Tag Archive for: treatment toxicity

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. 


Share Your Feedback

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.


Share Your Feedback

Follicular Lymphoma Expert Q&A: Coping with Relapse and Managing Treatment Side Effects

Follicular lymphoma expert Dr. Kami Maddocks from The Ohio State University Comprehensive Cancer Center empowers patients and families with practical guidance on key aspects of managing follicular lymphoma. Dr. Maddocks covers effective strategies for managing treatment side effects, navigating the challenges of relapsed or refractory disease, and defining what survivorship means for both patients and their care partners.

Download Guide | Descargar Guía

See More from START HERE Follicular Lymphoma

Related Resources:

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:

Welcome to this START HERE Patient Empowerment Network program. This program bridges the expert and patient voice, enabling patients and care partners to feel comfortable asking questions of their healthcare team. I’m Lisa Hatfield, a cancer survivor and also an Empowerment Lead at Patient Empowerment Network. Joining me today is hematologist-oncologist

Dr. Kami Maddocks, Professor of Clinical Internal Medicine in the Division of Hematology at The Ohio State University Wexner Medical Center. Dr. Maddocks specializes in treating patients with B-cell malignancies, including non-Hodgkin’s lymphoma, Hodgkin’s lymphoma, and chronic lymphocytic leukemia. Dr. Maddocks researches new therapies for these hematologic malignancies, largely through evaluating new targeted therapies in clinical trials. Thank you so much for joining us, Dr. Maddocks.

Dr. Kami Maddocks:

Thank you, Lisa. It’s a real pleasure to be here with everyone today and talking about follicular lymphoma, and I just really appreciate you having me.

Lisa Hatfield:

The world is complicated, but understanding your follicular lymphoma diagnosis and treatment options along your journey doesn’t have to be. The goal of START HERE is to create actionable pathways for getting the most out of your follicular lymphoma treatment and survivorship. Joining us are patients and care partners facing a follicular lymphoma diagnosis, some of which are newly diagnosed, in active treatment, watch and wait, and also living for years with their disease.

START HERE is designed to provide easy-to-understand, reliable, and digestible information to help you make informed decisions. I’m thrilled you’ve joined us. Please remember to download the program resource guide via the QR code. There is great information there that will be useful during this program and after. Okay, Dr. Maddocks, let’s start here. What is the latest in follicular lymphoma, and what are the most important highlights for patients and families?

Dr. Kami Maddocks:

When we look at some of the stuff that’s changed in follicular lymphoma, there has actually been some really exciting developments just in the last year in follicular lymphoma. So when you look at patients who have relapsed or refractory follicular lymphoma, we’ve actually seen the approval of three different new therapies just in the last year for relapsed/refractory follicular lymphoma. So one of those therapies, we saw a brand new approval, and that’s a therapy which combines an oral targeted therapy with a monoclonal antibody.

So the combination of the CD20 antibody, obinutuzumab (Gazyva), in combination with the BTK inhibitor zanubrutinib (Brukinsa) was approved in March of 2024 for patients with relapsed/refractory follicular lymphoma. And this was based on a study that compared that to the single agent anti-CD20 antibody. So while we have had CD20 antibodies approved in both original treatment for follicular lymphoma and relapsed disease, it was the first time that we’ve had a BTK inhibitor approved for the treatment of relapsed/refractory follicular lymphoma.

In May of 2024, we saw the approval of actually the third chimeric antigen receptor T cell or CAR T-cell therapy for relapsed/refractory follicular lymphoma. So previously, we’ve had two different CAR Ts that target the same antigen or protein CD19 on the cell. And the third therapy with the same target was approved in May of this year for relapsed/refractory follicular lymphoma. And then in June of 2024, we actually saw the approval of the second bispecific antibody for the treatment of relapsed and refractory follicular lymphoma.

So previously, we had one approved almost two years ago in December, and a second one, epcoritamab-bysp (Epkinly) was approved in June of this year for patients with relapsed/refractory follicular lymphoma. So three different treatments approved in this setting in the last year, which increases the options for patients. It also provides us with thinking about sequencing these agents. And there’s a lot of studies ongoing to decide or to think about what is the best way to sequence therapy, because there’s no right or wrong answer currently in which therapy did you choose and when in patients with relapsed/refractory follicular lymphoma.

