should you receive a bone marrow transplant at some point in the future or not. And the reason it’s so crucial to get this done at diagnosis is, after diagnosis, we start a treatment, and hopefully we put your disease into a remission. And at that point, we no longer have access to your disease cells.  

They’re gone, or they’re too low to even measure. And so, we need to get this information at diagnosis so that we can have it later on so that we can really understand your disease and make the best treatment plan for you.  

Defining Survivorship for Relapsed/Refractory Follicular Lymphoma

How can relapsed/refractory follicular lymphoma survival and quality of life be addressed? Expert Dr. Brad Kahl from Washington University School of Medicine discusses follicular lymphoma monitoring, treatment strategy, coping methods, and patient advice. 

Download Resource Guide | Descargar Guía

See More from START HERE Follicular Lymphoma

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How Do Outcomes for Relapsed/Refractory Follicular Lymphoma Vary?

How Do Outcomes for Relapsed/Refractory Follicular Lymphoma Vary?

Addressing Vulnerabilities in Follicular Lymphoma

Addressing Vulnerabilities in Follicular Lymphoma

What Are Common Follicular Lymphoma Treatment Side Effects?

What Are Common Follicular Lymphoma Treatment Side Effects?


Transcript:

Lisa Hatfield:

How can survivorship be defined for those of us living with relapsed/refractory disease? And I’m wondering if this person is asking what it looks like as far as monitoring or what their life might be like or quality of life. Can you speak to that a little bit please, Dr. Kahl?

Dr. Brad Kahl:

Sure. Yeah. Yeah. So it’ll be different for everybody because some patients with follicular lymphoma will be in remission, and they’re just coming in for checkups where we make sure they’re still in remission. And those visits can be stressful for patients, because literally the doctor is looking for something that nobody wants to find. But we have to look from time to time to make sure things are still good. Other patients are not in remission, but maybe they don’t need treatment right now.

You might recall when I talked about the watch-and-wait strategy for newly diagnosed patients. We have a lot of patients with relapsed follicular lymphoma who don’t need treatment immediately. And I think to stretch out patients’ intervals in between treatments for as long as you can is often in the patient’s best interest. So a lot of times if a patient has no symptoms and their disease burden is really low, we will just tell them, let’s just watch.

We have all these treatments, but we don’t want to burn through our ammunition too quickly here. So let’s just watch your disease. You might be able to go two years, three years, four years, not needing anything. And so again, you have to get patients psychologically comfortable with the idea that we’re just monitoring, we see the disease, but it’s not hurting you right now. Let’s save our ammunition for when we really need it. So that’s another strategy that patients need to get used to.

So there’s a lot of psychological coping that patients need to do and there definitely is not a one-size-fits-all approach there. That’s one thing I’ve learned over the years, and I’ve been doing this for a long time. Every patient is different in how they react to news, how they cope. Some people are best if they’re active corpus they need more information, they need more monitoring. Some patients are actually avoidant corpus, and that’s okay. They want less, less visits, less scans, less news. [laughter] And I will adapt as long as we’re within the realm of what’s medically appropriate. Do a lot of individualization as we’re taking a follicular lymphoma patient through their treatment. So we come up with a plan that works best for them and their coping strategy.

Lisa Hatfield:

Okay. Thank you. And just listening to you and hearing about all these nuances with follicular lymphoma, I would probably recommend as a patient myself with a different kind of cancer, seeking out at least a consult from somebody who specializes mostly in follicular lymphoma, at least a hematologist who can tease through some of these nuances to help you as a patient find the best treatments and therapies and quality of life. 


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Julie Lanford: Why Is It Important for You to Empower Patients?

Why is it important to empower patients? Registered dietitian and oncology nutritionist Julie Lanford discusses her perspective about empowering patients and her approach to shared decision-making.

See More from Empowering Providers to Empower Patients (EPEP)

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Dr. Jennifer Brown: Why Is It Important for You to Empower Patients?

