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Thriving With Lung Cancer: What You Should Know About Care and Treatment

Thriving With Lung Cancer: What You Should Know About Care and Treatment from Patient Empowerment Network on Vimeo.

What does it mean to thrive with lung cancer? Dr. Jyoti Patel discusses care and treatment goals, reviews current and emerging treatment options, and shares advice for living well and thriving with lung cancer.

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:

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today’s webinar focuses on how patients can aim to live well and thrive with lung cancer. We’re going to discuss treatment goals and the importance of patients playing an active role in their care. Before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you. Let’s meet our guest today. Joining me is Dr. Jyoti Patel. Dr. Patel, welcome. Would you please introduce yourself? 

Dr. Patel:

Hi. Thanks so much. My name is Jyoti Patel. I’m a professor in medicine at the Northwestern University Lurie Cancer Center and I’m the medical director of thoracic oncology and the vice chair of clinical research for the Department of Medicine.   

Katherine:

Well, thank you so much for taking the time out of your busy schedule to be with us today. Since this webinar is part of PEN’s Thrive series, I’d like to ask you from your clinical experience and perspective, what do you think it means to thrive with lung cancer? 

Dr. Patel:

I think our definition of that has evolved considerably over the past two decades. The advancements in the lab and in clinical trials have translated to vastly different outcomes from our patients than I ever imagined two decades ago. So, certainly we see a large number of lung cancer survivors, people who have had early disease that has been eradicated and they are living after their lung cancer diagnosis with sequela treatment. And we see an even larger number of patients who are in active treatment, those with more advanced disease.  

When we can minimize the toxicities of active treatment and really focus on quality of life, survival outcomes, then I think we’re really talking about thriving with lung cancer.  

Katherine:

Mm-hmm. Well, thank you for your insights. Of course, an appropriate treatment course is part of thriving. 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.  

Katherine:

You mentioned some treatment approaches a few moments ago, but 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:

Mm-hmm. That’s excellent. 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.  

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:

Mm-hmm. 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 two 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? 

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.  

Katherine:

Mm-hmm. You mentioned that sometimes treatment doesn’t work for an individual patient. 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.  

Katherine:

Mm-hmm. You talked about this a few moments ago, but I would like to talk about self-advocacy. 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.  

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. 

Katherine:

Thank you for that advice, Dr. Patel. 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.  

Katherine:

Mm-hmm. Dr. Patel, thank you, again, for being able to join us today. It’s been a pleasure.   

Dr. Patel:

Thank you so much for this invitation. I really enjoyed speaking with you.  

Katherine:

And thank you to all of our partners. To learn more about lung cancer and to access tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks for being with us.  

Thriving With Lung Cancer: What You Should Know About Care and Treatment Resource Guide

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Expert Advice for Setting Lung Cancer Treatment Goals

Expert Advice for Setting Lung Cancer Treatment Goals from Patient Empowerment Network on Vimeo.

Dr. Tejas Patil, a lung cancer specialist from the University of Colorado Cancer Center, shares advice on how lung cancer patients can work with their healthcare teams to set treatment goals.

Dr. Tejas Patil is an academic thoracic oncologist at the University of Colorado Cancer Center focused on targeted therapies and novel biomarkers in lung cancer. Learn more about Dr. Patil, here.

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Transcript:

Katherine:

When someone is considering therapy for non-small cell lung cancer, what advice do you have for setting treatment goals with their team? 

Dr. Patil:

So, non-small cell lung cancer has seen some remarkable progress in the last 20 years, but it’s still a very serious disease. One of the main expectations I set with patients is that I will guide them through this journey, but that there’s going to be a lot of changes in their day-to-day. When we look at someone who’s receiving targeted therapy, in general I upfront tell patients that the model that I’m trying to emulate with targeted therapies is very similar to HIV. I remind patients that in 2022, we still cannot cure HIV, but we can give a very effective antiviral therapies that put their viral count to zero.  

And patients with HIV now can live really full rich lives. And that’s the model that we’re trying to replicate with targeted therapies. With immunotherapies, I set patients the expectation that immunotherapy has been a major advance in the management of lung cancer. And many patients are living very full lives as a result of using immune therapies. But it’s not for everyone, and I do enforce and or rather emphasize is a better word, the concept of taking things day-by-day. I think it’s really helpful when patients have a diagnosis like this to not spiral out of control and think about all possible future outcomes, but to really work with the data that we have at the moment.  

Questions to Ask Before Participating in a Lung Cancer Clinical Trial

Questions to Ask Before Participating in a Lung Cancer Clinical Trial from Patient Empowerment Network on Vimeo.

When considering clinical trial participation, what questions should patients ask their healthcare team? Dr. Tejas Patil, a lung cancer specialist at the University of Colorado Cancer Center, shares advice on what patients need to know when considering joining a clinical trial.

