Tag Archive for: clinical trials

How Do Genomic Testing Results Impact Breast Cancer Treatment Options?

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How Do Genomic Testing Results Impact Breast Cancer Treatment Options? from Patient Empowerment Network on Vimeo.

Understanding a breast cancer patient’s individual disease is vital to personalizing their care. Dr. Jame Abraham explains how genomic testing results could impact a patient’s treatment path.

Dr. Jame Abraham is the chairman of the Department of Hematology & Medical Oncology at Cleveland Clinic and professor of medicine at Cleveland Clinic Lerner College of Medicine. Learn more about Dr. Abraham.

See More From INSIST! Breast Cancer

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What’s the Difference Between Germline and Somatic Breast Cancer Mutations

What’s the Difference Between Germline and Somatic Breast Cancer Mutations?

 What Is Breast Cancer Genomic Testing

What Is Breast Cancer Genomic Testing?

 What Is a Breast Cancer Genetic Mutation

What Is a Breast Cancer Genetic Mutation?

Transcript:

Katherine:

Dr. Abraham, how do genomic test results impact treatment options?  

Dr. Abraham:

So, let’s just kind of think about the germline mutation. Let’s just say, we do a genetic testing for a patient with a stage two breast cancer. And let’s just say, if the patient has BRCA1 mutation, basically, we are saying, if somebody has a BRCA1 mutation, there’s about a 20 to 40 percent chance of developing contralateral breast cancer, breast cancer on the other side, and then, about 20 to 40 percent chance of developing ovarian cancer. 

So, if I’m seeing somebody who is in their 40s or 50s, those who completed their family, completed the family, then, with the mutation, we will talk to them about potential risk reduction surgeries for the other breast. 

And then, in addition, we’ll talk about removing the ovaries for prevention of ovarian cancer. 

So, that’s one major decision point. And then, let’s just say, with the BRCA mutation, there are new drugs, FDA-approved, what we call as, PARP inhibitors, or olaparib (Lynparza). After completing their chemotherapy and other treatments, we can add a PARP inhibitor or olaparib to their adjuvant treatment. That means, after surgery and chemo, we can add this medicine, for their treatment, for a year. 

So, this has tremendous implications for their treatment. And then, let’s just say, if she has other family members, there’s about 50 percent chance that they may have the same. 

So, you can probably talk to them about doing the testing for them, and that may influence their screening methods, to see if she has kids, and what 50 percent chance that they can inherit this gene. Again, that can influence how we screen and manage them.  

So, let’s just say, if I’m seeing somebody who stage I breast cancer, you’re positive, and then, we do a genomic testing. It’s not exactly somatic, but it’s, still, it’s a genomic testing. 

So, we do a genomic testing, such as Oncotype, or MammaPrint – so, again, that’s an early-stage breast cancer – that specifically looked at certain things within the tumor, which are markers for proliferation. So, those tests will help us, again, in a specific subset of patients, ER-positive, HER2-negative, early-stage patients, tests, such as Oncotype and MammaPrint, will help us to identify who will need chemo, or whom we can spare more aggressive treatments like chemo. 

And then, in metastatic setting, when we do this testing, we can see certain mutations within the tumor that will allow us to recommend treatments based upon that. 

What Is a Breast Cancer Genetic Mutation?

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What Is a Breast Cancer Genetic Mutation? from Patient Empowerment Network on Vimeo.

Breast cancer patients may learn that they have a “genetic mutation”—so what does that mean exactly? Dr. Jame Abraham defines the term and explains what mutation status could reveal about a patient’s individual disease.

Dr. Jame Abraham is the chairman of the Department of Hematology & Medical Oncology at Cleveland Clinic and professor of medicine at Cleveland Clinic Lerner College of Medicine. Learn more about Dr. Abraham.

See More From INSIST! Breast Cancer

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Transcript:

Dr. Abraham:

So, genetic mutation is, the change is happening within the tumor, which is making it more aggressive, or less aggressive. So, what’s driving this tumor? Let us think, it’s like a machine, and the machine has, probably, different parts, and we know, every part plays a role in driving that engine, but some part may be playing a major role in driving that engine, and the question is, can we knock that off with certain medicine? 

So, select genetic testing. If the tumor has, what we call, it’s an ESR1 mutation, then we can use some medicine, which can block that ESR1. That’s a new drug, which just got approved recently, to see if they have some kind of an immune marker, what we call as, a PD-L1 marker. Then, it can be used like an immunotherapy, to stop that cell growth. So, let’s just say, if I have somebody with BRCA1 somatic mutation, in some patients, even certain medicines, like PARP inhibitors, may be helpful. So, identifying that, what’s turning them on, and trying to identify a medicine which can turn that off. 

What’s the Difference Between Germline and Somatic Breast Cancer Mutations?

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What’s the Difference Between Germline and Somatic Breast Cancer Mutations? from Patient Empowerment Network on Vimeo.

Breast cancer expert Dr. Jame Abraham reviews the key differences between germline and somatic genomic testing and explains the role they play in treatment, care, and predicting a recurrence.

Dr. Jame Abraham is the chairman of the Department of Hematology & Medical Oncology at Cleveland Clinic and professor of medicine at Cleveland Clinic Lerner College of Medicine. Learn more about Dr. Abraham.

See More From INSIST! Metastatic Breast Cancer

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Transcript:

Katherine:

Dr. Abraham, what’s the difference between germline and somatic genetic mutations?   

Dr. Abraham:

Sure. So, germline, as I said, to see if we carry that gene, and it means, I’m born with that. I’m inherited. I carry that gene. That’s in my DNA. Somatic is, the change is happening within the tumor, within the tumor. 

So, it’s kind of – sometimes, it can be acquired. So, let’s just say, if I’m seeing a patient with breast cancer, and then, it can be early stage. So, I’ll kind of say that – let’s just say, if I’m seeing somebody with a stage II breast cancer, we can do a genomic testing of the tumor to identify the risk of recurrence for the next nine years or so. We do that, mainly in what we call as ER-positive, HER2-negative tumors. So, hormone-positive, HER2-negative tumors. 

In early-stage setting, we do genomic testing to classify the risk of recurrence. And I found the high risk, or low risk, that’s one. And second, this genomic testing will tell us the benefit from chemotherapy. 

So, share prognosis, and treatment decision.  

So, the other genomic testing we commonly do is, let’s just say, she has seen somebody who is metastatic, means the cancer already spread to other part of the body. Again, we can do the genomic testing from the tumor, and then, that’ll kind of give us what, the changes happening within the tumor. That’ll help us to identify potential, and what particular targets within the tumor, so that we can treat them with new treatments, or screen them for clinical trials. 

And then, some of the new treatments have specific mutations that’ll identify if patients benefit from certain medications. So, the genomic testing will help us to select patients for these new treatments, or even clinical trials. 

What Is Breast Cancer Genomic Testing?

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What Is Breast Cancer Genomic Testing? from Patient Empowerment Network on Vimeo.

What do results of breast cancer genomic testing reveal? Expert Dr. Jame Abraham explains this type of testing and common breast cancer genetic mutations and discusses how tests are typically administered.

Dr. Jame Abraham is the chairman of the Department of Hematology & Medical Oncology at Cleveland Clinic and professor of medicine at Cleveland Clinic Lerner College of Medicine. Learn more about Dr. Abraham.

See More From INSIST! Metastatic Breast Cancer

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What is the Role of Genetic Testing in Breast Cancer

Transcript:

Katherine:

Dr. Abraham, for breast cancer patients who don’t understand the term, what is genomic testing?   

Dr. Abraham:

So, genomic testing, there are two types of genomic testing, what we call as, germline testing. And then, there’s another one, what we call as, somatic testing. So, germline testing means, the question is, if I carry a gene which can make me high risk for breast cancer. So, one of the most common questions I get from our patients when I see them is, “Oh, do I carry a gene? Why did I get this breast cancer?” And then, the other question is, “What’s the risk for my kids, my daughter?” 

So, I’ve seen, about 5 to 10 percent of breast cancers are due to an abnormal gene. To find that, we do, what we call as, the germline testing. That’s the first – when we say genomic testing, that’s the most commonly understood nomenclature. 

So, do I carry this gene? It’s a blood test, or we can take a mouth swab. That will give us an answer, if that person carries a gene. 

Usually, we test several genes, and I’m sure, most of the people have BRCA1, BRCA2, PALB2, CDH1. Those are some of the genes we test, and BRCA1 and BRCA2 are the most common, and 80 percent of heredity, or those who are transmitted to the next generation, is attributed to BRCA1 and BRCA2.  

Katherine:

How is this testing administered?  

Dr. Abraham:

So, it’s a blood test. 

Most of the time, we can draw – usually, the way we do is, I like to say, if I’m seeing a patient who has – and this is a patient who’s 45 years old and has a strong family history, or in patients under the age of 50, with a triple-negative breast cancer, or any person under the age of 50, can be considered for genetic counseling. And then, based upon the conversation with a genetic counselor, we will recommend the genetic testing. Usually, it’s a blood draw. 

What Are Common Barriers to Clinical Trials Access?

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What Are Common Barriers to Clinical Trial Access? from Patient Empowerment Network on Vimeo.

Clinical trials are key to the approval of new breast cancer treatments. But what factors could prevent some patients from participating? Expert Dr. Jame Abraham reviews common barriers and emphasizes the commitment of the oncology community to improving trial access.

Dr. Jame Abraham is the chairman of the Department of Hematology & Medical Oncology at Cleveland Clinic and professor of medicine at Cleveland Clinic Lerner College of Medicine. Learn more about Dr. Abraham.

See More from Breast Cancer Clinical Trials 201

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Transcript:

Katherine:

Dr. Abraham, what are barriers to accessing clinical trials?  

Dr. Abraham:

That’s a really good question. I think we need to continue to work on breaking down the barriers. And the most common barrier is, wherever she, or he, are going for the treatment, they don’t have access to a client. There’s no trial available. The second, let’s just say, if I can say, the lack of awareness from the provider, or the patient’s side, about the importance of trial. And then, third, some trials can be complicated. So, it requires multiple appointments, or multiple trips to the doctor’s office, or the hospital, or the cancer center. So, that may not be feasible for everybody. Somebody has limited access, limited support, it can be tough. 

And then, let’s just say, that people have comorbid conditions, if I can say. Other conditions, heart disease, or other things, or they’re not able to be more active, and some of those things, can make that person ineligible for a trial. 

So, there are a number of things, potentially, can be barriers, but I think, as an oncology community, as cancer centers, we need to continue to work on optimizing, or breaking down, these barriers.  

As a nation, we have a huge – we have a lot of work in addressing the disparities in cancer care.

As you know, where you’re born, and it can be innercity, Cleveland, innercity, Detroit, or it can be in the Appalachia, where you’re born, and what’s your access to healthcare, that plays a major role. 