And then thinking about managing when we’re choosing these therapies, what are the side effects of these therapies and managing these side effects? Right? Because chemotherapy is often used for patients with initial diagnosis, and there is very specific side effects to chemotherapy and ways to manage those side effects. But when we look at some of these newer therapies, we have to think about the different toxicity profiles that they have and how we manage those toxicities.

So when we’re thinking about the newer therapies, like bispecific antibodies and CAR T-cell therapies, there’s very specific toxicity with those therapies, including cytokine release or CRS. And then something called ICANS, which is immune effector cell-associated neurologic toxicities, which are neuro side effects of these therapies. And so how do we identify and manage those therapies and now even looking at ways to potentially prevent patients from having those specific toxicities.

Lisa Hatfield:

Okay, thank you. So regarding those toxicities, like the ICANS and the CRS, is there a difference in how you treat patients? For example, if a patient might experience those side effects, are they hospitalized for that type of treatment initially, or are all of these new treatments done on an outpatient basis?

Dr. Kami Maddocks:

Yeah, that’s a great question. So the answer can be variable depending on the specific product or the center where the patient’s receiving them, and then even the disease that they’re used in. So let’s just talk about bispecific antibodies to start. So the first bispecific antibody that was approved in follicular lymphoma was mosunetuzumab-axgb (Lunsumio). There’s no required hospitalization to administer that, but there is a recommendation that if patients have signs or symptoms of cytokine release.

So the primary symptom is fever. That’s the number one most common symptom that patients will get and how we define cytokine release. But patients can also have hypoxia or a drop in the oxygen or hypotension and a drop in their blood pressure. So if they have these, it’s generally recommended that they’re admitted for a period of observation to ensure that those toxicities don’t worsen or escalate and that they’re treated if they do.

Which treatment can include ruling out other causes. Some patients may need antibiotics if they have low blood counts and a fever. Some people will need fluids and oxygen. Then sometimes we use steroids like dexamethasone (Decadron) or even cytokine blockers to help manage those side effects, particularly if they’re what we call higher grade or more significant. The second bispecific antibody epcoritamab-bysp. That was previously approved in diffuse large B-cell lymphoma and there was a recommended hospitalization with a step-up dosing for that.

However, in follicular lymphoma, when they studied that, they gave an extra dose. So part of trying to prevent the cytokine release is giving a lower dose and then increasing the dose each week until you reach the maximum dose. So they added an extra kind of intermediate dosing in the follicular dosing and showed that that made a lower risk of…a lower number of patients had cytokine release. And that the majority of them had the lowest grade cytokine release.

So in follicular lymphoma, it’s actually with that increased one dose in there to get to the maximum dose. It’s actually not recommended, or it’s not required that patients are hospitalized for any of the doses. But, of course, if they would, same thing, if they would have side effects, then you would consider that. And then the same thing could be said for the CAR T-cell therapies. Some of them are given inpatient and then patients are monitored for a period of time, and then some are administered as an outpatient. And patients are seen daily for that to check on how they’re doing, monitor for side effects, have labs. And sometimes it just depends on the center administering the therapy, how they have a setup for patients to be monitored.

Lisa Hatfield:

So I have two follow-up questions to that overview. Are these newer approved therapies, are they available at some of the smaller cancer centers, or are they only available right now at the larger cancer centers or academic centers? Then my second question is, are they limited duration therapies or like bispecific antibodies, does that just continue until disease progression?

Dr. Kami Maddocks:

Yeah, those are great questions. So in general, if you look at the combination of the obinutuzumab and zanubrutinib that should be able to be administered anywhere, the therapy for the oral therapy is continued until progression. If you look at the bispecific antibodies, there’s both. There’s a time-limited therapy, and then there’s one continued until progression. I think in general, we’ve seen that initially these have been used at larger treatment centers, but now that they’ve been approved for a while, we have seen a lot of these being used at smaller cancer centers and in the community centers. Sometimes patients may receive their initial dosing at a larger center and then transition to a local center. But I think, like I said, now, especially the one that’s been approved for a while, we’re seeing that it can be started at many places.

Lisa Hatfield:

Thank you so much for that important overview, Dr. Maddocks. All right, it’s that time where we answer questions we’ve received from you. Remember, as patients, we should always feel empowered to ask our healthcare providers any and all questions we might have about our treatment and prognosis. Please remember, however, this program is not a substitute for medical care. Always consult with your own medical team. So before we dive into this Q&A, since this program centers on coping with relapse and managing treatment side effects, how do you approach these first-time conversations with patients and their care partners who are facing relapse and potentially dealing with a new set of side effects due to the changes in their treatment regimen?