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Transcript:

Julie Lanford:

I think it’s super important that patients feel like they are in control of decision-making regarding their treatment regimen and how they want to approach their treatments. So I always spend time just trying to find out what are these patients’ goals for their life and for their treatment? What does their quality of life look like? So that we can tailor their treatments towards that and not only focus on eliminating cancer from their body, but rather seeing them as a whole person that wants to enjoy whatever time they have left and to tailor our treatments towards that.

So really in conversation with the patient, like what is it that they want to get out of the time that they’ve got left? Are they one that’s going to just go all for it and whatever it takes for treatment, or do they have other goals that they want to work towards, that maybe will define how we go about treatment? So those are the things that I like to make sure that patients feel like they are in control in the decision-making or very much informing the process, rather than just taking our sort of prescription as is.

Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

 

Myeloproliferative neoplasm (MPN) expert Dr. Abdulraheem Yacoub discusses common challenges in managing MPN symptoms, goals for improving patient quality of life, and proactive patient advice for optimal care. 

[ACT]IVATION TIP

“…you should be aware of your own health and your own health challenges and your symptoms, and you should bring to your doctor what is it that you’re bothered by. Some symptoms are a lot more challenging than others, like fatigue, fatigue, and bone pain. These are symptoms that are very resistant to many of our interventions. But that doesn’t mean we shouldn’t keep trying, and we should have an open communication between the patient and their doctors regarding methods to improve that, whether it’s drugs or non-pharmacological interventions or others that we can try for these patients.”

See More From [ACT]IVATED MPN

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Empowering Patients: Enhancing Shared Decision-Making in Myeloproliferative Neoplasm Care

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Exploring New Frontiers: Innovative Drug Combinations and Clinical Trials in Myelofibrosis Care

Navigating Disease Progression in MPNs: Strategies for Patient and Care partner Awareness and Monitoring

Navigating Disease Progression in MPNs: Strategies for Patient and Care partner Awareness and Monitoring

Transcript:

Lisa Hatfield:

Dr. Yacoub, I’d like you to speak to some of the key challenges in managing symptoms based on the available treatment options. What are the most challenging symptoms associated with the different classic MPNs, PV, MF, and ET?

Dr. Abdulraheem Yacoub:

You know as we address patients with blood cancers ET, PV, and myelofibrosis, there are multiple priorities in these patients. One, we want patients to be safe and protected from the disease by lowering their blood counts to the right goal. For myelofibrosis, we want to achieve disease control by JAK inhibitors and reduction in spleen and consider curative therapy with bone transplantation. So the goals of care are multifaceted and multi-layered in these patients, but we always forget about the quality of life. So patients with ET, PV, and MF live with a high burden of constitutional symptoms that are non-relenting and they impact patients’ quality of life. They impact their psychological health and their physical health. They impact their personal lives and their professional careers. And we try as much as possible to mitigate that impact on patients’ lives and quality of life with the tools that we have. Our tools are imperfect.

Every time I go over all the things we can do, we can use hydroxyurea (Hydrea), interferon, JAK inhibitors, and then that’s it. And then we stop. And there’s really, we don’t have as many tools as we want. Of course, the field is getting better, we are getting better tools to help our patients, but we should always keep patients’ quality of life at the center point of healthcare. In addition to getting the objective metrics controlled, the counts in the right range, and the spleen the right size, we also need to make sure that what we’re doing to patients is also adding quality to their lives.

And my [ACT]IVATION tip for patients is that you should be aware of your own health and your own health challenges and your symptoms, and you should bring to your doctor what is it that you’re bothered by. Some symptoms are a lot more challenging than others, like fatigue, fatigue, and bone pain. These are symptoms that are very resistant to many of our interventions. But that doesn’t mean we shouldn’t keep trying, and we should have an open communication between the patient and their doctors regarding methods to improve that, whether it’s drugs or non-pharmacological interventions or others that we can try for these patients.


