Overcoming Barriers to Accessing Small Cell Lung Cancer Care

Patient Empowerment Network (PEN) has a deep commitment to educate and empower patients and care partners in the lung cancer community. Lung cancer treatment options are ever-evolving with new testing and treatments, and it’s essential for patients and families to educate themselves with health literacy tools and resources on updated information in lung cancer care. With this goal in mind, PEN created the [ACT]IVATED Small Cell Lung Cancer program, which aims to inform, empower, and engage patients to stay abreast of lung cancer care updates.

The [ACT]IVATED Small Cell Lung Cancer program is geared to newly diagnosed lung cancer patients, yet it is beneficial for limited stage and extensive stage patients alike and for patient advocates. [ACT]IVATED Small Cell Lung Cancer helps patients and care partners stay abreast of the latest options for their lung cancer, provides patient activation tools to help overcome barriers to accessing care and powerful tips for self-advocacy, coping, and living well with cancer.

SCLC [ACT]IVATED

Small Cell Lung Cancer and Proactive Patients

Unfortunately, the stigma of lung cancer follows small cell lung cancer (SCLC) patients as well. Patient navigator Diana explained some of the history of lung cancer stigma. “Even though smoking is a major risk factor for SCLC, nobody deserves to get cancer. Nicotine is an addictive substance that is extremely difficult for many smokers to quit – especially for those who started at a very young age. Past TV ads to stop smoking built a stigma around cigarette smoking that has created an environment of blame around lung cancer. The stigma is many times greater for extensive stage small cell lung cancer patients.

Advancing on the path to informed and optimal care requires patients to make efforts in self-education and empowerment. These efforts come in various forms but include approaches like improving clinical trial access, learning more from credible resources, asking questions to ensure your best care, and helping to educate others about lung cancer. Cancer patient Lisa Hatfield spoke with lung cancer expert Dr. Rafael Santana-Davila, Dr. Vinicius Ernani, and Beth Sandy to learn some key questions and actions for patients to take. 

Small cell lung cancer falls under one of two categories – limited stage or extensive stage. Dr. Rafael Santana-Davila explained the distinguishing factors and the importance of communication between the medical team members. “In the majority of cases, there’s a very clear distinction, for example, patient has metastatic disease to the liver, that clearly is extensive, stage, but there are occasions where, limited and extensive is very hard to know…all of medicine is a team sport, but treatment of cancer is more because the medical oncologists need to talk to the radiation oncologists to make sure that we’re on the same page as to what is the best treatment we can offer a patient.“

It’s essential for SCLC patients and care partners to prepare themselves for the treatment journey to help ensure their best care. Dr. Santana-Davila shared some key questions to ask to empower themselves for treatment. “…key questions that families should ask at the outset of care, and this is for extensive stage cancer as well as any other cancer, is ‘What are the goals of treatment? What do I expect it to be? How is my life going to look a few months from now? And what can I expect?’ That is, for me, very important that patients know before they start on the journey of treatment.

Thoracic medical oncology nurse practitioner Beth Sandy from Abramson Cancer Center shared patient advice for questions to ask at the outset of care to help patients empower themselves. “…make sure you know your stage, make sure you’re understanding what your treatments will be, and then make sure you understand what support services are available to you.”

Patients from underrepresented communities and all patients should ask questions to help ensure optimal care. Dr. Santana-Davila shared advice on proactive questions to ask. “’What are the latest developments in the treatment of this lung cancer? And am I eligible to receive those treatments? And is this a time where I should seek a second opinion or be referred to a clinical trial and another center?’”

Nancy Gatschet

Nancy Gatschet

Small cell lung cancer patients must be heard by their doctors for their best care. SCLC survivor and PEN Board Member Nancy Gatschet shared her experience with her care team members and their roles in her care. “Doctors matter. A lot. I was treated at an NCI-designated Comprehensive Cancer Center by several exceptional doctors. What made them exceptional? Their listening and observational skills first and foremost, their dedication to staying current with research, and their caring.”

Small Cell Lung Cancer Clinical Trials and Future Treatments

 Clinical trials are vital for refining and advancing treatments for small cell lung cancer. Dr. Santana-Davila shared his perspective about clinical trials and also explained that many clinical trials can assist patients with transportation and lodging costs. “So it’s important for patients to consider clinical trials. That is where we’re analyzing the future medications, and many of those future medications will become the standard of care and by participating in clinical trials, patients will have access to those medications.

Even though non-small cell lung cancer has had more treatment advancements in comparison to small cell lung cancer, that doesn’t mean that the future is bleak. Dr. Santana-Davila shared his perspective about the future of SCLC care and clinical trial opportunities. “So although it’s true that patients with non-small cell lung cancer have had more advances, there is still a lot of hope for the future. And what I can tell you it’s changing rapidly. And in a year, the treatments that we may have available will be different. And all those things are right now going into clinical trials.”