Dr. Tejas Patil is an academic thoracic oncologist at the University of Colorado Cancer Center focused on targeted therapies and novel biomarkers in lung cancer. Learn more about Dr. Patil, here.

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Transcript:

Katherine:

When considering clinical trial participation, what questions should patients be asking their healthcare team? 

Dr. Patil:

So, couple of questions that I think are really important for patients to ask their healthcare team is what is the current standard of care? So, if you’re enrolling in a clinical trial, you want to know that you’re receiving some kind of drug.  

And its expected effectiveness should be compared to what is considered the current standard of care for whatever line of therapy that is. The other practical questions that patients should be asking is what is the schedule of therapy? So, how frequently am I supposed to come in? Am I supposed to get a biopsy?  

Am I supposed to get blood draws? Most clinical trials will come with a schedule or a calendar for patients, and it’s helpful for them to look that over and see what’s being asked of them. And then the last thing is what are the known side effects? Now I always tell patients with a clinical trial, we don’t always know the side effects as part of the reason we’re doing the clinical trial.  

But if there’s some experience or if the doctors enrolled other similar patients in this trial asking what are the foreseeable side effects is actually really important. 

When to Consider a Clinical Trial for Lung Cancer Treatment

When to Consider a Clinical Trial for Lung Cancer Treatment from Patient Empowerment Network on Vimeo.

When it comes to non-small cell lung cancer treatment options, where do clinical trials fit in? Dr. Tejas Patil of the University of Colorado Cancer Center explains how he discusses clinical trial participation with patients.

Dr. Tejas Patil is an academic thoracic oncologist at the University of Colorado Cancer Center focused on targeted therapies and novel biomarkers in lung cancer. Learn more about Dr. Patil, here.

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Transcript:

Katherine:

When it comes to non-small cell lung cancer treatment options, where do clinical trials fit in? 

Dr. Patil:

So, clinical trials are very important to advancing our knowledge and advancing our ability to care for patients in the best way possible. What I frequently get asked from patients is am I going to be a guinea pig for a clinical trial? And I think it’s really important to emphasize that clinical trials are comparing the best-known standard of care to something new.  

So, in effect you would never be a guinea pig. You would really just be receiving what is the best-known standard of care. And that would be compared to some novel approach to treating cancer. In general, I’m very encouraging of patients to enroll in clinical trials.  

I discuss the pros and cons of this because there are logistical concerns to keep in mind when patients are thinking about enrolling in clinical trials. If a patient enjoys traveling, and enjoys wanting to spend time with their family, that has to be balanced against the regimented schedule that some clinical trials may have.  

If they live in a rural part of the state and they have to travel three to four hours weekly, that’s a decision that has to be had and be made. But in general, if a patient is eligible and willing, I’m strongly encouraging that patients enroll in clinical trials to help further the knowledge of the field. 

Katherine:

Yeah. Are there clinical trial options available for patients who have already been treated with another therapy? 

Dr. Patil:

Yes. So, the clinical trials come in variety of forms and patients are eligible at various stages.  

So, there are some clinical trials that require patients to be newly diagnosed. And so, the trial would be the “first therapy” that they receive. But many trials actually I would say the majority of clinical trials in lung cancer are looking at patients who’ve progressed on the first line of treatment and are now facing the possibility of receiving second line treatments or further. So, that’s a common place for patients to enroll in clinical trials. 

How Does Biomarker Testing Impact Non-Small Cell Lung Cancer Care?

How Does Biomarker Testing Impact Non-Small Cell Lung Cancer Care? from Patient Empowerment Network on Vimeo.

Biomarker testing identifies certain genes, proteins, or other molecules present in a biologic sample. Dr. Tejas Patil, of University of Colorado Cancer Center, discusses how results from these tests can be used to determine a treatment approach for non-small cell lung cancer (NSCLC).

Dr. Tejas Patil is an academic thoracic oncologist at the University of Colorado Cancer Center focused on targeted therapies and novel biomarkers in lung cancer. Learn more about Dr. Patil, here.

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Transcript:

Katherine:

Biomarker testing is important prior to choosing therapy for non-small cell lung cancer. What is this test and how long does it take to get results? 

Dr. Patil:

That is a great question. So, a biomarker is a biological molecule found in blood or other body fluids or tissues that is a sign of a normal or an abnormal process.  

Or let me reframe that as it represents having some kind of medical condition or disease. Now, it’s a very broad definition. Basically, a biomarker can be used to see how well the body responds to a treatment for a disease or a condition. And when we look at it from a genetic perspective, sometimes the term that you’ll see is a molecular marker or a signature molecule.  

So, these are terms that are sort of interchangeable with biomarkers. But the role of a biomarker is to help ascertain how well the body responds to a certain medical intervention, broadly speaking. 

