Video series: Transforming SCLC care
Transcript: ES-SCLC quality of life and supportive care
Supported by Amgen
Jacob Sands, MD, and Stephanie McDonald, MSN, FNP-BC, AOCNP
All transcripts are created from interview footage and directly reflect the content of the interview at the time. The content is that of the speaker and is not adjusted by Medthority.
Welcome. I'm Dr. Jacob Sands, thoracic medical oncologist at Dana-Farber, and I'm very excited to be joined today by the person I work the most closely with. –Hi, I'm Stephanie McDonald. I'm a nurse practitioner from Dana-Farber, and I have the pleasure of working with Jacob Sands, and I'm excited about our discussion today. Thank you so much for having me. –So, we're going to discuss small-cell lung cancer as part of a video series, "Transforming Extensive Stage Small Cell Lung Cancer Care," and the topic for this video is supporting patients every step of the way. So, we've been given some questions, and maybe I'll just read them, and then we can discuss them together. The first one is, what aspects of extensive-stage small-cell lung cancer have the greatest impact on patients' quality of life throughout their treatment? Stephanie, do you want to start on this? –Yeah, sure. I think that patients really experience effects on their quality of life not just from the disease itself, but the treatment. So, I think it's definitely multifactorial.
I think common physical changes that we see from patients, I think, can be fatigue, and I think that's not an easy aspect to improve on patients' conditions because it can be very vague and, again, multifactorial. I think at the beginning of their treatment, their fatigue might come from the disease itself, and then unfortunately, the treatments that we give them can cause added fatigue, especially with chemotherapy or T-cell engager therapy. We can see fatigue be a real issue for our patients. And again, it's not a very easy fix. So, I think working as a team and having a multidisciplinary approach to care can be really helpful for patients. So, I think that if we can all band together from the beginning to support patients from all aspects, I think that's going to give the best outcomes for our patients. Wouldn't you agree? –Oh, I completely agree. And this is where, for everyone who's tuning in to this discussion, Stephanie and I work very closely together. And I think there are aspects of the care that end up more in the discussions that she's having. And so, this is really a balance in discussing what's going on with patients. Now, you know, the flip side of the toxicities of the treatment is also the toxicities of the cancer. And so, especially in the first-line setting, where patients have not gotten treated yet, patients can be very symptomatic from the disease itself. And when they start first-line chemotherapy, and that would generally include immunotherapy unless they're in the inpatient setting, where they may not get immunotherapy with their first cycle. But with chemotherapy, we see very high response rates. We see very rapid responses.
Small-cell lung cancer being the only solid tumor where we consistently need to think about tumor lysis syndrome as something that can happen, which again is a reflection of how rapidly the disease can respond to treatment. And so, some patients come in very fatigued and not eating much. But then once we start their treatment, okay, they might get a little more fatigue and a little more queasiness or kind of not feeling like eating much over a few days, but then everything can really improve quite drastically as well. And so, it's a real challenge, I think, in balancing these out. Also, just to highlight that especially for those that are tuning in that are not working specifically in oncology, I think the toxicities of the regimens that we're discussing are dramatically different than they were 20 years ago. And I think many outside of oncology are still picturing the way treatment was 20 years ago. We now have antiemetics that are so much better. And so, you know, there is certainly a balance here. And I think for us, it's weighing out what is disease-related toxicity versus treatment-related toxicity. And, you know, we often talk about with patients, how do we get the most quality days? And sometimes with treatments, there are going to be days that are a little bit worse. But the other side of that, the goal is that they end up with substantially more days that are good days than what they would have had without the treatment. And so, that's the risk–benefit balance discussion that we're talking about with patients, and very much quality of life. Consistently, patients come in and say they care about quality of life, not duration.