Dr. Vinicius Ernani from the Mayo Clinic sees a bright future for SCLC treatment as well. He shared his perspective with Lisa Hatfield, “…we have some important drugs coming in early development, like I mentioned before, ADCs, antibody drug conjugates. So my hope, that is we are going to be in a better spot in the near future.

SCLC [ACT]IVATED

[ACT]IVATED Small Cell Lung Cancer Program Resources

The [ACT]IVATED Small Cell Lung Cancer program series takes a three-part approach to inform, empower, and engage both the overall lung cancer community and patient groups who experience health disparities. The series includes the following resources:

[ACT]IVATED Animated Video Series

[ACT]IVATED Expert Interviews

[ACT]IVATED Toolkit

[ACT]IVATED Guides

Though there are small cell lung cancer challenges and stigma, patients and care partners can take action to educate themselves to help ensure optimal care. We hope you can benefit from these valuable resources to aid in your lung cancer care for yourself or for your loved one.

Expert SCLC [ACT]IVATION Tips

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SCLC Expert Tips

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SCLC Specialist Treatment Centers

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Overcoming Small Cell Lung Cancer Care Barriers

Overcoming Small Cell Lung Cancer Care Barriers from Patient Empowerment Network on Vimeo.

How can small cell lung cancer care barriers be overcome? Expert Beth Sandy from Abramson Cancer Center discusses common barriers for patients in remote areas and underrepresented communities, advice for accessing resources and support, and tips to ensure lung cancer stigma doesn’t interfere with care.

[ACT]IVATION TIP

“…work very closely with the social worker in your practice who is very familiar with all of these different resources that are available…I’ll say up front is when providers like doctors or nurses ask you if you’ve ever smoked, that is by no means being something accusatory. It actually helps us understand the trajectory of your disease better… Another thing that we know about both non-small and small cell lung cancer is that patients who have smoked actually often respond better to immunotherapy. So that can help us understand just how your disease may act and what treatments may even work better.”

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

Related Resources:

Extensive Stage Small Cell Lung Cancer _ Empowering Symptom Management

When Can Small Cell Lung Cancer Patients Use Palliative Care

Small Cell Lung Cancer Care | Optimizing Team Communication

Small Cell Lung Cancer Care | Optimizing Team Communication


Transcript:

Lisa Hatfield:

So if we can discuss some barriers to getting care for small cell lung cancer. I’ll break it down to three different areas or three different barriers. So if you could discuss or give advice for a person living with small cell lung cancer in a rural area who might not have access to state-of-the-art cancer care. Second area, if you have any advice or specific considerations or recommendations for small cell lung cancer, people dealing with small cell lung cancer from underrepresented communities. And then third, if you need me to remind you of these, I sure will. Third, kind of the elephant in the room, if you can address one of the barriers being the stigma that’s associated with not only small cell lung cancer but with any lung cancer, maybe address that as a barrier and any advice you have for a person dealing with that, we’d appreciate that.

Beth Sandy:

Yeah, so there are a lot of barriers. So let’s talk about the first one. If you’re living in a rural area and having access to state-of-the-art cancer care. I think the one thing that I’ll say here is that small cell lung cancer responds very well and very quickly to frontline treatment, which is chemotherapy and immunotherapy, and these are approved no matter where you live. This is not a clinical trial. You don’t have to go to a fancy hospital to get this.

As a matter of fact, the two chemotherapy drugs we’ve been using for 20 years, so you can get them anywhere. So now the point is about driving. So this is something you have to come back three days in a row for. So is there a place where you can stay close by? So at my institution, we have a charitable organization who turned an old hotel that’s about 30 minutes outside the city into a place for our patients to stay overnight for free. So that is kept up by charitable donations and so if patients live several hours away and they need a three-days-in-a-row treatment, a lot of times they will stay at that location.

So is there something like that that’s available if you’re driving from very far away? But I think the other thing that also concerns me is your blood counts can drop, and you can get sick from this chemotherapy. Most patients do pretty well, but if you’re getting sick, how far are you from the closest hospital? If you have a fever and your white blood cells are probably low, you need to go to the emergency room. So I think those are things to sort of start preparing for ahead of time and thinking, okay, do I maybe need to stay with family members who may be closer to a hospital? Just again, depending on how far away you are.

