Tag Archive for: Quality of Life

Helping Patients Navigate SCLC Treatment: Tools, Transparency, and Supportive Care

Dr. Jacob Sands and Nurse Practitioner Stephanie McDonald both of Dana Farber Cancer Institute discuss the complexities of treatment decision-making for small cell lung cancer, exploring how providers can help patients navigate overwhelming options.The panel discusses practical tools for educating patients about side effects, the crucial role of palliative care, and why early support can dramatically improve both quality of life and outcomes. 

English Guide|Spanish Guide

See More from EPEP SCLC

Related Resources:

Enhancing Collaborative Decision-Making in Small Cell Lung Cancer Care
Enhancing Collaborative Decision-Making in Small Cell Lung Cancer Care
Empowering Patients with Small Cell Lung Cancer: A Team Approach to Tough Conversations
Empowering Patients with Small Cell Lung Cancer: A Team Approach to Tough Conversations
Small Cell Lung Cancer Care: Striking a Balance With Urgency and Shared Decision-Making
Small Cell Lung Cancer Care: Striking a Balance With Urgency and Shared Decision-Making

Transcript:

Dr. Nicole Rochester:

So, Ms. McDonald, I want to go to you, because Dr. Sands just described some very exciting treatments with very promising results. And I can only imagine that this information, while great, is also overwhelming to patients when they’re presented with all of these options? So are there specific decision aids or tools that you use when you’re talking with patients and families to help them understand the risks and the benefits of the different treatment options as they’re making decisions?

Stephanie McDonald:

So, yes, there are a lot of different treatment options. And with that, you know, we need to be aware of the potential toxicity associated with the treatment that patients are getting, which don’t come without risks. Right. Most patients do pretty well on immunotherapy, but there definitely are toxicities, you know, as far as, like, colitis or pneumonitis and rashes. There are things that are going to be education points that need to be made with patients to know what to look out for depending on what treatment they’re getting.

So I think it is incredibly important not only to provide education sheets to patients to reinforce these discussions, but like I spoke to earlier, I have a separate visit with the patients to be able to spend at least an hour the first time they are given a treatment plan, to be able to feed through all of the potential side effects. And I don’t want to overwhelm patients because you could be a bad, you know, commercial going over every single side effect. But we do need to be realistic with patients about what to be on the lookout for, what might come up, when to call if something does occur.

So I think the most important thing is breaking it down for patients to really easy-to-understand information and you can really gauge. I prefer to see patients in-person or at least have a virtual encounter with them over like a telephone encounter, because you can really gauge how a person might be responding to what you’re teaching them.If someone’s a deer in headlights and they’re overwhelmed by the information that you’re sharing, you need to be able to stop, take a few steps back, and break it down to easy-to-understand information for not only them but for their family members.

I think it’s really important that we also care for the family member as well. IWhen you walk into the room, you’re not just taking care of the patient, you’re taking care of every single person that is in their life. Like they have supportive families who are coming to these appointments who are equally as overwhelmed, or maybe there’s a shift in their role. And now that maybe somebody was a primary caretaker, very active and matriarch, or a patriarch in the household, and now there’s a shift in a whole role and dynamic for how these patients are going forward along their journey.

So we need to be able to spend time to unpack all of that to really understand how we can best support these patients. So besides just education tools, which I think just help reinforce the information that we go over with them as far as breaking down what are the side effects of treatment, how often will you be coming into clinic? People want to know simple things like what do you dress comfortably to come into clinic? What does the infusion room look like? It’s things that maybe as providers we don’t take a moment, because it’s second nature up to us to know kind of the…what the logistics are to somebody’s day in an infusion center.

But this is brand new information for most patients, and that can be incredibly crippling and overwhelming. So on top of providing concrete information as far as what side effects to expect, I also want to be doing a real time evaluation about what their supports are, what their needs are, are they losing weight, are they coming in and need help right off the bat with a dietitian? Are we assessing for their nutritional needs? Are we assessing their psychological needs? Because we know that anxiety, depression, fear of the unknown are very common emotions as a part of a cancer diagnosis and especially one as significant as small cell lung cancer.

So we really want to be talking to patients about the resources that we can encourage them to tap into or think about and talk with their family if they think they would benefit from these. I think one referral that I think often goes later in offering to patients is referrals to palliative care. And I think I just want to make a quick point, and Dr. Sands can talk to it as well, is the importance of implementing palliative care along a patient’s journey early. And there is data to support that when you implement palliative care services early, patients are living actually longer.

Jennifer Temple put out a study probably several years ago, Jacob, you could probably quote me on the date of that. But it’s shown that patients are living longer with improved quality when resources such as palliative care are implemented earlier. And I think it’s very difficult for patients when they hear the word palliative care. They already have this notion in their head that they don’t understand actually what it is. I think a lot of patients think that it’s hospice. They think I’m dying, you, you’re sending me to hospice. There are no more treatment options.

But I implement palliative care as an understanding of supportive oncology. How can we support you to improve your quality of life from the get-go of when you come in and start your journey? And, I make these referrals early. I do it in a non-threatening way and just lay it out as an additional support to help improve their quality of life and really balance the treatment that we’re giving them with again improving their quality of life over the long term. So I do think that referrals to palliative care should be considered and implemented early in a patient’s course in treatment.

Dr. Nicole Rochester:

Dr. Sands?

Dr. Jacob Sands:

Yeah, I agree. Supportive oncology is such an important component, and they often can play a role in helping with controlling symptoms like pain. I mean, of course, I want to know about pain. Of course, we can manage pain as well and I’m happy to add that into office visits. I also find though that for patients sometimes having visits where they’re talking more about those symptoms and others where they’re talking more about the cancer, actually for some patients works better for them. I am happy to help manage pain and do other kinds of medications around symptom management. So, you know, that can also happen within our clinic as well.

But like I said, I think for some patients, it works better for them having these two different teams that they’re interacting with and kind of sharing their story a bit more. It also allows them to really share that story in the way that they want to talk about it. And sometimes those are two different ways that they want to talk about it. You know, also related to the whole shared decision-making and discussion of toxicity profile versus benefits and stuff, I think I’ve often heard patients come in, you know, I see a lot of second opinions and such.

And so they’ll come in and say, well, this doctor told me all of these horrible things that are going to happen with the treatment. And so why would I even want to do that? And, you know, this is…I never actually know what was said to somebody, right? Because people are telling me what they heard, and I’ve heard patients come back or, you know, they get admitted to the hospital and what they tell the inpatient team about my discussion with them. I’m like, oh, I would never say something like what you just said.

So again, patients are experiencing all of this in an emotional way, and I think we have to be attentive to that. So the way that I’ll often talk about this is not just a matter of it’s not. I want to highlight what it’s not first. It is not saying, oh, all of these terrible things could happen. Because that way, if it does, I told you that was a possibility. Okay, that’s not necessarily the transparency we’re going for. The transparency we’re going for is kind of the overall context. Like, hey, this is the overall risk. Yes, here are some things, but here’s the likelihood of those things.

And so what I’ll often do for patients is I’ll often use the analogy. I often talk in analogies. I think that makes it more accessible. For this one, I’ll commonly say, if I were to ask you what could happen on my drive home, then you’re probably going to say, oh, you might hit some traffic, but you’ll be fine. And if I say, well, what are all the things that could happen? Now, that becomes this long, scary list. Now I often say off the bat, like, a drive home is nothing like having cancer.

I’m not saying that these are comparable, but just talking about it in a way in this analogy, so we can give more context so when I talk about, oh, the risk of immunotherapy, okay, you can end up with type 1 diabetes. You can have inflammation and problems with your heart. Okay, these sound like really severe, scary things. The likelihood of this kind of a thing happening is like on the scale of a bad car accident. Yes, it can happen, but this shouldn’t drive your decision-making. That’s very different than just listing out all the different things that can happen.