And we say, yes, that is exactly what we're typically talking about as well. I think there's a preconceived notion out there that oncologists and oncology teams are treating patients to make them live longer, but that their quality of life goes down. And I've stated that with patients just to raise the topic. Because, you know, the patients that at their baseline are, say, questioning whether or not they should get treatment at all, and they're stressing quality of life, often are not appreciating that with the treatment, the toxicities of the cancer get reduced and delayed and all of that. So, it's certainly a complex discussion. And then there's all the management of those treatment-related toxicities that Stephanie is highlighting, which is then, you know, obviously, a really important part of the process as well. All right, let's go on to question two. How are healthcare teams currently helping to reduce the burden of care and improve quality of life for patients with extensive-stage small-cell lung cancer? Now, Stephanie, I think you do a lot of this in meeting with patients and talking about what's going on and symptom management and stuff. Do you want to start with some of the toxicities maybe that are a bit more common, not that everyone has it, just for balance, but also then how you're managing those and what kind of pearls do you think are out there? –Yeah, I think for anybody who is on treatment, I think it's really important for teams to meet with the patients and their family before they go on any line of treatment just to really establish a good baseline. See what the patient's goals are, what their quality of life is that they're coming into clinic with to begin with. And then we can start the groundwork for building a meaningful plan for these patients. I think in the first line, when someone's starting chemotherapy and a combination of immunotherapy, we do want to educate patients that, again, your fatigue may be worse, but as the treatment hopefully starts working over time, we're anticipating that you're going to be feeling better. But throughout the course of treatment, nausea can be — I would say most people feel tired for about a week after treatment, maybe 4 or 5 days after treatment.
Again, that can improve with time. Nausea might be intermittent, mild. I think as long as it's not interfering with your ability to eat and drink, I want them to be taking their antiemetics. But usually that is manageable, and if not, we have a lot of different types of antiemetics to utilize or steroids for a short period of time for patients to improve on their symptoms. For other symptoms, constipation, these can all interfere with somebody's daily function. So we want to be able to be more proactive than reactive for these patients. So, whatever the side effect is, depending on the regimen, you want to tell a patient that if you feel something, say something. I always want my patients to call. So, make sure no matter what, they know who to call, when to get in touch with your team during business hours, off hours if something more emergent comes up, because patients want a line of communication. That's what they want. They want to know when they call that somebody is seeing them, hearing them, and getting back to them with a solid, tangible plan to help with their symptoms. These patients come in scared a lot of the time. They don't know what to expect. Maybe they haven't gone through a cancer treatment themselves. Maybe they've only seen a family member or friend go through it. So, there is a lot of anxiety at the beginning of these treatments, and we can go over the statistics of what somebody may or may not get with treatment, but we're realistically not going to know how an individual tolerates treatment until we see it over time. So, the other thing I like to do to help improve their quality of life is touch base with the patients, whether that's through our nurse navigator or our program nurse, who can reach out to patients in between treatments. But, depending on the patient's distance from clinic and the burden to get them into clinic, I usually like to see them or check in with them about a week after treatment to see how things are going. Especially some of these regimens are every 3 weeks or every 2 weeks. We're not going to be always seeing these patients frequently. So, we do want to make an effort at the beginning of treatment to make sure we're connecting with them to really see what side effects they're having and how we can improve on their quality of life. –Yeah, so important, right? The management of all of this obviously is very important.