Where I live, it snows in the winter, so that’s always something that, especially the people in the more mountainous regions are like, what if we get like a foot or two feet of snow overnight and I can’t get out in the morning? How’s that going to affect me? So really thinking about those kinds of things. And are there, again, charitable organizations or money or grant support to help pay for rides or gas money even? Sometimes the American Cancer Society can help with things like that. 

Are there specific considerations or recommendations for small cell lung cancer for patients who are in underrepresented communities? So yeah, I think again, talking about getting back and forth to treatment, it can be really difficult, especially with small cell lung cancer. If you’re on radiation, radiation is daily and chemotherapy is three days in a row, like I’ve said. So it’s a lot of back and forth. Do you have to pay for parking? Do you have the rides?

Again, this is where a lot of times we’ll work with our social workers in both radiation oncology or medical oncology to help with transportation. There are transportation options, especially within many insurance plans. So that’s something to look into. The other thing is that at my institution, you have to pay to park, but we offer free parking for patients who are getting chemotherapy and radiation. So that’s not going to be something that you have to pay for on a daily basis, because that would be very expensive.

Other things like meals, so do you probably not feel like going to the store or cooking or aren’t even able to, especially when you’re receiving such intensive therapy. So there are definitely programs that are available to deliver meal services to patients and so that’s something, again, that we work really closely with social work to get these types of things set up. And again, some of this stuff is actually covered through your insurance, visiting nurses, home health aides to help.

The American Cancer Society, I go back to them because they have a lot of resources here. I work in the State of Pennsylvania, and in the State of Pennsylvania, if you are a caregiver to someone, there are actually financial resources that you can be reimbursed just for being their caregiver, especially if that takes you away from your work. So there are a lot of things that working with the social worker who understands the laws and the grants that are in your local communities can be really helpful.

So hopefully, I was going to say my activation tips for this really is to work very closely with the social worker in your practice who is very familiar with all of these different resources that are available. But then I forgot to address the last one, which is the stigma, and I do want to address this. This is something I could talk about for a long time. There is certainly a stigma associated with lung cancer and for patients who have smoked. And one thing I’ll say up front is when providers like doctors or nurses ask you if you’ve ever smoked, that is by no means being something accusatory. It actually helps us understand the trajectory of your disease better.

For example, if you were diagnosed with small cell lung cancer and you said, “Well, I smoked in my 20s and 30s, but now I’m 70,” we might question the diagnosis a little bit. We may do some further testing to make sure this is the right thing. Another thing that we know about both non-small and small cell lung cancer is that patients who have smoked actually often respond better to immunotherapy. So that can help us understand just how your disease may act and what treatments may even work better.

So when we ask you if you smoked, just be honest because that can change the way we think about your disease, but by no means is that something accusatory. The second concern with the stigma is that people are less likely to get screening for lung cancer or to be worked up early because they feel like, “Well, I did this to myself, so maybe it doesn’t matter.” But that’s not true. Obviously, I don’t want people to smoke. It’s bad for you for a million reasons, not just lung cancer, but cardiac disease and other types of cancers. There’s a lot of reasons that smoking is not good for you.

But that being said, lung cancer can still be a curative disease if we catch it early. So even if you’ve smoked or are currently smoking, you can get lung cancer screening and catch things early and get them taken care of. We are there to help you with whatever illness or addiction to cigarettes that you have, and we’re going to help you, number one, treat that, and help you quit smoking, but also treat your disease as we would treat anyone else’s. So getting that screening for lung cancer or that early workup as soon as you develop symptoms is going to be beneficial.


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Small Cell Lung Cancer Care | Optimizing Team Communication

Small Cell Lung Cancer Care | Optimizing Team Communication from Patient Empowerment Network on Vimeo.

How can small cell lung cancer team communication be optimized? Expert Beth Sandy from Abramson Cancer Center shares advice for communication between care team members and for setting expectations about symptom management and treatment plans.

[ACT]IVATION TIP

“…don’t feel afraid or scared to ask the questions that you want the answers to. And if you do, it’s okay to change providers, to be honest with you, because you should have that level of trust and ability to be open with your provider.”

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

Related Resources:

Extensive Stage Small Cell Lung Cancer _ Empowering Symptom Management

How Can Small Cell Lung Cancer Patients Ask About Care Goals

How Can Small Cell Lung Cancer Patients Ask About Care Goals

Overcoming Small Cell Lung Cancer Care Barriers

Overcoming Small Cell Lung Cancer Care Barriers


Transcript:

Lisa Hatfield:

So, Beth, how do you facilitate open and transparent communication between oncology nurses, patients, and their families and care partners to address concerns and set realistic expectations to ensure that everyone is on the same page regarding the symptom management and treatment plans?