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Dr. Catherine Coombs: Why Is It Important for You to Empower Patients?

Dr. Catherine Coombs: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

What are some ways to empower patients? CLL expert Dr. Catherine Coombs with University of California Irvine discusses resources she recommends to patients, what she explains about CLL treatment, and lifestyle advice for patients.

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Dr. Andres Chang: Why Is It Important for You to Empower Patients?

Dr. Andres Chang: Why Is It Important for You to Empower Patients?

Transcript:

Dr. Catherine Coombs:

I empower my patients by providing them information, but also, emphasizing that, for as much as they would like, they can take an active role in their disease. And not everyone wants to do that, but I think for those that do, there are really excellent resources for education. I often refer my patients to the CLL Society, The Leukemia & Lymphoma Society, for more information, for support groups.

A common question I get from patients is, “Well, what can I do?” And I always emphasize to them how incredibly treatable CLL is in the event it needs treatment, but that it doesn’t always need treatment and therefore it’s just important to focus on their general health. And so I think eating a healthy diet and exercising are components that can really improve a patient’s quality of life, whether it’s unique to the CLL or just general life, I think, we don’t know, but it’s certainly not bad, and so I always emphasize that this is a treatable malignancy, they can always get more information if that’s something they desire, and that to focus on their overall health is of key importance as well.

CLL Expert Perspectives on Current and Future Patient Care

CLL Expert Perspectives on Current and Future Patient Care from Patient Empowerment Network on Vimeo.

How does the current day and the future of chronic lymphocytic leukemia (CLL) care look? Experts Dr. Jennifer Brown from Dana-Farber Cancer Institute and Dr. Callie Coombs from the University of California, Irvine discuss drug therapies, mutation profile, and quality of life in CLL patient care.

Download Resource Guide  | Descargar guía de recursos

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CLL Clinical Trials for Molecularly Defined Patient Subgroups

Transcript:

Dr. Nicole Rochester:

I have really enjoyed this conversation, and I’d like to get closing thoughts from each of you. So I’ll start with you, Dr. Coombs. What is the most important takeaway message you’d like to leave with healthcare professionals who may be listening as they watch this program and understand better about CLL mutations, clinical trials, and managing side effects?

Dr. Callie Coombs:

So what is the most important thing, there’s so many, I would just say CLL is a chronic disease that affects our primarily elderly patients, and so it’s a marathon, not a sprint. However, with all of the advances that we’ve had in excellent drug therapies, despite these resistance mutations, patients can attain many, many, many years of high quality of life. But it’s incumbent upon us as their providers to help ensure that quality of life through effective management of side effects that may be encountered over the course of their time on therapy for the patients that do need therapy.

Dr. Nicole Rochester:

Wonderful. Thank you, Dr. Coombs. And, Dr. Brown, what closing thoughts do you have for our audience today?

Dr. Jennifer Brown:  

Well, I would echo what Dr. Coombs said, and I would add that as part of that long marathon of CLL, understanding the mutation profile of patients both at baseline, as we discussed with p53 aberration and IGHV, that really describes how their disease is going to behave over that whole marathon. When they’re on treatment, when they’re not on treatment, and it will just help us help you and the patient understand what to expect and help assist with treatment choice. And so adding in that type of evaluation as we discussed will be very helpful.


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Dr. Krina Patel: Why Is It Important for You to Empower Patients?

Dr. Krina Patel: Why Is It Important for You to Empower Patients? from Patient Empowerment Network on Vimeo.

Why is it important to empower patients in their care? Expert Dr. Krina Patel from The University of Texas MD Anderson Cancer Center discusses her approaches and how she engages with her patients through treatment, care, and survivorship.

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Dr. Eugene Manley: Why Is It Important for You to Empower Patients?

Dr. Eugene Manley: Why Is It Important for You to Empower Patients? 