One other toxicity that I think is often underappreciated by treatment teams is alopecia. For patients, when they lose their hair, this is a traumatic experience for many patients. Not everybody, but for some people, I think they don't tend to say it because they think it represents vanity. But for many, it's not about vanity. It's about waking up and looking in the mirror and seeing themselves sick with cancer. They show up at friends' and families' places, and everyone is immediately reminded that they're on chemotherapy. And this has an impact to how they perceive themselves and therefore their experience living each day. And also, when people's hair falls out, it typically falls out all at once. It's like 2 or 3 weeks into treatment. Not necessarily every single hair, but they get the bulk of it that can just fall out. And so, I do warn them, "Hey, with this regimen, about 2 weeks in, you might find you're in the shower and washing your hair, and it's all coming out in your hands. I just want you to be aware of that." Because that can be a traumatic experience in all of this, too. And so, we really try to be attentive to patients' emotional experience with cancer, as Stephanie just outlined, in making them aware and making them feel supported and that they have a sense of what's going on and that they have support all around them. Also, just to underscore one of the things that Stephanie said, because I think it's so important, is that I tell them, "Look, if you have anything going on, whether it's on a list or not, then I want to know about it. So, anything comes up, you just reach out. If there's something that's so minor that you only notice it because you're, like, pausing and looking for something then, you know, it might not be a big issue." And so, I want them to know they can call in anytime. We're here. We want to know about anything going on. But the big thing is how do they also get back to their lives? I often say, "We're doing all of this so you can live your life. You're not living your life just to do cancer treatments." And there's a balance in that. –I also want to kind of make the point, if I can, before we move on, that it's not just about the symptoms and the toxicities.
Like, these patients are still trying to live their daily life, and I know for us a lot of them are traveling from long distances. So, I mean, it's not just the physical toxicity, it's the financial toxicity, it's the ability to get to these appointments. It's who are they taking care of at home, who's helping them. And maybe a lot of these patients prior to their diagnosis, a lot of them were very independent people, and now they're relying on others, which is a real challenge within itself, to be able to, you know, monitor for these side effects, to be helped coordinate clinic visits and appointments. And so, they're coming into clinic frequently, sometimes every 2 or 3 weeks. They may be hospitalized with the T-cell engager therapy for step-up dosing. Like, that is a real burden for a lot of our patients, just coordinating that long travel distance, the lodging and travel expenses within itself, and that definitely can play a role in quality of life, just simply outside of toxicity management. So, I think being able for us as a healthcare team to recognize that and what we can do to reduce that burden for the patients, I think, is really important. I think being able to think about things: can we coordinate lab work or testing closer to home? Can we partner with a local oncology team to help coordinate care for these patients? Again, can we use our nurse navigators to do calls in between visits to maybe save them a trip into clinic if it's safe to do so? So, I think, you know, just providing that extra support and also just considering upfront implementing other specialists to help support, kind of, the holistic approach for these patients. So, palliative care early, our social worker, looking into resource specialists. And especially patients who start off, like I said, with fatigue, you know, getting physical therapy involved early.
What resources can we implement at home? Can we set up VNA and home PT to help, kind of, rehab these patients even prior to exposing them to treatments that may make symptoms worse? –Yeah, these are also important, and that feeds into the next question really well, actually. How do you incorporate patient preferences and quality of life considerations in the treatment discussions and shared decision-making? And I think you've outlined that really well. Just to comment on a couple things. I think involvement of palliative care early, there needs to be real clarity around that palliative care is being involved more as supportive oncology in some cases. Patients – sometimes using the terminology of supportive oncology rather than palliative care. For some patients, that really matters. So, you know, it can be palliative care, but I think it's worth recognizing when patients will benefit from the explanation that you're not referring them to palliative care for end-of-life care. Although, you know, in many cases that does end up becoming where things go, ultimately. That's not the focus at that time, and I'd really advise against creating some long vision of, well, in the end you're going to die. I mean, upfront people are trying to get their feet on the ground.
So, you know, I'll tell people this is not curable, and any questions they ask, I will answer as bluntly as possible. But I do not tell people median numbers, and so I will, when people ask about timeframes and such, I'll tell them the range because, you know, that is realistically accurate. We don't know where they'll fall in that range. And so, you know, we do have discussions, though. If the drive is hard for them, this certainly comes into play for clinical trials discussions. Like, hey, it's a great trial, but, you know, for them driving 3 hours to Dana-Farber for this trial is just not feasible. So they want to get an opinion, and then they're going to go to the center close to home. And this is part of factoring in all of these issues beyond just medical issues to make a decision for an individual patient. So, it can be complicated sometimes. All right, the next question is, several presentations at World Lung explored new approaches to improving patient outcomes and quality of life in extensive-stage small-cell. Which findings do you think have the greatest potential to influence patient-centered care in the future? Now, Stephanie, you did present, actually, you gave a talk on using home monitoring, for example. I think this does have real potential in keeping patients out of the hospital. Do you want to share a little bit about what you discussed?