Beth Sandy:

Yeah. So again, this is something that happens over time and I think it’s really important for patients to feel comfortable with their providers. If you don’t feel that you can ask your doctor or your nurse practitioner or your nurse, whoever you’re seeing, if you don’t feel comfortable that you can ask questions about your treatment and your disease, that’s a problem. You should have a good relationship with them. I feel like us in oncology as opposed to other fields like dermatology or whatever, I think we have a more personal relationship with them because this is a disease that often they’re dealing with for a long time and we want to make sure that we’re doing what’s best for them, what’s best for the patient.

So sometimes for me, again, I’ll say, how are you tolerating the treatment? Are you in bed a lot at home? Or are you feeling pretty good on the treatment? And then a lot of that too will partially be, well, the treatment is working very well. Are you willing to stay on it based on the side effects you’re having? But for me, it’s so much easier if the patient starts the conversation and says something along the lines of like, “I’m not tolerating this well, I’m not feeling well. Is there something more we can do? Or can we give less chemo?” Patients ask me that all the time.

And then we have a discussion about the pros and cons of that. So everything’s a discussion. Oncology is not black and white. There is gray area that we can work with you to improve your quality and be open about how much you want to know. Do you want to know exact numbers of your chances of survival? Do you want to know exact numbers of exactly how often this exact chemo works for other patients? We can give you those, but we don’t have to. So we really want to, for the most part, always instill hope, because I’ve seen lots and lots of miracles and great stories with patients who have done way better than I ever thought they would. So I would hate to say to someone, oh, this is the average when lots of my patients will do better than that. 

So I think my activation tip here is don’t feel afraid or scared to ask the questions that you want the answers to. And if you do, it’s okay to change providers, to be honest with you, because you should have that level of trust and ability to be open with your provider.


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How Can Small Cell Lung Cancer Patients Ask About Care Goals?

How Can Small Cell Lung Cancer Patients Ask About Care Goals? from Patient Empowerment Network on Vimeo.

Small cell lung cancer patients can make care goals, but how can they ask about them? Expert Beth Sandy from Abramson Cancer Center shares her perspective about care goals, proactive questions, and advice for doctor-patient communication.

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

Related Resources:

When Can Small Cell Lung Cancer Patients Use Palliative Care

Coping With Small Cell Lung Cancer Rapid Treatment

Overcoming Small Cell Lung Cancer Care Barriers

Overcoming Small Cell Lung Cancer Care Barriers


Transcript:

Lisa Hatfield:

As a person living with cancer myself, one of the things I know that is often focused on by my healthcare team is the standard of care, and then it’s more of a reactive approach to dealing with symptoms. Talking about goals of care seems more proactive. So for a patient going in and wanting to talk about goals of care, maybe it’s not brought up by their care team, would it be appropriate for that patient to say, “Hey, I’d like to talk about some goals for my care too?” And not just have it be a reactive approach, but more of a proactive approach. Would that be a weird thing to ask the care team or is that appropriate for a patient to ask that question? Can we have a conversation about the goals for my care?

Beth Sandy:

No, I would love if a patient said that to me, because these are conversations that we want to have with patients. We want to have an open communication so that everybody’s on the same page of understanding of what’s going on with their cancer, but patients are often reluctant, and I get it. To be honest, a lot of doctors are reluctant. Sometimes they feel awkward in the conversation. So it goes both ways, but if the patient is open and wants to have that line of communication, I think that’s great. When I say goals of care, I mean what are your goals out of the treatment I’m giving you?

And it’s something because you bring up a good point. In small cell lung cancer, goals of care are very important, because there are a lot of things we can do to you. Some patients do not want their whole brain radiated. There’s a risk there of loss of cognitive function, and especially in the extensive stage setting, we can offer it. There is actually a slight advantage in survival to doing preventative for whole brain radiation.

However, the trade-off is that you can have neurologic decline and physical decline from that. So it’s like do I want to take the risk of having that side effect to prevent the brain metastases? So these are goals of care discussions like, is this right for me? Is this something I want to do and risk feeling this way? And some of that may depend on your performance status which is something that we used to say like, do I have a lot of other conditions? I have bad COPD, and I’m in a wheelchair already, and if I get this whole brain radiation, will I never walk again? Something like that. Those are all things that are important to discuss with your treatment team.


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When Can Small Cell Lung Cancer Patients Use Palliative Care?

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

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

[ACT]IVATION TIP

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

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

Related Resources:

How Can Small Cell Lung Cancer Patients Ask About Care Goals

How Can Small Cell Lung Cancer Patients Ask About Care Goals

Overcoming Small Cell Lung Cancer Care Barriers

Overcoming Small Cell Lung Cancer Care Barriers


Transcript:

Lisa Hatfield:

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

Beth Sandy:

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

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

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

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

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

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

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


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Extensive Stage Small Cell Lung Cancer | Empowering Symptom Management

Extensive Stage Small Cell Lung Cancer | Empowering Symptom Management from Patient Empowerment Network on Vimeo.