And I really encourage other providers to talk with their patients in some kind of a way that provides that. We’ll say, okay, here’s the long list of all the things that can happen. More realistically, what I expect is this. 

Dr. Nicole Rochester:

Yeah. Thank you for highlighting that. Thank you for highlighting that balanced approach. I love the analogy with the ride home. I think that’s great advice for providers. 


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Small Cell Lung Cancer Care: Striking a Balance With Urgency and Shared Decision-Making

How can experts strike a balance between urgency and shared decision-making? Dr. Jacob Sands and Nurse Practitioner Stephanie McDonald of Dana-Farber share how they navigate the urgency of starting treatment while prioritizing shared decision-making in small cell lung cancer care. They explore the importance of open communication, normalizing patient overwhelm, and building trust through collaborative care. 

English Guide|Spanish Guide

See More from EPEP SCLC

Related Resources:

Enhancing Collaborative Decision-Making in Small Cell Lung Cancer Care
Enhancing Collaborative Decision-Making in Small Cell Lung Cancer Care
Turning the Tide: Clinical Insights Into a New Era of Small Cell Lung Cancer Treatment
Turning the Tide: Clinical Insights Into a New Era of Small Cell Lung Cancer Treatment

Helping Patients Navigate SCLC Treatment: Tools, Transparency, and Supportive Care

Transcript:

Dr. Nicole Rochester:

Staying where you just left with this degree of urgency, how do you balance the urgency of starting treatment with this shared decision-making? And are there any tools or any tactics that you can share with the audience?

Stephanie McDonald: 

So first of all, I think being honest and having transparency with our patients, I always really try to aim to provide really clear, open communication about their diagnosis and or summarizing their treatment options that were reviewed with them. I think, you know, I’m sensitive, but I want to be really honest in explaining kind of the nature of their illness and really that urgency to start treatment. But like I said, I also want to give space to be able to ask questions and express concerns.

I’m also open about the, you know, the advances in treatment associated with small cell lung cancer with, you know, improved response rates and a variety of clinical trial options. I know Dr. Sands could probably speak to that even more. But I really do think it’s important that we have these discussions with their patients, because it really is a different field now than it was even 5, 10 years ago when patients are diagnosed with small cell lung cancer. And so I think it’s really important to have a conversation with these patients about balancing treatment with their goals of care and really understanding what their goals are, what they find as kind of important to them, what’s important to their family.

But to be able to just speak with patients, it’s not always like a tool but just having a listening ear and letting patients ask questions and being with them to be able to answer all their questions that they have.I feel like that builds a very trusting relationship from the get-go, which I think is crucial, especially with this diagnosis, when things can change pretty rapidly.

Dr. Nicole Rochester::

Thank you so much. Yes, Dr. Sands.

Dr. Jacob Sands:

Oh, I mean, to that point, the two visits can be very, very helpful, where when I’m talking with patients, I will often call out. I mean, frequently I can tell, like, hey, someone. They lost the whole information we’re discussing. Like, they went into their own head. It’s natural. The situation often just feels surreal with people. They were fine, and now all of a sudden, they’re in an oncologist’s office talking about having small cell lung cancer. It’s disorienting. And I’ll often acknowledge that for people, I’ll say to them, hey, I usually find that people just feel the room spinning around them in the middle of a discussion like this. And if you feel that way, it’s totally natural. And I’ll often say that when I can see that someone has lost me, or it doesn’t seem like they’re tracking everything I’m saying. And usually people say, yeah, I don’t know what you said, but I think in doing that one, my goal is to essentially relieve any pressure. Like, hey, if you’re not catching everything I’m saying, it’s okay. We’re going to come back to it, because you’re at the center of all of this.

And I’ll call that out. Sometimes when discussing treatment options as well, I’ll call out common misconceptions. Oh, people usually come in here thinking that if they get chemotherapy, that means they’re going to be laid up in bed vomiting without hair. And almost always people go, doesn’t it? And thankfully, nausea is not nearly the problem. It used to be the first-line regimen for small cell lung cancer. People do lose their hair. And I try to really be very up-front about the things I expect, but also being very up-front about the things I don’t expect. Yes, they can happen, but I don’t expect that.

People often come in thinking the worst of everything, that a lung cancer diagnosis means that at any moment they can just drop dead, and any treatment is just going to cause a whole bunch of toxicity. And thankfully, that’s not actually the equation. And if that were the equation, then being an oncologist would essentially be torturing people, and that’s a horrible job, and we wouldn’t do that. But the goal in all of this from the beginning, most people want to be very clear their goal is prolonged quality of life. And so I will frame the discussion around that goal and make sure that we’re on the same page about the reason that we’re doing any of this, the reason we’re discussing it, and also making it very clear that they have a choice in all of this.

Dr. Jacob Sands:

But I think some of that is also framing it in a way that feels right where it can be hard sometimes to make a decision. And I’ll say it’s normal to not be sure what to do sometimes, because there is not an option here that’s appealing. There is no option that’s like, oh, that sounds great. We’re choosing between two things we don’t want. So let’s kind of anchor around what is going to drive those decisions. Usually for the first treatment, that’s not such a dilemma. I mean, this is an aggressive cancer that the first treatment often works great, and it has the real potential of working for a very long time. This is wonderful. Our first-line treatment really is very effective.

And it’s exciting that we do also now have other often effective treatments that we can discuss. And so I know we’ll kind of get to that a little further down the line. But essentially what I’m highlighting is anchoring around what the patient is emotionally experiencing, because we all know it’s tough. Like, we work in an intellectual space, but we all live our lives in an emotional space. And so that’s where there can really be a big disconnect.

If we’re just talking, like, computer. But people are living their lives emotionally. You flip the script, and all of a sudden the healthcare practitioner is the one that’s disoriented. If it’s like our own lives, that someone else is interacting with us. So we have to be attentive to that and kind of, what are the beliefs coming in? Okay, what is the reality of those? And how much of a factor and how much do we really expect in all of this as a way of balancing this out? Now, that being said, even with all that effort, the room spins around people.

And so for them to then have a separate visit with Stephanie where she’s going to go through things in a different way, and then that ends up being another way. Like, okay, they got all that. They’ve maybe processed some of that. It’s impossible to process everything but some of that. And now they’re meeting fresh again and going to go through things in a different way then I think people retain quite a bit more. It’s also really important because Ms. McDonald and them are going to interact a lot as well. We’re a care team and so I often say to them, hey, I really want you to meet her, because she’s an important part of the team too. And that way she knows you. You know her because we work together.

Dr. Nicole Rochester:

I  really appreciate how both of you really focused on humanizing the patient and normalizing the overwhelm and the confusion and all of the emotions that go along with a new cancer diagnosis.


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Empowering Patients with Small Cell Lung Cancer: A Team Approach to Tough Conversations

Dr. Jacob Sands and Nurse Practitioner Stephanie McDonald of Dana-Farber discuss the communication challenges of treating small cell lung cancer, often diagnosed at advanced stages. Moderated by Dr. Nicole Rochester, the conversation highlights the importance of patient education, reducing stigma, emotional support, and team-based care to empower patients and improve outcomes.