–Yeah, so we had a workshop on wearable technology in lung cancer. And I thought it was really interesting. Actually, I did a deep dive for small-cell lung cancer, and I thought it was actually something that could be potentially feasible. I think we have a lot to learn and tease out to see, kind of, who would benefit the most from this. But I think for T-cell engagers like tarlatamab, I think these patients would be most considerable, to be able to spend more time at home, to be able to get their treatment, and then use wearable technology to be able to see trends in changes. You know, not specifically get exact vital sign information, but kind of see a change in trends over time. Like, is their baseline temperature changing over time? Is their baseline heart rate changing over time? What is their activity level like? I think these things are really important for patients.
And I think it's really helpful in certain patients. I think high-risk patients, we still need to consider bringing them into the hospital, but I think it really, you know, would be helpful to consider even a pilot study just to see, or, you know, who would probably benefit. I think we need to get more information as far as risk stratification for these patients, and I know that's, kind of, in early research right now, but I think if we could figure out who would benefit the most and then go from there. –All right, we're really pressed on time, but we'll do these last couple quickly. Beyond emerging therapies, what changes in clinical practice, supportive care, and research could have the greatest impact on quality of life for patients with extensive-stage small-cell lung cancer? You know, my answer to this is really, if we're not talking about treatments and such, then I think actually having a very proactive and engaged nurse group in the practice is really meaningful for patients. It probably reduces the oncologist time in making calls and such as well, and for patients to be able to get someone on the phone. People consistently tell us that, "Oh, well, when I come here I can get someone on the phone. At the other place I was at, I could never get anybody."
And I've experienced this, like calling another practice and you end up in some phone tree that I can't navigate, and for a patient with symptoms and they're overwhelmed and such, I think that would be the biggest thing I would mention. –I agree, and I also think, like I said earlier, kind of, to be able to bring more coordinated, individual care kind of closer to home for these patients. I think that can be really important, if we're able to do that, especially using kind of, if we can get a handle on the risk stratification, you know, instead of kind of a one-size-fits-all approach. I think it just needs to be really individualized for our patients, you know, and monitoring symptoms proactively for our patients and really strengthening our partnership, I think, with local oncology teams. So, I know we really enjoy doing that and having outreach to community hospitals to be able to implement education and provide extra support to be able to empower caregivers to care for these patients locally. I know sometimes it logistically can be difficult to do, especially for treatments that may not be set up in place, you know, it is coming, and I think as more clinicians get more comfortable with these drugs, they're able to be able to provide the care and coordination of care for these patients closer to home, which I think would be a big benefit and increase their quality of life to not be able to have to travel so far and pay for lodging and be away from their comfort zone, you know, for an extended period of time, for several several weeks as we get that step-up dosing. So, I think that could be, kind of, the greatest impact.
And I think, you know, patients really shouldn't have to choose between receiving, like, effective treatment and preserving their independence, their family time, and their quality of life. I think ultimately our goal should be to help the patient spend less time navigating their healthcare and the healthcare system and more time living the life that matters to them, So, that would be the greatest impact, I think, amongst moving some of these treatments, these effective treatments, into earlier lines, you know, that goes without saying. –Yeah, if it's maintaining a quality of life, and this is the big focus. And so, we are at our time. There's so much to discuss, I feel like we could keep going. But first, thank you, Stephanie, for joining me in this discussion about small-cell lung cancer and quality of life, and thank you, everyone, for joining us. We hope you've gained something from this small-cell lung cancer discussion with a focus on quality of life.
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