How can extensive stage small cell lung cancer patients be empowered for symptom management? Expert Beth Sandy from Abramson Cancer Center discusses how she empowers patients and care partners, common treatment side effects, and advice for patients preparing for treatment.

[ACT]IVATION TIP

“…make sure before you leave the office or on the day you’re coming for chemotherapy that you have all your questions answered, that you feel pretty confident in what side effects you may experience. I am a proponent of writing down your questions.”

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

Related Resources:

Coping With Small Cell Lung Cancer Rapid Treatment

When Can Small Cell Lung Cancer Patients Use Palliative Care

Small Cell Lung Cancer Care | Optimizing Team Communication

Small Cell Lung Cancer Care | Optimizing Team Communication


Transcript:

Lisa Hatfield:

Beth, extensive stage small cell lung cancer and its associated treatments often come with challenging symptoms. How do you prioritize the patient education to empower both your patients and their care partners in recognizing and managing these symptoms at home?

Beth Sandy:

Yeah. So the treatments that we have are predominantly chemotherapy. We also can use immunotherapy, and these have a whole host of different side effects. Some patients may be dealing with just symptoms of the disease like shortness of breath or cough, but then when you add in the chemotherapy, it’s going to add a whole host of other side effects. I think there are a few important things to note here. Number one, know the names of the drugs that you’re getting, and at my institution, we will print them out for you with an  education sheet. So we like to give printed materials, because it’s hard to remember everything we say and not everybody’s going to sit there and take notes and write it down, so we give printed materials. I think that’s important. And then understanding the schedule.

So typically the first-line treatment that we use for this is three days in a row. It’s given once every three weeks. So you’re not just coming in one day. You actually have to come in three days in a row, and most cancer centers aren’t open on the weekend, so you would often have to be preparing to start this regimen either on Monday, Tuesday, or Wednesday.

So just think about that. We rarely start these regimens on a Thursday or Friday, because we want that consecutive three days in a row. There are scheduling issues that come into play here. And then the side effects, so we can predict really well what the side effects actually are going to be. I often can’t predict a lot of things with cancer, but side effects of chemotherapy are fairly predictable, and truthfully, most patients are going to lose their hair with this treatment. It grows back. So don’t worry. It grows back, but in the beginning, hair loss is something that may happen, so we need to tell patients that. No one wants to be at home, and all of a sudden all your hair falls out and you didn’t know that.

And then there’s chemotherapy side effects, things like lowering of blood counts, nausea. What I do want to say as I’ve been doing this for 20 years, our supportive care medications for preventing and treating nausea are so much better now. So it’s nothing like it was 20 years ago, and 30 years ago. When I started as a nurse, we didn’t have good medications then. We’ve really good medications now. So nausea tends to not be as big of an issue as what you may have experienced with a family member in the past, so that usually we can prevent pretty well.

But talking about the lowering of blood count is a big issue that it can put you at risk for infection, you may need blood transfusions. These are things that you have to talk about. So just make sure you have a pretty good understanding of that. The other thing we can predict is fatigue. So most patients are going to get fatigue, and usually it will be in the first week of treatment, but it won’t last the entire three weeks between the treatments.

So my activation tip here for this would be to make sure before you leave the office or on the day you’re coming for chemotherapy that you have all your questions answered, that you feel pretty confident in what side effects you may experience. I am a proponent of writing down your questions and bringing them in and I like when patients do that because then I can answer them, because otherwise I feel sometimes like did I answer everything? Do I forget anything that’s important to you? What may be important to you may not be as important to another patient? So write down your questions and make sure you have all of them answered before you leave especially when it comes to chemotherapy side effects.


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Coping With Small Cell Lung Cancer Rapid Treatment

Coping With Small Cell Lung Cancer Rapid Treatment from Patient Empowerment Network on Vimeo.

Small cell lung cancer treatment often must start quickly following diagnosis, so what should patients know? Expert Beth Sandy from Abramson Cancer Center explains the importance of rapid treatment and shares advice to help ensure optimal patient care.

[ACT]IVATION TIP

“…if you are short of breath or coughing, get to the doctor…If it’s more than a week and over-the-counter medications aren’t helping, go and get worked up because this is very much a curable illness if we can catch it early. So we want to catch this as early as we can, but you have to get to the doctor and get that workup going…if you are diagnosed with this, make sure that your doctor or when you’re calling in to get a new patient appointment, they know this is small cell, not non-small cell. This is small cell lung cancer. It’s a more aggressive type, and you should be seen immediately very quickly to get started on therapy.”

