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HCP Roundtable: Overcoming Practice Barriers to Enhance Small Cell Lung Cancer Care

How can healthcare providers overcome practice barriers to enhance care for patients facing small cell lung cancer (SCLC)? Dr. Nagashree Seetharamu from Northwell Health and Nurse Practitioner Beth Sandy from Penn Medicine explore actionable clinical approaches and strategies to address the unique challenges in SCLC care.

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Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients Program. I’m Dr. Nicole Rochester, founder and CEO of Your GPS Doc. EPEP is a Patient Empowerment Network program that serves as a secure space for healthcare providers to learn techniques for improving physician-patient communication and to overcome practice barriers. How can healthcare providers overcome practice barriers to enhance care for patients facing small cell lung cancer? What strategies can be implemented to ensure that patients with extensive stage small cell lung cancer have access to participate in clinical trials and to receive cutting-edge therapies?

It is my privilege to be joined by Dr. Nagashree Seetharamu of Northwell Health. Dr. Seetharamu is an Associate Professor of Medicine at the Donald and Barbara Zucker School of Medicine at Hofstra Northwell Health, and has established a reputation at the national level through her active involvement and leadership within influential oncology organizations that steer the direction of clinical cancer care and research across the United States and globally. Thank you so much for joining this EPEP program, Dr. Seetharamu.

Dr. Nagashree Seetharamu:

Thank you.

Dr. Nicole Rochester:

It is also my honor to be joined by Ms. Beth Sandy, a thoracic oncology nurse practitioner at the University of Pennsylvania Abramson Cancer Center. In addition to regularly presenting at several national and international nursing and thoracic oncology meetings, Ms. Sandy has published in a number of peer-reviewed medical and nursing journals. Thank you so much for joining this EPEP program, Ms. Sandy.

Beth Sandy:

Thank you for having me.

Dr. Nicole Rochester:

I’d like to start our discussion by talking about current practice barriers in small cell lung cancer care. So I’m going to start with you, Dr. Seetharamu. What are the barriers to implementing patient-centered care in the management of small cell lung cancer, and what are we learning from the existing evidence?

Dr. Nagashree Seetharamu:

Yeah, thank you. It’s a great question. I would start by saying that I think the first thing is really limited treatment advances compared to other types of cancers and clinical trial access. So compared to other types of cancers, including non-small cell lung cancer, we have very, you know, fewer options. Patients, despite all the advances, the outcomes are still suboptimal. Many of our patients present with very advanced disease and have multiple other comorbid conditions. So it makes it difficult to deliver optimal care or to enroll patients in clinical trials. In addition, we do know that palliative care improves outcomes in non-small cell lung cancer. We do not have this data as much in small cell, and there is a stigma around it. People do not avail palliative care options, which are perhaps most appropriate for patients with small cell lung cancer.

Lastly, I think there’s also streamlining the processes. We do have the low dose CT scan, lung cancer screening, fewer patients avail it. With increased availability, increased acceptance and increased uptake, probably we can see more small cell lung cancer cases in early stages that will ensure cure.

Also, there are many of our patients with small cell lung cancer have lapses in supportive, you know, social support, and that’s something that we are working with. There’s also quite a bit of disparity when we talk about small cell lung cancer, and that’s been extensively published. So delays from screening to diagnosis to treatment.

Dr. Nicole Rochester:

Thank you so much, Dr. Seetharamu. So given those barriers that you just outlined for us, how can healthcare providers overcome those practice barriers to actually enhance care for patients facing small cell lung cancer?

Dr. Nagashree Seetharamu:

So I think there…I have a few ideas, a few suggestions. I think first and foremost, is to make sure that the screening program is well-adapted. We still see less than 10 percent of patients being screened, so that is something important. Hand in hand with that is tobacco cessation. So decreasing the incidence, early detection is number one and number two for sure. In addition to that, once patients are diagnosed and are presenting, you know, improving the, or having streamlined processes for diagnosis from the patients enter care to the time they start treatment, reducing the time to treatment is extremely important.

We are really kind of sitting on a time machine, you’re really trying to get things done in a very quick order. So streamlining the processes, whether the patient is in the hospital or presents as an outpatient. Lastly, making sure that clinical trials, if they’re available, making sure that patients are screened for it, making clinical trials available to patients, making criteria broader so that patients can be enrolled. And then ensuring that everyone within a particular health system or network is aware of recent advances, and patients get optimal care wherever they are located throughout the country.