Dr. Kami Maddocks:

I think that’s a great question, and I think there are a lot of things to consider. So I think the first thing that we want to think about when we’re talking about patients having relapsed or refractory follicular lymphoma is that just because patients have relapsed or refractory follicular lymphoma doesn’t always mean that they need treatment. So many patients, when they’re initially diagnosed with follicular lymphoma, are going to go through a period of observation or watch and wait where we know that they have follicular lymphoma, but they don’t have symptoms of their disease.

They don’t have a large number of lymph nodes involved, or their lymph nodes are not very large by the scans, and they don’t necessarily need to be treated until they become symptomatic or have certain concerns from their lymphoma that’s causing problems. So the same thing can happen probably more with relapse than necessarily refractory disease, but patients may…you may detect on scans that they have lymph nodes that are growing or that their disease has recurred, but they don’t always necessarily need to receive treatment.

Once you’ve identified that, yes, a patient requires treatment for their relapsed or refractory follicular lymphoma, the next thing to think about is that patient and their disease. So what age is the patient? What were they treated with initially? Because not all patients receive the same initial therapy. So the decision about what they’re going to receive when they relapse is going to be somewhat dependent on what they received for their initial therapy, what side effects they had from that therapy, and how they responded to that therapy.

The next thing is going to be that there is not just one option at relapse so really discussing the different options for those specific patients, and what are the options, what are the side effects of those options, what is the treatment schedule of those options? Because some treatments may have more toxicity, but they’re time-limited, whereas other therapies may be continued to help progression, they may have less toxicity, but over time that’s a toxicity that patients continue to experience on a daily basis.

So really talking to the patient about the options, what does the schedule of that treatment look like? Do they have to come in weekly? Do they have to come in once a month? And then again, the side effects and how that fits into side effects that they had with their initial therapy, how they tolerate that, are any of those side effects still there?  For example, if a patient has neuropathy from their therapy, that might be something that lasts and then considering all those things and making an informed decision with the patient.

Lisa Hatfield:

Okay, thank you. And these questions are in the perfect order, because we have a question from Lauren asking you, what is the difference between relapsed and refractory? 

Dr. Kami Maddocks:

Okay, this is another great question. I’m sure all these questions are great. When we think of relapsed disease, we think of a patient who’s had therapy, got in a response to that therapy, that response has lasted some time, and then their disease recurs. When we think of refractory, we think of that more as patients that have received a therapy, and they haven’t responded. Now, there is no standard definition of refractory. So we all agree that if a patient gets a treatment and their disease does not respond to that treatment, they’re refractory to that treatment.

But there’s no defined time for which if a patient has a treatment and responds to that treatment but has a short relapse, what’s really considered refractory. In general, a lot of studies that look at a therapy say that if you’ve had it, like if you’ve had rituximab (Rituxan) and you’ve relapsed within a six-month time frame, that that’s refractory. But some studies use three months instead of six months.

Lisa Hatfield:

Okay, thank you. Another patient, Jeff, is asking, Dr. Maddocks, I’m currently in an observation stage of non-Hodgkin lymphoma. I get blood work twice a year and scans once a year. I’m hoping it stays slow-growing. How long on average can a person live in observation mode before treatment must occur?

Dr. Kami Maddocks:

So this is another great question. And I’m going to provide kind of an overview that we’ll kind of set up, because there may be more questions like this. But in general follicular lymphoma is not one disease, which I’m sure since this is a program focused on relapsed/refractory follicular lymphoma, a lot of patients have heard this and know this. But it’s what we call it’s very heterogeneous, or it can behave very differently in patients, meaning that some patients will have very indolent disease, and then there’s a small portion of patients whose disease will be more aggressive.

We know that when we diagnose patients with follicular lymphoma there are some patients that are diagnosed and require treatment pretty quickly, whereas there are other patients that go many years, many, many years without requiring treatment. Some of that is because of the disease, and some of that is because of how we find a patient’s follicular lymphoma. Some patients, we don’t find it until they present with symptoms. Some patients find their own lymph nodes, and some patients are diagnosed because they have a baseline scan that for a totally different reason, maybe get into a car accident, have scans to make sure nothing’s broken, you find an enlarged lymph node, you biopsy it, and you find this diagnosis.