Transcript:

Dr. Krina Patel:

So I think in myeloma, where our patients for the most part are not cured, they’re incurable and for the most part are on therapy lifelong. I think it’s really important that they have a community to go to, including their caregivers. There’s a lot of caregiver burnout that happens, patients, when they’re doing well or well, but when they relapse, it can be pretty dramatic and kind of take away everything again. And every time a patient’s relapsing, sometimes it feels hopeless.

And I think with all the therapies we have out there, this embarrassment of riches as we myeloma doctors like to say, we have to be able to get them through to have access to these drugs at the right time, make sure we decrease toxicity. But it’s a lot of information.

And I think for our patients, no matter how much time we spend with them, it’s just, it’s overwhelming. And I think it is for a lot of my colleagues who don’t just do myeloma all the time. I mean, it’s overwhelming for me half the time when I’m trying to see my patients and figuring out which is the next therapy. And so I really, at the first visit, talk to my patients about patient advocacy groups that are out there. And I even give them websites to go to.

At MD Anderson we’re trying to make videos for our patients so that while they’re waiting in the waiting rooms, they’ll have access to those, specifically, for CAR-T therapy and bispecifics. I think those are such great novel therapies, but they’re also high maintenance as I like to call them that there’s a lot of supportive care that’s needed for infection prophylaxis to make sure they don’t get secondary cancers, right?

All these complications that can happen, neurotoxicity, etcetera. And thankfully, for the most part, our patients do really well and they can get through it. But for those patients who end up with that, it’s really important they have this information, so they know when to contact us. And I think for my colleagues as well, we’re trying really hard to make sure we have better communication, for my patients that are in the community coming in for CAR T or for bispecific therapy, then going back to their doctors, their community doctors for the rest of their care.

So we have letters, that we come up with that we give to the patient as well as send to their doctor. We have phone numbers they can call that even if they’re back home, and they need to get ahold of someone that, they have a lifeline to say, I don’t know what to do. This is happening. And I think, it’s really important again for the patients and their caregivers to really understand, this is a lifelong journey, right?

This is not something that you’re just going to get a few cycles of treatment and then you go to survivorship clinic. And then hopefully we never have to treat again. And that this myeloma as of right now is still a continuous therapy and it could be, long periods of time between therapies. Or you might go on maintenance, for a long period of time before you need your next line of therapy, but this is a lifelong therapy that we’re going to have to do with, with everybody involved.

And I think, again, I can’t see every patient out there and most myeloma specialists can’t, but we’re happy to be a part of the team. And so really, when we can have access to things that the community might not, or be able to help in terms of, what combination is the best for this patient, and what dose reductions should we do for this specific patient?

Those are the things we would love to help our community doctors with to make sure outcomes for all our patients, those who are near us, but those who are also physically not close to us that we can still be able to help to make sure that they have the best efficacy, but also the best quality of life with this disease.

Catalyzing Lung Cancer Care | The Transformative Impact of Early Biomarker Testing

Catalyzing Lung Cancer Care: The Transformative Impact of Early Biomarker Testing from Patient Empowerment Network on Vimeo.

For non-small cell lung cancer (NSCLC) patients who receive early biomarker testing, what are the impacts? Expert Dr. Samuel Cykert from UNC School of Medicine discusses the benefits of biomarker testing and proactive advice for patients. 

[ACT]IVATION TIP

“…make sure you discuss with the doctor who’s doing the biopsy that I really want biomarker testing at the beginning of treatment.”

Download Resource Guide | Descargar guía de recursos

See More from [ACT]IVATED Non-Small Cell Lung Cancer

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Unveiling Racial Disparities in Early-Stage Lung Cancer Treatment

Tailored Approaches to Lung Cancer | The Crucial Role of Biomarker Testing

Tailored Approaches to Lung Cancer | The Crucial Role of Biomarker Testing

Transcript:

Lisa Hatfield:

Dr. Cykert, what are the main benefits of early and comprehensive biomarker testing in non-small cell lung cancer patients, and how does it impact treatment, decision-making, prognosis, and overall patient outcomes?