English Guide|Spanish Guide

See More from EPEP SCLC

Related Resources:

Small Cell Lung Cancer Care: Striking a Balance With Urgency and Shared Decision-Making
Small Cell Lung Cancer Care: Striking a Balance With Urgency and Shared Decision-Making
Turning the Tide: Clinical Insights Into a New Era of Small Cell Lung Cancer Treatment
Turning the Tide: Clinical Insights Into a New Era of Small Cell Lung Cancer Treatment

Helping Patients Navigate SCLC Treatment: Tools, Transparency, and Supportive Care

Transcript:

Dr. Nicole Rochester:

There is a lot to unpack given small cell lung cancer is often diagnosed at advanced stages, often requiring rapid decision-making due to its aggressive nature and limiting the time for in-depth discussions. Can you speak to some of the unique obstacles you faced in your own practice around patient-provider communication and shared decision-making?

Dr. Jacob Sands:

Well, I think this is something that’s applicable across all tumor types. Although then I’ll get to the fact that I think to some of the things that I think are more common when in the small cell lung cancer space. First of all, we now live in an era where information is out there, and patients will go looking for information. They’ll come in with an array of things and varying levels of confidence in what they’ve read about online as well. And I do not discourage that.

I think I’m different than some other providers and I say, great, you want to read about things, read about them. If there’s something that’s really compelling to you, bring it in and let’s talk about it. Now, if there are things where you’re like, gosh, that doesn’t sound right, but I’m going to ask about it, then ask about it. Let’s make sure we go over everything that you want to discuss. And I really make an effort to address every question that patients have. Now a lot of times, there are things we can’t know the answer to, But I don’t discourage them asking. And I also will say to them, I am going to try as best as I can to really directly address any question that you have.

And sometimes there’s not a solid kind of short answer. And so we’ll talk about how it’s hard to predict that. But I encourage people to ask questions. I want to make sure that patients know everything that they want to know, and I want to make sure that they’re engaged in their own care and that they feel empowered around everything within their care. Sometimes I think it can be easier for patients to feel lost within the system or kind of feel like they don’t have enough. But if people feel pressured in time or limited in what they can ask, then they just don’t know as much of what’s going on.

So I encourage it. I directly answer everything that I can. Now within small cell lung cancer specifically, with this being such a high smoking prevalence cancer where we know that cigaretteor any kind of smoking essentiallyincreases the risk within this population, within the lung cancer space, especially where there is this direct correlation that is widely known, I think that stigma can get in the way for a lot of people. And I’ll say off the bat that I know of patients who tell people publicly that they have breast cancer instead of lung cancer so that they don’t get the questions about, oh, did you smoke? Of course, we know that there’s a large population of individuals with lung cancer who never smoked.

And it’s often very surprising for people to hear that, that anyone with lungs can get lung cancer, as we often say, but small cell lung cancer is far more common in a population of patients with a heavy smoking history. That’s not 100 percent.I know patients who never smoked, they got small cell but overwhelmingly. And so a lot of the communication in small cell lung cancer, I try to gauge from the start how much is this kind of impacting their mental space around it and how do I do the best that I can to like, remove that guilt. And hey, we’re starting from here. Let’s take this going forward.

Now, for some people, it is a big space. For others, you know, that’s just not in their mindset, or it’s just hard to tell. So I try to gauge that oftentimes there can be kind of family conflict around this or someone still smokes. And I really try to remove guilt of still smoking as well. Because if people with decades of smoking history feel guilt, they’re actually more inclined to keep smoking, because that’s how that then helps them handle those feelings, those like, negative feelings. And so I think that is tied into this discussion in the small cell space that it’s not in all tumor types.

Dr. Nicole Rochester:

Thank you so much for sharing that. Dr. Sands. You said three of my favorite E words, which are educate, engage, and empower. I really appreciate you sharing your approach. I’m going to go to you, Ms. McDonald. What’s your perspective as a nurse practitioner, and what are the primary obstacles that you face regarding shared decision-making and communication in small cell lung cancer care?

Stephanie McDonald:

I often think that small cell lung cancer is diagnosed in advanced stages, and treatment decisions sometimes need to be made pretty quickly. So from the time that a patient has their initial consult with their medical oncologist, they may be starting their first-line therapy within a week, sometimes a couple of days. So I think it limits the opportunity for a really thorough or in-depth conversation with patients and families that you do. They do happen in the initial consult, but I think these patients really need, you know, follow-up visits and frequent check-ins to be able to fully digest the information that they’ve been receiving.

I think there are also kind of obstacles in patients’ emotional response to their diagnosis. I mean, given the aggressive nature of small cell lung cancer, I think many patients and their family members tend to be overwhelmed by the news, and this can really impede their ability to engage in decision-making fully. I think that patients’ ability to proces and understand details in this scenario may be limited, and often the first visits tend to be pretty overwhelming. And I think that patients don’t always remember what was discussed in great detail with their provider.

So I think it’s a great opportunity for advanced practice providers to be able to implement or provide a different setting, separate from their initial consult with their medical oncologist in a slowed down setting, separate from going over all that initial information to really reflect on what was reviewed with the patient, go over what their care plan is and answer any questions that them and their…both the patient and their family have. I think that is super important.

Dr. Nicole Rochester:

I appreciate you sharing that. I can only imagine how emotional this must be for families and like you said, they’re going to need that time to process. So this team-based approach sounds phenomenal. 


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HCP Roundtable: Optimizing Shared Decision-Making and Communication in Small Cell Lung Cancer Care

How can healthcare providers cultivate meaningful communication and support shared decision-making in small cell lung cancer (SCLC) care? Dr. Jacob Sands, Associate Chair of Thoracic Oncology at Dana-Farber Cancer Institute and Assistant Professor of Medicine at Harvard Medical School, joins Nurse Practitioner Stephanie McDonald of Dana-Farber to discuss practical strategies for strengthening patient-provider relationships, fostering collaboration, and advancing patient-centered care to improve outcomes for those living with SCLC. 

English Guide|Spanish Guide

See More from EPEP SCLC

Related Resources:

Outdated Small Cell Lung Cancer Clinical Approaches: Addressing Gaps in Patient Management

Outdated Small Cell Lung Cancer Clinical Approaches: Addressing Gaps in Patient Management

Expert Perspective on Small Cell Lung Cancer Treatment Barriers

Expert Perspective on Small Cell Lung Cancer Treatment Barriers

What Small Cell Lung Cancer Strategies and Innovations Can Improve Survival Outcomes?

What Small Cell Lung Cancer Strategies and Innovations Can Improve Survival Outcomes?

Transcript:

Dr. Nicole Rochester:

Welcome to this Empowering Providers to Empower Patients EPEP program. I’m Dr. Nicole Rochester, founder and CEO of Your GPS Doc, and the host for today’s program. 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.

Today, we are discussing optimizing shared decision-making and communication in small cell lung cancer care. We’re going to discuss how healthcare providers can foster shared decision-making and improve physician patient communication in the management of small cell lung cancer, as well as strategies that healthcare providers can implement to enhance patient-centric care and drive better outcomes in SCLC treatment. 

It is my privilege to be joined today by Dr. Jacob Sands of Dana-Farber Institute. Dr. Sands is the Associate Chair of Thoracic Oncology at Dana-Farber Cancer Institute and an Assistant professor of medicine at Harvard Medical School. Dr. Sands conducts clinical trials with novel treatment options with a particular focus on small cell lung cancer and antibody drug conjugates. Thank you so much for joining today’s EPEP program. Dr. Sands.

Dr. Jacob Sands:

Thank you so much for having me happy to be here.

Dr. Nicole Rochester:

It is also my pleasure to be joined by Ms. Stephanie McDonald, a nurse practitioner in the thoracic oncology program at Dana-Farber Cancer Institute in Boston, Massachusetts. Ms. McDonald’s clinical interests include targeted therapy for lung cancer, immune checkpoint inhibitor toxicity management and streamlining chemotherapy, education for patients and families, providing an individualized plan for support, guidance, and education to prepare patients and families for their cancer journey. Thank you so much for joining me today, Ms. McDonald.