Katherine:

Okay. What question should a patient ask their doctor about test results? 

Dr. Patil:

So that’s a very complicated question, and I will do my best to answer it succinctly. So, my personal view is that for any test to be meaningful, it should impact medical decision-making in some very concrete way.  

Specifically, with biomarkers, the result should either be prognostic or predictive and I’ll define what those terms are. So, a predictive biomarker is one that helps determine if a certain therapy will be effective. So, I’m going to use lung cancer as an example. In EGFR mutation in non-small cell lung cancer allows a doctor to prescribe an EGFR targeted therapy called osimertinib (Tagrisso). Therefore, in this example, the EGFR mutation is predictive.  

It opens the door for this targeted option that would otherwise not have been available if the patient did not have this EGFR mutation. A prognostic marker is a little different. This is the type of marker that helps categorize risk. So, in the same example I used earlier, that patient may have an EGFR mutation.  

They can also have a different mutation called TP53. Now this TP53 mutation doesn’t influence therapy. It’s not targetable, but it does influence risk.  

And so, there’s been a lot of emerging data to show that patients with TP53 mutations have worse outcomes on targeted therapies than patients without TP53. And in that case, that mutation is what we call a prognostic biomarker. 

Why Lung Cancer Patient Advocacy Is Essential

Why Lung Cancer Patient Advocacy Is Essential from Patient Empowerment Network on Vimeo.

Dr. Estelamari Rodriguez, a lung cancer specialist, discusses the importance of patient advocacy in lung cancer care. Dr. Rodriguez shares how self-advocacy can impact cancer care and how being vocal as a patient advocate can help others in the lung cancer community.

Dr. Estelamari Rodriguez is Associate Director of Community Outreach – Thoracic Oncology at the Sylvester Comprehensive Cancer Center, University of Miami Health System. Learn more about Dr. Rodriguez, here.

See More from Thrive Lung Cancer

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Expert Advice for Recently Diagnosed Lung Cancer Patients

Why Non-Small Cell Lung Cancer Patients Should Speak Up About Symptoms and Side Effects

What Is the Difference Between Small Cell and Non-Small Cell Lung Cancer?


Transcript:

Katherine Banwell:

Why is it so important for patients to share their symptoms and side effects that they’re having with their healthcare team? 

Dr. Estelamari Rodriguez:

So, there are two types of advocacy. There’s the advocacy that you do at your personal level, so if the patient is not telling us that they’re having side effects, weeks can go by and these things don’t get addressed. So, you have to be your own advocate, your family can be a great advocate. It doesn’t matter who you are, if we don’t know your side effects, and you’re not communicating that, we’re not able to impact, and intervene early. But there’s a bigger message of advocacy that is extremely important, specifically in lung cancer for decades. 

I mean, I think for a long time we didn’t have a lot of lung cancer advocates because people were not surviving lung cancer. And now, that we have people live years with lung cancer, metastatic cancer, and really are coming off treatment, now we have patients that can be the guiding light. 

They can tell other patients about how they did, their side effects, can tell their story about how targeted treatment impacted their prognosis. So, advocacy is critical, we don’t have a lot of advocacy in lung cancer. We need advocates in every community, rural communities, urban communities, African Americans, Hispanics, Native Americans. In every community there is someone who’s impacted by lung cancer.   

I think that you get something out of it, you feel like you’re helping other people, you’re definitely making people aware. And hopefully, if a legislator hears your story, because last night I was at an advocacy summit, and we had a legislator, and we were asking what really moves legislators to invest in research. And he’s like, “It’s not letter, it’s not emails, it’s these personal stories from patients, and patient advocates.” And we don’t have those stories unless people come out and say and tell them. But they really make people invest, and they really prioritize the importance of research. And that would help you also because if there’s more research, then your next treatment will be funded faster. 

Expert Advice for Recently Diagnosed Lung Cancer Patients

Expert Advice for Recently Diagnosed Lung Cancer Patients from Patient Empowerment Network on Vimeo.

A lung cancer diagnosis can be overwhelming. Lung cancer specialist Dr. Estelamari Rodriguez shares key advice for recently diagnosed patients, including tips related to essential testing and preparing for appointments.

Dr. Estelamari Rodriguez is Associate Director of Community Outreach – Thoracic Oncology at the Sylvester Comprehensive Cancer Center, University of Miami Health System. Learn more about Dr. Rodriguez, here.

See More from Thrive Lung Cancer

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Why Lung Cancer Patient Advocacy Is Essential

Why Non-Small Cell Lung Cancer Patients Should Speak Up About Symptoms and Side Effects

Fact or Fiction? Busting Myths About Non-Small Cell Lung Cancer


Transcript:

Katherine Banwell:

What key advice do you have for recently diagnosed lung cancer patients? 