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

Related Resources:

How Can Extensive Stage Small Cell Lung Cancer Symptoms Be Managed

Extensive Stage Small Cell Lung Cancer _ Empowering Symptom Management

How Can Small Cell Lung Cancer Patients Ask About Care Goals

How Can Small Cell Lung Cancer Patients Ask About Care Goals


Transcript:

Lisa Hatfield:

So, Beth, small cell lung cancer spreads quickly, so treatment often needs to start right away. How do you help your patients and their loved ones cope with the rapid changes in their health, both physically and emotionally, and the quick start of the intense treatment they’ll receive?

Beth Sandy:

I can’t stress this enough. As soon as someone is developing symptoms of shortness of breath or a cough, it’s really important to get to the doctor because this type of lung cancer can spread very quickly, but you may not even know you have this. So if you have a cough or shortness of breath, it’s important to get to the doctor. Getting a chest X-ray is really easy. It’s cheap, it’s easy, it’s fast, and it’s something that will show this. Almost nine times out of 10 is going to show if you have this type of lung cancer on just the chest X-ray. So it’s important to get your workup very quickly. That’s the first thing I’ll say.

Once you’re diagnosed with extensive stage small cell lung cancer, it’s very important that you are treated quickly. In my office, if you call and you have this diagnosis, we see you within seven days. This is not something…whereas other cancers, if there’s longer than a seven-day wait, they may get pushed the following week. This is a patient that we will see within the week, because it’s important to get them treated right away. A part of that is because they respond so well. Treatments for small cell lung cancer work very well, especially early on, so we need to get those treatments going very quickly because like you said, this is a very rapidly progressing disease. So I think my activation tip really here for this question is…

Well, two, I have two activations, but the first one is if you are short of breath or coughing, get to the doctor. Don’t just say, “Oh, it’s probably my allergies.” If it’s more than a week and over-the-counter medications aren’t helping, go and get worked up because this is very much a curable illness if we can catch it early. So we want to catch this as early as we can, but you have to get to the doctor and get that workup going. My second activation tip is, like I said, for sure if you are diagnosed with this, make sure that your doctor or when you’re calling in to get a new patient appointment, they know this is small cell, not non-small cell. This is small cell lung cancer. It’s a more aggressive type, and you should be seen immediately very quickly to get started on therapy.


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How Can Extensive Stage Small Cell Lung Cancer Symptoms Be Managed?

How Can Extensive Stage Small Cell Lung Cancer Symptoms Be Managed? from Patient Empowerment Network on Vimeo.

When extensive stage small cell lung cancer patients experience symptoms, how can they be managed? Expert Beth Sandy from Abramson Cancer Center discusses collaborative symptom management for ES-SCLC patients for common symptoms including respiratory issues, appetite and digestion, and neurologic symptoms.

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Transcript:

Lisa Hatfield:

Beth, how do you approach collaborative symptom management for newly diagnosed patients with extensive stage small cell lung cancer?

Beth Sandy:

So when you’re newly diagnosed, it really depends. A lot of our patients will end up having symptoms such as shortness of breath or a cough or even coughing up of blood just because the natural biology of small cell lung cancer tends to be a very centralized cancer, the airways. So symptoms typically are respiratory, and we have a lot of really good treatments to help with things like shortness of breath and cough. To be honest with you, this type of lung cancer is so responsive to chemotherapy that sometimes the chemotherapy alone will help your symptoms because it responds so quickly.

If that’s not the case, we can do radiation also to help minimize the cancer where it may be causing shortness of breath, or certainly if you’re coughing up blood, a lot of times we’re going to go in and do something like radiation. There are other things that we can prescribe such as inhalers or medications that are prescriptions that can help with cough like certain syrups and other pills that can help reduce cough. Those typically are often the main respiratory symptoms. Other things that we may find are things like weight loss and decreased appetite. That can be harder, I will say.

There used to be medications that we used for appetite stimulation. The problem with some of those medications is they were increasing the risk of blood clot, which is already a risk when you have lung cancer, so we don’t have to use them as often. But there are some medications that we can work with, and we work with oncology nutrition a lot as well to help patients, especially when weight loss is an issue. There’s a whole other set of side effects the patient’s going to have once they start treatment, but they usually don’t typically present with things like nausea or vomiting, or constipation or diarrhea. Those things can be side effects of treatment.