And, of course, your race, and your education, I know that plays a major role in access to healthcare, and then, able to continue with treatment, and that plays a similar role in clinical trials, too. So, the number of patients entering clinical trials from different race, especially African American patients, are less, compared to the other patient population. So, there is a lot of work, need to be done, in addressing the disparities in cancer care, in general, and especially clinical trials. 

Katherine:

And I imagine that’s a focus for many of the people working on trials?  

Dr. Abraham:

It’s a focus for National Cancer Institute, it’s a focus for all the cancer centers, absolutely. 

Breast Cancer Clinical Trials | What Are the Phases?

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Breast Cancer Clinical Trials | What Are the Phases? from Patient Empowerment Network on Vimeo.

What do breast cancer patients need to know about the phases of a clinical trial? Expert Dr. Jame Abraham explains the trial process and reviews what happens during each phase.

Dr. Jame Abraham is the chairman of the Department of Hematology & Medical Oncology at Cleveland Clinic and professor of medicine at Cleveland Clinic Lerner College of Medicine. Learn more about Dr. Abraham.

See More from Breast Cancer Clinical Trials 201

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Transcript:

Katherine:

Dr. Abraham, many people are confused about how breast cancer clinical trials are conducted. What are the phases of a clinical trial? 

Dr. Abraham:

So, that’s a really good question. It’s a really important question. And I’m kind of saying, there’s so many new things, and I’m talking about genomic testing, and I’m talking about all these new treatments. As I mentioned, I’ve been doing breast cancer for 20 years. So, every year, we are making huge progress in the treatment of breast cancer. Even then, more than 40,000 women will lose their life because of breast cancer. So, we have a long way to go. As you know, the only way we can make things better for tomorrow is by doing clinical trials. And there are so many different types of clinical trials. I’ll talk about that in a second. 

Every new treatment we have today is coming out through a clinical trial, and someone, somewhere, said yes to a new treatment, or will be part of a trial. And that’s the reason we have a new drug today, and that’s making things better for tomorrow. 

So, a clinical trial is extremely important, and I’ll say, a clinical trial is the gold standard of cancer treatment. And unfortunately, only less than seven percent of adults in the U.S. are enrolled in a clinical trial. Well, of course, that’s many reasons for that, but let me just make it clear. I know people sometimes worry, “Oh, by being part of a clinical trial, I’m a guinea pig.” No. No, no. Clinical trials are run with high ethical standards. So many committees review that, make sure it’s scientifically sound, it’s safe, and it protects the patient. 

So, there’s so many layers of protection for the patients before anyone enters in a clinical trial. 

So, there are treatment trials and non-treatment trials, and I’ll focus on – let me focus on treatment trials, not which other ones are making all these changes in the clinic. So, I’ve been doing trials for the last 20 years or so, or being part of a number of regional, and national, or global clients. 

So, there are three major types of trials. One, because Phase I, Phase I. That’s the earliest form of clinical trial, and we have some, what they call as, preclinical data. A drug is found to be promising, but we don’t have too much, if I can say, data, in patients, or humans. 

So, Phase I is the first human trial, which is looking for the right dose of the drug, what side effects we can expect, and we kind of look at how the drug is metabolized in the body. So, that’s the Phase I trial. 

The second one is Phase II, Phase II trial. Phase II trials are looking for efficacy, and how active this drug is in breast cancer. And the third type of trial is Phase III, Phase III. Phase III is what we call as, randomized trials. Means there’s a standard treatment, and now, we have this new drug. The question is, is the new drug better than the standard treatment? So, Phase III, it’s randomized. It’s divided into two groups. One group will get the standard treatment, and the second group will get this new treatment. 

And then, we’ll come back and compare these two, and see which is better. That’s Phase III. 

So, there is Phase IV, that’s, they call as, a post-marketing study, and once the – based upon the phase, early phase trials, the FDA can approve, or not approve, a drug. And let’s just say, if it’s approved, it’s in the market. Then, the patients can potentially go for a, what we call as, phase – I mean, potentially, we can do a Phase IV study. That’s post-marketing study. 

Why Should Breast Cancer Patients Engage in Care Decisions?

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Why Should Breast Cancer Patients Engage in Care Decisions? from Patient Empowerment Network on Vimeo.

What role should breast cancer patients play in their care and treatment decisions? Expert Dr. Jame Abraham explains the concept of shared decision-making and stresses the importance of patient/healthcare team communication.

Dr. Jame Abraham is the chairman of the Department of Hematology & Medical Oncology at Cleveland Clinic and professor of medicine at Cleveland Clinic Lerner College of Medicine. Learn more about Dr. Abraham.

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Transcript:

Katherine:

Dr. Abraham, what is shared decision-making?  

Dr. Abraham:

Yeah. So, that’s a really good question. When, as you know, when somebody’s ill, doesn’t matter what the condition is, patients have the biggest stake in that. It’s my health, or it’s the patient’s health. So, it’s really important for us to, patient to be aware, and empowered, in the decision-making.  

So, it’s an informed process, an empowered process, for the patient to be part of the decision-making, understanding the risks and benefit of the treatment steps. And when I said treatment, it can start from screening, the procedures, to treatment, any of the things that we do, that should be an informed, shared decision-making.  

Katherine:

Dr. Abraham, why is it so important for patients speak up about any treatment side effects or symptoms they may be experiencing?   

Dr. Abraham:

So, as I said, they have the biggest stake in this thing, and it’s really important for them to speak up, ask questions, to the doctors. And that’s the only way we can make sure that the patient is getting the right treatment, right dose, if you need to modify, if you need to look for something else. That’s the only way, when we have that, if I can say, that trusting relationship, with proper communication, we can make sure that they – ensure they continue to get the right treatment. 

Metastatic Prostate Cancer Treatment Sequencing: Emerging Research

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Metastatic Prostate Cancer Treatment Sequencing: Emerging Research from Patient Empowerment Network on Vimeo.

What do metastatic prostate cancer patients need to know about developing treatment sequencing research? Dr. David Wise shares research updates about combination treatments and timing of treatments that have shown encouraging results.

Dr. David Wise is Director of Genitourinary Medical Oncology at the Laura and Isaac Perlmutter Cancer Center at NYU Langone Health. Learn more about Dr. Wise.

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Transcript:

Katherine:

Dr. Wise, is there developing research or treatment news that prostate cancer patients should know about? 

Dr. David Wise:

Yeah. I think in terms of other research, I think where we’re seeing a lot of excitement is in boosting the treatment at the time of initial diagnosis for men with metastatic prostate cancer, right?  

So, what we’ve found is that for prostate cancer – and this has been true for some other cancers, but not all – it seem that when we use our best treatments early, we get a greater and greater return. We get a greater and greater durability of our effect and a more prolonged benefit of treatment effectiveness, of quality-of-life preservation, and a life span. That has really been, I would say, one of the key take-home points from the last five years.  

And so, what’s exciting in the field is that we’re continuing to go in that direction. So, for example, there are clinical trials now testing some of the new CDK4/6 inhibitors like abemaciclib or Verzenio, which is a clinical trial that we have here for men who are initially diagnosed.  

There are clinical trials testing lutetium PSMA 617 at the time of the initial diagnosis rather than waiting until treatment resistance develops. I think it’s a principle that’s emerged. I don’t know that I would call it a law. If it were, we wouldn’t have to do clinical trials, and that’s because with more exposure to these treatments, there is potential for more cumulative side effects with more combinations of treatments. There’s more potential for additive side effects that can occur from that combination.  

So, we need to see and really prove to ourselves that treating earlier is better than treating in a one-treatment-at-a-time sequential approach. But I think that the lesson from many other cancers has really been that combination treatments have been the most effective treatments. And I think that now that we have additional effective treatments that have been approved as a standalone strategy. 

What’s exciting now is that we’re now seeing the combination of these strategies into one, two, three, four drug regimens. And can we cure? And that’s, of course, what we’re really hoping for. That’s what we’re all striving for in oncology. So, that’s, I think, were a lot of the excitement is in oncology right now. 

Are We Getting Closer to Precision Oncology for Prostate Cancer?

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Are We Getting Closer to Precision Oncology for Prostate Cancer? from Patient Empowerment Network on Vimeo.

Is there progress in precision oncology for prostate cancer? Dr. David Wise shares his perspective about precision oncology and an update about ongoing research. 

Dr. David Wise is Director of Genitourinary Medical Oncology at the Laura and Isaac Perlmutter Cancer Center at NYU Langone Health. Learn more about Dr. Wise.

See More From INSIST! Prostate Cancer

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Transcript:

Dr. David Wise:

Sure. So, yes. One of the key steps going forward for our research is to look for more of these precision targets that we can take advantage of. We certainly think that there are more genetic features out there that have yet to be treated effectively. And so, those are the kinds of treatments that we’re really excited about.  

And so, along those lines, we have clinical trials here that are looking at specific mutations in the androgen receptor gene, for example, which is a clear gene that promotes the development of prostate cancer and its resistance to established treatments. So, we have clinical trials here targeting the androgen receptor, particularly when it’s mutated, okay? So, that’s one example. We have immunotherapy trials here that are really looking to target PSMA, so with the same sort of precision target.  

But instead of looking for a different target, we’re trying to treat the same target but with a different treatment modality. So, instead of using radiation targeted towards that PSMA, we’re trying to use antibodies that bring the immune system towards that target in order to provide a potentially better tolerated and longer-lasting treatment to patients with PSMA on their cancer.  

And even taking it to the next step, what we’ve found is that…how do we help boost the long-term durability of our treatments? A lot of these precision treatments give us an initial excellent result only to eventually stop working. And so, how do we extend durability? That’s a very important area of research. And we think part of that is boosting the immune system’s response to the treatment. And so, we’re actually also going to begin a trial in the next few months, which we think is really exciting, where we’re combining lutetium PSMA to target those PSMA-expressing prostate cancers.  

But then we’re combining that with a type of immunotherapy that we think will more fully expose the cancer to the treatment effect and remove some of the barriers in the body towards fully killing those remaining cancer cells. 

Thriving With Breast Cancer | Tools for Navigating Care and Treatment

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Thriving With Breast Cancer | Tools for Navigating Care and Treatment from Patient Empowerment Network on Vimeo.

How can patients live well with breast cancer? Dr. Bhuvaneswari Ramaswamy reviews current and emerging breast cancer treatments, discusses the importance of emotional support, and shares advice and resources for engaging in care decisions.

Dr. Bhuvaneswari Ramaswamy is the Section Chief of Breast Medical Oncology and the Director of the Medical Oncology Fellowship Program in Breast Cancer at The Ohio State College of Medicine. Learn more about Dr. Ramaswamy.

