Tag Archive for: Lurie Cancer Center

Advice for Accessing Financial Resources for Lung Cancer Care

Advice for Accessing Financial Resources for Lung Cancer Care from Patient Empowerment Network on Vimeo.

Is there financial assistance available for lung cancer patients? Lung cancer expert Dr. Jyoti Patel shares support resources and tips to help reduce the financial burden of treatment.

Jyoti Patel, MD, is Medical Director of Thoracic Oncology and Assistant Director for Clinical Research at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. She is also Associate Vice-Chair for Clinical Research and a Professor in the Division of Hematology and Oncology at Northwestern University Feinberg School of Medicine. Dr. Patel is a leader in thoracic oncology, focusing her efforts on the development and evaluation of novel molecular markers and therapeutics in patients battling non-small cell lung cancer. Learn more about Dr. Patel.

See More from Thrive Lung Cancer

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Advice for Managing Lung Cancer Symptoms and Treatment Side Effects

Why Lung Cancer Patient Advocacy Is Essential

Personalized Medicine: Making Lung Cancer Treatment Decisions


Transcript:

Katherine:

Dr. Patel, we’d be remiss if we didn’t bring up financial concerns.  

Treatment and regular appointments can become quite expensive. So, understanding that everyone’s situation is different, where can patients turn to if they need resources for financial support?  

Dr. Patel:

When your team first talks to you about therapies, it’s important that they have transparency about what something may cost or the risks that you may incur by starting treatment. However, most of us have access to wonderful financial teams and financial counselors that can help you manage this.  

Many of our industry partners and friends are able to have assistance programs to provide oral drugs at discounted rates or to work, again, with organizations in which you may be able to have reduced rates for many of your drugs. Most of the infusional drugs, again, should be covered by insurance. But outside of drug costs, there are a lot of other costs.  

So, parking every time you come for a doctor’s appointment. Time off from work. Time that you’re hiring a babysitter to take care of your children when you’re at treatment. All of those add up. And so, again, perhaps talking to the social worker at your cancer center or talking to the financial counselor, there are often local programs that can help ease some of those burdens. 

Tips for Managing Lung Cancer Anxiety and Worry

Tips for Managing Lung Cancer Anxiety and Worry from Patient Empowerment Network on Vimeo.

Lung cancer expert Dr. Jyoti Patel shares support resources to help ease anxiety and explains how multidisciplinary care teams, including palliative care, can support patients and family members.

Jyoti Patel, MD, is Medical Director of Thoracic Oncology and Assistant Director for Clinical Research at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. She is also Associate Vice-Chair for Clinical Research and a Professor in the Division of Hematology and Oncology at Northwestern University Feinberg School of Medicine. Dr. Patel is a leader in thoracic oncology, focusing her efforts on the development and evaluation of novel molecular markers and therapeutics in patients battling non-small cell lung cancer. Learn more about Dr. Patel.

See More from Thrive Lung Cancer

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Advice for Managing Lung Cancer Symptoms and Treatment Side Effects

Why Lung Cancer Patient Advocacy Is Essential

Collaborating on Lung Cancer Treatment Decisions With Your Team


Transcript:

Katherine:

Managing the worry associated with a diagnosis or concerns about progression can lead to anxiety and fear in some patients. So, why is it important for patients to share how they’re feeling with their healthcare team? And who all is in the healthcare team who would be able to help a patient?  

Dr. Patel:

So, the anxiety of cancer therapies, of CT scans, of tumor assessments, can be overpowering. And then the longer-term anxieties. Who’s going to care for me, who’s going to care for my family, am I doing the things that are important to me, are ones that weigh heavily on all of us.  

So, certainly, again, carrying these anxieties over a long time have adverse impacts. So, people who are more anxious may not sleep as well. They may lose weight. They may not be as robust. And so, all of those things weigh into our ability to give more treatment. So, we want people to be psychologically well. We have, generally now in our healthcare teams, a number of people who are there to help.  

And so, we have nurse navigators. Most cancer centers have a number of psychologists and psychiatrists that work with our teams. But more than that, even things like nutritionists and social workers make a significant impact. And then I’m surely lucky to work with a world-class palliative care team.  

So, these are doctors that really focus on symptoms of cancer, the toxicities of treatment. And we work together to ensure the best outcome for our patients.  

Advice for Managing Lung Cancer Symptoms and Treatment Side Effects

Advice for Managing Lung Cancer Symptoms and Treatment Side Effects from Patient Empowerment Network on Vimeo.

Lung cancer expert Dr. Jyoti Patel explains common symptoms and treatment side effects, and discusses how treatment approaches may vary depending on treatment goals for each patient.

Jyoti Patel, MD, is Medical Director of Thoracic Oncology and Assistant Director for Clinical Research at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. She is also Associate Vice-Chair for Clinical Research and a Professor in the Division of Hematology and Oncology at Northwestern University Feinberg School of Medicine. Dr. Patel is a leader in thoracic oncology, focusing her efforts on the development and evaluation of novel molecular markers and therapeutics in patients battling non-small cell lung cancer. Learn more about Dr. Patel.

See More from Thrive Lung Cancer

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Tips for Managing Lung Cancer Anxiety and Worry

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Collaborating on Lung Cancer Treatment Decisions With Your Team


Transcript:

Katherine:

Symptoms and side effects can sometimes be a burden to patients undergoing treatment. What are the most common issues that patients face? 

Dr. Patel:

So, common symptoms from treatment can include fatigue, lack of appetite, disinterest in the things that made you really excited before. Infrequently now we have severe nausea, because we have such good antinausea medications.  

Sometimes we’ll have problems with blood counts or risks of infection. All of these vary by the treatment that’s rendered. And so, often it may be that you’re on a targeted therapy.  

Some targeted therapies, for example, can cause swelling in your legs. Immunotherapies are generally well-tolerated but can cause significant side effects in a small minority of people that could include inflammation in the gut, for example.  