Dr. Nicole Rochester:

Thank you very much. I’m going to turn to you, Ms. Sandy. As a nurse practitioner in this space, what is your perspective regarding the primary barriers to accessing effective patient-centered care for small cell lung cancer? And then similarly, what are some strategies that you believe can be implemented to overcome these barriers?

Beth Sandy:

Thanks, Dr. Rochester. I think Dr. Seetharamu covered a lot of the barriers really, it’s getting patients to treatment quickly. As we know, this disease is very aggressive. So, this is not a disease where a patient might say, “Well, I have a two week trip to Europe planned. I’d like to go there and then start treatment.” Actually, in non-small cell lung cancer maybe, but in small cell lung cancer, it’s so important to get them started very quickly on treatment because of the aggressive nature of the disease. And it is a very chemo-sensitive disease, so they may feel better very quickly.

One thing that we do in our practice is if we see that a patient is coming in who’s newly diagnosed with small cell lung cancer, whether it be extensive or limited stage, many times our nurse navigator is looking at this in advance and we’re pre-starting the chemotherapy before they even get there. Because many of these regimens are a three-day regimen, so we want to make sure that our next three days are available for infusion that we get this patient started right away.  So sort of looking ahead can be really helpful, especially if the patient’s coming on a Thursday or Friday, we’re not open generally on the weekends to give chemo, so we’ll make sure that we get them scheduled that following week. Again, getting these patients to treatment very quickly can help them feel better quickly.

Dr. Nicole Rochester:

Wonderful, thank you both. So I’m going to go back to you, Dr. Seetharamu. What are the gaps in current research regarding patient-centered care in small cell lung cancer, and how can these gaps be addressed?

Dr. Nagashree Seetharamu:

Yeah, I think I alluded to this a little earlier, but the…mean, this is kind of a pitch for funding agencies. I think the funding, first of all, it starts there. I think the funding that is available for other types of cancers perhaps is not so much for small cell. Despite decades of extensive research, we are still kind of stuck in the same regimen that we used to use decades ago, with a few modifications. So, first of all, novel treatment ideas, novel treatment regimens definitely can be hugely beneficial for these patients.

Secondly, it is also making sure that patients are actually able to get enrolled in the studies. A lot of these studies are overly exclusionary for reasons that it shouldn’t be. And, for example, if a patient receives a treatment as inpatient, like Ms. Sandy said, a lot of our patients get treated in the hospital, and they get excluded from the first-line regimens many times. So that’s something that can be accommodated. Clinical trials should be tailored around real world experience, not just based on what might be beneficial in preclinical models or some early experience. That’s the second thing.

Thirdly, I think small cell lung cancer, while we use the same term, I think it’s a heterogeneous disease. Using biomarkers to kind of stratify patients or subgroup patients, and then tailor regimens specific to, for example, when a transformed small cell lung cancer, when non-small cell lung cancer transforms to small cell, it’s still small cell lung cancer. From a histological perspective, it looks very similar, biologically it’s a very different disease. So I think it is important to kind of stratify or differentiate those subgroups and then create clinical trials that are more specific, you know, patient-centric like you mentioned. And I think lastly, mostly it’s important to make sure that the disparities are addressed. The socioeconomic disparities, racial barriers are addressed while we are talking about small cell lung cancer research. I think it should be an integral part of every clinical trial.

Dr. Nicole Rochester:

Absolutely. Thank you for highlighting that, Dr. Seetharamu. So, Sandy, we’ve been talking about the barriers that patients face with regard to treatment. Can you speak to some of the obstacles or barriers that are faced by healthcare providers with regard to treatment for small cell lung cancer?

Beth Sandy:

Yeah. Well, there are a couple ways to look at it. First, if you just look at a clinical trial perspective, sometimes it’s hard for us to enroll patients with small cell lung cancer for several reasons. You know, when we enroll in a clinical trial, a lot of times we need to wait for a slot to open. Well, we don’t have time to wait for a slot when they have small cell lung cancer. Again, it’s a very aggressive disease that’s rapidly moving. So we run into this barrier all the time here because they’ll say, “Well, I have a slot that opened up in three or four weeks or four weeks.” I don’t want to wait that long to treat my patient. So I think when we design these trials, we have to think about those kinds of things.