Dr. Estelamari Rodriguez:

I think that a couple of things. When it’s a diagnosis of lung cancer, it’s very overwhelming, and fortunately now there’s a lot of resources online, but at the beginning there’s a lot of information that you don’t know. So, sometimes if you go online all you do is get scared. I think that you need to answer some very specific questions from your doctor. What is your stage? And then, after your stage, my next question is; what is a molecular driver of my tumor, the sequencing of my tumor?  

In the past, we thought all the lung cancers were the same, but now we know they’re many, many different types of lung cancer. And they’re the EGFR-driven cancers, the ALK, the ROS, they’re all different, they all have different treatment options. And when you go and look online, there’s organized advocacy groups around each of these mutations, and then you can get better information, and valuable kind of insight from the information that is out there. So, I think the first thing is to before you go in the internet, talk to your doctor about your stage and require, not ask lightly.  

Require that your genetic mutation, your sequencing is done at the time of diagnosis of advanced lung cancer. Because that would really determine your treatment.  

So, I think that is very important for patients that get diagnosed. And then also, understand that there are a lot of resources out there, so that you need to ask for questions, bring someone with you. During COVID a lot of the clinics were closed, but we were able to have family members join virtually the visits, and now patients can come in with their family members. 

I find that having someone else in the room who wrote answers and wrote notes, will really help you kind of get the most out of your consultation. And also ask questions for the next time you come, or we have a portal where patients ask questions online. So, the first visit where you get the most questions answered, and sometimes it’s part B and part C. So, you have to keep until you feel satisfied that you understand the plan. We also tell patients that doctors don’t know everything, sometimes the doctor that you have is not the one that you feel you have a connection with. So, know that you have rights, and there are other doctors out there, and you can get second opinions. 

So, you are the best advocate, it’s your life, and you can rely on your doctor, and their physician extenders, physician assistants, nurses, to get as much as you can from that. But also, look outside of your institution, maybe there’s a better option for you. 

How Does Immunotherapy Treat Lung Cancer?

How Does Immunotherapy Treat Lung Cancer? from Patient Empowerment Network on Vimeo.

How does immunotherapy work? Dr. Estelamari Rodriguez, a lung cancer specialist, explains how immunotherapy harnesses the immune system to kill cancer cells and how this treatment approach is transforming lung cancer care.

Dr. Estelamari Rodriguez is Associate Director of Community Outreach – Thoracic Oncology at the Sylvester Comprehensive Cancer Center, University of Miami Health System. Learn more about Dr. Rodriguez, here.

See More From INSIST! Lung Cancer

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What Treatments Are Available for Non-Small Cell Lung Cancer?

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Understanding Biomarker Testing for Non-Small Cell Lung Cancer Treatment


Transcript:

Katherine Banwell:

What is immunotherapy, and how does it work to treat lung cancer?  

Dr. Estelamari Rodriguez:

So, immunotherapy technically can be used to treat almost every cancer. So, it’s this concept that over time the cancer cells learn to bypass the immune surveillance, which is the way that your body identifies cells that are abnormal and gets rid of them.  

Your immune system can do that. And over time cancer grows and grows faster because your immune cells don’t even recognize that the cancer cells are there. So, immune therapy, specifically the checkpoint inhibitors, they target a receptor that is overexpressed in cancer cells, that make cancer cells invisible to the immune system. So, when you use, for example, some of these antibodies that bind the PD-L1, the programmed death ligand-1 receptor, that in itself gets rid of that veil that is covering the tumor cells. And now, your immune system can recognize the cancer. 

And that is one way of activating the immune system against the cancer, checkpoint inhibitors. There are newer drugs that are coming in the market, newer kind of engineered immune cells that will, in the future, be able to be developed for that specific cell. And in a way, immune therapy is more natural because you’re not getting a chemotherapy is that causes nausea or hair loss.  

You’re getting your immune system kind of ramped up, activated, against your cancer cells. It can have side effects of when you activate all these immune cells, you can cause inflammation in the body that has to be monitored, and some patients can be serious. And also, people have developed autoimmune kind of antibody reactions. So, there is a lot of monitoring that needs to be done. It’s given intravenously. We have doses now that last up to six weeks in some of the major immunotherapies that we use, like pembrolizumab, so you don’t have to come all the time. 

And I think the one thing that I’ve seen that is very promising about immunotherapy is that if you activate your immune system, almost like when you were young you got a vaccine, and you don’t have to get it every year, you have a memory response against that virus. Immunotherapy can achieve that for about 20 to 30 percent of patients today, where they get this memory against the cancer cells, and they could potentially come off treatment. 

Lung Cancer Targeted Therapy: What Is It and Who Is It Right For?