So, everything is sort of tailored, I would say. Most frequently, I hear about the fatigue, and then the ongoing stressors of living with cancer. So, the financial toxicity certainly. These drugs are expensive. But not only that, often people have changed the way they work. Their family members have changed how they work to support their loved one. So, bringing people to appointments.  

There’s a lot on someone’s plate. And that can contribute to fatigue and even some anxiety.  

Katherine:

Yeah. What strategies are in place to manage symptoms and side effects? 

Dr. Patel:

So, having a patient who’s knowledgeable about potential side effects and a good advocate for themselves is probably the best way to manage therapy. So, ongoing dialogue with your clinical team, with your nurse, with your physician, are absolutely important. But most of us work with teams of healthcare workers. And so, when I think about our clinic, we have financial counselors, we have social workers, we have dieticians and nutritionists, we work with physical therapists. And importantly, we work with a palliative care team that helps us, again, manage some of the toxicities of therapy.  

We think that they provide a longitudinal assessment of patients and remember what’s most important to a patient over time. Whereas often in the moment there’s this, we want to make the tumor shrink. We think about what we can do immediately. It’s often really helpful to have another team that can provide support over the patient’s journey to help us, again, prioritize what they wanted to do the most.  

Katherine:

Mm-hmm. Dr. Patel, why do you think it’s necessary for patients to tell their doctor about any issues they may be having? Even the little ones.  

Dr. Patel:

I think most of us want to be good patients. And so, we minimize things because we think that, okay, we’re using precious time to talk about things that may seem minor. But, again, all of these add up.  

Even minor symptoms, particularly in the era of immunotherapy, can turn out to be big problems. So, as I say now to my patients particularly on immunotherapy, if something seems a little bit off and you can’t put your finger on it, I just need to know so I can at least do the appropriate workup to make sure that we’re not missing anything. Because symptoms of underlying problems can be very misleading.  

Moreover, I think the cumulative burden of cancer. So, again, we talked a little bit about the financial toxicity, the emotional cost, the time involved in treatment, all of that adds up. And you never want to get it to a breaking point. We want to manage it early on, so we can, again, make decisions together and keep wellness and the quality of survival at the forefront.  

Personalized Medicine | Making Lung Cancer Treatment Decisions

Personalized Medicine | Making Lung Cancer Treatment Decisions from Patient Empowerment Network on Vimeo.

Lung cancer expert Dr. Jyoti Patel explains how biomarker testing is used to guide treatment decisions and personalize care plans for patients.

Jyoti Patel, MD, is Medical Director of Thoracic Oncology and Assistant Director for Clinical Research at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. She is also Associate Vice-Chair for Clinical Research and a Professor in the Division of Hematology and Oncology at Northwestern University Feinberg School of Medicine. Dr. Patel is a leader in thoracic oncology, focusing her efforts on the development and evaluation of novel molecular markers and therapeutics in patients battling non-small cell lung cancer. Learn more about Dr. Patel.

See More from Thrive Lung Cancer

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Expert Perspective | The Value of Empowering Patients


Transcript:

Katherine:

Since no two people with lung cancer are the same, how do you decide which treatment is best for each patient? 

Dr. Patel:

So, the process of evaluating a patient can actually take a little bit of time. So, we first meet a patient, and they may have suspicious findings. We want to understand the full stage of their cancer. And so, in 2022, that’s doing an MRI of the brain, a CT of the chest and abdomen, and often times a pet scan to look for any evidence of distant disease.  

So, once we have radiographic modeling of where we think the tumor is, sometimes we need to do a repeat biopsy to confirm whether or not lymph nodes are involved or the cancer has spread. After we do the biopsy and say that it’s non-small cell lung cancer or small cell lung cancer, we make decisions about looking for genetic markers.  

And so, we’ll often take the tumor tissue and stain for things like PD-L1, which is a marker of response to immunotherapies.  

Very importantly, with all these new targeted therapies, we want to understand the genetic makeup of cancer. So, we want to look for things like EGFR mutations or ALK translocations which are more effectively treated with targeted therapies than chemotherapy or immunotherapy.  

So, those are the tumor characteristics. But, again, I’ve said before, a tumor exists in a person.  

And so, you need to understand what’s important to the person, what do they prioritize, what’s their health like, what, again, are the preferences, are there other comorbidities that could perhaps make some treatments more difficult? Many people, for example, have autoimmune disease. And so, that can be something that’s relatively minor, like some psoriasis that is well-controlled versus perhaps lupus which can cause organ failure.  

Often with psoriasis there are ways that we can give immunotherapy safely. Sometimes other autoimmune diseases would put patients at very high risk with immunotherapies. And so, again, understanding the overall health, understanding other competing causes of toxicity, are absolutely important as you make decisions together.  

Katherine:

Yeah. It seems like we’re getting closer to personalized medicine. For you, how would you define that term? 

Dr. Patel:

Personalized medicine comes in two forms. So, one is the biologics of the tumor itself. So, what do I understand about the genetic markers, the likelihood of response to the available therapies. The other piece, again, is personalizing it to the person that has the cancer.  

And so, again, what are the preferences? What are the risks they’re willing to take? What are their goals? What are the preferences? 

Emerging Therapies | Hope for the Future of Lung Cancer Care

Emerging Therapies | Hope for the Future of Lung Cancer Care from Patient Empowerment Network on Vimeo.

Lung cancer expert Dr. Jyoti Patel provides updates about emerging research and shares her impressions about the future of lung cancer care.

Jyoti Patel, MD, is Medical Director of Thoracic Oncology and Assistant Director for Clinical Research at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. She is also Associate Vice-Chair for Clinical Research and a Professor in the Division of Hematology and Oncology at Northwestern University Feinberg School of Medicine. Dr. Patel is a leader in thoracic oncology, focusing her efforts on the development and evaluation of novel molecular markers and therapeutics in patients battling non-small cell lung cancer. Learn more about Dr. Patel.