Another point of putting patients on clinical trials is a lot of trial ineligibility criteria is for patients with brain metastases, but in small cell lung cancer, we know that like up to 75 percent of them are going to develop brain mets over the lifetime of their disease. So it’s not really a real world trial if we exclude patients with brain metastases. So we need to design our trials in a good way.

There are a lot of other barriers that we end up facing. Some of the treatments for small cell lung cancer, especially a very new treatment that’s a BiTE therapy, a bispecific T-cell engager, is very hard to administer. It requires an overnight admission for the first two treatments, it has taken us actually a pretty long time to operationalize how we were trying to give this, so it’s not easy. And we finally have figured out how to give this, but this is a drug that holds a lot of promise for our patients, but it is hard for us to administer, and it’s hard for patients as well, because then they have to say, “Oh, I have to block off an entire day for this.”

So, some of these treatments are not easy. Most treatments for small cell lung cancer are not fancy targeted therapies that can minimize toxicity. These are chemotherapies that can cause nausea, fatigue, lowering of blood counts, the majority of the treatments. So if our patients aren’t healthy, robust, and able to deliver, or we can deliver the treatment, but they’re not able to handle the treatment, that’s also worrisome and can cause a barrier for us. So they’re not easy treatments. We need to really do our best to help support the patient and help figure out from an operationalization, there I made up a word, [laughter] but standpoint on how we can administer these safely, but in a quick, efficient way to these patients.

Dr. Nicole Rochester:

Thank you, Ms. Sandy. So both of you have really done a great job elaborating the many barriers. The barriers that patients face, the barriers that healthcare providers face. Are there any tactical strategies or things that either of you or your institutions have done to actually address some of these barriers, some of the challenges that you all have mentioned?

Beth Sandy:

I mean, for us, our nurse navigator is huge. She is a dedicated lung cancer nurse navigator. She’s looking at these patients in advance, when they’re new patients and really trying to say, okay, if they have small cell, we need to get them in quickly. You know, if our new patient wait is two weeks, she’ll say, “Well, this one needs to be prioritized. We need to see them within a week.” She’ll say, “We need to make sure that we have the ability to treat them within a week. We want to really get on top of that quickly.” So that’s been, I think for us, one of the biggest helps with small cell lung cancer.

Dr. Nicole Rochester:

Wonderful. You have anything to add, Dr. Seetharamu?

Dr. Nagashree Seetharamu:

Yeah, I mean, it’s… similarly I think our navigator program is extremely helpful. In addition to that, I think, I know with the bispecific that was mentioned, you know, the tarlatamab-dlle (Imdelltra), we have a process in place, where it’s very streamlined, patients get admitted. The whole protocol is in place for admission and then subsequent treatment as outpatient.  With larger centers where there are multiple, larger institutions with multiple centers that might be a little smaller and not able to monitor patients while they’re receiving this treatment, we have adapted this approach where the first two treatments are given at the main hub, and that’s also been adapted by a few other institutions in the neighborhood where they refer the patients to us just for those first two infusions and when patients are settled and ready to continue the treatment, they’re able to continue it in a more community-based setting.

So that’s something I think that can be done in those regions where patients are referred to places where you can call hubs where these treatments can be initiated and then continued in their regional places so not to inconvenience the patients.

I think for this particular cohort of patients, social work involvement is extremely helpful, in addition to addressing the support systems, transportation assistance, financial support systems, and then involving palliative care early on has been something that has been extremely helpful. This is a multidisciplinary disease, despite that the majority of the patients are on systemic treatment, it is a multidisciplinary disease. We have multiple, we touch minor patients, touch multiple departments. And again, the role of nurse navigator is extremely helpful, because they can help make sure the patients are not inundated by these appointments.

Dr. Nicole Rochester:

Thank you both. Thank you very much for sharing that. So we’re going to shift a little bit and talk about strategies and innovations that may offer enhanced care for patients and families facing small cell lung cancer. We know that survival outcomes in small cell lung cancer remain challenging as both of you have pointed out, particularly for those with extensive stage small cell lung cancer despite incremental improvements in treatment strategies. For your colleagues that are watching this program, what are some strategies and innovations that may offer improved survival outcomes? Now I’ll start with you, Dr. Seetharamu.

Dr. Nagashree Seetharamu:

I think having your group in place, identifying the providers that are dedicated to this disease. Making sure there are processes in place from early diagnosis through the treatments and seeing multiple providers is in place. Making sure that every treatment, there’s a pathway attached to it, there’s a protocol attached to it so that we are not scrambling last minute. Like Ms. Sandy said, it’s the same issue. It’s a three-day regimen. The first line, we want to make sure that, you know, the treatment starts. We are open on Saturdays too.

