Tag Archive for: mutation

What Do You Need to Know About CLL Treatment Side Effects?

What Do You Need to Know About CLL Treatment Side Effects? from Patient Empowerment Network on Vimeo.

CLL Expert Dr. Jean Koff discusses common side effects of CLL treatment and explains how they can be managed.

Dr. Jean Koff is an Assistant Professor in the Department of Hematology and Oncology at Winship Cancer Institute of Emory University. Learn more about Dr. Koff, here.

See More from Thrive CLL

Related Resources:

How Are CLL Symptoms Treated?

CLL Treatment Approaches: What Are the Types?

What is YOUR Role in Choosing a CLL Treatment Approach?

Transcript:

Katherine Banwell:

What are the common side effects of treatments, and how are they managed? 

Dr. Jean Koff:

So, each of the different classes of agents has a different profile of side effects. The BTK inhibitors, the first class that I mentioned with ibrutinib (Imbruvica) and acalabrutinib (Calquence), are usually very well tolerated. The most common side effects that we tend to see are things that the patients can feel or see, but also things that we can see on the labs when we’re monitoring patients. So, sometimes you can see a lower platelet counts or lower blood cell counts with ibrutinib. That’s something that you may not notice, but your doctor’s going to notice on the – the blood counts when you come to the office. Sometimes ibrutinib can cause a rash or GI upset, this is usually easily managed with supportive care from your physician.  

And then some more – some more common effects of the BTK inhibitors include joint pain and headache. And again, many physicians, because we’ve been using BTK inhibitors for a long time, have a good regimen for treating these side effects. More uncommon side effects of BTK inhibitors, particularly ibrutinib that we look out for would be abnormal heart rhythms and some tendency for bleeding. But these are relatively uncommon and with newer BTK inhibitors, we’re seeing lower rates of these side effects.  

Dr. Jean Koff:

So, in terms of venetoclax side effects we have a little bit of a different profile. This agent is much more likely to cause lower cell counts, especially in a white blood cell count known as neutrophil count, and so your doctor will be monitoring you for that. In terms of patient side effects that you can feel, it can cause a rash, it can cause some GI upset. These are usually relatively easily managed but we want you as the patient if you’re on venetoclax to talk to your doctor about these side effects so that they can help you feel better and help you manage those. In terms of the anti-CV20 monoclonal antibodies, which we use a couple in CLL more frequently, they have very similar side effect profiles.  

So, one is rituximab, and one is obinutuzumab. Obinutuzumab is usually used in combination with venetoclax in front-line CLL.  

Like I mentioned before, this is an infusion and most of the side effects that we think about and most commonly see in these anti-CV20s are side effects that patients have during the infusion. And these are referred to as infusion reaction. And these are relatively common, around 30 percent in these anti-CV20 monoclonal antibodies. So, what is an infusion center react – er sorry, what does an infusion reaction look like? This looks sort of like an allergic reaction. 

Katherine Banwell:

Hm. 

Dr. Jean Koff:

So, your nurses in the infusion center are going to be monitoring you very carefully once you start the infusion, and they’re going to start it at a low dose, very slowly. But the side effects they’re monitoring for, they’re looking for changes in your heart rate or blood pressure. You may start to feel hot or cold or sweaty, you may have chills. Sometimes patients can have swelling in their throat or their tongue. And what will happen is because these are fairly common, is we’re still able to give the anti-CV20, but what we do is the nurse will stop the infusion, they may give you some medications that calm down that infusion reaction. So, medications like antihistamines –  

Katherine Banwell:

Mm-hmm.  

Dr. Jean Koff:

Or steroids that help tamp down that immune response, and then they start the anti-CV20 infusion at a lower rate. The vast majority of patients will be able to receive an anti-CV20 antibody even if they have an infusion reaction. They may just need a little bit more of those immune tamping-down medications like antihistamines and steroids. And then the last thing to consider, which I think we’ve mentioned, especially in the venetoclax-containing regimens, is the tumor lysis syndrome. And so, that is a side effect like we mentioned is kind of like the venetoclax working really, really, really well, of the tumor breaking down too quickly.  

And so, patients who have tumor lysis, if they’re at high-risk, hopefully they’re already being monitored very closely with frequent lab draws, and they may receive medications that – that diminish the risk of adverse events happening because your electrolytes are out balance, for instance, your potassium is too high, or your calcium is too low. Because your doctors are monitoring you closely, they can give you medications that can help balance  out those – those electrolytes and help protect the kidneys. The tumor lysis is typically not a risk after the initial doses of venetoclax.  

So, the first couple weeks is when we typically monitor that, and then once the CLL has been broken down, or as I like to say, once it’s been cooled off a little bit, then you no longer have this risk of tumor lysis and it – it doesn’t require further monitoring. 

Katherine Banwell:

That’s great information, thank you.  

What Are the Current CLL Treatment Options?

What Are the Current CLL Treatment Options? from Patient Empowerment Network on Vimeo.

When is it time to treat CLL, and what are the current options? Dr. Jean Koff, from the Winship Cancer Institute of Emory University, reviews available CLL treatment approaches and discusses patient-specific factors that she considers when choosing therapy.

Dr. Jean Koff is an Assistant Professor in the Department of Hematology and Oncology at Winship Cancer Institute of Emory University. Learn more about Dr. Koff, here.

See More from Thrive CLL

Related Resources:

What Do You Need to Know About CLL Treatment Side Effects?

What Do You Need to Know About CLL Treatment Side Effects?

What is YOUR Role in Choosing a CLL Treatment Approach?

CLL Treatment Approaches: What Are the Types?

Transcript:

Katherine Banwell:

Many patients are overwhelmed by the different types and classes of treatment. When is it time to treat CLL, and what are the options? 