Stephanie McDonald:

Thank you so much for having me. It’s a pleasure to be here.

Dr. Nicole Rochester:

So let’s start our discussion today by looking at the obstacles that surround provider-patient communication and shared decision-making in small cell lung cancer care. Let’s start with some facts that might help frame our discussion. And I’m going to start with you, Dr. Sands. There is a lot to unpack given small cell lung cancer is often diagnosed at advanced stages, often requiring rapid decision-making due to its aggressive nature and limiting the time for in-depth discussions. Can you speak to some of the unique obstacles you faced in your own practice around patient-provider communication and shared decision-making?

Dr. Jacob Sands:

Well, I think this is something that’s applicable across all tumor types. Although then I’ll get to the fact that I think to some of the things that I think are more common when in the small cell lung cancer space. First of all, we now live in an era where information is out there, and patients will go looking for information. They’ll come in with an array of things and varying levels of confidence in what they’ve read about online as well. And I do not discourage that. I think I’m different than some other providers and I say, great, you want to read about things, read about them. If there’s something that’s really compelling to you, bring it in and let’s talk about it.

Now, if there are things where you’re like, gosh, that doesn’t sound right, but I’m going to ask about it, then ask about it. Let’s make sure we go over everything that you want to discuss. And I really make an effort to address every question that patients have. Now a lot of times, there are things we can’t know the answer to, But I don’t discourage them asking. And I also will say to them, I am going to try as best as I can to really directly address any question that you have.

And sometimes there’s not a solid kind of short answer. And so we’ll talk about how it’s hard to predict that. But I encourage people to ask questions. I want to make sure that patients know everything that they want to know, and I want to make sure that they’re engaged in their own care and that they feel empowered around everything within their care. Sometimes I think it can be easier for patients to feel lost within the system or kind of feel like they don’t have enough. But if people feel pressured in time or limited in what they can ask, then they just don’t know as much of what’s going on. So I encourage it. I directly answer everything that I can.

Now within small cell lung cancer specifically, with this being such a high smoking prevalence cancer where we know that cigaretteor any kind of smoking essentiallyincreases the risk within this population, within the lung cancer space, especially where there is this direct correlation that is widely known, I think that stigma can get in the way for a lot of people. And I’ll say off the bat that I know of patients who tell people publicly that they have breast cancer instead of lung cancer so that they don’t get the questions about, oh, did you smoke? Of course, we know that there’s a large population of individuals with lung cancer who never smoked.

And it’s often very surprising for people to hear that, that anyone with lungs can get lung cancer, as we often say, but small cell lung cancer is far more common in a population of patients with a heavy smoking history. That’s not 100 percent. I know patients who never smoked, they got small cell but overwhelmingly. And so a lot of the communication in small cell lung cancer, I try to gauge from the start how much is this kind of impacting their mental space around it and how do I do the best that I can to like, remove that guilt.

And hey, we’re starting from here. Let’s take this going forward. Now, for some people, it is a big space. For others, you know, that’s just not in their mindset, or it’s just hard to tell. So I try to gauge that oftentimes there can be kind of family conflict around this or someone still smokes. And I really try to remove guilt of still smoking as well. Because if people with decades of smoking history feel guilt, they’re actually more inclined to keep smoking, because that’s how that then helps them handle those feelings, those like, negative feelings. And so I think that is tied into this discussion in the small cell space that it’s not in all tumor types.

Dr. Nicole Rochester:

Thank you so much for sharing that. Dr. Sands. You said three of my favorite E words, which are educate, engage, and empower. I really appreciate you sharing your approach. I’m going to go to you, Ms. McDonald. What’s your perspective as a nurse practitioner, and what are the primary obstacles that you face regarding shared decision-making and communication in small cell lung cancer care?

Stephanie McDonald:

I often think that small cell lung cancer is diagnosed in advanced stages, and treatment decisions sometimes need to be made pretty quickly. So from the time that a patient has their initial consult with their medical oncologist, they may be starting their first-line therapy within a week, sometimes a couple of days. So I think it limits the opportunity for a really thorough or in-depth conversation with patients and families that you do. They do happen in the initial consult, but I think these patients really need, you know, follow-up visits and frequent check-ins to be able to fully digest the information that they’ve been receiving.

I think there are also kind of obstacles in patients’ emotional response to their diagnosis. I mean, given the aggressive nature of small cell lung cancer, I think many patients and their family members tend to be overwhelmed by the news, and this can really impede their ability to engage in decision-making fully. I think that patients’ ability to process and understand details in this scenario may be limited, and often the first visits tend to be pretty overwhelming. And I think that patients don’t always remember what was discussed in great detail with their provider.

So I think it’s a great opportunity for advanced practice providers to be able to implement or provide a different setting, separate from their initial consult with their medical oncologist in a slowed down setting, separate from going over all that initial information to really reflect on what was reviewed with the patient, go over what their care plan is and answer any questions that them and their…both the patient and their family have. I think that is super important.

Dr. Nicole Rochester:

I appreciate you sharing that. I can only imagine how emotional this must be for families and like you said, they’re going to need that time to process. So this team-based approach sounds phenomenal. Staying where you just left with this degree of urgency, how do you balance the urgency of starting treatment with this shared decision-making? And are there any tools or any tactics that you can share with the audience?

Stephanie McDonald:

So first of all, I think being honest and having transparency with our patients, I always really try to aim to provide really clear, open communication about their diagnosis and or summarizing their treatment options that were reviewed with them. I think, you know, I’m sensitive, but I want to be really honest in explaining kind of the nature of their illness and really that urgency to start treatment. But like I said, I also want to give space to be able to ask questions and express concerns.

I’m also open about the, you know, the advances in treatment associated with small cell lung cancer with, you know, improved response rates and a variety of clinical trial options. I know Dr. Sands could probably speak to that even more. But I really do think it’s important that we have these discussions with their patients, because it really is a different field now than it was even 5, 10 years ago when patients are diagnosed with small cell lung cancer. And so I think it’s really important to have a conversation with these patients about balancing treatment with their goals of care and really understanding what their goals are, what they find as kind of important to them, and what’s important to their family.

But to be able to just speak with patients, it’s not always like a tool but just having a listening ear and letting patients ask questions and being with them to be able to answer all their questions that they have. I feel like that builds a very trusting relationship from the get-go, which I think is crucial, especially with this diagnosis, when things can change pretty rapidly.

Dr. Nicole Rochester:

Thank you so much. Yes, Dr. Sands.

Dr. Jacob Sands:

Oh, I mean, to that point, the two visits can be very, very helpful, where when I’m talking with patients, I will often call out. I mean, frequently I can tell, like, hey, someone. They lost the whole information we’re discussing. Like, they went into their own head. It’s natural. The situation often just feels surreal with people. They were fine, and now all of a sudden, they’re in an oncologist’s office talking about having small cell lung cancer. It’s disorienting.

And I’ll often acknowledge that for people, I’ll say to them, hey, I usually find that people just feel the room spinning around them in the middle of a discussion like this. And if you feel that way, it’s totally natural. And I’ll often say that when I can see that someone has lost me, or it doesn’t seem like they’re tracking everything I’m saying. And usually people say, yeah, I don’t know what you said, but I think in doing that one, my goal is to essentially relieve any pressure. Like, hey, if you’re not catching everything I’m saying, it’s okay. We’re going to come back to it, because you’re at the center of all of this.