See More from Thrive Breast Cancer

Download Resource Guide

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 What Is Precision Oncology and What Does It Mean for Breast Cancer Patients

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Transcript:

Katherine:

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today’s webinar is part of our Thrive Series, and we’re going to discuss the tools to help you navigate breast cancer care. Before we meet our guest, let’s review a few important details. The reminder email you received about this program contains a link to a program resource guide. If you haven’t already, click that link to access information to follow along during the webinar. At the end of this program, you’ll receive a link to a survey.  

Please take a moment to provide feedback about your experience today in order to help us plan future webinars. And finally, before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Well, joining me today is Dr. Ramaswamy. Welcome. It’s so good to have you here. Would you mind introducing yourself?  

Dr. Ramaswamy:

Oh, no, of course not. Thank you so much, Katherine. And well, I’m Dr. Ramaswamy. I’m a professor at the Ohio State University. I’ve been here for about 20 years as faculty. My focus of interest, what I see in the clinic is primarily breast cancer patients. And my research is also focused on breast cancer itself, both treatment as well as prevention. I do both. I have a lab, and so I work on that to understand some of the mechanisms and biology of drug resistance as well as prevention.  

Why does like lack of breastfeeding or obesity, why does that increase the risk of breast cancer? I study that in the clinic. I am primarily interested in clinical research, so putting patients on clinical trials, both therapeutic and non-therapeutic, collecting tissues, collecting data to understand, again, biology that’s happening in the patients and what works and improving care and identifying new novel therapies. That’s what I do. 

Katherine:

Excellent. 

Well, thank you for taking the time out of your schedule to join us today. 

Dr. Ramaswamy:

Anytime. 

Katherine:

I’d like to start – we start all of our Thrive Series with the same question. In your experience, what does it mean to thrive with breast cancer? 

Dr. Ramaswamy:

That’s a great question. I think it’s an important one because we always talk about surviving breast cancer, and that’s obviously the most important thing. We all want to survive, but we all also want more than that. We don’t want to just live, we want quality of life. 

And I think one thing that to remember is as soon as the breast cancer diagnosis is done, it’s in part – it’s difficult to say that you can thrive immediately. So, your focus is on really getting through the treatments and making sure it’s all done. So, at that time, managing the toxicities and getting through the stresses of going through the treatments and surgery, radiation, et cetera takes over everything else. But as you finish that off you, you want to focus on what are the ways you can try to get back to the life that you had prior to breast cancer.  

Now it’s difficult and it’s almost impossible to forget the big C word in your life. So, that’s going to hang and that’s going to kind of make anything you look at your perspective as slightly different. I mean, every pain could be worrisome because could it be a reference? Has the cancer spread? Or every bad news about another person could you, could transport that about yourself and then kind of worry about what could happen to you. 

Every visit to the doctor, and particularly your oncologist, is going to bring back memories. So, there are certain things that you can’t take away, but time can heal those. But what we talk about thriving is that you looking at factors that is going to make you and your body healthy. That is going to be exercise, being engaged in whether your work or your family work and being joyful and seek what brings you joy, whether it’s friends, your work or your family.  

And make sure you make time for that. And also eating right and diet is an important aspect of that. Not doing inflammatory diets such as highly fatty diets or meat-containing diet, but really kind of looking at your diet and your weight and your exercise. And trying to also discuss with your team about what are the symptoms you are having and how we can support you to mitigate those symptoms. And really having conversations and somebody you can confide with to both manage your physical aspects as well as the emotional aspects.  

And really kind of thriving and becoming an advocate for yourself as well as for others who have breast cancer is what I would say is truly thriving with breast – with the diagnosis of breast cancer.   

Katherine: 

Yeah. And we are going to go into a more in-depth discussion later as the interview goes on, but thank you so much for your perspective. Let’s start with an essential piece that helps people thrive, understanding their breast cancer. First, what are the types of breast cancer? 

Dr. Ramaswamy:

Yeah, and I think that’s extremely critical. Empowering you, the patient, with the knowledge of the type of breast cancers and what’s the outcomes and why they’re getting some treatments, and what to look for is probably one of the most important things to do. And part of it lies primarily with the providers to ensure that education empowerment. But part of it also lies on the part of the patient to make sure they ask the right questions and learn about their breast cancer.  

So, the type of breast cancers you have that are hormone receptor-sensitive breast cancer, that means your tumor would be positive for estrogen and or progesterone receptors. And it depends on estrogen and or progesterone for its growth and wellbeing. And then there is a HER2-positive breast cancer, which means the HER2 protein is high in your tumors and that drives the cancer cells.  

And so, it’s important to understand that subtype and why we have certain treatments to improve the outcomes. And then the last one is when all those three are not there, ER, PR, and HER2. So, hence the word triple-negative breast cancers. These are the large subtypes of breast cancers that are based on these biomarkers, which are proteins that drive the growth of breast, the cancer cells. There is of course different types of breast cancer based on histology that is invasive ductal cancer, that’s very most common. The less, slightly less common is the invasive lobular cancer, about 10 to 15 percent.  

But then there are also very less than 3 percent called metaplastic breast cancers and other types of breast cancers that could also be histological different subtypes.  

And it’s important for you to know what type of subtype of histological or how does it look under the microscope is important for you to know as well. So, these I would say are the most important understanding of our breast cancer subtypes, at least this much to definitely educate the patient and patient having the understanding of their cancer. 

Katherine: 

What biomarker testing is standard following a breast cancer diagnosis? 

Dr. Ramaswamy:

So, the three biomarkers that we definitely test for at this point are the estrogen receptor for strong receptors and the HER2. And, of course, there’s also the grade that your pathologist would grade your tumor. And grade is different from stage. And that is looking at how quickly your cells are growing. And these are the basic understanding that you should have about your cancer at this point. 

Katherine: 

Dr. Ramasamy, how is breast cancer staged? 

Dr. Ramaswamy:

The breast cancer is usually staged by using couple of things. One is clinical staging. So, when you come in with the initial you feel a lump and you get a mammogram. So, we will stage you by understanding the size of your tumor in your breast as well as whether we are able to palpate your lymph nodes. Second, we, you know, the imaging. What we feel as a size is usually a little bit overestimated when we look at the mammograms or the MRIs that you have. And then we’ll see whether in the – in those imagings whether your lymph nodes are looking abnormal. So, we use these initially to do clinical staging. But then when we go to surgery, that’s when we do the correct pathological staging because now, we know exactly your tumor size. Then they do what’s called a sentinel lymph node biopsy.  

We don’t need to take all the lymph nodes to stage your nodal status anymore. We just use this methodology in the surgery, in this – during surgery to just pick out those nodes that is draining your tumor back. And whether they’re positive or not. In general, as long as you don’t have a very locally advanced cancer, we don’t need to do staging scans to stage you for breast cancer. But in case you are unlucky enough to have cancer spread in those, and we do scans and you have cancer either in your bone or liver or lung, then that is a higher staging, and that’s what’s called the stage IV cancer. 

Katherine: 

Okay. Another key component of thriving is finding a treatment that is right for your disease. What are the considerations that guide a treatment decision? 

Dr. Ramaswamy:

Yeah, great question. So, what we just talked about, the two things that are very important for us to make a decision, and that’s where we have come far in the last 20, 25 years, is because we are not just taking the staging.  

That is anatomical staging, meaning what’s the size of your tumor and the lymph node involvement. We use those. That is important for us because that obviously changes the risk. The higher the stage, the higher risk of recurrence. The higher the risk, we have to do more treatment to get a benefit, right? So, that’s one side. But what we have come to understand is biomarkers are very important. That is biology of your tumor.  

So, the grade, how quickly it’s proliferating although it’s not a biomarker, but it tells us a lot. And then the three important biomarkers we talked about ER, PR, and HER2. Those all are important for us to make a decision. In addition to that, we do something called a genomic testing called Oncotype DX assay. There is also another test called MammaPrint. These are genomic testing.  

That is, we look at some of the genes that are up or downregulated in your tumor to decide whether you are going to benefit for something called chemotherapy or maybe just targeted therapies enough. So, these are some of the factors that we use to make a decision.  

Now, do we use age and your performance status? Meaning how well you are? Do you have comorbidities? Do you have bad diabetes? Do you have heart disease? Yes, they all go into that whole treatment decision, but the primary is made out of biomarkers and genomic testing and anatomic, and the rest are additional factors that go into our decision-making.  

Katherine: 

Yeah. What about metastatic disease? Are the considerations different when it comes to treatment? 

Dr. Ramaswamy:

It is a little bit different because the first thing that we have to understand is when we are seeing them in stage I, stage II, stage III, which is stage IV is metastatic, stage II – we – our goal is a curator. We are trying to really throw the kitchen sink, although that’s really not what we do. We are trying to still be tailored therapy, but we are trying to do everything we can to prevent a recurrence.  

But now when you have a stage IV disease that is the cancer has spread, that is the horses have left the barn in the breast and has gone and settled in distant organs and gone, our goal is to try to contain the disease. So, prevent further progression, prolong the life and survival, and also improve quality of life. So, there are those consideration.  

The biomarkers still go into consideration. We ensure we biopsy the metastatic site and look for those biomarkers. We do the genomic testing, gene sequencing of this. That will also help with our decision-making. We, of course, look for clinical trials because new novel therapies are always more important, but these are the other factors. And, of course, performance status that is how well you are, how well your organs are functioning, and what’s your age, and how that affects your morbidity. All of those are also important. 

Katherine:

What questions should patients ask about their treatment options?  

Dr. Ramaswamy:

I think the most important thing is to understand what you have first. So, kind of the doctor will talk to you about what type, histological type of breast cancer you have. They’ll also talk to you about what biomarkers you have. And they will also talk to you about the treatment options, which could be chemotherapy versus target therapies, and what are the outcomes from those using clinical trials. So, I think the questions that you have to ask them is that, what do you feel like you would is right for your body, right? That’s important. That what you have some of the preconceived notions that we all carry. That bias and preconceived notions is just a normal natural way of learning. And so ask about those fears, ask about those hopes that you have. And if your hope is, “Hey, can I do as well without chemotherapy?” Ask that question. So, and it’s important to understand the side effects and the outcomes of each therapy.   

It may also be important for you if you do – you really don’t want to have treatments to understand if you don’t get treatment, what are your outcome changes? So, those are, I think, the important thing. And then what that does mean to you? What do you want out of your life? Longevity, quality of life? How long will your quality of life be affected? And how does that impact your understanding of what you want out of your life? I think those are important for you to ask and make sure you have a friend or a relative with you so that not everything is going to go in at the first or the second visit, so you have someone else who’s taking notes. 

Katherine: 

Yeah, good idea. Are there emerging therapies that are showing promise? 