All that said, there are some studies that have looked at patients who are on observation or watch and wait and looked at treating patients who have what we call low tumor burden, or not a lot of lymph nodes, or not very large lymph nodes, but have what’s called advanced stage disease. So lymph nodes on both sides of the diaphragm, not large enough to necessarily require more aggressive treatment, they don’t have symptoms. But we’ve treated, we’ve looked at studies treating those patients with observation or watch and wait or single agent rituximab (Rituxan) therapy. And when you look at the patients in those trials, the median time to needing treatment for patients from observation was three years.

However, there were 30 percent of patients, so one out of three patients who were still being observed at 10 years without requiring any therapy. So there are patients, that’s almost a third of patients at 10 years who’ve been observed, not required therapy in that population of patients. And certainly I have been practicing for a while where I’ve seen patients, I do have some patients who’ve gone longer than that without needing therapy.

Lisa Hatfield:

Okay, thank you. And there you go, Jeff, we hope that you’re in that third. 

Okay, thank you for explaining that. Next question, I’m not sure if it’s Jeff Run or Jeffrey is asking about the most common side effects that are associated with bispecific antibodies, and what precautions can be taken to reduce the risk of infection?

Dr. Kami Maddocks:

Yeah, another great question. There are two different bispecific antibodies that are now approved for relapsed/refractory follicular lymphoma. And I will take this time to also say that some of the exciting ongoing work is looking at those agents in clinical trials, in the frontline setting, in combination with other therapies particularly non chemotherapies.In general, I would say similar side effect profile. The most common side effect between them is the cytokine release or the CRS. So that is the most common side effect. Again, this can be defined in different ways. The most common side effects that you see from that define CRS are fever, hypotension or low blood pressure, hypoxia or low oxygen, shortness of breath, chills, tachycardia or higher heart rate. 

We have talked a lot about CRS and what it entails and how it is defined and presents. But management, it depends on what we call grading. So for patients who just, who have a fever, oftentimes, number one, you want to make sure that it is CRS and that there’s not an underlying cause. So ruling out infection or coexisting infection, if a patient is neutropenic or has a low neutrophil count and is at high risk for infection, you may treat them with antibiotics with a fever while you rule out infection.

But oftentimes, if they have a fever, you can manage symptomatically anti-fever medications like acetaminophen (Tylenol). If a patient has worsening CRS and has other symptoms associated with it, such as the hypoxia, low oxygen, or hypotension, low blood pressure, then that’s when we escalate therapy. So one you direct treatment towards that. So if they need fluid, if they need oxygen, but then that’s when you’re thinking about starting medications such as the steroid medication. So we give intravenous dexamethasone, or there are certain cytokine blockers such as tocilizumab (Actemra) that can be given to help treat the side effects of the cytokine release.

Other common side effects or that we’re seeing in more patients in the clinical trials, fatigue, rash, and then infections including upper respiratory infections, and then COVID-19 infection as well. So part of treatment of these side effects is early recognition of the side effects. So patients are monitored closely and that you’re dealing with the side effects to help them from worsening. I think infection prevention is very important with these. So it’s recommended to consider prophylaxis for certain infections. So antiviral medication to prevent viral, such as shingles reactivation, medication to prevent a specific type of pneumonia, PJP pneumonia, and then consideration I think of just making sure that patients are up to date on vaccination. And if patients do have infection while they’re getting treated, potentially delaying treatment or taking a break in order for them to recover from treatment.

Lisa Hatfield:

Okay, thank you. And this person did not give their name but is asking, Dr. Maddocks, I wanted to know how to travel as safely as possible. Is it advisable to get certain vaccines for travel like yellow fever? I plan to travel to Europe via plane and cruise. They say that there’s stage III non-Hodgkin’s follicular lymphoma getting treatment every eight weeks.

Dr. Kami Maddocks:

So this is a great question, and I’m probably going to answer this a little bit more generically, because I think that it can depend a little bit as far as what specific vaccines. But when thinking about travel, I think that it’s a good idea to look at where you’re traveling because both, where you’re traveling time of year you’re traveling and what you’re going to do when you’re somewhere can depend on what vaccines are recommended. I usually advise patients to consider looking at the CDC guidelines for recommendations for what should be received in that area, travel that time of year, what they’re going to be doing.