Lung Cancer Targeted Therapy: What Is It and Who Is It Right For? from Patient Empowerment Network on Vimeo.

How does targeted therapy work? Dr. Estelamari Rodriguez defines targeted therapy and shares how this personalized treatment approach attacks lung cancer cells.

Dr. Estelamari Rodriguez is Associate Director of Community Outreach – Thoracic Oncology at the Sylvester Comprehensive Cancer Center, University of Miami Health System. Learn more about Dr. Rodriguez, here.

See More From INSIST! Lung Cancer

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Understanding Biomarker Testing for Non-Small Cell Lung Cancer Treatment


Transcript:

Katherine Banwell:

What is targeted therapy and who might it be right for? 

Dr. Estelamari Rodriguez:

So, targeted therapy kind of falls under the umbrella of precision medicine, where if you find a genetic driver, a mutation that is making that cancer grow. And out there we have drugs, we already have nine that are targeting specific genetic changes.  

The targeted therapy is really that treatment, either a pill, or an injection that goes after the genetic driver. And that, in a way, I describe to patients like you have a switch that went on and caused the cancer growth, and now with the targeted therapy we can put that switch off. And those treatments are very important because as they have evolved, they have kind of fill the gaps that chemotherapy had for patients. So, the one thing about targeted therapy is that because you’re going after one specific change, many times they’re less toxic. 

So, cytotoxic chemotherapy to kill lung cancer cells has to unfortunately kill a lot of good cancer cells in your body, specifically red cells, white cells, and platelets. So, that your body has to recover from all this normal tissue that dies, the normal cells that get impacted by the cytotoxic chemotherapy. In targeted therapy there is side effects, but a lot of them are decreased compared to chemo. 

And they’re really going after cells that have this mutation. So, preferentially you’re attacking the cancer and not the whole body. So, that’s an extra advantage for patients. And as we have patients live longer on these treatments, toxicity, and cause, all these things are really critical so that we develop better drugs that are even more specific targeting only what needs to be targeted and cause less side effects. 

Why Do Lung Cancer Patients Need Molecular Testing Before Choosing Treatment?

Why Do Lung Cancer Patients Need Molecular Testing Before Choosing Treatment? from Patient Empowerment Network on Vimeo.

How do a patient’s genetic mutations impact lung cancer treatment? Lung cancer specialist Dr. Estelamari Rodriguez emphasizes the importance of undergoing biomarker testing, also referred to as molecular testing, to identify genetic mutations, which may lead to a more personalized lung cancer therapy.

Dr. Estelamari Rodriguez is Associate Director of Community Outreach – Thoracic Oncology at the Sylvester Comprehensive Cancer Center, University of Miami Health System. Learn more about Dr. Rodriguez, here.

See More From INSIST! Lung Cancer

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Transcript:

Katherine Banwell:

What is molecular testing? 

Dr. Estelamari Rodriguez:

So, that is very critical for lung cancer patients today. So, molecular testing is when we get tumor cells, and we analyze the genetic changes that lead to that tumor growth. And that can be done today in different ways. The usual goal standard have been to do a biopsy of the tumor, and then do next generation sequencing when we analyze many, many genes that can impact cancer growth, and then we get a signature what drives that cancer. And in doing that, we discovered that some patients, for example, regardless of who they are, women or men, smokes or non-smokers, they may have a genetic driver that we have a treatment for, that does better than chemotherapy. 

So, that is important that you identify that as early as possible.  

Katherine Banwell:

Why is it necessary for patients to undergo molecular testing prior to a lung cancer treatment plan? 

Dr. Estelamari Rodriguez:

So, it is extremely critical because we have data today that several of these targeted treatments, the improvement of survival is not in the span of months, it’s in the span of years. 

People will do years better if they started with the treatment for their specific cancer driver mutation than if they received chemotherapy.  

We also saw that when immunotherapy came in the market a lot of patients, rightly so, doctors thought, “This is the best new thing, let’s put this patient on immunotherapy” and they were not testing patients for mutations before they started. And we found out two things, one is that there is toxicity if you give immunotherapy followed by some of the targeted therapies, specifically one called osimertinib (Tagrisso), so that you could cause harm.  

And then, number two, that immunotherapy doesn’t work in every case. A lot of patients with targeted driver mutations, they do better with a targeted treatment than they will do with chemotherapy and immunotherapy. So, I think it is important to define that early. We also now have approval for at least one targeted therapy after surgery. 

So, even patients that are early stage, which is not the majority of patients, but those patients also will get an improvement if they have an EGFR mutation specifically if they receive that targeted pill treatment after surgery. So, understanding the tumor is important so you can select the right treatment for the patient.  