Dr. Ramaswamy:

Oh, my God. There’s just tremendous emerging therapies that are showing extraordinary progress. And I talk about this to my patients all the time. I mean, I tell them like two years ago say in a patient with – patient with metastatic disease, I’ll say, last year this drug wasn’t approved.  

This drug is now approved for you to be given, and it shows extraordinary effect. So, every year we have new drugs getting approved, and we are also trying to get it used to be a little bit of a richness on the HER2-positive disease. And now we are seeing definitely a lot of richness on hormone receptor- positive disease. And I think we’re starting to see some new particular immunotherapy and other targeted therapies showing some response in triple- negative breast cancer.  

Now, I know that’s a place that we still need to see more newer therapies, but overall, in the stage IV setting, we have really many options to keep them in good quality of life and longer. But people will ask, “Really, why do I even need to get to stage IV?” Really look at me and improve the curative setting. And that again, we are able to pick the higher risk patients, what me – what it means to have higher risk disease, how do we target them, newer drugs to target them. So, I think in so many ways we are doing better. And we are also getting to a place can we detect higher-risk patients, not just by their initial diagnosis and response, but follow them sequentially by circulating tumor cells?  

And we are getting to that place where we can actually do circulating tumor DNA, so just isolate the DNA, and we know what will belong to the tumor. And then circulating tumor cells seemingly even after your curative therapy. And so that is something that’s getting approved. And so we are not only seeing treatment, but we are also trying to see better detection of that reference. So, I think we are in so many ways, improving. And I am – I’ve been in this for 20 years, some of the things that thought was a dream is coming true. So, truly just keep living well and keep thriving. There are options. 

Katherine: 

Yeah. That’s, it’s positive. 

Dr. Ramaswamy:

Yes. 

Katherine: 

Dr. Ramaswamy, along with treatment can also come side effects. What are some common side effects of breast cancer treatment? 

Dr. Ramaswamy:

Yeah, great question. Again, an important question for you all to consider. So, let’s divide our treatment to targeted therapy and chemotherapy. The targeted therapy could be the estrogen receptors and then the HER2 because the HER2, again, remember that biomarker. And then the chemotherapy that any patient with breast cancer could get, including, of course, the triple-negative. And then we’ll touch base a little bit later on with the immunotherapy. So, when we look at the targeted therapy with estrogen receptor, anti-estrogen receptors, of course, it’s like putting you into menopause again. It’s like so you could have hot flashes, you could have some emotional liability and you could have vaginal dryness and sexual libido could be lower.  

And also you could have joint aches and pains and your bone density could go down and cause osteopenia and osteoporosis and fractures. So, those are some of the – and we can address all of those that we’ll come to later. With the HER2-targeted therapies, one of the main things will be the heart. These can affect the heart because there are some receptors that are present there that these HER2 therapies can affect the myocardial function. So, they don’t cause increase in heart attacks, but just the pumping action of your heart could go down. We keep checking your heart function to help with that. And then with the chemotherapies, other than your blood counts going down, these are acute events. Those blood counts could go down, which could put you at higher risk for infections. Again, some of the heart chemotherapies can affect the heart. So, we’ll keep an eye on that.  

And, of course, fatigue that comes with all of these treatments that can happen. But some of those chronic things that can happen is also neuropathy. So, tingling, numbness in your hands and feet, even sometimes pain in your hands and feet. And then this can stay on for a little bit longer and can cause some trouble buttoning your shirt or playing the piano or putting your earrings. So, it can affect your daily quality of life and cause pain. The other important thing, which we do have now an option is also hair loss. I know that is something hard for age. It’s so hard for women to lose hair and the consequence of being identified differently and not having that – when you look at the mirror, it’s a constant reminder.  

So, we do have something called a scalp cooling that you could take an option and discuss with your doctors whether that how helpful that’ll be for your type of chemotherapy and whether you could use it and you can – but 60 percent of the time not lose all your hair and need a wig. So, that is something that you can address. So, broadly, these are the issues that can happen. Again, this is very broad. Depending on your treatment, you still need to talk to your doctors. 

Katherine: 

How can some of these side effects be managed? 

Dr. Ramaswamy:

So, the key thing is to be first thing that I want to advise all our patients is that be vocal about your side effects. Okay? Sometimes we all think, okay, they did tell me I’m supposed to have all the side effects. I just need to keep quiet about it. That’s not what is important. And I think I did miss mentioning the GI tract changes like nausea, vomiting, or diarrhea. Again you think, oh, this is our part of all chemotherapy, I just need to keep quiet. No, that’s not the case because we actually give you anti-nausea medications before the chemotherapy. So, if it’s not effective, you need to have to tell your doctors, “Okay, this time I had a couple of sensations of nausea, but no vomiting.” 

Or “No, I was vomiting a lot.” Whatever it is. Even if  you had just nausea, it’s important to tell your doctors. If it’s diarrhea, you need to tell them. We do give you some medications, but if it’s not working, you need to tell them. And again, we always underplay the issues with sexual side effects because you don’t want to talk about that. I mean, it’s not important. No, it is important.  

It’s important for your intimacy, it’s important for your life, and it’s important for you to speak because there are supportive care therapies that we can provide. Neuropathy, again, I think your doctors will always ask you, but being vocal about it, being honest about it, and talking about it is important. So, again, fatigue.  

They are going talk to you about exercise, because exercise does overcome that fatigue. But if you’re not able to do it again, it’s honest to say, “No, but I didn’t do what you said last time.” So don’t feel bad about it. And there could be other ways we can improve your fatigue too. So, again, sharing those side effects is important and we can. We can address all of these side effects. Now, I’m not saying the minute we address these side effects it’s all going to go away completely, but they can get better. And it’s important for you to talk about it and get those supportive care measures. 

Katherine: 

Yeah, thank you for that. It’s really helpful. And it actually leads us into the next topic. Coping with emotions that come along with a breast cancer diagnosis such as anxiety and depression can be challenging. Why is it important to share emotional concerns with your healthcare team? 

Dr. Ramaswamy:

Yeah, so I think one of the things that the breast cancer patients, I mean, I would say all cancer patients, I’ll be honest, or any kind of chronic illness, fearful illness. And I think most what they – I think what hurts them most is the how isolating the journey is because despite having very close family and they might have full trust in their providers. At the end of the day, those fears, those sorrow of potential mortality and all the side effects has to be gone through them. They’ve got to go through that. And then validating their anxiety, validating their fears, validating their symptoms is so important. So, that’s why telling your patient I understand. Whatever it is, you’re going through an isolating journey, it’s hard, and I validate all your concerns that you have.  

We can’t really compare apples to apples here like patient to patient because you – we all have an inherent approach to a critical problem. And this is a critical problem that comes into your life and whatever that approach is of what – how you’re going to approach this. So, there’s no right or wrong and how she copes and you cope. And sometimes family does that and sometimes your own friends do that. Like, oh, it’s okay, but see she did well and she and you know and see how she’s coping. It doesn’t help. I think so educating the family as well to say or the spouse particularly validate their concerns, give validation and acknowledge their concerns and then say something positive to help them move forward. And I think these are important. And I think what I tell my patients is that I will never know what you’re going through if you don’t share it with me.  

And this would be both emotional and your physical and okay, I can pick some of it with your in a body language, but I can’t really pick the depth of the problems and we can address how to find solutions. The third point that’s important is there are solutions for this. It’s not like they’re going to get better completely, but we can help you. We can help you whether it’s emotional anxiety symptoms, we can find peer group that could help. We can find psychosocial counseling that can help. We can also help with actual treatment and medications that helps with depression and anxiety that we can manage better. And we can help you with your sleep because sleep is so important. And when you’re sleeping is when you start worrying about many things.  

And the same way with all your other physical side effects, there are some things that we can do. We are never going to say, “Well, put up with this. You just have to go through this to get better.” We never say that. We will try to address it in some way. Now, I do understand the limitations of what we can do and it doesn’t always get better to everybody, but if you don’t tell us, we can’t even try.  

So, it’s so important to share and sometimes sharing all this reduces the burden on you. So, and I think that’s important as well, so. 

Katherine: 

Dr. Ramaswamy, before we move on to answering questions from our breast cancer community, I’d like to touch upon the concept of shared decision- making. In your mind, what does that mean? 

Dr. Ramaswamy:

So, it is a concept that has come more lately in our lives. Even as I started, we didn’t – not that we didn’t do it, we didn’t give it a name. And I think now giving it a name always helps because we always think about it and make sure we are doing it. I think the shared decision-making is important on two levels. Sometimes we do have treatment options that are very similar as far as outcomes, so.  

It is important to understand what are the goals of the patient. Is it that even if it’s a 0.5 percent increasing their cure rate, is that their goal? Or really looking at the benefits versus the risks and versus side effects and trying to reduce the side effects and quality of life. So, I think this – those kinds of things, this will never be addressed if you don’t understand our patient and give them an opportunity to speak out what they want.  

So, I think in – and this happens in every aspect of their journey, right? So, it is important even if they say sometimes they’ll talk about sexual side effects and we talk about it and we offer some clinics. And they might say, you know what? At this point, I think I know you’ve shared with me certain ways. Let me try it and then I’ll tell you when. So, everything is the shared decision-making because that’s when we have the highest sense of compliance and to feel a sense of feeling that they’re being heard, and we are in this together. And if we are not in this together, it is almost impossible to get the best outcomes both from quality of life and also survival. So – 

Katherine: 

Yeah. 

Dr. Ramaswamy:

– that’s where the shared decision-making comes to. So, understanding the patient better and the patient understanding their outcomes better. 

Katherine: 

Yeah. Well, let’s get to a few audience questions that we received before the program. Rebecca writes, “I have skin itching as a side effect of my treatment. Is there anything that could be done to help?” 

Dr. Ramaswamy:

So, it depends on what she’s on and I’m going to assume maybe possibly like trastuzumab (Herceptin), pertuzumab (Perjeta) which are anti-HER2 therapies. They are – they can cause skin itching because they also get it for a year. So, I think the most important thing is of course discussing with your provider because is it one of these drugs that you’re on? Sometimes if it doesn’t get better with some of the – first things that we do is make sure you don’t have dry skin, that you’re ensuring that you’re putting a lot of moisturizers and addressing those. Where is your skin itching? Is there a rash associated with it.  

And so we kind of look at all of that and we can also give you some anti-itch medications if your itching is more at night when we all go to sleep. So, we can do that. And if it’s still there, then your provider can look at the pros and cons of is this drug causing it and is it worth pursuing it despite your itching, or taking it off so that it can improve quality of life. So, I think the most important thing is to make sure you talk to your doctor. And then they look at all of the others, the extent of their itching, the timing of their itching, and is there a rash, and then see whether the drug is causing and decide about holding or not holding the drug. 

Katherine: 

Okay. Good advice. Susan wants to know, have there been any advances in imaging or screening for a recurrence? And can anything be done to help prevent a recurrence? 