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Transcript:

Katherine:

I’d like to talk about emerging treatments. Are there any therapies in development that patients should know about that you’re excited about? 

Dr. Patel:

There are a number of things that are happening right now in the landscape that is really, again, giving us great optimism about how to move forward. So, areas of active research really concentrate on identification of new targets so that we have identified oncogenes that we’re trying to treat effectively. So, those are things like EGFR Exon 20 mutations or HER2 mutations, as well as some of these new fusions.  

Another area of rapidly growing research is that most patients who have targeted therapies will eventually develop resistance. And so, understanding how to mitigate resistance or how to overcome resistance is important. And we often talk about the different drugs in development as first-, second-, and third-generation drugs in the EGFR space, which accounts for about 15 percent of lung cancers in the United States. We’re looking at fourth-generation tyrosine kinase inhibitors. They’re certainly very exciting.  

The other piece, I think, of research that is moving and that we are looking forward to understanding why some patients have really robust responses to immunotherapies and others don’t. Or how people become immune to the effects of immunotherapy. And so, understanding the tumor microenvironment, seeing if there are other proteins that we can co-stimulate to cause these robust and durable responses to immunotherapy is an area that we’re working on.  

Katherine:

Before we close, I’d like to ask, are you hopeful about the potential for people with lung cancer to thrive? 

Dr. Patel:

Absolutely. The future is bright after years of working and really developing this great foundational science.  

We are seeing the transformation of cancer care in a way that is faster than I could’ve ever imagined at the beginning of my career. We’re bringing scientific insights to the bedside. And bringing it to the bedside is impacting how patients live with their cancer and thrive with their cancer. They’re living longer and with fewer toxicities and side effects than I ever imagined.  

I’m optimistic about the promise of early detection through blood tests one day, through screening with CT scans to find early-staged disease in which the cancer is the most curable. And then for patients with more extensive disease, to really understand how we can sequence therapies or deescalate therapies when patients have minimal burden of disease, again, to decrease the toxicities 

Tips for Managing Your Oral Lung Cancer Treatment

Tips for Managing Your Oral Lung Cancer Treatment from Patient Empowerment Network on Vimeo.

What happens if you miss a dose of your oral therapy? Lung cancer expert Dr. Jyoti Patel shares advice for managing oral lung cancer treatment for optimal patient care.

Jyoti Patel, MD, is Medical Director of Thoracic Oncology and Assistant Director for Clinical Research at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. She is also Associate Vice-Chair for Clinical Research and a Professor in the Division of Hematology and Oncology at Northwestern University Feinberg School of Medicine. Dr. Patel is a leader in thoracic oncology, focusing her efforts on the development and evaluation of novel molecular markers and therapeutics in patients battling non-small cell lung cancer. Learn more about Dr. Patel.

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Transcript:

Katherine:

Are some of the targeted therapies taken orally? And if so, are patients in charge of administering them, their own therapies?  

Dr. Patel:

Many of the targeted therapies that are most effective are taken orally. And so, patients take them at home. Often, they’ll have once-daily dosing or twice-daily dosing. The number of pills often depends on the formulation of the drug. So, patients are responsible, I guess, for taking them. That comes with a lot. So, we need to think about, how do we help with adherence? How do we manage toxicity? How are the drugs affected by whether you eat or take the drug on an empty stomach? There are a lot of nuances there.  

Generally, we like to give a lot of information to our patients. So, often, patients will meet with a pharmacist when they’re first prescribed the medication. They’ll meet with our nurses to go over how to take those and how to manage any side effects if they have them or what to do if there are any adverse reactions.  

Katherine:

Mm-hmm. Well, what would happen if a patient forgets to take one of their medications? Does that impact its effectiveness? And then should they get in touch with their healthcare team to let them know? 

Dr. Patel:

So, generally, we like patients to take the medication almost at the same time every day. We sort of think about half-life. So, we want to make sure that that serum level stays appropriate. If someone misses a dose – which happens – and, again the best-case scenario is that people are on these pills for years, right? For several years. So, of course, you’re going to miss a dose.  If that happens, we generally tell people never to double up.  

To let your team know. Often you can just skip that dose and take it in the evening or the next day.  

How Is Lung Cancer Treated?

How Is Lung Cancer Treated? from Patient Empowerment Network on Vimeo.

Lung cancer expert Dr. Jyoti Patel provides an overview of lung cancer treatment approaches, including radiation therapies, targeted therapies, immunotherapy, chemotherapy, and surgery.

Jyoti Patel, MD, is Medical Director of Thoracic Oncology and Assistant Director for Clinical Research at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. She is also Associate Vice-Chair for Clinical Research and a Professor in the Division of Hematology and Oncology at Northwestern University Feinberg School of Medicine. Dr. Patel is a leader in thoracic oncology, focusing her efforts on the development and evaluation of novel molecular markers and therapeutics in patients battling non-small cell lung cancer. Learn more about Dr. Patel.

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Understanding Lung Cancer Treatment Goals

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Transcript:

Katherine:

I’d like to walk through the types of treatments that are used today to treat lung cancer. Let’s start with surgery.  

Dr. Patel:

We think about local therapies as things like surgery. So, surgery has evolved, again, significantly.  

Now with videoscopic approaches and robotic approaches we’re able to remove a tumor either with a larger incision – more traditional incision – or some of the smaller incisions. And the goal of doing the surgery is often to want to diagnosis the cancer. So, to do a biopsy. But when it’s used in terms of cancer treatment, the goal of surgery is to get a complete resection.  

So, we only do surgery if we can remove a tumor and mass with clear margins and not compromise other vital functions. Sometimes we’ll, again, do a more palliative surgery if we need to, if there’s a problem that’s causing significant symptoms. But in that case, the surgery is generally not improving the survival of the patient. It’s trying to palliate symptoms.  