So, you know, it has to be Monday through Thursdays. You know, simple things as that may become very challenging. In patients with the brain metastases, making sure that they see the providers also in a very timely fashion. Sometimes the urgency may not be realized by other providers, because they’re not used to just seeing small cell lung cancer patients. Just making sure that that is communicated with teams. Yeah. I mean, just streamlining the processes as much as possible. Empowering the patients to understand their disease and making sure that they ask the right questions and be, you know, willful, you know, like complete participants, partners in the care, are some of the strategies that I can think of.

Dr. Nicole Rochester:

Thank you, Dr. Seetharamu. And certainly with this being in Empowering Providers to Empower Patients, we love that you included that, having the patients as partners. Do you have anything you’d like to add, Dr. Sandy…do you have anything you’d like to add, Ms. Sandy?

Beth Sandy:

You know, I think looking ahead for clinical trials, new drugs, it’s been really hard in small cell. We don’t have nearly the advances that we’ve seen in non-small cell lung cancer as far as any targeted therapies. Dr. Seetharamu talked about this earlier is that maybe we could figure out some of these different subgroups by looking at their pathology and seeing if some of them may respond differently to certain agents. I’m hopeful about some new drugs that are coming down in the pipeline.

There is an anti-TIGIT agent combined with immunotherapy that looks hopeful, that could produce some good outcomes. Combining immunotherapy drugs, combining them with chemotherapy, you know, potentially down the line we’ll see some of these drugs that will get approvals in small cell lung cancer and improve some of our progression-free survivals and hopefully overall survivals. So just continuing to enroll patients on studies. Have studies designed to fit this patient population, which we’ve significantly lacked in the past 30 years in small cell lung cancer.

Dr. Nicole Rochester:

Thank you. Thank you, Ms. Sandy. And you brought up the clinical trials, and so on that same topic, Dr. Seetharamu, do you have anything to add with regard to really improving access to clinical trials for patients with small cell lung cancer.

Dr. Nagashree Seetharamu:

Yeah. I think bringing clinical trials to the communities is perhaps the biggest way to do it. You know, patients with small cell, many can travel, but there are many that cannot.  So it’s important to understand that making it easier for patients to know what trials are available. Right now the options that we have, the websites that we have, it’s hard even for a provider to kind of navigate through it. Making it easier. Advocacy groups, you know, ensuring that patients are tied to advocacy groups, because they get a lot of information from these groups. It’s important. And I encourage patients to join these groups, because it empowers them and kind of unifies their voice.

There are clinical trials that are looking at doing labs at home or in their local centers, so they don’t have to travel all the way to the main center to get the labs done. That can be a huge help for patients. And again, making sure that clinical trials, when they’re designed, they are adaptable to real world, you know. And Ms. Sandy brought this up before, we don’t want trials that only address the cream of the…you know, like just a small proportion of patients. It should be really viable for the larger community. Yeah. I mean, these are some…I am sure there are many other things that can be done, but I think this would be a good start.

Dr. Nicole Rochester:

As we move to our final topic, I’m going to go to you, Ms. Sandy. We’re going to talk about outdated clinical approaches. How can interdisciplinary care teams and integrated care models be optimized to better address the specific needs and gaps in the management of patients? And what are some successful examples of these models in practice?

Beth Sandy:

So when I think of outdated clinical approaches, I think of things like older chemotherapy regimens or ways that we used to manage toxicity that have changed. So, for example, when I started doing this 20 to 25 years ago, we had two drugs, and that was it. There was nothing else really, and you could throw some other chemotherapies, but, you know, really now we have approved agents that have improved survival, so we need to make sure we’re using the right thing. And then I think the other flip side of that is our ability to manage toxicity. Again, we have much better ways to manage things like nausea, things like neutropenia, even fatigue.  We have better ways of predicting and managing these things now than what we used to have.  So we need to make sure that our supportive care is also maximized so that the patients can stay on treatment, because small cell lung cancer is one of the diseases where treatment is really important, that they’re getting as much of the chemotherapy as possible and on time.