Dr. Ramaswamy:

So, let me answer the first question. So, we did – we have done clinical trials where patients got imaging that meaning CT scans even if they don’t have symptoms every four months, as opposed to the other group had only scans when they got symptoms. And we looked at two outcomes. One is, are they surviving longer? Because that is, of course, our primary goal. But actually, the secondary goal was, is their quality of life better? 

Katherine: 

No. 

Dr. Ramaswamy:

Many of us knew that survival is not going to improve because we understand this disease. So, you did not. The two groups do not have any difference in survival, but we were very surprised to see even the quality of life was not improved. That’s because every time you have a scan, there’s a lot of anxiety what you’re going to say. And then if there is some somewhere that could be nothing at all, now they say, I’m not sure whether it’s inflammatory or metastatic. Now you have to go and biopsy. Now the biopsy can lead to some side, I mean, some complications, or sometimes we’ll say, no, we can’t biopsy it. We’re going to watch it closely.  

Now it’s easy for me to say, and then I’ll walk out and go and see the next patient. But you are going to carry this heavy burden in your mind and think about, oh, my God, four months I’m going to wait. What if it’s grown? So, there’s a lot of anxiety that induces that we are not able to address. So, that’s why we don’t do routine imaging for all patients. But we have a very low threshold to do the imaging if you have symptoms that we are concerned about.  

And I generally educate my patients any persistent progressive symptoms. So, two-piece persistent progressive symptom. Please call, don’t even wait for the next appointment, and then we’ll move forward from that. So, as far as imaging, I can’t say that we have a better tool to identify those little mats and do something better. But like I had said before in this particular meeting, we are now looking to see whether we can find that circulating tumor cells or circulating in tumor DNA.  

And if that proves out to be good, we have some late FDA approval of a test. But if it is going to impact patients’ lives by doing this on a routine basis and we think we can start the treatment earlier and impact their outcomes, you are going to have another test that we can do, which is even simpler, which is just a blood draw test.  

So, I think we are going in that direction and we’ll know a little bit more soon. Now, your second question was, can we prevent a recurrence? So, everything that we are doing is to prevent a recurrence, right? Because if you think about it, your tumor is going to be removed by surgery, and so it’s out. And we are going to do additional radiation, which to just kind of pick those little cells if they’re left. And in certain circumstances, I would say in most circumstances we would do radiation. But we are also doing all these treatments that we talked about, chemotherapy, antiestrogen therapy. We are doing it longer. We are doing anti-HER2 therapy. We’re trying to pick those high-risk patients who didn’t respond so well. We are giving them more treatments to treat. They’re all to prevent a recurrence.  

That’s what we are doing. But the – I’m – we did talk about two other things as well. Exercising, eating right, making sure you’re not gaining weight, and making sure you’re engaged because your reduced stress and lack of – increased happiness improves good cells in your body, less inflammation in your body, all of this will help. Okay? And no doubt all of this to is to help your – reduce your recurrence. But the thing is what we are not able to say to a patient is that, okay, we’ve done all this, 100 percent you’re not going to have a recurrence. We don’t have that level of confidence in what we do. We can say you reduced your risk of recurrence, but we can’t just say you have zero chance of recurrence. That’s where we still can improve and we’ll continue to do better, so. 

Katherine: 

Thank you for those responses, Dr. Ramaswamy, and please continue to send in your questions to powerful to question@powerfulpatients.org, and we’ll work to get them answered on future programs.  

Well, to close out our conversation, Dr. Ramaswamy, I’d like to get your thoughts on where we stand with research progress. Are you hopeful? 

Dr. Ramaswamy:

Extraordinarily hopeful. I mean, and I say this like I even said before, some of the things I was skeptical about. I have to pull back my skepticism, which I’m very, very happy about. The role of immunotherapy starting to come into breast cancer, newer drugs, oh my god, therapeutics has improved our understanding of how to prevent these cancers. Picking up those high-risk patients, looking at these liquid biopsies, our understanding of genomics and precision oncology, I just have so much hopes. Management of brain mats with radiation treatments that are so targeted, improving, reducing, or mitigating the side effects with the treat – with the less treatments for those patients who have less risk. I mean, in every possible way, we are improving the way – what we are doing. Can we do better? Particularly in some areas I do want to bring it out. I think we still lag behind in health equity.  

I think still a in African American patients with the breast cancer has a higher risk of dying from breast cancer. We haven’t really impacted it as well as we can do. I think understanding the ancestry, understanding the risk, understanding the lifestyle behaviors that increases the risk of these aggressive cancers, say in African American women and in –and those are very, very important. Prevention is so much better than cure, right? So, I think a little bit better of our understanding on prevention and the liquidity. Both access and understanding the biology and treatment. Improving our clinical trial approvals. We still only even in the best cancer centers, we only approve 25 percent of our patients, 15 to 25 percent of our patients into cancer clinical trials. And look at the changes we’ve had.   

But imagine if we can put 50 percent of our patients on clinical trials, we’ll double the progress because without those clinical trials, none of these drugs can be approved. 

Katherine: 

Yeah.  

Dr. Ramaswamy:

So, what is today in a clinical trial is what is a tomorrow-approved drug. So, our understanding and talking about that becomes very, very important for us. And then I think lastly, there are some breast cancer like invasive lobular cancers that are only 15 percent that we still don’t understand as well. And so there are some more little pockets that I think we still need to understand. Male breast cancers are slightly starting to increase. We need to improve. So, there are areas we can do better, but overall, it’s absolute promising and very, very happy today. Our research is going really well, so, and it’s impacting patients’ outcomes.  

Katherine: 

Dr. Ramaswamy, thank you so much for taking the time to join us today. 

Dr. Ramaswamy:

Thank you so much for taking this to the patients. I appreciate you. So, thank you. 

Katherine: 

And thank you to all of our partners. If you’d like to watch this webinar again, there will be a replay available soon. You’ll receive an email when it’s ready. And don’t forget to take the survey immediately following this webinar. It will help us as we plan future programs. To learn more about breast cancer and to access tools to help you become a proactive patient, visit  powerfulpatients.org. I’m Katherine Banwell, thanks for being with us today. 

Will Advancing Technologies Allow MPN Clinical Trials in Patient Homes?

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Will Advancing Technologies Allow MPN Clinical Trials in Patient Homes? from Patient Empowerment Network on Vimeo.

Will myeloproliferative neoplasm (MPN) clinical trials at patient homes be enabled by advancing technologies? Experts Dr. Krisstina Gowin from University of Arizona Cancer Center and Dr. Ana Maria Lopez from Sidney Kimmel Cancer Center share their perspectives on clinical trials models that work well with remote models and an update about the hospital at home concept.

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Transcript:

Lisa Hatfield: 

Do you think that technology has progressed enough that clinical trials might allow a patient to be at home, maybe in a more remote area and monitored remotely? Whereas in the past, that same clinical trial required them to be at the facility? Do you think that we’ve progressed to that point in some clinical trials?

Dr. Krisstina Gowin: 

You bet. Yeah. I think COVID out of necessity has forced us to do that. And I have in my own clinical trials, even with pharmacologic clinical trials conducted telemedicine visits that were approved by the sponsor. So the paradigm is shifting, and particularly when it is oral therapeutics, I think that’s really accessible when they’re IV subcutaneous, I think that has different challenges. Obviously you can’t do that as remote, but when their oral therapeutics are non-pharmacologic intervention, such as our integrative interventions, I think it really lands well to a more remote experience.

Lisa Hatfield: 

Okay. And then would that require communication between the local oncologist and maybe someone like yourself, the investigator on that clinical trial to know what is going on with that particular patient? I assume that that communication would be ongoing?

Dr. Krisstina Gowin: 

Absolutely. Always.

Lisa Hatfield: 

Okay. Yeah. All right, great. Well, thank you for that information. So, Dr. Lopez, kind of a similar question for you. What are some examples of how technology is influencing cancer care right now?

Dr. Ana Maria Lopez: 

Yeah, let me just add on the clinical trial question.

Lisa Hatfield: 

Oh, Yes.

Dr. Ana Maria Lopez: 

That there’s also the opportunity. Again, there were so many things that we thought, “Oh no, we just can’t be done.” But because of the necessity, necessity is the mother of invention, we do remote consent, so that was a big deal in the past. We can also do a televisit ahead of the appointment, and screen for the cancer clinical trials, people travel large distances for studies and instead of traveling four or five hours, and then to be told, “Oh, actually you don’t meet the criteria.” To be able to do all of that at a distance, to get the records, to get the images, to review all that needs to be reviewed. And then to say yes, and not only yes, but we can also do your consent at a distance in some situations.

And then when you come, there’s actually the more substantive, perhaps even the treatment. There’s also a large movement around hospital at home and that these patients that are eligible for that would be able…with digital support, be able to get hospital level care in some cases at home. So some of that may involve infusion, some of that…again, but that visual connectivity and in the past you really had to kind of conceptualize it, and it was kind of space aging to talk about it. But we now, we’ve all done FaceTime, so I think we all really can understand what it entails, so tremendous shifts and, we want to try to keep that momentum going for our patients. So, I do think that, there’s so many ways that technology has impacted cancer care, even when we talk about the electronic record and patients accessing the electronic record and patients having the opportunity to go into a portal and to see their labs, to see their reports…

To be able to track their changes. All of that is really, really powerful. You know, patients with…the most common I think is patients with diabetes who track their blood sugar sometimes to the minute and they can say, “Oh, I ate that and now I see the impact.” So the opportunity for monitoring, the opportunity for also bringing in experts. So let’s say there’s a patient with a rare disease and the expert is elsewhere, there might be the opportunity to bring people together. We do tumor boards. That’s just part of what we do in cancer care. And also as many…there are health systems now so that it’s not one hospital, it’s multiple hospitals together where we can bring all of those folks together, bring in local expertise, regional expertise, national expertise, all for the patient’s benefit.

So there are so many ways that technology even something as simple as the note. Now this is something we experimented with and it’s still in experimentation phase, but there were these Google classes where you could interact with the patient and as I’m talking, the Google glass would record kind of the conversation and would come up with some sort of a structure for the note. So for what that encounter had been like. So there are lots of ways of how do you capture natural language in real time to really help the workflow, the documentation process. So I think there’s aspects to help the patient, to help the families, to help the clinical teams and to help everybody work together. 

Lisa Hatfield: 

Great. Thank you. And you talked about the patient portal, and I’m one of those patients at fault of seeing a lab result before my doctor saw it and calling him or sending a message via MyChart saying, “Hey, this is going up. What’s wrong with this?” So I’m sure you don’t have to mention any names. I’m sure you’ve seen the challenges of, digital health too, are having that patient portable or portal accessible to patients. So anyway, just wanted to throw that out there that I’m sure that brings challenges to you. Also few little challenges here and there.