Now, this is a dynamic thing, so tumors can evolve over time. So, there are many times that patients come to us for second opinions, and we actually recommend a repeat biopsy to understand the new genetic signature of that tumor because we may find a new option that was not there at the beginning. 

Where Do Clinical Trials Fit Into a Lung Cancer Treatment Plan?

Where Do Clinical Trials Fit Into a Lung Cancer Treatment Plan? from Patient Empowerment Network on Vimeo.

Clinical trial participation is essential to advancing cancer care options. Dr. Estelamari Rodriguez shares how clinical trials are providing lung cancer patients with more treatment approaches and discusses the safety protocols in place to protect patients.

Dr. Estelamari Rodriguez is Associate Director of Community Outreach – Thoracic Oncology at the Sylvester Comprehensive Cancer Center, University of Miami Health System. Learn more about Dr. Rodriguez, here.

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Transcript:

Katherine Banwell:

Dr. Rodriguez, research advances aren’t possible without patients participating in clinical trials. 

So, where do clinical trials actually fit into a lung cancer treatment plan? 

Dr. Estelamari Rodriguez:

So, clinical trials are really what move the science of all these developments that we saw at the oncology conference, the ASCO conference.  

So, it’s not until patients join trials that we can approve drugs. So, I think clinical trials are very important, so we move the science. But then, for specific patients in lung cancer, now that we’re moving all of our best therapies upfront, we run out of options faster than we did for some patients. So, it is important that A) that we have access to clinical trials, which if we look across the country many of our cancer patients don’t have either Phase I programs near them, they’re very difficult to get to, or very expensive to get to. 

So, we have to do a lot in terms of increasing access to clinical trials. 

But I think your specific question has to do where it comes in. I think if you have advanced lung cancer, where most patients today will not have a cure, clinical trials is at the center of things that should be considered from the get-go. Sometimes some of the drugs are what is called Phase I, that these are new drugs that we’re trying to find a dose, we don’t really understand the efficacy of the drugs. So, those trials are reserved for patients that have failed standard treatment. 

But then we have patients with very difficult situations that are progressing really fast that should join clinical trials. And I think that as we do more biomarker testing, we are learning a lot about the individual patient tumor.  

So, the promise of precision medicine is that you can actually find drugs for specific patients, and that’s what clinical trials that are called basket trials, where if you have a mutation regardless of your tissue of origin. So, for example, we have two large basket trials that we are enrolling patients, one called the TAPUR trial and the other one called MATCH.  

And MATCH is organized by the NCI and TAPUR by ASCO, and these trials if you find you have a biomarker analysis of next generation sequence, you find a specific mutation, you can actually see there’s a trial for this specific patient. So, the trials come in, I think they’re very critical to move the science, they’re very important for individual patients with rare mutations, but I think it’s upon us to make sure that these trials are available.   

Katherine Banwell:

What advice do you have for patients who may be hesitant to participate in a clinical trial? 

Dr. Estelamari Rodriguez:

So, I think you have to ask questions, I think that there’s a lot of misconceptions in different communities. So, we take care of a lot of Hispanic patients, and we have kind of really have to do a lot of education about what patients and patients family’s think about. Because sometimes I feel I have to convince the family members before I can get to really talk to the patient about the trials. 

But I think in the past, trials have been considered only experimental, and patients are used for science but not really getting a benefit. So, I think that’s the first misconception. When we open a trial at our cancer center, and I’m part of the experimental therapeutics’ unit, we are opening trials that we believe that that science will move and offer something in addition. So, I think, that is not because we want to do an experiment, it’s because we really want to offer this patient the latest, or something new, that could potentially offer them a better response than what we are achieving with our standard treatments. 

So, I think that’s the first misconception, that these are experiments on patients and patients don’t benefit. The whole point of the trial is to find better drugs and benefit.  

So, it’s been shown in multiple parts of the country and big cancer centers that patients that join clinical trials do better at the stage of their disease. And part of the reason that they do better is that instead of having one doctor that is making decisions, and they’re running out of options, and kind of coming up with ideas out of nowhere, when you join a Phase I clinical trial or an organized trial, you have at least 10 to 20 doctors that are looking at your case or reviewing your images. There’s a lot of check to make sure that you’re not getting unwanted toxicity and that the trial is stopped if you’re not getting a benefit. 

And this is important so that we don’t expose more patients to toxicity, but that’s another misconception that it’s not safe. And we’ll do our best to make sure that it’s safe. 

Lung Cancer Research Highlights From ASCO 2022

Lung Cancer Research Highlights From ASCO 2022 from Patient Empowerment Network on Vimeo.

Lung cancer specialist Dr. Estelamari Rodriguez shares research updates from the 2022 American Society of Clinical Oncology (ASCO) annual meeting, including the latest advances in immunotherapy and inhibitor therapy.