And then sometimes there are places that will actually have a travel clinic. Once I know what vaccines are recommended, the patient knows what vaccines are recommended, then I usually work with them and pharmacy to decide what vaccines, if they can receive all those vaccines or if there were certain ones that we may not recommend. In general, it can depend on a patient, what treatments they’ve received or if they’re actively receiving treatments. But in general, we like to avoid live virus vaccines in our patients. So I take into all those factors and then would recommend discussing the specifics with your physician.

Lisa Hatfield:

Luca is asking what are the long-term side effects of bispecific antibody treatment, and how will I be monitored for them after treatment ends?

Dr. Kami Maddocks:

So another great question. I think, when we think about the side effects in general, the bispecific antibodies in the CAR T both have those unique toxicity, cytokine release being the most common. And then you also have worry about the neurological toxicity. The difference is that, depending on the specific, bispecific or CAR T that you use, but we usually, typically see these occur in lower grade or not as severe with a bispecific antibody than you can see with a CAR T-cell therapy.

You can still have cytopenias and infection risk with these therapies. Whereas in chemotherapy, we think of that as more generalized toxicities, with the cytopenias, with the risk of infection with the GI toxicities. When we think about long-term side effects, so I think one of the important things to recognize is that bispecific antibodies have not been around that long in the scheme of things, though we can’t say, the risk of 20 years, what do we see or even 10 years.

But when we think about what we have seen, we’ve seen things like the cytokine release, the infections, the cytopenias, but what we haven’t seen is things like the secondary malignancies that we worry about when we think about chemotherapy or even maybe immunomodulatory therapy or secondary cancers that patients can develop. I think for long-term monitoring, right now, at least the biggest thing you want to think about is that these therapies do deplete the lymphocytes, for a prolonged time. And so the risk of viral infections or reactivation of infections, and making sure that’s being considered.

Lisa Hatfield:

Okay, thank you. That’s an important question. So another may possibly be a care partner, Marilyn. How can I best support my loved one during relapse and what should I do if I notice my husband with new or worsening symptoms?

Dr. Kami Maddocks:

So another great question. I think it’s first of all important to ask the physician about what symptoms to watch for. So you know, are there certain worsening new symptoms or worsening symptoms that seem more likely to be related to follicular lymphoma versus something else. I think it’s always important to encourage your loved one if they are experiencing new symptoms to reach out to the physician so that they can be evaluated. Because follicular lymphoma is a disease that many people live with and many people live with it for many years. We know that patients can experience other things.

Not everything is going to be just because of the follicular lymphoma. So it’s important to be evaluated, and recognize what is going on and what is attributed to the follicular lymphoma. I think being supportive, thinking of questions to ask and making sure that those questions are answered. I think thinking about, are there resources available? I think educating yourself is one of the most important things that people can do. So knowledge is power. So just participating in things like this I think can be very helpful, because learning about what’s out there, knowing that there are many options, I think being supportive and having a positive attitude, are all helpful things.

Lisa Hatfield:

Okay, thank you. So we have another big and important question from Aubrey. How can I live a full life with follicular lymphoma while managing the emotional toll of knowing the disease may relapse? And what lifestyle changes or habits should I focus on to maintain my health during remission?

Dr. Kami Maddocks:

Yeah, so this is another great question, and I think there’s probably lots of different ways to answer this or lots of different things to consider. So I think in general, as we’ve talked about follicular lymphoma is something that people live with for a long time. So thinking about just your general health and general disposition. So, we want to think about incorporating exercise, incorporating a healthy lifestyle, thinking about exercise, and being physically active.

Thinking about particularly diet and not saying that there’s any food that you need to avoid or any specific thing, but I think eating healthy is important. I think sleep hygiene is, can be very critical for patients. I think finding, and then just general health, it’s good to have a PCP so that you’re getting good routine health maintenance. We have to think about making sure that we’re managing other medical things like blood pressure, glucose, looking, doing other routine cancer screenings, depending, if somebody’s male or female, but the screening that’s recommended for that.

Now when we’re thinking about managing this does take an emotional toll because a lot of times, when somebody’s initially diagnosed, if they don’t need treatment, the question is always like, well, how long am I, is it going to be before I’m going to need treatment? How am I going to tolerate that treatment? How long is that treatment going to last? And then that resets once a patient’s had treatment. Well, how long will I stay in remission for this treatment? What’s going to be next?