Katherine:

Mm-hmm. What about other types of therapy? 

Dr. Patel:

Other localized therapies predominately include radiation therapy. And, again, radiation has significantly changed over the past years. We’ve been able to incorporate new technologies, truly target tumors, and to minimize toxicity, with two kinds of radiation. Photon therapy, which is more traditional therapy, and proton therapy, which we see administered in a very small subset of patients.  

Primarily, photon therapy, we treat tumors, sometimes over many weeks, to decrease toxicity versus sometimes we give one or two doses of radiation in a high-dose fashion that’s very targeted.  So, often for the chest in stage III cancer, for example, a patient may end up getting six weeks of radiation Monday to Friday with chemotherapy.  

And that, again, is curative intent. It’s to ablate the cancer and to provide the best local treatment. 

Often, we’ll do something called stereotactic radiation therapy. And that is if there is a discreet mass, often that could be if the cancer is metastasized to the brain, we can give very targeted radiation there, again, to ablate the tumor.  

In patients who may not be candidates for surgery because lung surgery is a big deal, right? Removing part of your lung can lead to morbidity in someone with other medical issues. Sometimes we can use pinpoint radiation in the lung and see really good outcomes for patients with good disease control.  

Katherine:

You’re also using chemotherapy still, I would imagine? 

Dr. Patel:

The other part of treatment for lung cancer are systemic therapies. And there a number of systemic therapies. So, I sort of break it down into three major parts. One is chemotherapy. Chemotherapy remains a backbone of treatment for lung cancer.  

It’s a lot more tolerable and much more personalized than ever before. Often chemotherapy can be given to patients without significant toxicities. Not everyone loses their hair. Not everyone has neuropathy. Often, I have patients who are working and taking care of their families on chemotherapy. So, it is a good and very reasonable option. But two things that we’re really most excited about – and I think have changed the field most dramatically – are targeted therapies and immunotherapies.  

Katherine:

Mm-hmm.  

Dr. Patel:

These targeted therapies are rationally designed molecules or antibodies that block proteins that may be overexpressed in lung cancer.  

So, some of them are the byproducts of mutated genes that are upregulated and causing a cancer to grow. Others may just be that we’re seeing a high level of protein expression on the cancer cell. But these targeted therapies preferentially bind to their targets that are present on cancer cells and not so much normal cells. Because of this, often there is less toxicity to normal cells. But because we can find specific targets – and the best targets are ones that are only expressed on cancer cells.  

But because we can find a direct target, sometimes we’re able to design drugs that may have significant efficacy. So, 80 percent or 90 percent of people who have a particular target and are able to get a targeted therapy may have a response to treatment. Targeted therapy can be great for some patients. And patients may be on oral medications, sometimes for years, to control their cancer.  

The other real game-changer in the past decade for lung cancer has been the integration of immunotherapy. Approved immunotherapies currently are primarily antibodies that we give to patients. And these antibodies block proteins that are expressed by cancer cells which downregulate the immune system. By shutting down these proteins, your own immune system is able to kind of re-see the cancer cell and kill it.  

And so, now we know in patients with more advanced disease that immunotherapy or immunotherapy with chemotherapy leads to better outcomes than we’ve ever seen. We also use immunotherapy for patients with stage III lung cancer after chemotherapy and radiation. And this improves their survival significantly.  

And most recently, we’ve now integrated immunotherapy after surgery for patients with early-staged disease to decrease their chance of relapse from cancer.   

Katherine:

So, are there options for relapsed patients? 

Dr. Patel:

So, absolutely. Most of our therapies in the metastatic setting work for some time. And then cancer is a difficult adversary. It figures out how to overcome whatever strategy we’re using and becomes resistant. When that happens, often we need to change course. We need to try a new therapy. We have a number of therapies that we’re looking at in the first- and second-line settings. And we’re trying to understand best therapies for subsequent lines of treatment.  

Generally, I say treatment is appropriate if you’re feeling pretty well, right? If you’re able to tolerate treatment, then the likelihood that you would be able to benefit from therapy is significant. How that changes over time weighs heavily on our decision. So, if someone’s having more fatigue or more symptoms from their cancer, it may be that even a little bit of toxicity proves too much.  

Whereas if someone is feeling still really good, we may be willing to say, okay, I’m going to take a little bit more of a risk for the benefit of improved cancer control.  

Understanding Lung Cancer Treatment Goals

Understanding Lung Cancer Treatment Goals from Patient Empowerment Network on Vimeo.

Lung cancer expert Dr. Jyoti Patel explains small cell lung cancer versus non-small cell lung cancer (NSCLC) and how treatment goals may vary by disease stage and patient factors. 

Jyoti Patel, MD, is Medical Director of Thoracic Oncology and Assistant Director for Clinical Research at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. She is also Associate Vice-Chair for Clinical Research and a Professor in the Division of Hematology and Oncology at Northwestern University Feinberg School of Medicine. Dr. Patel is a leader in thoracic oncology, focusing her efforts on the development and evaluation of novel molecular markers and therapeutics in patients battling non-small cell lung cancer. Learn more about Dr. Patel here: Dr. Patel.

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Transcript:

Katherine:

Before we get into treatment though, I’d like you to walk us through the types of lung cancer if you would.  

Dr. Patel:

Sure. So, over 200,000 Americans will be diagnosed with lung cancer this year. And we break lung cancer down into two major diagnoses. So, the more common one is non-small cell lung cancer. The less common one, which accounts for 13 percent of diagnoses, is small cell lung cancer. Those are descriptive terms but don’t really go beyond that. It’s, essentially, what do the cells look like under the microscope? We know that these two behave very differently. Small cell lung cancer tends to be a cancer which can move a little bit more quickly. It tends to be more aggressive. 