But at the same time, that’s so good, right? It’s so good that patients are engaged. It’s so good that you’re engaged. And I think as long as we’re communicating that yes, you may see this before me, so you may have questions and then, we just get together and answer the questions. 

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What Advances in Cancer Care Relate to Digital Health?

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What Advances in Cancer Care Relate to Digital Health? from Patient Empowerment Network on Vimeo.

How has digital health brought advances in cancer care? Expert Dr. AnaMaria Lopez from Sidney Kimmel  Cancer Center discusses cancer care advances and benefits from telemedicine, remote monitoring, and the re-emergence of a traditional patient care option.

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How Has COVID-19 Impacted Myeloproliferative Neoplasm Care

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 Will Advancing Technologies Allow MPN Clinical Trials in Patient Homes

Transcript:

Lisa Hatfield: 

So, Dr Lopez, I’d like to start with you to talk about cancer care and technology and how far we’ve come with technology and cancer care. We’ve made a fair number of strides in cancer care as they relate to digital health. Can you speak to that a bit?

Dr. AnaMaria Lopez:

Sure. I always say that the COVID pandemic allowed us to advance telehealth in a couple of months what probably would have taken 70 years. So we went from maybe 10 percent of the visits being done through tele to 90 percent plus. So a huge, huge change, and a lot of lessons learned, both in the, how do we do it clinically as well as how do we integrate this? How do we integrate this into clinical trials and to move beyond? We really thought telemedicine and really thinking telehealth because there are so many technologies, so there could be monitors, there could be…a lot of us were doing work in patient-recorded outcomes, how do you integrate that? How do you make it easy for patients to use this? And maybe it’s not simply the patient, but it’s also the patient and the caregiver who can help with this reporting. What are really the implementation efforts that need to be done? I could go on and on because there are so many lessons learned, and it really shook things up. So people are thinking of this as a new technological revolution. So technology plays a big role in care and certainly a very big role in cancer care.

Lisa Hatfield: 

And just out of curiosity, Dr Lopez, do you have a lot of your patients who still continue to see you via digital health or telehealth, who prefer that?

Dr. AnaMaria Lopez: 

Yes. Yeah. For example, in some of the psychiatry literature, which I think is a little bit unexpected because you think psychiatry is such an intimate interaction. Well, a lot of patients actually feel safer when it’s digital, when it’s through tele. So yeah, I do. And we were talking earlier about doing integrative medicine, and almost all of my integrative medicine patients, we do at a distance. I really think of it as it’s a way to bring back the house call.

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MPN Specialized Care and Technology: Digital Health and Symptom Management

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MPN Specialized Care and Technology: Digital Health and Symptom Management from Patient Empowerment Network on Vimeo.

Nearly 80% of patients living with a myeloproliferative neoplasm (MPN) are affected by fatigue. Can digital health alleviate symptom burden in MPN care? What exactly is mobile app intervention, and how can it help me? Dr. Krisstina Gowin and Dr. AnaMaria Lopez discuss technological interventions in MPN symptom management, telemedicine limitations and the importance of connecting with an MPN specialist. 

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MPN TelemED Resource Guide

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 What Is the Role of Artificial Intelligence (AI) in Telemedicine for MPN

 Why Is Specialized Care Important for MPN Patients?

Transcript:

Lisa Hatfield: 

Welcome to this Patient Empowerment Network Program, I’m your host Lisa Hatfield. In this unique program, we explore cancer care and technology, specifically the importance of specialized care in myeloproliferative neoplasms, MPNs for short, and the role of digital health in symptom management. Today, I’m joined by two incredible experts, Dr. Krisstina Gowin is a hematologist, oncologist treating MPNs. I’m gonna shorten that, simplify it, treating MPNs. Dr. Gowin is Assistant Professor of Medicine at the University of Arizona. And Dr. Gowin it’s such a pleasure to connect with you.

Dr. Krisstina Gowin: 

Oh, it’s such an honor to be on today and connect with you all. Thank you so much for having me.

Lisa Hatfield: 

Also joining us is respected oncologist, Dr AnaMaria Lopez, Professor of Medical Oncology at Sidney Kimmel Cancer Centre, Thomas Jefferson University. Dr Lopez is a telemedicine pioneer as the founding medical director of the Arizona Telemedicine Program. Welcome, Dr Lopez, thank you for being here.

Dr. AnaMaria Lopez: 

Thank you so much. So looking forward to the discussion.

Lisa Hatfield: Thank you. So, Dr Lopez, I’d like to start with you to talk about cancer care and technology and how far we’ve come with technology and cancer care. We’ve made a fair number of strides in cancer care as they relate to digital health. Can you speak to that a bit?

Dr. AnaMaria Lopez:

Sure. I always say that the COVID pandemic allowed us to advance telehealth in a couple of months what probably would have taken 70 years. So we went from maybe 10% of the visits being done through tele to 90% plus. So a huge, huge change, and a lot of lessons learned, both in the, how do we do it clinically as well as how do we integrate this? How do we integrate this into clinical trials and to move beyond? We really thought telemedicine and really thinking telehealth because there are so many technologies, so there could be monitors, there could be… A lot of us were doing work in patient-recorded outcomes, how do you integrate that? How do you make it easy for patients to use this? And maybe it’s not simply the patient, but it’s also the patient and the caregiver who can help with this reporting. What are really the implementation efforts that need to be done? I could go on and on because there are so many lessons learned and it really shook things up. So people are thinking of this as a new technological revolution. So technology plays a big role in care and certainly a very big role in cancer care.

Lisa Hatfield:

And just out of curiosity, Dr Lopez, do you have a lot of your patients who still continue to see you via digital health or telehealth, who prefer that?

Dr. Krisstina Gowin:

Yes. Yeah. For example, in some of the psychiatry literature, which I think is a little bit unexpected ’cause you think psychiatry is such an intimate interaction. Well a lot of patients actually feel safer when it’s digital, when it’s through tele. So yeah, I do. And we were talking earlier about doing integrative medicine, and almost all of my integrative medicine patients, we do at a distance. I really think of it as it’s a way to bring back the house call.

Lisa Hatfield:

Yes. Well, thank you for that overview, Dr Lopez. So the pandemic has resulted in significant changes to many aspects of daily living for many of us, but for patients living with cancer like myself, there are different realities that we’ve had to deal with. Do we go in for our monthly blood draws, or do we wait a couple of months? So question for Dr Gowin, can you give us an overview of the impact that Covid-19 has had on MPNs or MPN care?

Dr. Krisstina Gowin:

Absolutely. Well, there was a really wonderful study that was done, really led out of Mayo, by Jeanne Palmer and Ruben Mesa, and it was an international study, and it looked at 1500 MPN patients. And they asked questions like, how many of you are actually having telemedicine? And this was in 2020, kind of at the beginning. And over half of them had already been engaging in telemedicine. And about a quarter of them felt that their care actually was delayed a little bit and that there were actually consequences to that delay, so that really speaks to an international kind of change in the paradigm of how we’re delivering care for MPN patients. The other thing is the lockdowns, the lockdowns that were occurring for us here in the US and really internationally. And what they did is, they asked patients their MPN symptom burden, and those that were on lockdown, not surprisingly I think to all of us, had a significantly higher symptom burden.

So I think that really speaks to that A, yes, there was a very large impact of COVID on the development of telemedicine and the need for telemedicine. But it also underscores the need for symptom management that we now have a group of patients that are having a higher symptom burden, probably likely secondary to more sedentary behavior, more anxiety, more depression, but a higher symptom burden because of COVID. And so we really need not only more therapeutics and perhaps non-pharmacologic interventions to support their symptom burden, but it needs to be delivered on a digital platform.

Lisa Hatfield:

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

Dr. Krisstina Gowin:

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

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

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

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

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

Lisa Hatfield:

Thank you for that. Dr. Gowin. So you talked about an app that patients can use. Is this app accessible to any patient or is it just within a trial or a study that you’ve done?

Dr. Krisstina Gowin:

No, it is widely accessible. It is free, even better. [laughter], it’s called my Wellness Coach. And that’s…

Lisa Hatfield:

I’m writing that down. Okay. [laughter]

Dr. Krisstina Gowin:

Yeah. Yeah. It’s really wonderful. Many domains of wellness. It’s based on motivational interviewing and smart goals. It gives you little reminders of, hey, and you set your own goals, which is wonderful.

Lisa Hatfield:

And what types of interventions then does that contain? Does it have things like you said, meditation and does it have a yoga program for patients? Or what types of interventions?

Dr. Krisstina Gowin:

Not quite yet. I think that that’s what we aspire to is really this multidimensional intervention. It’s not really an intervention. It’s looking at your life. It’s saying, “what are you eating? What are your nutrition goals? How are you moving? What are your exercise goals?”

How is your resiliency? How is your spiritual health? How are your relationships? And so it’s asking all of these domains of what our wellness is and helps to identify where perhaps you would like to devote more time and energy to, and also gives some resources and education around each of those domains and why they’re so important. But you set your own goals and then…

Lisa Hatfield:

That’s great.

Dr. Krisstina Gowin:

You’re accountable for your goals.

Lisa Hatfield:

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

Dr. AnaMaria Lopez:

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

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

Lisa Hatfield:

Great, thank you. Dr. Lopez. I do have to say with acupuncture, one of the side effects of a lot of the cancer medications is neuropathy. And a lot of patients like myself try every option, every pharmacological option, whether it’s gabapentin or something else, and they don’t work an acupuncture for me anyway, personally. I had a significant reduction in the painful neuropathy… Not so much in the tingling, but a significant reduction that, so I am very strong advocate for integrative health. So thank you for explaining that a bit more and as long as we have you on Dr. Lopez, can you also speak more broadly to innovative telehealth tools that are making an impact on symptom management and overall cancer care?

Dr. AnaMaria Lopez:

Sure. So one of the things that we know, is that for example, people have appointments every three weeks, or they have appointments once a month with the oncologist, and a lot can happen in that time. So setting up systems that are assisted by technology, so that patients can report their symptoms in real time can be very helpful. And some of this may require… It may not be a common way where the person may be familiar going to a computer or going to their phone to kind of say, “This is how I’m feeling.” So that may require some engagement education, but often regardless of age, regardless of background, people find that really easy and find that so helpful to be able to say, “Oh, was it two weeks ago that I had that?” As opposed to just saying, “Hey, I just had this,” and then it can happen anytime day or night that the patient can report. And that way there’s… It’s just so helpful to have an intervention in real time.