And I’ll call that out. Sometimes when discussing treatment options as well, I’ll call out common misconceptions. Oh, people usually come in here thinking that if they get chemotherapy, that means they’re going to be laid up in bed vomiting without hair. And almost always people go, doesn’t it? And thankfully, nausea is not nearly the problem. It used to be the first-line regimen for small cell lung cancer. People do lose their hair. And I try to really be very up-front about the things I expect, but also being very up-front about the things I don’t expect. Yes, they can happen, but I don’t expect that.

People often come in thinking the worst of everything, that a lung cancer diagnosis means that at any moment they can just drop dead, and any treatment is just going to cause a whole bunch of toxicity. And thankfully, that’s not actually the equation. And if that were the equation, then being an oncologist would essentially be torturing people, and that’s a horrible job, and we wouldn’t do that. But the goal in all of this from the beginning, most people want to be very clear their goal is prolonged quality of life. And so I will frame the discussion around that goal and make sure that we’re on the same page about the reason that we’re doing any of this, the reason we’re discussing it, and also making it very clear that they have a choice in all of this.

But I think some of that is also framing it in a way that feels right where it can be hard sometimes to make a decision. And I’ll say it’s normal to not be sure what to do sometimes, because there is not an option here that’s appealing. There is no option that’s like, oh, that sounds great. We’re choosing between two things we don’t want. So let’s kind of anchor around what is going to drive those decisions. Usually for the first treatment, that’s not such a dilemma.

I mean, this is an aggressive cancer that the first treatment often works great, and it has the real potential of working for a very long time. This is wonderful. Our first-line treatment really is very effective. And it’s exciting that we do also now have other often effective treatments that we can discuss. And so I know we’ll kind of get to that a little further down the line. But essentially what I’m highlighting is anchoring around what the patient is emotionally experiencing, because we all know it’s tough. Like, we work in an intellectual space, but we all live our lives in an emotional space. And so that’s where there can really be a big disconnect.

If we’re just talking, like, computer. But people are living their lives emotionally. You flip the script, and all of a sudden the healthcare practitioner is the one that’s disoriented. If it’s like our own lives, that someone else is interacting with us. So we have to be attentive to that and kind of, what are the beliefs coming in? Okay, what is the reality of those? And how much of a factor and how much do we really expect in all of this as a way of balancing this out?

Now, that being said, even with all that effort, the room spins around people. And so for them to then have a separate visit with Stephanie where she’s going to go through things in a different way, and then that ends up being another way. Like, okay, they got all that. They’ve maybe processed some of that. It’s impossible to process everything but some of that. And now they’re meeting fresh again and going to go through things in a different way then I think people retain quite a bit more. It’s also really important because Ms. McDonald and them are going to interact a lot as well. We’re a care team and so I often say to them, hey, I really want you to meet her, because she’s an important part of the team too. And that way she knows you. You know her because we work together.

Dr. Nicole Rochester:

I really appreciate how both of you really focused on humanizing the patient and normalizing the overwhelm and the confusion and all of the emotions that go along with a new cancer diagnosis. Well, we’re going to shift to practical tools and resources to empower patients and enhance long term outcomes in small cell lung cancer. As you both have discussed, there are some challenges with survival outcomes, particularly for extensive stage small cell lung cancer. Dr. Sands, I’m going to start with you. What are the most significant advances in the current treatment landscape for small cell lung cancer? Five years. And how are they impacting patient outcomes?

Dr. Jacob Sands:

Well, thankfully, you know, there’s a lot to talk about in this space, especially if we’re including current clinical trials, because there are a lot of drugs in development that have shown really exciting results. But aside from that, I’m going to stretch a little more than five years, because it’s so meaningful. Is the immunotherapy drugs that are now part of our first-line treatment. These are drugs that, unfortunately, probably work well for maybe 20 percent of individuals. But amongst those in whom these work, they can work amazingly well. We have patients that are more than five years out from their initial diagnosis with widespread small cell lung cancer that have never gotten another treatment. They got chemotherapy and immunotherapy and that’s it.

They’ve not yet had another treatment. Their disease is controlled. Now this is an, unfortunately, smaller subset of patients that this is working like this for. But I mean, I’m stretching to say that we might actually be curing some people of their incurable disease with the incorporation of these immunotherapy drugs. So first-line setting chemo plus immunotherapy has been the standard of care. Now more recently we’ve seen the ADRIATIC trial. This was a trial in limited stage after chemo-radiation that now uses durvalumab (Imfinzi), one of those immunotherapy drugs after chemo-immuno it actually had a pretty impressive impact on survival on the time to the disease occurring as well as overall survival of patients made a really quite a big difference.

So that’s now the standard of care after chemo radiation for limited stage to then get immunotherapy for two years. But five years ago, also saw lurbinectedin (Zepzelca). This is another chemo agent, got a publication from that study that led to approval. This was 105 patient cohort within a basket trial. So single arm. That led to FDA approval of a new drug for small cell lung cancer. Lurbinectedin is a once every three week drug. It’s pretty well-tolerated. I think as far as chemotherapy drugs work, it does not have a lot of the toxicities that people worry about.

There are some things to monitor, but generally it is a manageable side effect profile as a new drug. More recently, we have tarlatamab (Imdelltra). This has made big headlines and it was a trial that enrolled in the third line and beyond. But the data was so good it got approved in the second line. So, you know, I often quote that about half of patients that get the drug benefit from the drug. It’s 40 percent that have a response–response meaning that it shrank by more than 30 percent. And amongst those individuals, 43 percent of patients were still on the treatment at the time of the last data kit.

And that’s beyond a year of ongoing treatment and some quite a bit more. So we don’t yet know the ceiling as far as how long this drug can work for. When it’s working. I mentioned about half of patients benefiting, but the response rate being 40 percent. That’s because even with stable disease, meaning that it could have shrank by less than 30 percent or grown by less than 20 percent. But in that range we see disease control and some portion of that out beyond six months, which I think is meaningful in the third-line and beyond setting.

Now, of course, what patients want and what we want for them is for something to work for years, not just for months now, you know. But if something works for six months even, and then you have something else that works and then something else that works and something else, then you can string that out to a much longer timeframe. But it’s exciting to see potentially years of benefit from another immunotherapy drug. Now, with that being said, there’s a lot going on in clinical trials that’s quite exciting too. And I’d say one of the benefits at Dana-Farber as well as some of the other bigger academic centers is that we have multiple trials for small cell lung cancer.

One right now is CAR T. So this is essentially collecting the immune cells from patients. We send those off and process them so that they are trained essentially to recognize small cell lung cancer cells. And then we infuse those back into patients. So patients get their own cells back, but now are essentially trained to find small cell lung cancer cells and kill them. So the treatment is essentially training someone’s own immune system to do the work. And it’s exciting. We’ve enrolled patients on that now and to see that technology now coming into the space on top of multiple drugs, which we call targeted chemotherapy.

These are essentially chemo that is bound to an antibody, so that goes and finds a certain receptor on the surface of cells where it then pulls that compound into the cell. And so the chemotherapy is delivered into the cancer cells instead of just going everywhere. And that’s another whole class of technology that’s happening in clinical trials. Now, that’s a bit of scratching the surface as far as clinical trials. There are multiple other things that I could go into, but trials options, I think, are a really important consideration in the small cell space.

I’d say, at this point, especially if you combine what I just said about the past five years now with what’s going on in available clinical trials, there is more happening in the small cell space of novel, effective treatment options than the history of everything up to this point. And so it’s really exciting to see that as an option for patients and to see people do well for such extended periods of time.

Dr. Nicole Rochester:

Wow, that is extremely exciting. When you talked about curing an incurable disease, that’s when you really got my attention. So, Ms. McDonald, I want to go to you, because Dr. Sands just described some very exciting treatments with very promising results. And I can only imagine that this information, while great, is also overwhelming to patients when they’re presented with all of these options? So are there specific decision aids or tools that you use when you’re talking with patients and families to help them understand the risks and the benefits of the different treatment options as they’re making decisions?