Whereas in non-small cell lung cancer, I may be a little bit more, you know, okay with them taking a trip or being delayed or things. But because this is such a chemo-sensitive disease, it’s really important for us, if they want to be aggressive, to make sure that we are maximizing our toxicity management. Otherwise, they’re not going to be able to get these treatments.  And that’s gonna definitely worsen their outcomes. I think also is discussing goals of care with patients. And I think there’s been a big push in the past 10 years with the early palliative care integration into our lung cancer practices. This is another thing that’s really important here, that we are having real conversations with our patients about the goals of their care. With extensive stage small cell lung cancer, our average survivals are a year or two even with treatment.

So, you know, I don’t need to say to a patient on the first visit, like, you know, this is the exact numbers, because I don’t want patients to perseverate over, you know, exact numbers. But I also think it’s important to say, you know, this is something that we can’t cure, and we’re going to try to manage it as long as possible, but it’s an aggressive disease.  So, you know, what are your…what’s important to you? What are the goals that you would like to see? And that would give an open-ended question for patients to say, well, I’d like to be alive in 10 years for this. And when they say something like that, that might be an opportunity to say, well, I hope that that can happen, but I’m really worried with what we know about this disease, that that might not be, you know, realistic. So what do you think in the short term your goals are?

And that may be an open-ended question too, where they might say, you know, I don’t want to be sick or in the hospital. That’s really important that I’m at home, or that I can do this or that. So this is a disease where we’ve been really well-trained just in the past five to 10 years about how to have these discussions with patients that I would say 20 years ago when I started, we weren’t, I don’t think personally I was as good at having these conversations, and I don’t think we were as well-trained in the profession at this. And we found that this has been extremely helpful for a good patient-provider relationship as well as patient-centered care when they’re making decisions along with us.

Dr. Nicole Rochester:

Thank you, Ms. Sandy. And certainly as we talk about how to empower our patients, that shared decision-making that you talked about and incorporating goals of care is incredibly important. Dr. Seetharamu, do you have anything to add with regard to shared clinical decision-making or any other advances or things that address outdated treatment?

Dr. Nagashree Seetharamu:

Yeah, I can’t emphasize how important it is to have the goals of care discussion, but I think, you know, even though the treatment regimen has not changed for first-line much, there have been some nuances to it, right?  We are routinely including immunotherapy in first line. We now have some supportive care. Trilaciclib (Cosela) is something that we use for patients to help support and prevent admissions. These are things that may not be done, and there are some insurance barriers. Trust me, we are on the phone a lot of times that we shouldn’t be, you know, trying to get something approved despite clear benefit and FDA approvals. So, yeah, that’s a barrier that I should have spoken about, probably number one.

But that aside, I think, you know, that’s one thing that we see that is done a little differently in the community. I spoke about tarlatamab-dlle (Imdelltra). You know, many people just jump to different treatments because they just feel like it’s not…they’re not able to offer these newer treatments because of inpatient monitoring, what have you. So they may just start from a Platinum-etoposide to giving them, again, the same regimen or jumping to, you know, topotecan (Hycamtin), which we know that, you know, can…there can be better regimens than that. There are some newer agents that people may not…I’ve seen that in underutilization of some of the newer. We don’t have a lot of approvals in this space, but even the ones that have been approved, there’s relative underutilization of it. So I think education of providers in the community setting is helpful.

Dr. Nicole Rochester:

Thank you so much. Well, it’s time to wrap up our roundtable. I have learned a lot. I’ve really enjoyed this conversation with the two of you. And so now it’s time for closing thoughts. So I’ll go to you, Ms. Sandy, what would you like to be your takeaway message? What’s one of the most important things for our audience?

Beth Sandy:

I think one of the most important things is don’t write off your patients with small cell lung cancer. You know, it’s an aggressive disease. It can be hard to manage. They have a lot of comorbid conditions, but some of these treatments can work well, especially the newer agents. And so, you know, really working with your patient to keep them on therapy, but while at the same time understanding what their goals of care are and continuing that discussion throughout your patient-provider journey, and continuing to understand what their support systems are, what is important to them, and then that will help you and the patient make these treatment decisions along the way.

Dr. Nicole Rochester:

Thank you, Ms. Sandy. And what about you, Dr. Seetharamu, what are your closing thoughts?

Dr. Nagashree Seetharamu:

Yeah, I agree with Ms. Sandy on everything that she said. I think emphasizing the importance of multifaceted approach to overcome practice barriers, from reducing stigma and improving access to diverse patient populations, improving clinical trial inclusivity, and closing healthcare disparities perhaps are top strategies. And then, you know, for future, it’s just a call to action, you know, for improving funding for clinical trials and to also, you know, try to see if there are programs that can mitigate disparities that we see.