Dr. Estelamari Rodriguez is Associate Director of Community Outreach – Thoracic Oncology at the Sylvester Comprehensive Cancer Center, University of Miami Health System. Learn more about Dr. Rodriguez, here.

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Transcript:

Katherine Banwell:

Cancer researchers recently came together at the annual ASCO meeting. Were there any highlights at the meeting that you think lung cancer patients should know about? 

Dr. Estelamari Rodriguez:

So, sometimes we look at the conference, and we look at the plenary sessions. And if we don’t see a lung cancer abstract centered at the big plenary session, we feel that nothing happened, but a lot happened. We are learning that all the advances in terms of immunotherapy and targeted therapies can be used earlier and earlier for patients. So, we had data on the NADIM trial, which is a trial out of Spain where they use neoadjuvant, chemo immunotherapy. 

We already have that approved in the United States with nivolumab (Opdivo), and they use also nivolumab with a different combination chemotherapy. What was really amazing is that you can replicate this data that is used in immunotherapy before surgery, patients can have very dramatic pathologic complete responses. Which means that at the time of surgery, we don’t find cancer, and that portends a better prognosis. And obviously, we’re trying to do our best for patients. So, that was really, I think, confirms the data that we have seen that immunotherapy can be used earlier.  

We also saw updates of trials that had been ongoing looking at the use of immunotherapy in difficult settings. So, there was a trial also out of Spain called the ATEZO-BRAIN trial where they look at the use of immunotherapy Atezolizumab for patients that have brain disease and diagnosis of metastatic disease.  

And for a long time, we thought that immunotherapy responses really wouldn’t work in the brain, and we saw that in this trial they were able to control disease in the brain, delay the use of radiation for these patients, and improve their quality of life. So, I think that was, again, a strong message that immunotherapy is here to stay, we can use it in your patients. Then, the third section of trials that were very telling were updates of new drugs for targeted therapy. So, we know today that we have about nine actionable mutations in lung cancer.  

So, that is very important that we understand that when a patient gets diagnosed, do they have an actionable mutation, a genetic change that we can target? And that is really the promise of precision medicine, so they present the data for a new drug for KRAS G12C mutation, positive patients call it aggressive. And we already have a drug that was approved about a year ago called sotorasib. 

And these drugs are used on patients that previously we knew will do very poorly with chemotherapy and immunotherapy because this KRAS G12C mutation is actually a very common mutation in lung cancer, more common than the other mutations that we have approved targeted therapies in the past, and it’s been difficult to treat.  

So now, we have another drug that shows a very good response rate after patients have failed chemo and immunotherapy. It’s still not as a dramatic response as we have seen on the third generation EGFR, ALK and ROS inhibitors, but still a really good promise for patients that didn’t have an option. 

So, that was good, they also updated more data on some of the third-generation drugs for ALK. So, we have seen in a prior conference called ACR the drug lorlatinib (Lorbrena), which a third-generation ALK inhibitor, has showed already improvements for patients that have failed prior therapies.  

But now they’re showing that for patients in the frontline setting when they first diagnose, receiving a third generation ALK inhibitor can improve brain responses. So, they saw a very dramatic has a ratio of .8, so basically over 80 percent of the brain disease was controlled, and in some complete responses were seen. 

And then, patients had a median survival that was over the three-year mark, which had been seen with the prior ALK inhibitors. So, I think it just goes to show that the progress in targeted therapies for lung cancers is exponential, that once we understand the genetic pathways, and we can develop better drugs. 

For example, this lorlatinib drug was actually developed in a way that it will stay in the brain longer, because we know that that’s an area where patients have failed. So, really understanding where the prior drugs have failed, where this resistance has been happened, allows us to develop better drugs for patients. So, I think it’s definitely very hopeful conference. I think the best part of the conference was people coming together, because I think that’s when investigators have the opportunity to collaborate and think of new ideas. 

So, I think that we don’t take it for granted that we were able to have an in-person conference, which hadn’t happened in two years. We had patient advocates that joined as well, so that’s also very important that the patient advocates are part of the research program, and ideas, and presentations. 

The Role of a Myeloma Specialist on Your Care Team

The Role of a Myeloma Specialist on Your Care Team from Patient Empowerment Network on Vimeo.

Why should you seek a consultation with a myeloma expert? Dr. Krina Patel discusses the important roles a specialist can play in your myeloma care, even from a distance.

Dr. Krina Patel is an Associate Professor in the Department of Lymphoma/Myeloma at The University of Texas MD Anderson Cancer Center in Houston, Texas. Dr. Patel is involved in research and cares for patients with multiple myeloma. Learn more about Dr. Patel, here.

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Transcript:

Katherine:  

You mentioned the healthcare team. Dr. Patel. How does a myeloma specialist fit into that care team?