Stephanie McDonald:

So, yes, there are a lot of different treatment options. And with that, you know, we need to be aware of the potential toxicity associated with the treatment that patients are getting, which don’t come without risks. Right. Most patients do pretty well on immunotherapy, but there definitely are toxicities, you know, as far as, like, colitis or pneumonitis and rashes. There are things that are going to be education points that need to be made with patients to know what to look out for depending on what treatment they’re getting.

So I think it is incredibly important not only to provide education sheets to patients to reinforce these discussions, but like I spoke to earlier, I have a separate visit with the patients to be able to spend at least an hour the first time they are given a treatment plan, to be able to feed through all of the potential side effects. And I don’t want to overwhelm patients because you could be a bad, you know, commercial going over every single side effect. But we do need to be realistic with patients about what to be on the lookout for, what might come up, when to call if something does occur.

So I think the most important thing is breaking it down for patients to really easy-to-understand information and you can really gauge. I prefer to see patients in-person or at least have a virtual encounter with them over like a telephone encounter, because you can really gauge how a person might be responding to what you’re teaching them.If someone’s a deer in headlights and they’re overwhelmed by the information that you’re sharing, you need to be able to stop, take a few steps back, and break it down to easy-to-understand information for not only them but for their family members.

I think it’s really important that we also care for the family member as well. IWhen you walk into the room, you’re not just taking care of the patient, you’re taking care of every single person that is in their life. Like they have supportive families who are coming to these appointments who are equally as overwhelmed, or maybe there’s a shift in their role. And now that maybe somebody was a primary caretaker, very active and matriarch, or a patriarch in the household, and now there’s a shift in a whole role and dynamic for how these patients are going forward along their journey.

So we need to be able to spend time to unpack all of that to really understand how we can best support these patients. So besides just education tools, which I think just help reinforce the information that we go over with them as far as breaking down what are the side effects of treatment, how often will you be coming into clinic? People want to know simple things like what do you dress comfortably to come into clinic? What does the infusion room look like? It’s things that maybe as providers we don’t take a moment, because it’s second nature up to us to know kind of the…what the logistics are to somebody’s day in an infusion center.

But this is brand new information for most patients, and that can be incredibly crippling and overwhelming. So on top of providing concrete information as far as what side effects to expect, I also want to be doing a real time evaluation about what their supports are, what their needs are, are they losing weight, are they coming in and need help right off the bat with a dietitian? Are we assessing for their nutritional needs? Are we assessing their psychological needs? Because we know that anxiety, depression, fear of the unknown are very common emotions as a part of a cancer diagnosis and especially one as significant as small cell lung cancer.

So we really want to be talking to patients about the resources that we can encourage them to tap into or think about and talk with their family if they think they would benefit from these. I think one referral that I think often goes later in offering to patients is referrals to palliative care. And I think I just want to make a quick point, and Dr. Sands can talk to it as well, is the importance of implementing palliative care along a patient’s journey early.

And there is data to support that when you implement palliative care services early, patients are living actually longer. Jennifer Temple put out a study probably several years ago, Jacob, you could probably quote me on the date of that. But it’s shown that patients are living longer with improved quality when resources such as palliative care are implemented earlier. And I think it’s very difficult for patients when they hear the word palliative care. They already have this notion in their head that they don’t understand actually what it is. I think a lot of patients think that it’s hospice. They think I’m dying, you, you’re sending me to hospice. There are no more treatment options.

But I implement palliative care as an understanding of supportive oncology. How can we support you to improve your quality of life from the get-go of when you come in and start your journey? And, I make these referrals early. I do it in a non-threatening way and just lay it out as an additional support to help improve their quality of life and really balance the treatment that we’re giving them with again improving their quality of life over the long term. So I do think that referrals to palliative care should be considered and implemented early in a patient’s course in treatment.

Dr. Nicole Rochester:

Dr. Sands?

Dr. Jacob Sands:

Yeah, I agree. Supportive oncology is such an important component, and they often can play a role in helping with controlling symptoms like pain. I mean, of course, I want to know about pain. Of course, we can manage pain as well and I’m happy to add that into office visits. I also find though that for patients sometimes having visits where they’re talking more about those symptoms and others where they’re talking more about the cancer, actually for some patients works better for them. I am happy to help manage pain and do other kinds of medications around symptom management.

So, you know, that can also happen within our clinic as well. But like I said, I think for some patients, it works better for them having these two different teams that they’re interacting with and kind of sharing their story a bit more. It also allows them to really share that story in the way that they want to talk about it. And sometimes those are two different ways that they want to talk about it. You know, also related to the whole shared decision-making and discussion of toxicity profile versus benefits and stuff, I think I’ve often heard patients come in, you know, I see a lot of second opinions and such.

And so they’ll come in and say, well, this doctor told me all of these horrible things that are going to happen with the treatment. And so why would I even want to do that? And, you know, this is…I never actually know what was said to somebody, right? Because people are telling me what they heard, and I’ve heard patients come back or, you know, they get admitted to the hospital and what they tell the inpatient team about my discussion with them. I’m like, oh, I would never say something like what you just said.

So again, patients are experiencing all of this in an emotional way, and I think we have to be attentive to that. So the way that I’ll often talk about this is not just a matter of it’s not. I want to highlight what it’s not first. It is not saying, oh, all of these terrible things could happen. Because that way, if it does, I told you that was a possibility. Okay, that’s not necessarily the transparency we’re going for. The transparency we’re going for is kind of the overall context. Like, hey, this is the overall risk. Yes, here are some things, but here’s the likelihood of those things.

And so what I’ll often do for patients is I’ll often use the analogy. I often talk in analogies. I think that makes it more accessible. For this one, I’ll commonly say, if I were to ask you what could happen on my drive home, then you’re probably going to say, oh, you might hit some traffic, but you’ll be fine. And if I say, well, what are all the things that could happen? Now, that becomes this long, scary list.

Now I often say off the bat, like, a drive home is nothing like having cancer. I’m not saying that these are comparable, but just talking about it in a way in this analogy, so we can give more context so when I talk about, oh, the risk of immunotherapy, okay, you can end up with type 1 diabetes. You can have inflammation and problems with your heart. Okay, these sound like really severe, scary things. The likelihood of this kind of a thing happening is like on the scale of a bad car accident. Yes, it can happen, but this shouldn’t drive your decision-making. That’s very different than just listing out all the different things that can happen.

And I really encourage other providers to talk with their patients in some kind of a way that provides that. We’ll say, okay, here’s the long list of all the things that can happen. More realistically, what I expect is this.

Dr. Nicole Rochester:

Yeah. Thank you for highlighting that. Thank you for highlighting that balanced approach. I love the analogy with the ride home. I think that’s great advice for providers. Both of you have spoken as we wrap up. You’ve talked about collaborative decision-making. You have clearly highlighted how you all collaborate at Dana-Farber Cancer Institute and the importance of having these multiple visits. What about other members of the care team? How do you utilize social workers or patient navigators or other members in fostering collaborative decision-making in small cell lung cancer care?

Dr. Jacob Sands:

Well, they’re instrumental. I mean, this really is a shared team approach. Ms. McDonald and I are at the core of that. But then around us, the social worker, really important. You know, rides can often be a real barrier to getting care. And so having a social worker involved in that, that’s one aspect that’s kind of a more obvious one. Even the emotional support as well, and logistics, drug availability and programs for assisted pay, all of these types of things.