We have certain treatment regimens that are appropriate. Non-small cell lung cancer is one which we further subdivide into adenocarcinoma, squamous cell cancer, or large neuroendocrine cancer. And we treat those a little bit more similarly with different local therapies and different systemic agents.  

Katherine:

Okay. How would you define treatment goals for people with lung cancer? 

Dr. Patel:

So, we hope that the number of patients that we find with earlier stage disease increases as we now at least have evidence to do screening for people who are at high risk. So, for patients with early-stage disease, which we really define as stage I and stage II – so, cancer that’s limited to the lobe of a lung – our best treatment options are surgery and sometimes radiation in appropriate patients. And for those patients, we think that treatment is discreet and curative.  

For the third of patients who present with stage III disease or locally-advanced disease – and here we’ve seen significant advancements with the integration of immunotherapies, improvements in surgery, and radiation. Their treatment course tends to be a bit longer but, again, our intent is curative. So, the cancer has discreet therapy, we complete it, and then patients are in survivorship mode, in which we’re following them periodically.  

Unfortunately, still, a large number of patients present with more advanced disease. Stage IV disease or metastatic disease. Those are all sort of interchangeable. And treatment for those patients is about controlling the cancer. Often, you’ll hear the word “palliative.” So, the goal of treatment is to control the cancer, to decrease the burden of cancer, and to help patients live longer. Certainly, again, with our advancements of immunotherapies and targeted therapies, patients are living longer than ever before.  

And in some patients, it really becomes a chronic disease in which checkups can be periodically done or patients can be monitored off of treatment for long periods.  

Katherine:

Mm-hmm. Do treatment goals vary by lung cancer type?   

Dr. Patel:

So, the goal of cancer treatment is always to make patients live longer and to make sure that that quality of that survival is the best it can be. So, that’s always our overlying goal. For patients with early disease or early stage – stage I to III non-small cell lung cancer – is something we call limited stage. Small cell lung cancer, the intent is, again, curative. For patients with more advanced disease, we tend to think about the cancer as something that we control, that we see a good response to hopefully, and watch patients over time.  

There are a subset of patients with more advanced disease that have really significantly better outcomes. We call these sort of patients “super survivors.” And we hope to make that number greater as we incorporate new science into their treatment paradigms. 

Katherine:

What is the role of patients in making treatment decisions? 

Dr. Patel:

I think all treatment decisions are patient-focused.  

So, again, understanding someone’s goals of treatment are important. But understanding the context in which the cancer is happening. So, the cancer is part of a patient that has a really full life. Family. Work. Other medical comorbidities. Things that they prioritize. And so, having open discussion about the likelihood of achieving curative therapy or what the risks and benefit ratios are in palliative therapy are absolutely essential to having transparent and honest communication with patients. But it is also optimistic and compassionate.  

Why Should DLBCL Patients Engage in Their Care?

Why Should DLBCL Patients Engage in Their Care? from Patient Empowerment Network on Vimeo.

DLBCL expert Dr. Jane Winter explains the benefits of being an engaged and empowered patient and shares key questions for patients to ask their doctors.

Dr. Jane Winter is a hematologist and medical oncologist at Robert H. Lurie Comprehensive Cancer Center at Northwestern University. More information on Dr. Winter here.

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Transcript:

Laura Beth:

Dr. Winter, why do you think it’s important for patients to be empowered in their DLBCL care?  

Dr. Winter:

You know, a patient who is, I like the word “engaged” as well as “empowered.” I think it’s important for patients to be empowered or engaged because medicine is very complicated and very fragmented these days.  

Now, it’s so difficult to be a patient and to be sick and not be able to really take control. So, patients need to be empowered and they need partners, advocates. It’s a very sad comment on our healthcare system, but to be sure that things don’t slip through the cracks, we, the providers, the hematologist, our job is tough, but we need a patient to partner with us.  

So, for example, if you’re a patient with diffuse large B-cell lymphoma as your diagnosis, make sure to ask, “Was there a result for the FISH?” You need to make sure that doesn’t slip through the cracks. Or, if you are going for a second opinion or going to another medical center, make sure you have your records. I really wish that every patient who had a scan of one kind or another as they walked out the door got a copy of that scan, a disc. Now, that would make life so much simpler. But, make sure that you keep your own records. It’s hard and hopefully, every sick individual has a family member or a friend, someone who’s going to help them with this because this is very tough.  

But, ask questions. “Are there clinical trials I might be eligible for? Are there alternatives to the therapy you’re recommending?” These are all important questions to ask. Don’t be afraid to say, “With this treatment, what is the likelihood that my disease is going to come under control and be cured?” I think you need to know that. And, “Is there a difference between this treatment and that treatment?” Do we know? Oftentimes, we don’t have the answer for the newer treatments, but we’re hopeful.  

I just want to underscore the existence of a growing number of clinical trials that patients need to consider and think about. It’s hard at the time of the new diagnosis to be struck with not only the emotional impact of a new diagnosis and so on and not feel well and so on, but just ask the question. “Are there clinical trials I might consider?” So, that’s important, and also have optimism because the vast majority of patients, we do amazing, amazing things, and that’s why it’s so much fun to be a hematologist right now is that we have so many new and exciting treatments. And what’s more exciting than to make someone healthy again?  

So, these are exciting times. 

Treating Relapsed/Refractory DLBCL

Treating Relapsed/Refractory DLBCL from Patient Empowerment Network on Vimeo.

What are the options for DLBCL patients who relapse? Dr. Jane Winter shares treatment options for relapsed/refractory DLBCL and what is available for patients who have coexisting conditions or health concerns.

Dr. Jane Winter is a hematologist and medical oncologist at Robert H. Lurie Comprehensive Cancer Center at Northwestern University. More information on Dr. Winter here.

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Transcript:

Laura Beth:

Dr. Winter, if a DLBCL patient doesn’t respond to treatment or relapses, what happens next? Are there additional treatment options available?  