Dr. Samuel Cykert:

And 80 percent of patients with lung cancer are diagnosed with advanced disease, and really over the last half-dozen years, biomarker testing has become so important because in advanced disease, biological treatments have actually shown good benefits for a lot of patients and for some patients, just explosive benefits. And so on the treatment side, it’s very important to get a battery of biomarker tests, just to understand, as a patient, if you’re eligible for one of these treatments that are really good in terms of improving length and quality of life.

The second reason they’re important is a lot of work is being done on the research side of biomarker testing and biomarker treatments, so if a patient is to qualify for a really strong research study, biomarker testing is just something that’s very, very important. And so on the current treatment side and on the research side, there are really, really tremendous reasons to go ahead and get tested, and so my tip is since not every patient gets tested, make sure you discuss with the doctor who’s doing the biopsy that I really want biomarker testing at the beginning of treatment.


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Why Communication Is So Important in Managing Follicular Lymphoma Side Effects

Why Communication Is So Important in Managing Follicular Lymphoma Side Effects from Patient Empowerment Network on Vimeo.

How can communication help in managing follicular lymphoma side effects? Cancer patient Lisa Hatfield and expert Dr. Tycel Phillips from City of Hope share advice and benefits of open communication about side effects.

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Transcript:

Lisa Hatfield:

Though doctors can observe some patient information in blood tests and other lab work, they  also must hear from their patients. Patients are the ones who know how you’re feeling, and this is why it’s vital for you to communicate with your doctor about any symptoms and side effects that you experience. Treatment can often be adjusted to minimize symptoms and side effects to provide patients with optimal quality of life while fighting your cancer. Listen as Dr. Tycel Phillips discusses further.

Dr. Tycel Phillips:

For the most part, there are logical next steps that we can implement to either eliminate the side effects or hopefully prevent them from future treatment regimens. And also, other concerns that you may have. I mean, you only get one life. And this is your body. 

I try to explain to my patients, “I don’t want you to wait until the next visit if you have issues.” I mean, we need to sort of manage these in real time. Even things we don’t take care of right then and there, again, it gives us a heads up and a head start to try to take care of these problems the next time you come to the clinic.


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How Do Nurses and Allied Professionals Help in Myeloma Clinical Trial Settings?

How Do Nurses and Allied Professionals Help in Myeloma Clinical Trial Settings? from Patient Empowerment Network on Vimeo.

How are myeloma clinical trials aided by nurses and other patient advocates? Experts Dr. Beth Faiman from Taussig Cancer Institute and RuthAnn Gordon from Memorial Sloan Kettering Cancer Center share how others help with patients considering clinical trials and those in clinical trials.

Download Resource Guide|Descargar guía de recursos

See More from EPEP Myeloma

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Transcript:

Dr. Nicole Rochester:

Dr. Faiman, we know that patients with myeloma are living longer, and they’re dealing with a different set of challenges than perhaps they previously encountered. So can you speak to the critical role of nurses specifically in the myeloma trial setting today?

Dr. Beth Faiman:

Yeah, absolutely. You know, I must first start by saying that the successes in the treatment of multiple myeloma can be owed to the brave participation of the patients and the caregivers. So let’s not forget about the caregivers to support the patients with clinical trials. And I started as a clinical trials nurse in the 1990s managing these patients, and a nurse practitioner in 2002. And now my role is different also as a researcher.

And so I have seen firsthand all these drug developments. And so the difference from before when we had very few available therapies to now we have an armamentarium of drugs, and so deciding whether or not to participate in a clinical trial is super important. And how can we support our patients who are now living a longer life span with all these cumulative physical and financial issues? How can the nurses support the patients to get the access to the drugs and access to the financial resources they need so that they continue living a good quality of life? I know we have a very robust program to talk about later on, but I think nurses can fill that critical gap of finding resources for patients to allow them to participate in clinical trials to live a better life.