And then we spoke about stratifying patients, you know, making it a more personalized care, just as we do for non-small cell lung cancer these days with all the novel information that we have so far, and making sure that every patient, no matter where they are, who they are, receive optimal care that they should.

Dr. Nicole Rochester:

Well, thank you both again, Dr. Seetharamu, Ms. Sandy, thank you for this incredibly informative conversation. And thank you again for tuning in to this Empowering Providers to Empower Patients, Patient Empowerment Network program. I’m Dr. Nicole Rochester. Thanks for watching.


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

 

Why is it important to empower patients? Expert Dr. Jennifer Ligibel from Harvard Medical School and Dana-Farber Cancer Institute shares her perspective on how her career course in oncology has impacted evidence-based tips that she provides to empower her patients. 

 

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Transcript:

Dr. Jennifer Ligibel:

This is such a great question. And honestly a question that really set my career course in focusing on supportive care for patients with cancer. Many years ago when I first started working in oncology, my patients would often ask me, after months of chemotherapy and radiation and surgery, “Dr. Ligibel, what can I do to help myself feel better, live longer?” And there wasn’t much to tell them at that point. And that’s really why I’ve spent the last 20 years doing research and figuring out what kind of treatment modalities can people do themselves to help themselves feel better, whether it’s exercise or weight management, or changing their diets.

I think for me, talking to patients, hearing about what their concerns are, offering hope, and really sticking now to what are evidence-based practices, to tell people that yes, you can exercise, you can eat healthfully, and those things will make a difference. They’ll help you feel better, they’ll help reduce the side effects you’re having from therapy. And although we’re still studying it, these behaviors are linked to better long-term outcomes. So for me, empowering people is about listening to them and providing them with evidence-based things that they can do to help themselves feel better.

What Supportive Care Treatments Are Available to Patients?

 

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

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Transcript:

Lisa Hatfield:

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

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

Dr. Jennifer Ligibel:

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

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

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

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

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

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

Lisa Hatfield:

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

Dr. Jennifer Ligibel: 

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

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

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

Lisa Hatfield:

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

What Is Supportive Care Therapy in Cancer Care?

 

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

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Lifestyle Interventions and Cancer Care Outcomes Research

How Does Nutritional Screening and Assessment Impact Cancer Care?

How Does Nutritional Screening and Assessment Impact Cancer Care?

What Supportive Care Treatments Are Available to Patients?

What Supportive Care Treatments Are Available to Patients?

Transcript:

Lisa Hatfield:

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

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

Dr. Jennifer Ligibel:

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

Lisa Hatfield:

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

Dr. Jennifer Ligibel:

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

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

Lisa Hatfield:

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

Dr. Jennifer Ligibel:

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

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

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

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

Lisa Hatfield:

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

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

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

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

See More from Empowering Providers to Empower Patients (EPEP)

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

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

Transcript:

Dr. Krina Patel:

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

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

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

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

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

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

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

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

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

What Is the Role of a Care Partner in Bispecific Antibody Therapy?

What Is the Role of a Care Partner in Bispecific Antibody Therapy? from Patient Empowerment Network on Vimeo.

How can a myeloma care partner support a bispecific antibody therapy patient? Nurse practitioner Alexandra Distaso from Dana-Farber Cancer Institute explains ways that care partners can offer logistical and emotional support and shares tips for staying well-informed and organized during the treatment journey.

Alexandra Distaso, MSN, FNP-BC is on the Multiple Myeloma Nursing Team at Dana-Farber Cancer Institute.

See More from The Care Partner Toolkit: Bispecific Antibodies

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Bispecific Antibody Therapy Support | Care Team Members and Resources

Bispecific Antibody Therapy Support | Care Team Members and Resources

Transcript:

Katherine:

As I mentioned, Alexandra, this program is aimed at helping care partners understand the process and how they can support their loved ones. What do you feel is the care partner’s role?  

Alexandra:

I feel like the best way for care partners to support patients is to kind of take the time to learn about the myeloma and the therapy and try to do the best they can to just be there for not just moral and emotional support, but the other little things that they may need. Coordinating rides, if it’s a family member, asking friends for help.  