I think things that can help with that are, sometimes I think involving like psychosocial oncology, I think support groups, I think that it’s very beneficial for many patients to talk to people, whether it be through a u look at the median age at diagnosis is in the 60s, and median overall survival is greater than 20 years. So many patients are going to live with this more like a chronic disease. And so learning to kind of knowing basic facts on what it is, what are the treatments that are available, what do those treatments look like, what are the reasons that you need those treatments? And that you are able many times in those periods of not needing treatment to live a very normal lifestyle and do things. I think making sure that, I think it’s important.

One thing that I think can be helpful is you’ll continuously follow up with your physician. So thinking about questions and concerns that you have throughout the period of time, writing them down that gets them out of your mind on paper. And then when you go to see your doctor next, you have that list of questions. Because I think, sometimes we think about things, and then we worry, worry, worry. But putting them down on paper or even sending them through like a secure MyChart email message and then talking them out, because a lot of times if you don’t do that, then when you go to see your physician you think, oh, I don’t really have any questions.

And then you leave and you’re like, oh, I should have asked these 10 different things. So again, I think asking for resources. So there are many different patient friendly resources out there. I think reading material that’s been written or vetted by medical professionals as opposed to just any random material can be very helpful for patients. And then again sometimes seeking out kind of peer support.

Lisa Hatfield:

Okay, great, thank you. Sean is saying that he was diagnosed with follicular lymphoma in 2022 and in an active treatment. What advice do you have for someone transitioning from patient to survivor? I am eager and fearful.

Dr. Kami Maddocks:

Awww. Well, another good question. And I think one thing I want to recognize is that somebody with cancer is defined as a survivor from the time they’re diagnosed moving forward. So you’re already a survivor. But when you, I do think, and I tell patients this, even when we’re talking about starting treatment, I do think that being aware of kind of where patients are at mentally is important.

Because when you go through, when a patient goes through treatment, they’re very focused on next steps and next steps when you’re going through treatment are, when’s my next treatment going to happen? When’s my next scan going to happen? When you get to that point, when you’re done with treatment, you no longer have those small milestones that you’re reaching the next treatment, the next scan. You now are like, oh my gosh, I had this treatment and now, how long is it going to last?

What’s going to happen to me? What else can happen to me? And there can be a lot of fear and anxiety. I would first tell you that’s totally normal. That is a normal feeling to have at this point. So I think one, recognizing that you have them is important. I think considering things like we’ve talked about, is there a survivorship clinic, is there psychosocial oncology? Is there something that might help in talking those things out? I think setting up milestones, what is the next thing? I’m going to have a three-month appointment, I’m going to have labs.

These are the things I need to be thinking about, but if I’m not noticing these also, what things can I do to return to the things I like to do. I think also I would go back to saying, I think this is where just thinking about getting good sleep, getting exercise, eating a healthy, balanced diet, and then socializing and making sure that you’re involving friends and family.

Lisa Hatfield:

Okay. Thank you. And, Sean, you’re already a survivor, Dr. Maddocks said so. So good luck, Sean. All right, Dr. Maddocks, thank you so much for being part of this Patient Empowerment Network START HERE program. It’s these conversations that help patients truly empower themselves along their treatment journey. On behalf of patients like myself and those watching, thank you so much for joining us, Dr. Maddocks.

Dr. Kami Maddocks:

Well, Lisa, thank you so much for having me. It’s been a real pleasure, and I hope everybody has a great day.

Lisa Hatfield:  

Thank you. I’m Lisa Hatfield. Thank you for joining this Patient Empowerment Network program.


Share Your Feedback

How Can We Effectively Manage Dose Adjustments to Balance Efficacy and Toxicity in CLL?

How Can We Effectively Manage Dose Adjustments to Balance Efficacy and Toxicity in CLL? from Patient Empowerment Network on Vimeo.

For CLL dose modification, what are some techniques to optimize efficacy and to minimize  toxicity? Experts Dr. Andres Chang from Emory University and Dr. Daniel Ermann from Huntsman Cancer Institute discuss common side effects they’ve seen in CLL patients and techniques they used for optimal care with minimized toxicity. 