Dr. Patel:

So, I will say, as a myeloma specialist, I probably have three different ways that I am involved in different patient’s care. So, I have patients who are from Houston, where I’m at, that come to MD Anderson for their treatment. So, I see them on a regular basis if they’re on treatment, or I’m following them to make sure their disease is stable, what’s going on. So, I see them regularly, and I’m their main doctor for their cancer. And then, I have patients who are maybe a little bit farther away, and I see them as part of the team.

So, they have their own oncologist in their community that they’re seeing and they come see me either virtually or in person every few months, or if something’s happening; if their myeloma’s returning or they’re having toxicity, then they reach out to me so I can talk about different ways we can change therapy. And then, the third really is for second opinions where patients don’t necessarily  want to come see me all the time but they might want to be on a clinical trial that we might have at MD Anderson. So, they come just for that trial and then they go back to their doctors again. So, we sort of do whatever works best for the patient.

Waldenström Macroglobulinemia (WM) Treatment: Why Timing Is Essential

Waldenström Macroglobulinemia (WM) Treatment: Why Timing Is Essential from Patient Empowerment Network on Vimeo.

Waldenström macroglobulinemia (WM) is a rare slow-moving disease, so immediate treatment isn’t always necessary. WM expert Dr. Shayna Sarosiek discusses the “watch and wait” period and what criteria may indicate a patient is ready for therapy.

Dr. Shayna Sarosiek is a hematologist and oncologist at the Dana-Farber Cancer Institute where she cares for Waldenström macroglobulinemia (WM) patients at the Bing Center for Waldenstrom’s. Dr. Sarsosiek is also Assistant Professor of Medicine at Harvard Medical School. Learn more about Dr. Sarosiek, here.

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Transcript:

Katherine:

I understand that many people diagnosed with Waldenstrom’s may not be treated right away. Why is that? 

Dr. Sarosiek:

Yeah, so a lot of patients – actually, the majority of patients don’t need treatment right away for Waldenstrom’s. And even some patients, about 20 percent to 30 percent of patients a decade later still don’t need therapy. Because, as I mentioned, it’s really such a slow-moving disease that often patients will have no symptoms or very few symptoms for many years. And if that’s the case, we really don’t like to introduce treatments earlier than we need to.  

One, because you might introduce a therapy that adds toxicity or side effects that are making the patient feel worse than they currently feel. Two, the other reason we don’t want to treat too often if we don’t need to, is because it’s possible the Waldenstrom’s might become resistant to therapies and then when we truly needed something later, the disease might become resistant to things we used earlier.  

The other reason is, we don’t have any data that shows us that treating early improves survival. We know that patients with Waldenstrom’s have an excellent survival. And that’s only when treating when we need to. So, we don’t have any data that tells us we need to treat early. And so, really, the focus of Waldenstrom’s therapies is just to make sure that our patients maintain a good quality of life with their disease under good control. And we can do that in a lot of cases by not offering therapy early and just doing it when we start to see signs that there is something that needs to be addressed.  

Katherine:

Many of us have heard this term “watch and wait.” What does that mean exactly? 

Dr. Sarosiek:

So, watch and wait generally just refers to a plan to continue to monitor the patient. Often every three months or every four months in clinic, where we might just examine the patient to check for lymph nodes or an enlarged spleen. We ask about symptoms that might perk our ears up or make us think about progression of the disease. And we also check bloodwork.  

That can tell us what’s happening with the Waldenstrom’s. So, really, the exam, talking with the patient, getting labs every few months is a good way for us to keep track of what’s happening with the disease. So, we’re watching closely, but we’re waiting and holding off on therapy until it’s needed. 

Katherine:

Yeah. How do you know when it’s time to begin treatment? 

Dr. Sarosiek:

Great question. So, we have criteria that were designed. That physicians internationally follow to tell us when patients need treatment. Of course, those are just guidelines, so it’s often based on the guidelines and also each individual patient. But, for example, one of the main reasons why patients might require therapy is if a patient has anemia.  

So, we measure that with the hemoglobin. If the hemoglobin’s less than 10, and the patient has symptoms of anemia, then in that case we might need to offer therapy. Another common reason for therapy being initiated might be hyperviscosities. So, if the blood is getting thick, as Waldenstrom’s progresses and the IgM level is high, then in that case blood flow can’t happen appropriately. And so, in that case, we might need treatment.

Another side effect that patients with Waldenstrom’s can have is neuropathy. And so, that’s numbness, tingling, burning, loss of sensation. Usually starting in the toes and working its way up the feet and legs. If that’s progressing rapidly, if it’s causing the patient to not be able to do their usual activities, that’s another reason for treatment. So, we have these clear guidelines that tell us the things that we should be watching out for and then, it helps us to know when it’s an appropriate time to start treatment for patients.