And then other things like insurance phone calls can be incredibly time-consuming and taxing. Or waiting at the pharmacy to pick up medications. Any, even little things like that, I think take a huge load off the patients who are doing this day in and day out.  

Katherine:

Yeah. Are there key questions that care partners should ask as they begin the process?  

Alexandra:

I think the best thing that patients and caregivers can do is if they have questions prior to the visit is to make a list. ‘Cause, I’m guilty of this myself, as soon as I show up at my doctor’s office, I completely forget what I wanted to say. So, making a list prior to the appointment, I think, is hugely beneficial. And then I don’t think that it’s ever a bad thing to ask for the doctor or nurse practitioner or pharmacist, whoever you’re meeting with, to see if they can repeat themselves. We’re putting a lot of information into a very short period of time.  

And to try and keep track of, again, schedule, supportive care medication, when you’re going to need to be in the hospital, how long, what your follow-up will be, taking notes during the visit or asking to hear it again is always helpful. Not even just for the caregiver, but sometimes for the patient who’s still trying to wrap their head around some of the change in therapy.  

Katherine:

Right. Yeah. That’s really good advice. As we’ve covered, it’s not always easy being a care partner. What would be your best advice for those who are caring for someone undergoing bispecific antibody treatment?  

Alexandra:

I would say it’s hard to put out how important care members are to the entire care team. Again, not just for the logistical, getting the patients to appointments, getting their medication, but really having someone the patient feels comfortable to be able to lean on. And again, they may say, “I’m so overwhelmed in these visits, and I really need some help.  

Could you ask these things?” Helping them keep track of all these medication changes and appointments and visits and any sort of even small things like grabbing them a water so that they’re staying hydrated. Those little things make such a difference to people. And I think doing those things, no matter how small they feel, really helps support the patients through these changes in therapy. 

When Can Small Cell Lung Cancer Patients Use Palliative Care?

When Can Small Cell Lung Cancer Patients Use Palliative Care? from Patient Empowerment Network on Vimeo.

When might small cell lung cancer patients want to use palliative care? Expert Beth Sandy from Abramson Cancer Center defines palliative care and shares examples of palliative care support.

[ACT]IVATION TIP

“…there’s even data to show in lung cancer that patients who see palliative care in addition to their primary oncologist actually live longer and have improved quality of life. So we will often pair up with the palliative care team to help our patients maximize their symptom support and their side effect support, and have a good understanding of what their goals of care are with the treatment so that everyone’s on the same page and everyone is having a good experience.”

See More from [ACT]IVATED Small Cell Lung Cancer (SCLC)

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How Can Small Cell Lung Cancer Patients Ask About Care Goals

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Overcoming Small Cell Lung Cancer Care Barriers


Transcript:

Lisa Hatfield:

Palliative care is important for quality of life during small cell lung cancer treatment. Can you, first of all, explain what palliative care is, and then also give some advice, any advice you have for patients and their families on including palliative care early on in their course?

Beth Sandy:

So first, let’s define what palliative care is. It seems to be a big word, and sometimes people get a little concerned or confused when they hear that and they think, “Oh, does this mean I’m at the end or something like that?” And it absolutely does not. So palliative care means helping with supportive care or treatment of your side effects or symptoms. So we have a whole different set of doctors and nurse practitioners at my institution who just focus on the palliative care needs.

So, for example, if I have a patient with lung cancer, that’s what I treat, or maybe small cell lung cancer, but if I have a patient with lung cancer who is having a lot of pain and in my visit, I know the basics of the opioids and other medications, but usually we’ll send those patients to palliative care because they will have some other ideas and they can really focus and spend a half-hour just talking about those symptoms, like the pain, the cough, the shortness of breath, the weight loss.

So some people call it palliative care service, other people call it a supportive care service. That’s another kind of term for it. What the palliative care teams often do is what’s called the goals of care discussion, and that can mean a lot of different things to patients. What are your goals with life in general? Not even related to your cancer. Learning about you. Like who do you live with? Who is dependent on you? Who are you dependent on? And then going from there, and what is your understanding of your cancer and what are your goals with the treatment?

Sometimes we use a term called trade-offs. We would say, if the cancer, we’re treating it and it’s worsening, and then we have another treatment for it, and those side effects may be a little bit harder, is that something you want to risk, is being in the hospital and maybe being sick over the holidays or something, or would you prefer not to do that?