The other part that’s good is that often some of these systems can kind of track. So we can look at it together and say, “You know what? Your fatigue tends to be a couple of weeks after therapy, so how can we either prepare for that?” Or just to have the reassurance that, “Yes you have that depth, but it gets better and you get through it.” So being able to look retrospectively and identify that can be helpful and I think also just the ease for people to be able to connect with multiple specialists, sometimes to have multidisciplinary visits where not only does the patient meet with everyone, but the patient can see that we are all meeting and interacting together. So all of those are incredible tools, one of my favorites though, one of my favorites is patients who are in the hospital and patients who are in the hospital a long time, on some occasions. So and even if a person’s not there a long time, it can feel like a long time, so to use the technology, not just to connect the patient, the healthcare team, but to use the technology to connect the patient with his or her family. And I think especially… I mean, a lot of people have smartphones, but it’s using your minutes, sometimes the internet may not be so strong. So to use the technology that would be used for the clinical piece to have that available in the inpatient setting so that patients can feel connected.

Lisa Hatfield:

Yeah, that’s a really great thought that you brought up, too. I know when the pandemic was in full swing, but patients were starting to go back into the office to see their provider. For me, I was not allowed to take my husband in with me, so I went in alone. I was far enough along in my journey. I didn’t necessarily need a care partner with me, but some patients do, maybe a newly diagnosed patient. So that is a really great point. Say, a patient has to come in by himself or herself, is that a technology they can use? Are you willing to let them use their phone to maybe FaceTime during that call or we had to use the actual physical landline because my phone did not connect, the signal wasn’t strong enough. But do you allow that during your appointments to have patients contact somebody?

Dr. AnaMaria Lopez:

Absolutely.

Lisa Hatfield:

Okay. That’s great. Yeah.

Dr. AnaMaria Lopez:

And also there’s pandemic, but there’s also… People live everywhere. So you could say their sun could be in California and I’m in Philadelphia and this way it’s okay, we’ll just beam them in.

Lisa Hatfield:

Yes. Well, thank you for that information. And some patients might be a little more reluctant to use telehealth or telemedicine. How can patients and their care partners feel more confident in voicing their concerns or communicating with their healthcare teams regarding any telemedicine options that are out there?

Dr. AnaMaria Lopez:

So you mentioned that I had been the founding medical director of the Arizona Telemedicine Program, and it was such a wonderful experience because skepticism and I really respected that. It was brand new and we had our system in the library. And the library, it was down in the basement, so it was very metaphorical. I would meet the new clinician at the entrance of the library. We would walk down the stairs together and often, the conversation was, “Okay, I’m doing this for you. I’m doing it one time. We’ll see how it goes.” And I was always so reassuring that if for some reason,’cause ultimately the clinician needs to feel comfortable, yes, this works, or no, it doesn’t. And if you have any doubt and you feel that you need to see the patient in person, you just need to say that, I need to see the patient in person. And inevitably as we’re walking up the stairs, “Oh, I know you called me because I was on call. Just call me anytime. Don’t call the on-call person”. This was great. I loved it.

So inevitably, people really like it and it’s good. You see the patient in their own environment, you can interact. You often get insights that you may not have gotten otherwise just because of where you are and how comfortable they feel in their own space. So I think, for me it’s the proofs in the pudding. Give people the opportunity, have the right supports and technology in place and often it’s a very positive experience.

Lisa Hatfield:

Great. Thank you Dr. Lopez. So Dr. Gowin, a couple of questions for you. Is technology playing a role in accelerating progress in MPN care?

Dr. Krisstina Gowin:

Oh, absolutely. And I think some of the ways that it really accelerates progress is pulling us together. So what we need to recognize is that myeloproliferative neoplasms truly is a rare disease and we just celebrated Rare Disease day. But there’s a lot of challenge in treating patients and progressing the field forward in rare diseases because you can’t do the big clinical trials. It’s hard to come together ’cause everything’s siloed and there’s just a couple patients here, a couple patients there in each practice. But with digital health and clinical trials that are offered on a digital platform, it pulls the nation together and even the world together. And we’ve seen that. I’ve done a international survey-based analysis and I had 858 MPN patients from 52 countries participate in that survey. And so that just shows how it pulls the world together. And for the web app that we just discussed, we had 93 patients say they were interested within three weeks, and within actually a week, we identified them all and then took three weeks to actually accrue them to the trial. So it really speaks to A, how MPN patients are digitally engaged and excited about these kinds of platforms. And then B, how effective it really can be to pull the groups together.

So yes, I think it’s… And that’s really how we’re gonna get progress is through these kind of interventions with a rare disease. And I hope it’s okay if we jump back to something you said, Dr. Lopez, which is, I think telemedicine is so so important to bring everyone together. And in particular, I see that on the transplant ward. And so in myelofibrosis, that’s the only curative therapy. And so many myelofibrosis patients actually go through allogeneic stem cell transplantation. And my goodness, that is a socially isolating experience. Patients are in the hospital, not uncommonly for at least 30 days and then have to be near their transplant center for three months, which often is away from home. So to pull in their support system, both through the acuity of the transplant themselves and then the couple of months after is so crucial to a successful transplantation. And I think through FaceTime and also the MPN support groups, which is very robust, the patient advocacy and the way the MPN network sticks together on a digital platform, I think is really unique and offers unique support.

Lisa Hatfield:

Thank you. And then what role does technology play in the disease symptom management, and in particular, in clinical trials too. What role does technology play with clinical trials?

Dr. Krisstina Gowin:

Well, I think it helps us through different, clinical trial accrual patterns, we can see who’s eligible where, so it helps us identify patients. It helps us to, understand the different kind of precision based medicine approaches so we can start to pool the data, say for, particular mutations… ASXL1 mutations. And so it helps us in the precision medicine aspect of clinical trials and now we’re looking at symptom management and how do we really integrate that. So large survivorship platforms like Carevive, if you’ve ever heard of Carevive, is now integrating our validated symptom assessment form into the Carevive platform. So now we can really collect that data and use that to mine it for potential kind of retrospective analysis. So it’s helpful for clinical trials as well as for our clinicians and clinics to really identify changes in symptom burden.

And just as Dr. Lopez was mentioning, that we can track these over time and it can flag and say, “Oh, your symptoms are changing, they’re increasing over time,” and maybe we need to be thinking about that. And so Carevive is really kind of a electronic medical record driven it’s really a healthcare driven platform, but now there’s patient ones too. And I just learned about this two weeks ago, I was at an MPN conference in Phoenix and learned about MPN Genie. And so MPN Genie apparently is tracking… Patients are putting their symptoms in and that’s shooting that information to the electronic medical record to their doctors. And so I think that’s fantastic, ’cause, we now get that information real time and we can change our clinical management, maybe bring that patient in sooner, maybe do a bone marrow earlier. We never would’ve identified that if it weren’t for those kind of digital engagements, so I think it’s a really exciting time. And I think we’re gonna see more and more of these new platforms and ways for different EMRs and smartphones to be communicating back and forth between patients and providers.

Lisa Hatfield:

Great. That MPN Genie is fascinating to me that we can have that real-time communication going back and forth as a patient, I would love that. So going back to clinical trials, I’m curious if you think that, technology has progressed enough, so in the past… Say I’m an MPN patient or a myeloma patient, I see a clinical trial or hear about one, I have to be onsite for that clinical trial for monitoring maybe for six months to a year. Do you think that technology has progressed enough that clinical trials might allow a patient to be at home, maybe in a more remote area and monitored remotely? Whereas in the past, that same clinical trial required them to be at the facility? Do you think that we’ve progressed to that point in some clinical trials?

Dr. Krisstina Gowin:

You bet. Yeah. I think COVID out of necessity has forced us to do that. And I have in my own clinical trials, even with pharmacologic clinical trials conducted telemedicine visits that were approved by the sponsor. So the paradigm is shifting, and particularly when it is oral therapeutics, I think that’s really accessible when they’re, IV subcutaneous, I think that has different challenges. Obviously you can’t do that as remote, but when they’re oral therapeutics are non-pharmacologic intervention, such as our integrative interventions, I think it really lands well to a more remote experience.

Lisa Hatfield:

Okay. And then would that require communication between the local oncologist and maybe someone like yourself, the investigator on that clinical trial to know what is going on with that particular patient? I assume that that communication would be ongoing?

Dr. Krisstina Gowin:

Absolutely. Always.

Lisa Hatfield:

Okay. Yeah. All right, great. Well, thank you for that information. So, Dr. Lopez, kind of a similar question for you. What are some examples of how technology is influencing cancer care right now?

Dr. AnaMaria Lopez:

Yeah, let me just add on the clinical trial question.

Lisa Hatfield:

Oh, Yes.

Dr. AnaMaria Lopez:

That there’s also the opportunity. Again, there were so many things that we thought, “Oh no, we just can’t be done.” But because of the necessity, necessity is the mother of invention, we do remote consent, so that was a big deal in the past. We can also do a tele visit ahead of the appointment, and screen for the cancer clinical trials, people travel large distances for studies and instead of traveling four or five hours, and then to be told, “Oh, actually you don’t meet the criteria.” To be able to do all of that at a distance, to get the records, to get the images, to review all that needs to be reviewed. And then to say yes, and not only yes, but we can also do your consent at a distance in some situations.

And then when you come, there’s actually the more substantive, perhaps even the treatment. There’s also a large, movement around hospital at home and that these patients that are eligible for that would be able… With digital support, be able to get hospital level care in some cases at home. So some of that may involve infusion, some of that… Again, but that visual connectivity and in the past you really had to kind of conceptualize it and it was kind of space aging to talk about it. But we now, we’ve all done FaceTime, so I think we all really can understand what it entails, so tremendous shifts and, we wanna try to keep that momentum going for our patients. So, I do think that, there’s so many ways that technology has impacted cancer care, even when we talk about the electronic record and patients accessing the electronic record and patients having the opportunity to go into a portal and to see their labs, to see their reports…

To be able to track their changes. All of that is really, really powerful. You know, patients with… The most common I think is patients with diabetes who track their blood sugar sometimes to the minute and they can say, “Oh, I ate that and now I see the impact.” So the opportunity for monitoring, the opportunity for also bringing in experts. So let’s say there’s a patient with a rare disease and the expert is elsewhere, there might be the opportunity to bring people together. We do tumor boards. That’s just part of what we do in cancer care. And also as many… There are health systems now so that it’s not one hospital, it’s multiple hospitals together where we can bring all of those folks together, bring in local expertise, regional expertise, national expertise, all for the patient’s benefit.

So there are so many ways that technology even something as simple as the note. Now this is something we experimented with and it’s still in experimentation phase, but there were these Google classes where you could interact with the patient and as I’m talking, the Google glass would record kind of the conversation and would come up with some sort of a structure for the note. So for what that encounter had been like. So there are lots of ways of how do you capture natural language in real time to really help the workflow, the documentation process. So I think there’s aspects to help the patient, to help the families, to help the clinical teams and to help everybody work together.