Another thing that can be common in extensive stage small cell lung cancer is metastasis to the brain. So sometimes patients will have headaches or neurologic changes, but the good thing is that’s very responsive to steroids and radiation, so the sooner we get people on treatment, really those symptoms tend to improve very quickly. The activation tip for this really would be to make sure you let the nurses and doctors know exactly what sometimes you’re experiencing, because we really do have a lot of good supportive care medications, and truthfully the treatment for the cancer should really help improve your symptoms pretty quickly with this disease.


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Small Cell Lung Cancer Clinical Trials and DeLLphi Study Update

Small Cell Lung Cancer Clinical Trials and DeLLphi Study Update from Patient Empowerment Network on Vimeo.

What value might small cell lung cancer (SCLC) clinical trial participation and the DeLLphi study offer patients? Expert Dr. Vinicius Ernani from the Mayo Clinic explains the significance of clinical trial participation and what is being studied in the DeLLphi trial for SCLC care.

[ACT]IVATION TIP

“…always ask your team about clinical trials. And again, I recommend patients, if it’s a reasonable clinical trial, I will always recommend my patients to be enrolled in it.”

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Woman doctor speaking with woman patient.

Advice for Small Cell Lung Cancer Patients Considering Clinical Trials 


Transcript:

Lisa Hatfield:

Dr. Ernani, can you speak to the importance of expression of DLL3, what it is and what it means for small cell lung cancer research, and why is clinical trial participation so important in small cell lung cancer? And what advice do you have for patients who are considering a clinical trial?

Dr. Vinicius Ernani:

Yeah, so DLL3 is a protein expressed on the cancer cell of the majority of those patients with small cell lung cancer. And that’s where, exactly where tarlatamab, which is, it’s the BiTE, the T-cell engager that I mentioned before, that’s one of the targets. So the tarlatamab, it binds to the DLL3 on the surface of the cancer cell, and also bind to the CD3 at the T cell, right?

So that activation, the tarlatamab does that bridge and that activation enhances or activates the T cells to go there and fight the cancer. What we’ve seen in DeLLphi study with the tarlatamab is that the responses are irrespective of the DLL3 expression. But that being said, again, is the target of tarlatamab. And so it, again, it binds to the DLL3 the cancer cell, and it binds to the CD3 on the T cell.

And that activation enhances the T cell to fight against the cancer. Why is clinical trial participation so important in small cell? Well, I think I encourage all my patients to participate in clinical trials because some of the treatments that you can only get in clinical trials today, they might become the standard of care tomorrow.

Let’s say patients on immunotherapy five years ago, there are still some patients that are on trial, they’re still getting immunotherapy. And now, basically every disease you can treat the patients with immunotherapy. So you never know. The trial that you are enrolled in today might be the new standard of care tomorrow, and you might be having this chance to get it very early in the course of your disease.

So my activation tip for this question is, always ask your team about clinical trials. And again, I recommend patients, if it’s a reasonable clinical trial, I will always recommend my patients to be enrolled in it.


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Understanding Small Cell Lung Cancer Research News and Future Treatments

Understanding Small Cell Lung Cancer Research News and Future Treatments from Patient Empowerment Network on Vimeo.

What do small cell lung cancer (SCLC) treatment and the future of treatment look like? Expert Dr. Vinicius Ernani from the Mayo Clinic discusses SCLC treatment progress and small cell lung cancer clinical trials including the DeLLphi trial.

[ACT]IVATION TIP

I think stay tuned. This tarlatamab might become, down the road, a new standard of care for our patients.”

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Small Cell Lung Cancer Clinical Trials and DeLLphi Study Update

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Woman doctor speaking with woman patient.

Advice for Small Cell Lung Cancer Patients Considering Clinical Trials 


Transcript:

Lisa Hatfield:

And, Dr. Ernani, can you please explain research advancements in immuno-oncology and what this means for extensive-stage small cell lung cancer patients? And how do you envision the treatment landscape evolving over the next five to 10 years? 

Dr. Vinicius Ernani:

Yes. So over the last 30 years, we’ve had multiple Phase II, Phase III trials and, unfortunately, we were not able to move the needle in small cell lung cancer. However, over the last few years with the advancement of immunotherapy and incorporating immunotherapy to the standard carboplatin (Paraplatin) and etoposide (Toposar), we were able to finally make some progress in small cell lung cancer.

So now we know that the standard of care is to give chemotherapy plus immunotherapy, and we have at least three to four randomized Phase III trials showing the benefit of adding immunotherapy to chemotherapy. And I think this is a very exciting time for small cell. We are seeing at least over the last couple of meetings, over the last year, I’ve been seeing at least two promising drugs.