So palliative care often helps us with these goals of care discussions, and that can even lead to discussions about do I want CPR and resuscitation and things like that? Some people from the very start of their cancer, even if it’s a curable cancer, say, “But I’m at the point in my life where I have all these other illnesses, and I don’t want to be resuscitated. I want a natural death.” So those are all things that palliative care oftentimes can help with, living wills and things like that. And it’s not to say that your oncologist can’t because these are things I can do as well. But if I’m in a visit with you and I wanted to focus really on the current chemotherapy you’re on and those side effects, it may be better to have a palliative care doctor come on who is trained more in having those discussions.

And I wanted to make one distinction. Is that palliative care is absolutely not hospice care. So hospice care is when we’ve decided we do not want to do any more treatment for the cancer, and we want to improve the quality of the time that we have left. That’s hospice care. Palliative care is not that. Palliative care is when you are still on treatment, and we just want to maximize the supportive care and talk about what your goals are of the treatment. So I think my activation tip here for palliative care is that we often use it in lung cancer.

There’s even a study, there’s even data to show in lung cancer that patients who see palliative care in addition to their primary oncologist actually live longer and have improved quality of life. So we will often pair up with the palliative care team to help our patients maximize their symptom support and their side effect support, and have a good understanding of what their goals of care are with the treatment so that everyone’s on the same page and everyone is having a good experience. 


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Combination AML Therapy for Newly Diagnosed Patients | What Are the Long-Term Effects?

Combination AML Therapy for Newly Diagnosed Patients | What Are the Long-Term Effects? from Patient Empowerment Network on Vimeo.

A Patient Empowerment Network community member wants to know the length of time that patients can stay on the combined treatment of azacitidine (Vidaza) and venetoclax (Venclexta). AML specialist Dr. Jacqueline Garcia responds, sharing an update on the long-term follow-up data for this combination treatment.

Dr. Jacqueline Garcia is an oncologist and AML researcher at the Dana-Farber Cancer Institute. Learn more about Dr. Garcia.

See More from Thrive AML

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Transcript:

Katherine Banwell:

Jerry had this question. “How long can patients stay on azacitidine (Vidaza) and venetoclax (Venclexta) before relapse or toxicities force them to abandon treatment?”  

Dr. Jacqueline Garcia:

So, this is a good question. I would say azacitidine and venetoclax just got FDA-approved just shy of five years now, and it’s totally changed our treatment paradigm in many great ways. It was initially approved for patients that could not get intensive chemotherapies or were above 75. We call these our older patients, our more vulnerable.   

And we demonstrated and compared to azacitidine alone. It was given with placebo. We saw that the combination of azacitidine and venetoclax not only was safe, well-tolerated, it led to two-and-a-half times higher complete remission rates and impressively longer survival. That’s all we care about, patients are living longer. So, one of the things that we are appreciating in 2023 now, now that we have more patients on azacitidine and venetoclax, is that we have many patients that are long-term responders.  

So, in the original clinical trial we’ve been reported – and we just submitted the update for the long-term follow-up that we presented at the American Society of Hematology meeting in 2022, in December.   

We presented the long-term follow-up data that shows that responses can be durable and even as long as two years or three years in some patients. The average amount of time the patients are on therapy is somewhere between one-and-a-half to two years. But not every patient performs like an average patient.  

We have some that respond for less time. We have some that respond for a longer time. So, I definitely have a few patients that have been on combination therapy, and we’ve gone to year three, then four, and two that got to year five. And that was using the original indication of older the 75, no intensive chemotherapy. Most of those patients in the original trial and led to the approval were not transplant candidates. But once those drugs got approved, more patients that were older started getting this therapy.  

And so, the durability of this treatment might be longer for people that don’t have competing health problems and for specific mutation subtypes. There are a couple of mutation subtypes that include IDH2 and NPM1, where we’ve seen some extreme long-term responders.  

And then, there are others that are much shorter. So, I would say it’s very individual. In terms of toxicities in general, the regimens very well-tolerated. And if it’s not, often it’s because there should be supportive care, prophylaxis, and adjustments to the dosing strategy, which has been well-published. Sometimes, if you have a treating oncologist that is less familiar, they won’t know the nuances of how to adjust the doses, so I would ask your local oncologist to reach out to anybody that was part of the original trials. Often, a lot of us are very responsive to helping out our colleagues to help patients to stay on treatment.   

But at the end of the day, if a patient loses response or has a bad toxicity that makes it very difficult, we have to move on to another therapy.