Dr. Nicole Rochester:

Thank you. Ms. Gordon, we know that diversity in clinical trials is lacking. Certainly there have been lots of reports about that. It’s gotten increasing attention over the last few years. There’s now regulations related to that. And while things are changing, we have a long way to go. And it’s also important that we celebrate the wins that we’ve achieved along the way. So my question for you is, do research nurses play a role in increasing diversity in clinical trials and also in trial innovation?

RuthAnn Gordon:

Absolutely. I think that one of the things that is important is community outreach, right? And so we have a lot of opportunities for research nurses. Well, as in large academic settings, a focus needs to be on exploring ways to have partnerships with our community organizations. And once those connections are established, the research nurses can play an extremely pivotal role in ensuring that we’re not only at point-of-consent educating, but way before that, getting involved in pre-screening activities in order to ensure that we’re looking at a diverse population.

And also to help with providers that are in the community that may have more advanced questions, and having the nurse being partners with those clinicians in order to help them get through the questions that they might have in a more timely manner. And so the research nurses that are attached to those academic centers have a pivotal role in ensuring that the community centers have support.

And in doing the pre-screening, I think is an important feature of having the research nurse also be involved in that process. And so I think that…we know that the community has needs, and we know that we need to increase that access. So looking at opportunities to partner with those settings, to me, with the research nurse, is really critical, and I think is an important way that we can do that.

Educating is, I’ll keep going back to that, when you get hands on that patient, making sure that they understand what they can expect. And any misconceptions. Clearing up misconceptions about being on clinical trials is really important so that when you have a patient that is eligible, that they feel comfortable and confident in joining that study.


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How Do Research Nurses Assist Myeloma Patients on Their Journey?

How Do Research Nurses Assist Myeloma Patients on Their Journey? from Patient Empowerment Network on Vimeo.

Research nurses can help myeloma patients, but how do they help exactly? Clinical trial nursing director RuthAnn Gordon from Memorial Sloan Kettering Cancer Center explains the different ways that research nurses help during the patient journey.

Download Resource Guide|Descargar guía de recursos

See More from EPEP Myeloma

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Transcript:

Dr. Nicole Rochester:

We know that research nurses are at the front line of treating patients. Can you speak to your role, and how you believe it has changed over time?

RuthAnn Gordon:

Absolutely. First, I can tell you that I’ve been doing research nursing for over 20 years and really love the work. I think it’s important for patients to have that support when they’re going through a clinical trial. And so we’ve done a lot of work to make sure that they have that support. So our role is to really be able to guide the patient through the journey, making sure that they’re educated on what they can expect on the clinical trial, and not only in terms of what maybe the drug might be doing them in terms of side effects, but what is their schedule going to look like? When are they going to have to come in? How long are they going to be here? What does that mean? And how do we support them with their quality of life while they go through all the responsibilities that they as patients have on a clinical trial, and what do they need to do to get ready for that experience?

And so we’re guiding them, we’re educating them, we’re ensuring that they do understand the potential side effects, but do understand also what their role is in the clinical trial and what they can expect. And I think that in terms of what has changed is that we have really put more value on the fact that having that nurse that has the expertise in the clinical trial and really can gatekeep all of the patient care coordination that that involves from a clinician experience and from a clinician perspective, has really helped to ensure that our patients are ready, that we can do our very complex trials.

Because trials have changed so much in the last decade. There’s so many more expectations. There are so many more things that need to happen while they’re on the trial that really having that clinician doing that with the patient has improved our ability to do those kinds of complex trials. And so I think that really recognizing that having that clinician perspective at the partner, at the bedside with the patient has really helped us to expand the kind of trials that we can do.


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