 One is tarlatamab that was the Phase II studies called the DeLLphi trial, was recently presented at ESMO. And there’s also an antibody drug conjugate that has also been very promising in small cell. So we’ll see how these studies are going to play out, especially the antibody drug conjugate, that’s still a Phase I study. So it’s a little bit early, but encouraging response rates. And the tarlatamab, which is a BiTE, and what I mean by BiTE, is a bi T-cell specific engager. I think it’s probably going to be soon approved by the FDA, and I think it’s going to change the standard of care in small cell again.

 Lisa Hatfield:

Dr. Ernani, with regard to the DeLLphi trial, can you explain who that is for and more specifically maybe what the hope is for patients and their families?

Dr. Vinicius Ernani:

Yeah. So the DeLLphi trial was a Phase II study. So usually we have three types of study, right? First, we have the Phase I study. Phase I studies are usually looking at how safe is a drug, but we are not looking too much of how active the drug is. We’re just making sure that the drug is safe to give to the patients. A Phase II study is a little bit bigger than a Phase I, and we are looking still at safety, if the treatment is safe, but we are trying to look a little bit more careful and how active this drug is.

In Phase III, those are usually big studies that randomizes 200, 300, 400 patients to the standard of care compared to the new drug. And that’s usually where we get the FDA approvals. So the DeLLphi-301 trial was a Phase II study that enrolled patients with heavily pretreated small cell lung cancer, extensive stage small cell lung cancer, to receive tarlatamab.

 And they had two doses. It was 10 milligrams and 100 milligrams. And it seems that the 10 milligram cohort, that actually the responses were even better than the 100 milligrams. So we saw the presentation at ESMO, it was actually published in one of the most respected…probably the most respected journal of medicine, the New England Journal of Medicine, and there was a response rate of 40 percent. So if we could give tarlatamab for patients that fail at least two lines of treatment, the chances of them responding to tarlatamab is about 40 percent.

And more importantly, I think that the duration of response was greater than six months. So what I mean by that, more than 50 percent of the patients that received this drug, they controlled the cancer for at least six months. So I think that’s a very positive about this drug.

Lisa Hatfield:

Great, thank you. And then one follow-up question I have about that. So if a patient were to come to you or go to their local oncologist and say, I’m really interested, I heard about this DeLLphi trial or any clinical trial, what is the advice you would give to that patient on how to access that clinical trial?

Dr. Vinicius Ernani:

Well, unfortunately, we don’t have at our institution, what I usually help my patients,  I go to clinicaltrials.gov and I type their cancer, and I go over with them on where the trials are open, and we try to find a facility or a cancer center that is close to where they live. So that’s what I usually do when I’m trying to find a clinical trial that I don’t have available in my site.

My activation tip for this question is, again, I think stay tuned. This tarlatamab might become, down the road, a new standard of care for our patients.


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Starting Time-Sensitive Small Cell Lung Cancer Treatment

Starting Time-Sensitive Small Cell Lung Cancer Treatment from Patient Empowerment Network on Vimeo.

Some small cell lung cancer (SCLC) treatment calls for time-sensitive treatment. Expert Dr. Vinicius Ernani from the Mayo Clinic shares how he works with patients who will most likely have optimal results with prompt treatment and advice for patients considering rapid treatment.

[ACT]IVATION TIP

“…at least give the treatment a try. I think that you’re going to be positively surprised that you’re going to feel better within a few weeks.”

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Transcript:

Lisa Hatfield:

Dr. Ernani, for some small cell lung cancer patients, understanding treatment options is crucial and sometimes requires swift decisions. How do you work with your patients and families to make treatment decisions that might have to be made rather rapidly? 

Dr. Vinicius Ernani:

Well, small cell, as we know, it’s an aggressive type of cancer, it divides very quickly. And because of that the patients usually, they tend to be symptomatic, so they have a lot of symptoms at the time that we see them. And if this disease, if we left untreated and the patient has extensive stage, so the disease has spread, the prognosis can be poor.

That being said, because small cell divides very quickly, chemotherapy combined with immunotherapy can help these patients fairly quickly. We can see patients in a matter of two to three weeks, they report that their shortness of breath is much better, they’re feeling better, they’re more energetic, they can do more things at home.

So we can see a rapid positive response to treatment very quickly. So when I explain this to my patients, most of the patients, they have no hesitation to say, yeah, I want to proceed with chemotherapy. And I tell them chemotherapy will help you feel better and also help you survive longer. And we are very fortunate that sometimes the patients are able to live years, they’re able to meet some live, let’s say, like a wedding of a grandkid or important events in their life. So I always recommend them to at least give it a shot.

My activation tip for this question is at least give the treatment a try. I think that you’re going to be positively surprised that you’re going to feel better within a few weeks.


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[ACT]IVATED SCLC Resource Guide en Español

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