Dr. Winter:

Absolutely, but we have some very new treatments and some new data that’s just been within the last year. So, I had mentioned earlier with regard to follicular lymphoma this CAR T-cell therapy. So, CAR T-cell therapy is now approved for certain patients who relapse. So historically, in the past, patients who were young enough and robust, healthy enough to consider what we call an autologous stem cell transplant, so, high doses of chemotherapy with stem cell rescue was the standard of care for many years. But many patients would not be eligible for that kind of therapy, first, because they were too old or they had too many medical problems, what we call comorbidities.  

But also, because in order to have a good outcome with this kind of treatment, we need to first get the disease into remission, and that can prove challenging. So, for many years, though, what we call autologous stem cell transplant was the standard of care. But a disease that is most common in people in their mid-60s and above, this was not an option for many patients, but also, many patients just never became eligible because their disease was too difficult to control. And so, in recent times, over the past six years or more, a new therapy called CAR T-cell therapy has emerged.  

This harnesses the patient’s own T cells. The T cells are collected from the blood stream, and then they are genetically engineered so that they target the marker on the lymphoma cells. It takes about three weeks or so to go through the process of altering these cells and creating these CARs, and then re-infusing them back into the patient now targeting the patient’s lymphoma. And, this is a therapy that’s incredibly promising.  

It was approved a while ago for patients in the third line, meaning if your disease came back after your first treatment, let’s say, R-CHOP, and then you receive second line treatment, but that treatment didn’t really work, you were a candidate for CAR T-cell therapy. And about 35 to 40 percent of patients would do very well with that therapy. It’s not a hundred percent, but still, it was a very good option for individuals. Now, we have clinical trials comparing patients who relapse. So, at the time the first relapse, if that relapse occurs within a year or the patient progresses while on initial treatment, CAR T-cell therapy has been shown to be better than the old standard of care, which was the second line of treatment in the stem cell transplant.  

So, we now have this very promising new strategy for patients as well as for a subset of patients who are not eligible to go on to conventional autologous stem cell transplant because they’re too old or they’ve got a heart disease or some other comorbidity that makes them not a candidate for a standard stem cell transplant. So, this is very exciting and is approved for patients with relapsed disease, or refractory disease, or disease that progresses during initial treatment, or recurs within a year as well as this group of patients who are either too old or too sick to have an autologous stem cell transplant.  

But, there are many new iterations, new variations on this theme that are under investigation right now. So, there are lots of clinical trials to consider for a patient with relapsed disease or refractory disease because we have new versions of CAR T-cell therapy that are under investigation as well as a whole list of new agents, targeted agents and what we call bite antibodies and so on.  

So, things are very promising and there’s a tremendous amount of research going on right now, much of it translating into improved responses and survival for patients with diffuse large B-cell lymphoma. 

Understanding High-Risk DLBCL

Understanding High-Risk DLBCL from Patient Empowerment Network on Vimeo.

What is high-risk diffuse large B-cell lymphoma (DLBCL) exactly? Dr. Jane Winter explains progression of the disease, DLBCL subgroups, and treatment approaches that may bring high-risk DLBCL under control.

Dr. Jane Winter is a hematologist and medical oncologist at Robert H. Lurie Comprehensive Cancer Center at Northwestern University. More information on Dr. Winter here.

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Transcript:

Laura Beth:

Dr. Winter, what is high-risk DLBCL?   

Dr. Winter:

There are certain aggressive lymphomas that are more high-grade. And in recent years, we’ve identified a subset that has genetic changes in certain genes that lead to a very aggressive type of lymphoma that grows rapidly and is more difficult to cure with standard therapy. And what’s most important about identifying that subset is that it requires that at least most of our evidence is that the standard strategy that I just spoke about briefly in terms of what we use for transformed follicular lymphoma, the standard therapy we use for diffuse large B-cell lymphoma called R-CHOP where the “R” is standing for rituximab. 

Again, that antibody that targets a particular marker on the lymphoma cells, CD20 immunotherapy plus chemotherapy, CHOP chemotherapy which has been around for probably 50 years, this very standard backbone of treatment for diffuse large B-cell lymphoma is not sufficient. We don’t have head-to-head randomized phase three trials showing definitely that the more aggressive strategy is so much better, but most of the evidence is that standard R-CHOP just doesn’t do as well in curing these highly aggressive, and what we call high grade or double hit lymphomas.  

These are lymphomas that have these genetic changes, rearrangements in particular genes MYC and BCL2, and I like to think of it as MYC takes the brakes off of growth. So, it’s sort of the rapidly growing disease, and the BCL2 prevents the cells from dying. So, between that, you have a rapidly growing lymphoma that doesn’t stop. And so, that’s a special subgroup of diffuse large B-cell lymphoma. There are some other subcategories.  

Primary mediastinal, which tends to be a type of aggressive lymphoma that presents generally as a big mediastinal mass in the middle of the chest, usually younger patients, more often women than men, but still many, many men as well. So, high-risk generally for me means that it has a double hit. There’s MYC, M-Y-C, and BCL2 genetic changes. There are some other types, but that’s basically what I think of in terms of high-risk. When we think of garden-variety diffuse large B-cell lymphomas, there are some ways of categorizing patients into four different subcategories in terms of “risk.”   

The first of these was what we call the international prognostic index that was developed in the 70s based on patients who were enrolled on clinical trials. In those days, the diagnoses were probably not exactly what they are today in terms of how we categorize patients, but that is a set of clinical features that there’s a little app online and you can calculate whether a patient is high-risk, intermediate, low, low-intermediate risk. In this system remains fairly helpful, predictive. But, we have refined it significantly in modern times. 

And I have to say, not to toot my own horn, but one of my fellows, Dr. Zhao and I, a number of years ago using a database from the National Comprehensive Cancer Network, and patients who all treated with modern therapy and were diagnosed with modern techniques, we used that data to develop a new, improved international prognostic index. And this helps us better discriminate the four different categories, and it places greater weight on patient age, which is an important predictor, as well as the particular blood test result, the LDH, which is an enzyme that’s helpful in aggressive lymphomas and diffuse large B-cell lymphoma.  