Lisa Hatfield:

Great. Thank you. And you talked about the patient portal and I’m one of those patients at fault of seeing a lab result before my doctor saw it and calling him or sending a message via MyChart saying, “Hey, this is going up. What’s wrong with this?” So I’m sure you don’t have to mention any names. I’m sure you’ve seen the challenges of, digital health too, are having that patient portable or portal accessible to patients. So anyway, just wanted to throw that out there that I’m sure that brings challenges to you. Also few little challenges here and there.

Dr. AnaMaria Lopez:

But at the same time, that’s so good, right? It’s so good that patients are engaged. It’s so good that you’re engaged. And I think as long as, we’re communicating that yes, you may see this before me, so you may have questions and then, we just get together and answer the questions.

Lisa Hatfield:

And thank you for saying that Dr. Lopez, because a lot of us patients who do that occasionally feel a little bit guilty for sending a note right away to our doctors. “We know you’re busy. We know you’ve already, you’ll look at those labs. If you’re concerned, you’ll call us or let us know”. And sometimes we jump the gun a little bit. So thank you for reassuring us that that’s okay, that that’s okay to do that. So we appreciate that. So Dr. Gowin, do you have anything to add on, how MPN care or just cancer care in general could change with different technologies? We didn’t touch a lot on things like artificial intelligence and that type of thing, and we can speak to that or, any other type of technology that you’re familiar with.

Dr. Krisstina Gowin:

Well, I think the artificial intelligence aspect is really going to change the paradigm again on how we’re designing, studies. And I think one of the biggest challenges that we have in myeloma and as well as myeloproliferative neoplasms, is to think about how do we optimally sequence our therapies to achieve best survival, right? And I think this is a wonderful problem to have. We have now not only one JAK inhibitor on the market, but several and more in the pipeline and several other therapeutic targets. And so now the question is which therapy and when do we employ it? So things like artificial intelligence will help us to answer that question with machine learning decision tree analysis, all of that is going to be answered through those kind of platforms. And so I think that is going to be a shift we will see in the next five years is many different machine-based learning algorithms to better understand those problems we cannot have tackled traditionally otherwise.

Sensors though is another one, right? And so a big thing in MPNs is not only addressing the blood counts and reducing risk of thrombosis, and to address symptom burden, but it’s really addressing lifestyle because it’s things like cardiovascular disease, stroke that really we’re worried about as some of the sequelae of having the disease and what we’re trying to prevent with therapeutics. And so even going back to this NCCN guidelines, it’s addressing cardiovascular risk factors as part of our core treatment goals. And so how do we really do that? And it’s really through lifestyle medicine and that’s where the sensors come in. And so now we have, these Fitbits and smartphones that connect to our Apple watches and we have Garmins and all these wonderful devices that are prompting us to move more, prompting us to be cognizant of our heart rate and stress response prompting us to meditate. And so I can envision those evolving over time and connecting to the EMR and being very seamlessly interwoven into our clinical trials. And we’re already doing that. In fact, we’re talking about doing one very soon in MPN patients. And so I think the sensors are gonna be another big way that we’re going to be integrating, into our clinical trials and symptom management tools.

Lisa Hatfield:

That’s fascinating. Thank you for that. And Dr. Lopez, do you have anything to add about other technologies and how they may affect cancer care in the future?

Dr. AnaMaria Lopez:

Sure. When Dr. Gowin mentioned the sensors, it just reminded me, we’re building this new building, patient care building and oncology will be there. And I did a tour recently, and we’re used to going to the doctor, you stop in, they get your blood pressure, they get your weight, et cetera. Here, you’ll walk in directly to your exam room and you check in at a kiosk, so you just kinda check in [chuckle] with a little robot kiosk, and then it’ll tell you where you’re going. You’ll go to Room 3, let’s say, and Room 3 will say, “Welcome, Lisa.” [chuckle] And so you know that you’re in the right place. And you’ll walk in, there’s your gown, you’ll sit in the exam chair, and the exam chair automatically is gonna take your vital signs. So it just seems, really these built-in aspects to the technology. And one of the things, again, what I just love about this work is that it’s a very interdisciplinary, multidisciplinary. And one of the projects that we were working on, which it ties into this, when I was in Arizona with the telemedicine program is we worked with the College of Architecture and with this concept of smart buildings.

So it’s kinda like that. Why should you do these different sensors that detect, but that it could also detect. You might walk into the room and you might be really nervous as you might be really cold, and it would detect that and it would warm the room for you. Or you might be coming in and be having hot flashes and it would just cool the room for you. So the technology has so much potential to really improve the patient experience.

Lisa Hatfield:

And that’s amazing to me. I think that would be incredible to walk into a building to have that experience, as long as it doesn’t take away the compassion and care I get from my providers. I am so fortunate to have extraordinary providers, so I don’t think it will ever take over that aspect of it, I think that is a fear people have, especially with artificial intelligence and that type of thing, I think it can only go so far. Can’t provide the humanness that’s required for patient care, so yeah.

Dr. AnaMaria Lopez:

Yeah. These are tools.

Lisa Hatfield:

Yes, that it. Great, well, thank you very much. Dr. Gowin, can you provide or share some examples of how telemedicine is influencing personalized medicine and MPN care, and how can MPN patients best advocate for themselves to get the latest in MPN care?

Dr. Krisstina Gowin:

Well, I think it’s going back to some of the conversations we’ve already had, is that now with telemedicine, you can really access academic centers no matter where you are. And so rural areas now can go to academic centers, very accessible without travel, and so what that lends to is more access to precision-based clinical trials, and very often now we’re doing next generation sequencing panels for patients with MPN. We’re looking at what are the genetic features of the disease and we may be accruing trials based on those genetic features. And so that kind of conversation really only happens at academic centers, and so I think it’s really allowing those that live far away, a few hours away, to really have those personalized and precision-based conversations. And then tying in again the aspect of integrative medicine. And then what is integrative medicine all about is personalizing your treatment plan, asking what are your goals, what is your lifestyle, what is your culture, and how do we really get you on a plan that makes sense for you, that is local for you and sustainable for you to really achieve your optimum wellness?

And so if I were counseling patients listening to this, I would say, start with the in-state academic centers and say, “What are the telemedicine services there? Is there an integrative medicine department there”? And then get a quarterback within that department and say, “Okay, this is the plan”, and then that quarterback can say, “Well, now let’s look local. What do you have? What are your resources there? Let me do some homework with you and hook you up with really evidence-based high quality providers to achieve your personalized needs in your local community”. And I think that’s how we’re really going to get all of our patients in a precision and personalized approach no matter where they live, and that’s again, the beauty of telemedicine and digital health.

Lisa Hatfield:

Great, thank you, Dr. Gowin. And I know we’ve spoken, both you and Dr. Lopez have spoken to all of the rewards of telehealth. Are there any risks or drawbacks that you see to telehealth or telemedicine for digital health?

Dr. AnaMaria Lopez:

The most important thing is to remember that the technology is a tool, and if the person feels that there’s a limitation, so for example, if the patient is seen and they say their heart is racing or skipping beats or something, now, there are ways, there are electronic stethoscope, so you can really do a full exam except for palpation through telemedicine. But not everybody has that even in a clinic, but certainly in our own home, we don’t have that technology. So if a patient is expressing a concern for which the clinician really feels that needs a closer evaluation, then that’s the right next step, so we’re not… The technology is a tool to help us care for people, and if it’s not all available right there, then we need to see the patient in person. So I think that’s the risk is just sometimes people may feel limited like, “Oh, well, I’m not really sure.” It’s okay, I’m not really sure I need to see you, or you need to go here or go there for the care.

And the other, which is a really big threat, is that part of the reason we did 70 years work in a couple months is because it was reimbursed and we’re reaching the end of the pandemic, the federal… And with that, the payers may go backwards. We all know that if that happens, we will go backwards in telemedicine. [chuckle] There will just be decreased, decrease use. And it may lead to people then going back to traveling four hours, waiting, only to be told, “Oh, you know what? There’s not this. This clinical trial doesn’t work for you.” So we don’t want to lose ground. And part of not losing ground is that we really need to continue to have advocacy around reimbursement.

Lisa Hatfield:

Thank you, Dr. Lopez. And I feel compelled, just to follow up with one more question regarding that, because I’m very passionate about this. With some of these rules and guidelines coming to an end, I know in my particular state that I will no longer be able to access my specialist. I see a myeloma specialist. We do not have any here locally. I can access a specialist via telemedicine. I will not have that opportunity. So as all of us know, there are disparities and there are financial disparities in cancer patients. There are racial disparities in cancer patients, there are socioeconomic disparities. Telemedicine has been a tremendous… Has had a tremendous impact on the care and the outcomes and the quality of life of so many patients. So as a patient and as an advocate, do you have any recommendations? Do I go to my doctor and say, “Okay, how can I move forward and still talk to my specialist, who’s out of state? Do I go to my state legislature? Do I talk to my insurance company? How can we get this to continue?” Because this has had such a significant impact on the quality of life and on the outcomes for patients, who otherwise, would not have been able to access that care.

Dr. AnaMaria Lopez:

Yeah, I mean, I think all of the above. Partnering with other advocates, the American Telemedicine Association has a map that kind of says where are all the shifting sands regarding the different rules and legislative changes. But I think it’s led us to a place, where we are all advocates and where physicians, nurses, patients, pharmacists, everybody in the same way that we do team-based care, that we do team-based advocacy and it’s all for our patients.

Lisa Hatfield:

Great. Thank you for that. Dr. Gowin, any last words that you may have about accessing specialists or telemedicine options?

Dr. Krisstina Gowin:

Well, I think we covered the basics, but I just wanna end with just how empowering the access to digital health interventions really is. And so I don’t think there is a one size fits all approach to every patient. So what I would encourage patients to do is just to really think, “How do I compliment my care? What am I missing? How do I achieve my best wellness? And how do I get those resources in my home to make them more convenient for me?” And to start doing some research and self-advocacy to really get those resources ’cause they are out there and in almost… In every domain, there is now a digital version that is accessible to you now.

Lisa Hatfield:

Thank you for that. So it is time to wrap up our program. I could ask you many more questions. From a patient perspective, it has been so refreshing to take a minute to understand how far we’ve come and to have a look at the exciting innovations ahead. As always, we appreciate all the new tools being added to the toolbox, and I am eternally grateful for Dr. Gowin and Dr. Lopez and all providers who are willing to come on these webinars and answer questions from patients. It is so empowering to us, and we’re so appreciative of your time and your energy and your expertise. So thank you so much for being here today. And just a reminder to all patients, to always consult with your medical team about what is right for you. Thank you again so much to Dr. Lopez and Dr. Gowin for joining us for this Patient Empowerment Network program. I’m Lisa Hatfield. Thank you.

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