We have whole teams that help with that. Nurse navigator is another core member, though. We meet weekly with an administrative support and administrative assistant and with a nurse navigator to go over any patients that are complex and say, okay, this is what’s going on. How can we assist them better? What’s coming up? The administrative assistant knowing, oh, this person’s going to get a scan next week, but then is coming in the next day, we need those results available. Sometimes the outside hospital hasn’t even read the scan yet. They don’t have a radiology report. But we’ll review it with our radiologist as well. Because we have that scan available now. We’ll often do scans the same day.

Patients will come in, they’ll get a scan and then they come right to clinic. And we will review the scan with our radiologist. But of course, radiology, thoracic surgery, radiation, oncology, you know, the whole multidisciplinary team is a part of that. But there are also all of these other supportive members of that team and these weekly meetings, Ms. McDonald really was at the heart of that process and saying, hey, you’ve had these complicated patients. Let’s pull together a team meeting.

That has been a gift. That’s been wonderful, because then weekly we go through this and then everything is organized, and it really reduces the number of other emails or things that could potentially slip through the cracks in the process.Now, on top of that, if you go to tarlatamab, which is an inpatient dosing, which we just don’t have that in small cell lung cancer up to this point as something that requires inpatient monitoring. And as McDonald has really been part of that core of then connecting across to the inpatient team as well, and to all the nurses to then make sure we’re all on the same page.

A colleague of ours, Dr. Rotow, who’s our clinical director, of course, was quite instrumental in the implementation of these things as well. Just to say it goes out beyond our team, specifically in the small cell space. But it’s really important to be connected in all of these ways that really helps provide patients with all the resources that are available to them as well.

Dr. Nicole Rochester:

Truly a team-based approach for sure. Well, it’s time to wrap up our roundtable. I have really enjoyed this conversation. I have learned a lot. And as we close, I wanted to get closing thoughts from each of you. So I’ll start with you, Ms. McDonald. What is the most important takeaway message that you want to leave other healthcare professionals who may be listening, watching regarding how we can optimize shared decision-making and communication in small cell lung cancer care?

Stephanie McDonald:

I really just think the key to optimizing shared-decision making is empathy. I think we need to take the time to really truly understand what our patients’ needs are, what their values are, and their preferences so we can be able to help align the treatment plans and the care that we give with what their goals are. And we really want to make sure that patients and their families are feeling supported and they are playing an active role in this decision-making process because at the core of it, they are what I call the captain of the ship. 

Dr. Nicole Rochester:

Thank you so much, Ms. McDonald. And what about you, Dr. Sands? What’s your final takeaway message for the audience?

Dr. Jacob Sands:

Well, I go that and thinking about when you’re talking about side effect profiles and counseling patients is what the experience is for them and coming at it as if you’re talking to your own parents. But, you know, I can go more in depth in that, but maybe more so focus on everyone who’s listening. I mean, it is hard being a healthcare provider. There is more information coming out faster and faster, and this is wonderful for patients.

There’s also a whole new era of patients really being at the center of their care. And I hear older docs talk about how, oh, this is so much slower. You’re not taking care of as many patients in the hospital as I did. Like, okay, but back in the day, it was a whole different experience. And so I think current physicians and nurse practitioners and healthcare providers are under an immense amount of pressure that is increasing day by day, year by year, in a way that isn’t fully appreciated within the system. And so just to acknowledge for everyone who’s listening, who feels like you’ve been in a crunch, I know you have. And I think part of this is then how to navigate that.

How do you go into someone’s room and emotionally actually engage and be there with them in a tough space sometimes, you know, being challenged for stuff that you shouldn’t be challenged for? It’s just people are going through an emotional experience, and they sometimes even lash out. And then how do you engage with that? And then right after that, walk into someone else’s room and start fresh and don’t carry that? And a lot of this is personal practice too. It’s like, how do we kind of shed everything at the end of an experience and not carry that forward without building a wall that keeps us from being able to engage in that space? And I will tell you, I don’t have a great answer. There is not a magical answer to that.

And so if you are feeling challenges of that, I think that is totally valid, too, as we all work to. I think this is… It is personally a lot of work to work in this space, and we always talk about the patients and what to do and what you should do and all this stuff. But how do we care for ourselves in that process and learn to let go of these things and start afresh with each person? I guess the best I can offer is validation that I know that that’s a challenging thing. And I see that, and I appreciate that, too.

Dr. Nicole Rochester:

Well, thank you both so much. There’s so much that was shared today, and I think the overarching message regarding shared decision-making and patient care in this space that I heard from both of you is empathy and meeting patients and families where they are. And I love the aspect of humanization of both the patient and of the doctor and the provider. So I really want to thank you both for being here today and thank you for tuning into this Empowering Providers to Empower Patients Patient Empowerment Network program. I’m your host, Dr. Nicole Rochester. Thank you so much for watching.


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Understanding Antibody Drug Conjugates (ADCs) in Cervical Cancer

Dr. Abigail Zamorano of McGovern Medical School at UT Health Houston explains essential details about antibody drug conjugates (ADCs) for cervical cancer, including benefits, side effects, and their impact on quality of life. She discusses the importance of maintaining a strong patient-provider relationship, especially when navigating side effects like ocular issues and neuropathy, and emphasizes the role of regular eye exams.

[ACT]IVATION TIP

“…maintain close communication between provider and patient in order to share the experience of receiving an antibody drug conjugate.”

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Transcript:

Lisa Hatfield:

Dr. Zamorano, for patients and care partners learning about antibody drug conjugates for the first time, what key information should they know about the benefits, the potential side effects, and overall impact of these treatments on quality of life?

Dr. Abigail Zamorano:

So I think that you touched on something really important here, and that is quality of life. Antibody drug conjugates are really amazing. They’re a really great way of delivering really high doses of chemotherapy targeted to cancer cells. They do have side effects. One of the most significant side effects that we see with our ADCs in cervical cancer are ocular or eye side effects. So we work very closely with an ophthalmologist or an optometrist, some eye doctor, for very frequent exams during this treatment phase.

It’s really important for both the provider and the patient to understand how, what symptoms might result, when to bring up symptoms to the provider, the oncologist, or the eye doctor, and then what they can do to help prevent any symptoms from occurring. There’s a lot of eye drops involved. It can feel very tedious. But it’s important, because we want to both treat the cancer, but also maximize their quality of life.

There are other side effects that can come up, such as neuropathy, which is numbness and tingling of the hands or the feet. This can be very common with these ADCs. Again, it’s just important for a patient to know that this could be a possibility and then to bring it up with their provider so that they can talk about management strategies. Because ADCs are given in the recurrent disease setting, I do counsel patients that I have a lot of hope in ADCs and their ability to treat cancer, but this is still recurrent cancer, and I can’t take away that fact.

And so I am very hopeful that this treatment will work, and we will see that the cancer stabilizes or shrinks, goes away in the best scenario. But that might not happen. And I really want to maximize quality of life during this treatment process in the off chance that it’s not working and that these are the last, you know, months to years that this patient has.

I always keep that type of conversation open with my patients, because I want them to tell me really how they’re feeling in order to maximize quality of life. So my [ACT]IVATION tip for this question is to maintain close communication between provider and patient in order to share the experience of receiving an antibody drug conjugate. Both the experience of going through the various eye exams and using the eye drops to any symptoms that the patient is receiving and how the treatment is impacting their quality of life.

Lisa Hatfield:

So let’s say you have a patient that comes in, has recurrent cancer and is considering antibody drug conjugate. We might have a patient watching this who is going through this, trying to consider if they want to start this therapy. Can you explain from say day one, what that might look like?

They’re trying to organize their schedule with work and kids. What will that patient experience starting on the first day of that treatment and maybe the subsequent months of treatment? How often do they have to come in? How is that dose delivered? How much time will that take away from their work or their family? Can you explain that a little bit, what the course might look like?