And, this particular, what we call the NCCN-IPI, you can just put your age and LDH level and so on into this app and you just find it online, NCCN–IPI, and it will put patients into four different subgroups. And this predict outcomes and survival over a five-year period for these patients. It’s not hard and fast, like anything else, within every category. So, if you look at every patient in the low-risk group by the NCCN–IPI, there still are a few patients who will fail therapy, but the majority of patients will do very well.  

And, if you happen to be someone who is 80 years old with a high LDH and you fall into the high-risk patient group, the outcomes are not going to be as good, but that doesn’t mean every patient in that category fails treatment. So, there’s still gonna be some good outcomes. So, it’s helpful. These are guides, and they do help to identify patients who are, what we call, high-risk or high intermediate risk. So, this is another way of looking at predicting outcome apart from looking at whether a patient is what we call a “double hit” lymphoma. So, the double hit, I just want to make one point is that when a pathologist makes a diagnosis of diffuse large B-cell lymphoma, it is absolutely critical that that biopsy, the pathology be sent for a procedure called FISH.  

That stands for fluorescent in situ hybridization, and it’s a technique the pathologist can use, or special labs will use, to pull out, to identify those patients who have this very high-risk subset of lymphoma called the double hit with both a MYC and a BCL2 rearrangement. Whether a MYC and a BCL6 rearrangement falls into this same risk group, we’re deemphasizing that and really, it’s the double MYC and BLC2 group that’s the highest risk.  

How Is Relapsed or Transformed Follicular Lymphoma Treated?

How Is Relapsed or Transformed Follicular Lymphoma Treated? from Patient Empowerment Network on Vimeo.

Follicular lymphoma (FL) expert Dr. Jane Winter explains relapsed or transformed follicular lymphoma and outlines treatment approaches for these FL types.

Dr. Jane Winter is a hematologist and medical oncologist at Robert H. Lurie Comprehensive Cancer Center at Northwestern University. More information on Dr. Winter here.

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Transcript:

Laura Beth:

Dr. Winter, what happens if a patient’s follicular lymphoma relapses? What is the approach to treatment? 

Dr. Winter:

And so, generally, it’s probably one in five patients whose disease sort of comes back and becomes somewhat problematic requiring repeated therapies where many, many patients have a very kind of indolent course that may require treatment intermittently, but tends to be very amenable to treatment. And then the other point to be made about follicular lymphoma is indeed that a fraction of patients every year will go on to what we call transform. That means their disease acquires and changes biologically or at least a clone of their disease changes and becomes a much more aggressive process similar to a newly diagnosed diffuse large B-cell lymphoma, an aggressive lymphoma.  

And these transformations then require treatment as if they were an aggressive lymphoma. And they also, despite being somewhat frightening because of the sense of changing from a low-grade to a more aggressive process, in very many cases, these are well treated with standard, especially in patients who haven’t had prior therapy for follicular lymphoma, which is rituximab (Rituxan), these patients are well treated with our standard treatment for aggressive lymphoma Rituxan CHOP chemotherapy, and do very well. So, even though that sounds like a frightening occurrence, for the vast majority, it’s very treatable. 

And patients go into remission and stay in remission for the most part, so it’s not as frightening as it might sound. And how many patients and when do they transform? There’s lots of confusing data. Basically, there’s some data that suggests that the majority of patients transform early in the first five years, whereas other data suggests that it’s sort of every year, patients are at risk so that the longer you have follicular lymphoma, perhaps, the greater the risk overall of this kind of change in the biology. But, as I said, for a good significant number of patients, this is relatively easily treated with standard chemotherapy.   

Just another point in terms of potentially curative therapies these days, we’re afraid to use that term in follicular lymphoma because it does have this tendency to sort of keep coming back over time. So, whether any treatment is truly curative remains to be seen. Perhaps a very, very small fraction of patients might be eligible, young patients, for an allogeneic stem cell transplant from someone else. But, this is not commonly pursued these days, as well as a new therapy called CAR T-cell therapy, which is a form of immunotherapy and may indeed be curative.  

But at this point, it’s really too early to make a claim of cure with that strategy. But, a very exciting new immunotherapy as well as some other new immunotherapy is something called “bite cells,” which harness our own immune system, much like the CAR-T cells do. So, lots of new things. So, these are exciting times for us as treating physicians and hematologists, but they are exciting times for patients because we have so much to offer.  

An Expert’s Perspective on Emerging Follicular Lymphoma Research

An Expert’s Perspective on Emerging Follicular Lymphoma Research from Patient Empowerment Network on Vimeo.

What’s the latest on emerging follicular lymphoma research? Dr. Jane Winter shares how follicular lymphoma treatment has advanced and provides an overview of treatment options.

Dr. Jane Winter is a hematologist and medical oncologist at Robert H. Lurie Comprehensive Cancer Center at Northwestern University. More information on Dr. Winter here.

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Transcript:

Laura Beth:

Dr. Winter, is there emerging follicular lymphoma research that you are excited about?   

Dr. Winter:

So, first of all, I think it’s very important to underscore the fact that for a newly diagnosed patient with follicular lymphoma today, survival is measured in decades with an “S,” so, 10, 20-plus years. And that’s based on data that’s already becoming outdated such that it’s the likelihood with some of the newer treatment options is there’s never been a more exciting time, I often say, to be a hematologist because of all the exciting new tools we have to our trade.  