Download Resource Guide  | Descargar guía de recursos

See More from EPEP CLL

Related Resources:

Optimizing CLL Therapy: Strategies for Dose Escalation and Reduction

Optimizing CLL Therapy: Strategies for Dose Escalation and Reduction

Optimizing Dosing Strategies in CLL: Insights for Healthcare Providers

Optimizing Dosing Strategies in CLL: Insights for Healthcare Providers

Addressing Practice Gaps in CLL Therapy: Overcoming Barriers and Enhancing Patient Care

Addressing Practice Gaps in CLL Therapy: Overcoming Barriers and Enhancing Patient Care

Transcript:

Dr. Nicole Rochester:

Well, let’s move into talking about side effects. And you all have already alluded to the importance of dose modification with regard to side effects and minimizing toxicity. So I’m going to go to you, Dr. Ermann. What techniques do you use in your practice for optimizing treatment efficacy while minimizing toxicity?  And feel free, if you’d like, to share a specific example.

Dr. Daniel Ermann:

Yeah. Great question. So in CLL, there are a lot of unique toxicities with our CLL-directed therapies. I’ll take, for example, BTK inhibitors. So BTK inhibitors have certain off-target effects. The way these medications work is they turn off BTK, and that’s like flipping a switch that decreases the growth of the CLL cells and eventually causes them to die. However, some of the unique toxicities we see are things like atrial fibrillation, bleeding, bruising, infections, to name a few.

So, for example, you would like to start a patient optimally on the maximum dose, which is the kind of recommended starting dose. However, let’s say a patient gets a side effect such as bleeding or atrial fibrillation, I usually will follow the package insert pretty closely. In most cases, the recommended management is to hold the drug until a side effect resolves and then resume at the same dose. In my practice, I found that with many of our novel therapies, there are some cases where you can continue the same dose, but oftentimes you’ll need to dose-reduce.

And I will say from my personal experience, I think dose reduction can make a big difference in the side effect profiles of these medications. I’ve seen reduced bleeding, for example, reduced rates of atrial fibrillation. With BCL-2 inhibitors, I’ve seen reduced rates of neutropenia, for example. And I’ll just say from my experience, I haven’t seen too much compromise in efficacy. So I think I would recommend for providers when you’re thinking about dose reduction, it’s really a balance of toxicity and efficacy. And I think with just how good our treatments are for CLL these days, I try to reduce toxicity. And I think in that way, it does maximize their efficacy.

Dr. Nicole Rochester:

Thank you, Dr. Ermann. What about you, Dr. Chang? How do you approach dose adjustments for CLL patients, particularly those who may be experiencing severe side effects? And what factors influence your decision-making process?

Dr. Andres Chang:

Yeah, so first of all, I agree with Dr. Ermann that I think trying to mitigate side effects and oftentimes following the package insert is really, really helpful. One of the things that I want to add, though, is I do spend quite a bit of time before starting any medication, educating patients and trying to teach them about what potential side effects, what to look for. And importantly, if there are mechanisms to mitigate or prevent those side effects, I will spend quite a bit of time talking about that. And these can be things such as taking caffeine to prevent an acalabrutinib-induced (Calquence) headaches, for example, maintaining adequate fluid intake and hydration to minimize the risk of tumor lysis, and so forth.

I find that by spending that time with patients ahead of starting therapy, that oftentimes it allows patients to identify the side effect and also start addressing it even before needing to come back to the clinic. My team, in addition to myself, also spends quite a bit of time, and we perform phone calls, follow-up phone calls, and things like that, that are conducted by my pharmacist or by my nurse. And together, I find that oftentimes just by talking through these potential issues, patients will feel a lot better.

Now, depending on how severe an adverse event is, or a side effect is, I tend to potentially dose-reduce somewhat quicker. Or if there’s an alternative, like in the case of BTK inhibitors, I will be a little bit more prone to switching from one BTK inhibitor to another, because there is data suggesting that if you don’t tolerate one BTK inhibitor, you can tolerate a second one. And that’s particularly true if we are seeing some of these side effects that arise in the long term, particularly with ibrutinib (Imbruvica), and switching them to acalabrutinib or zanubrutinib  (Brukinsa), oftentimes resolve those kinds of side effects. And I’ve seen that particularly true in cases where I see hypertension induced by ibrutinib (Imbruvica). I have a couple of patients where they are four or five years into ibrutinib therapy, came in with uncontrolled hypertension, I switched them to another BTK inhibitor, and the hypertension gets better controlled.


Share Your Feedback