Dr. Abigail Zamorano:

So this is delivered not unlike other more traditional chemotherapies. So it is delivered in an infusion suite with an infusion nurse with an oncologist available if there are any issues or questions. Similarly to when the patient has had chemotherapy for, they get labs beforehand to make sure that the chemotherapy is delivered at an appropriate dose and that they’re safe enough to receive the dose of chemotherapy. What is unique about receiving antibody drug conjugates is that the patient also does need a close relationship with an eye doctor. Either an optometrist or an ophthalmologist.

And so we and many other centers have developed very close relationships with local eye doctors to help facilitate this. It doesn’t need to be an ophthalmologist in the medical center. A lot of optometrists that could be local to the patient could see the patient, which are sometimes a little bit easier to get into. Also the company that provides the antibody drug conjugate has really great resources for providers that are, and also for patients that are just starting on this journey to help make it as easy, as seamless as possible. They provide a lot of literature, they are there to answer questions.

They have lists of eye doctors that other providers have worked with. So there, there are ways of making this a little bit easier for the patient. There are also start kits that the patient can receive that again help them navigate this a little bit better. In terms of the patient experience, it is an infusion every few weeks just like other chemotherapies. The typical feelings afterwards, there can be again some nausea, predominantly there’s fatigue afterwards. I do counsel patients that the first cycle is their learning experience.

They’re learning how, what symptoms to think about. They’re learning how the regimen of the eye drops, and then they’re learning how they’re going to feel on each day. The second cycle in my experience, working with patients is typically a little bit easier. And this is not unique to ADCs, this is any chemotherapy. Because they’ve already been through one cycle, they kind of know which days are going to be their low days and then which days are going to be their high days. Typically, they’re feeling kind of fatigued for about 10 days, and then they start to feel better.

So the second half of the treatment cycle, they’re more able to get back to their routine activities and can kind of reinsert themselves into their usual life. But every patient is different. Sometimes, they need a little bit of extra help, or sometimes patients are feeling really great. These ADCs are designed to be continued until toxicity or progression. And so patients are potentially on these for quite a long time depending on their response both cancer-wise and then other body side effect-wise. And so this could be something that someone is on for some time.

Lifestyle Interventions and Cancer Care Outcomes Research

 

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

Download Resource Guide

See More from RESTORE

Related Resources:

How Does Nutritional Screening and Assessment Impact Cancer Care?

How Does Nutritional Screening and Assessment Impact Cancer Care?

What Supportive Care Treatments Are Available to Patients?

What Supportive Care Treatments Are Available to Patients?

What Is Supportive Care Therapy in Cancer Care?

What Is Supportive Care Therapy in Cancer Care?

Transcript:

Lisa Hatfield:

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

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

Dr. Jennifer Ligibel:

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

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

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

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

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

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

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

Lisa Hatfield:

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

Dr. Jennifer Ligibel:

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

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

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

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

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

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

Lisa Hatfield:

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

Dr. Jennifer Ligibel:

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

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

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

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

Lisa Hatfield:

Okay. That’s really helpful. Thank you.

Dr. Jennifer Ligibel:

Sure.

Lisa Hatfield:

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

Dr. Jennifer Ligibel:

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

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

Lisa Hatfield:

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

What Supportive Care Treatments Are Available to Patients?

 

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

Download Resource Guide

See More from RESTORE

Related Resources:

Lifestyle Interventions and Cancer Care Outcomes Research

Lifestyle Interventions and Cancer Care Outcomes Research

How Does Nutritional Screening and Assessment Impact Cancer Care?

How Does Nutritional Screening and Assessment Impact Cancer Care?

What Is Supportive Care Therapy in Cancer Care?

What Is Supportive Care Therapy in Cancer Care?

Transcript:

Lisa Hatfield:

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

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

Dr. Jennifer Ligibel:

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

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

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

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

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

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

Lisa Hatfield:

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

Dr. Jennifer Ligibel: 

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

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

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

Lisa Hatfield:

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

What Is Supportive Care Therapy in Cancer Care?

 

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

Download Resource Guide

See More from RESTORE

Related Resources:

Lifestyle Interventions and Cancer Care Outcomes Research

Lifestyle Interventions and Cancer Care Outcomes Research

How Does Nutritional Screening and Assessment Impact Cancer Care?

How Does Nutritional Screening and Assessment Impact Cancer Care?

What Supportive Care Treatments Are Available to Patients?

What Supportive Care Treatments Are Available to Patients?

Transcript:

Lisa Hatfield:

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

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

Dr. Jennifer Ligibel:

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

Lisa Hatfield:

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

Dr. Jennifer Ligibel:

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

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

Lisa Hatfield:

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

Dr. Jennifer Ligibel:

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

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

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

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

Lisa Hatfield:

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

From Disbelief to Determination: My Follicular Lymphoma Journey

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

See More from START HERE Follicular Lymphoma

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Strength in Shared Decisions: Juanita’s Follicular Lymphoma Journey

Strength in Shared Decisions: Juanita’s Follicular Lymphoma Journey

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

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

Defining Survivorship for Relapsed/Refractory Follicular Lymphoma

Defining Survivorship for Relapsed/Refractory Follicular Lymphoma 

Transcript:

Voiceover:

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

Jerome:

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

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

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

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

How Is an AML Treatment Plan Determined?

 

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

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

 

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AML Treatment | Understanding Induction and Consolidation Therapy

AML Treatment | Understanding Induction and Consolidation Therapy

An Overview of Current AML Treatment Types

An Overview of Current AML Treatment Types

AML Treatment Planning | Key Questions to Ask You Doctor

AML Treatment Planning | Key Questions to Ask You Doctor

Transcript: 

Katherine Banwell:

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

Dr. Daniel Pollyea:

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

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

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

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

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

Katherine Banwell:

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

Dr. Daniel Pollyea:

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

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

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

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

Katherine Banwell:

Why is molecular testing important following an AML diagnosis? 

Dr. Daniel Pollyea:

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

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

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

Defining Survivorship for Relapsed/Refractory Follicular Lymphoma

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

Download Resource Guide | Descargar Guía

See More from START HERE Follicular Lymphoma

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How Do Outcomes for Relapsed/Refractory Follicular Lymphoma Vary?

How Do Outcomes for Relapsed/Refractory Follicular Lymphoma Vary?

Addressing Vulnerabilities in Follicular Lymphoma

Addressing Vulnerabilities in Follicular Lymphoma

What Are Common Follicular Lymphoma Treatment Side Effects?

What Are Common Follicular Lymphoma Treatment Side Effects?


Transcript:

Lisa Hatfield:

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

Dr. Brad Kahl:

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

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

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

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

Lisa Hatfield:

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


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

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

See More from Empowering Providers to Empower Patients (EPEP)

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

Dr. Abdulraheem Yacoub: Why Is It Important for You to Empower Patients?

Dr. Abdulraheem Yacoub: Why Is It Important for You to Empower Patients?

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

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

Transcript:

Julie Lanford:

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

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

Prioritizing Quality of Life: Addressing Symptom Management Challenges in MPNs

 

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

[ACT]IVATION TIP

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

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

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

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

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

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

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

Transcript:

Lisa Hatfield:

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

Dr. Abdulraheem Yacoub:

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

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

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


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

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

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

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

Transcript:

Dr. Catherine Coombs:

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

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

CLL Expert Perspectives on Current and Future Patient Care

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

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

Download Resource Guide  | Descargar guía de recursos

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Transcript:

Dr. Nicole Rochester:

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

Dr. Callie Coombs:

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

Dr. Nicole Rochester:

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

Dr. Jennifer Brown:  

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


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