So, lots of new treatments. But, even with the old treatments, and I mean rituximab-based treatments, the outcome is excellent. We have new treatments. We have all kinds of new treatments these days for follicular lymphoma such that it’s a veritable buffet of treatment options to choose from. Nonetheless, often times the first treatment is just either a monoclonal antibody, meaning rituximab, an anti-CD20, which is a protein or marker on the surface of the lymphoma cell. This is immunotherapy, been around now for 30 years and approved for 22 years for the treatment of follicular lymphoma as well as other B-cell lymphomas.  

Other therapies that are typically used frontline include rituximab plus chemotherapy, most commonly a drug called bendamustine, which wasn’t always available, was something that was being developed in East Germany that came to the attention of the Europeans and North Americans only after German unification. And, this has become, along with Rituxan, one of the most commonly used first-line treatments for follicular lymphoma. Other options include a combination of Rituxan and an oral medication called lenalidomide (Revlimid), and this is given three weeks in a row out of every four weeks with Rituxan. Again, this anti-CD20 immunotherapy or antibody. 

And, it’s a very effective but requires some monitoring of blood counts and so on, so it is perhaps not as commonly used as Rituxan and bendamustine as a first-line therapy. But, there are so many additional new options that are either approved or coming along for all of our B-cell lymphomas, and they include many new what we call “targeted agents” as well as immunotherapy including a very new therapy called CAR T-cell therapy. But, one thing I just wanted to say, in addition to the very long anticipated survival of newly diagnosed patients today, it’s really only a small fraction of patients who get into trouble with follicular lymphoma, at least in the short term.  

When Is It Time to Treat Follicular Lymphoma?

When Is It Time to Treat Follicular Lymphoma? from Patient Empowerment Network on Vimeo.

What symptoms might follicular lymphoma patients experience as a trigger for treatment? Dr. Jane Winter shares insight about common symptoms that indicate treatment should begin for optimal patient care.

Dr. Jane Winter is a hematologist and medical oncologist at Robert H. Lurie Comprehensive Cancer Center at Northwestern University. More information on Dr. Winter here.

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Transcript:

Laura Beth:

Dr. Winter, what are signs that it is time to treat a patient’s follicular lymphoma? 

Dr. Winter:

Symptoms are the trigger, most often. 

Sometimes, the trigger for treatment is a big enough mass that it’s pushing on something important, for example, the ureter, which is the tube from the kidney to the bladder. And if we have a large mass that either wraps around that ureter or just pushes on it sufficiently to block drainage, it’ll result in a decline in kidney function. So, a rising creatinine may be the signal that things are progressing and it’s time for treatment. Sometimes, the follicular lymphoma involving the lining around the lung can lead to what we call a pleural effusion, fluid in that space. It’s a potential space between the lung and the chest wall.  

So, an accumulation of fluid there restricts the ability to take a deep breath, and that may be an indication for treatment, or just the overall total mass of disease is becoming such that it results in fatigue and is beginning to impair the quality of life and what we call performance status. So, those are triggers for treatment. Decline in blood counts is another. So, follicular lymphoma very commonly involves the bone marrow, and as it progresses and replaces the normal blood cells, it will result in a decline in the red cell count, the hemoglobin that carries oxygen. So, it results in tiredness or shortness of breath, or a low white count such that the numbers of infection fighting cells is compromised.  

Or also at the same time, often the platelet count. And platelets are those little flecks in the blood smear that help to clot blood and prevent bleeding. And so, as they decline, we sometimes see little red spots called petechiae on the lower extremities. But, that’s a pretty uncommon sign in follicular lymphoma. Most often, it would be just a mild anemia that flags progression and bone marrow involvement. So, all of those. So, multi-disease, disease that causes symptoms, disease that causes fluid accumulation around the lung or obstruction of some important organ. 

These are all the signs that it’s time to think about treatment. 

How Is Follicular Lymphoma Diagnosed and How Does It Progress?

How Is Follicular Lymphoma Diagnosed and How Does It Progress? from Patient Empowerment Network on Vimeo.

Follicular lymphoma expert Dr. Jane Winter explains common symptoms, tests involved in diagnosis, and how the disease may progress over time.

Dr. Jane Winter is a hematologist and medical oncologist at Robert H. Lurie Comprehensive Cancer Center at Northwestern University. More information on Dr. Winter here.

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Transcript:

Laura Beth:

Dr. Winter, how is follicular lymphoma typically diagnosed? 

Dr. Winter:

So, most often, it’s because of a new lump or bump that a patient notes, perhaps a lump in the neck, but also increasingly these days, many individuals wind up getting CT scans. Belly pain for which they go to the emergency room or something to evaluate another diagnosis, maybe some blood in the urine related to a totally different issue. But CT scans often reveal, enlarged lymph nodes or lymph nodes that are borderline and of concern. 

And this will lead to investigation, ultimately, a biopsy, and a diagnosis of follicular lymphoma.  

Laura Beth:

How does follicular lymphoma typically progress?  

Dr. Winter:

So, to start with, most commonly, patients have low burden disease these days, but some adverse diagnosis will have very extensive disease, a big mass in the abdomen, disease in the chest, so, highly variable. For patients who begin with low burden disease, small lymph nodes that are not bothersome, we generally observe these patients. 

And over time, these lymph nodes may begin to grow, and sometimes slowly, sometimes more rapidly to the point where they cause symptoms or are of concern because they’re cosmetically unattractive. There are occasional times where it’s a lump in the neck that just results in too many inquiries from others. So, that’s when we start thinking about maybe it’s time to start some treatment. So, progression, enlargement, sometimes it’ll be the beginning of symptoms. So, most patients with follicular lymphoma, at least in North America, don’t generally have symptoms at presentation, but B symptoms.  

So, fevers, drenching night sweats, and by that, I mean sweats at night that lead to changing your T-shirt, changing the sheets or the nightgown, not the typical middle-aged woman with a hot flash. But, by drenching night sweats, we mean drenching. Unintentional weight loss. So, these are some of the symptoms that one can see, we call them B symptoms, we can see in patients with follicular lymphoma and other lymphomas as well that may signal progression.