Dr. Jean Koff:

So, I boil down the criteria to when you need to treat your CLL to two main categories. One category is that the disease is progressing quickly, and the other category is the disease is causing problems of some kind, or getting ready to cause problems of some kind. Those are some of the broad categories that we think about when it’s time to start treatment for CLL. Now, this – the groups that research CLL have put out various criteria that help guide physicians about when it’s time to start treatment, and some of those more specific criteria include items like symptoms. So, symptoms are a very important part of that decision-making process.   

And the same symptoms that we mentioned, the B symptoms, fevers, chills, night sweats, weight loss that’s unintentional, or lymph nodes that you can feel, those would potentially be reasons that your doctor would want to start you on CLL therapy. But the CLL can cause issues even in a patient who’s not necessarily having symptoms. So, one of the most common ways that CLL can cause issues is the CLL cells can cause your other blood cells, the normal blood cells, to be low in number. There are several ways the CLL cells can do this. One of the most common ways is that the CLL cells, which are often circulating through your bloodstream, can also collect or overrun your bone marrow.  

And if you think about it, the bone marrow is the factory that makes all of your blood cells. So, when there are too many CLL cells in the bone marrow, they can crowd out the normal blood cells, like red blood cells or platelets. So, when red blood cells or platelets get low beneath certain thresholds, that’s a reason to start CLL therapy. 

Katherine Banwell:

Mm-hmm.   

Dr. Jean Koff:

So, there are a couple other criteria that we think about. CLL cells can collect in other areas, including the spleen. So – and if you remember, the spleen is a lymphoid organ that sits on the left side of your body that is right below the stomach. And so, if CLL cells collect in the spleen, they can cause it to be too big, it can press on the stomach, it can make it so you feel full, even if you haven’t eaten a full meal, that’s something we call early satiety. It can be uncomfortable, causing some abdominal pain. And if the spleen gets really, really big, it can cause it to not be able to do its normal job, which is to filter out the normal blood cells like it does every day. And so, that would be a reason to start therapy as well. And then the last – the last category I would think about is in CLL we have lots of – of CLL cells that are circulating in the blood that we can check with a routine blood count. And the absolute number of CLL cells is not as important as how fast that number is growing. So, your physician will track how fast that number of CLL cells is doubling.  

And if you meet criteria for what we call rapid doubling time, which is usually thought of as less than 12 months but certainly less than six months. So, if your count goes from 30,000 to 60,000 in under six months, then it may be time for you to start thinking about therapy. 

Katherine Banwell:

Right. So, Dr. Koff, would you briefly review the treatment classes? 

Dr. Jean Koff:

So, for first-line treatment, we have two main treatment classes that we think about at this time. The first is – is called BTK inhibitors, which is Bruton tyrosine kinase inhibitors. And these are oral medications, so medications that you take by mouth, and the most well-studied of these is called ibrutinib (Imbruvica), we typically prescribe ibrutinib by itself. There are other BTK inhibitors we are also now using in this space, one of them is called acalabrutinib  (Calquence), and that is often given with an IV monoclonal antibody called obinutuzumab (Gazyva).   

The other main class of drugs that we consider for first-line treatment of CLL is the BCL-2 inhibitors. Right now there’s only one BCL-2 inhibitor that’s approved for CLL and front-line and it’s called venetoclax (Venclexta). Usually, this drug is also given in the front-line with an anti-CD20 monoclonal antibody. So, the venetoclax itself is a pill you take. And the monoclonal antibody is an – either an IV or a subcutaneous injection.  

Katherine Banwell:

Where do clinical trials fit into CLL treatment? 

Dr. Jean Koff:

So, clinical trials are part of the reason, a big part of the reason that we’ve been able to make so much progress in how we treat CLL over the past few years. Clinical trials are how we figure out what treatments work for CLL, how patients feel on them, what sort of adverse events or side effects they have on individual treatments, and which treatments do better for keeping CLL symptoms under control, keeping the disease under control, and allowing patients to live longer and have a higher quality of life with their disease.   

Katherine Banwell:

Are there any other options available for CLL patients?  

Dr. Jean Koff:

So, there are other options. A clinical trial, if that is available to you as a patient is nearly always a good thing to consider if you have CLL. Because the vast majority of patients will not be cured by CL – by their treatment for CLL. Meaning that the – even though the treatments we have usually work for a very long time in most patients, ultimately the CLL will at some point, perhaps years down the road, progress and need another therapy. For that reason, we know we can do better. And we are hoping that the next  clinical trial is going to lead to the discovery of a new agent or a new combination – new  combinations of agents that will allow patients to live longer with a better quality of life with CLL.  

Katherine Banwell:

Mm-hmm. 

Dr. Jean Koff:

So, that’s always a good option to consider.  

How Are CLL Symptoms Treated?

How Are CLL Symptoms Treated? from Patient Empowerment Network on Vimeo.

Dr. Jean Koff reviews common CLL symptoms and explains why patients should discuss any issues they experience with their healthcare teams.

Dr. Jean Koff is an Assistant Professor in the Department of Hematology and Oncology at Winship Cancer Institute of Emory University. Learn more about Dr. Koff, here.

See More from Thrive CLL

Related Resources:

What Are the Current CLL Treatment Options?

What Do You Need to Know About CLL Treatment Side Effects?

What Do You Need to Know About CLL Treatment Side Effects?

What is YOUR Role in Choosing a CLL Treatment Approach?

Transcript:

Katherine Banwell:

One part of thriving with CLL is managing the symptoms of the disease. What are the common symptoms of CLL? 

Dr. Jean Koff:

So, one thing that I see with nearly all of my CLL patients, regardless of where they are in the CLL journey, and regardless of whether they need active medications to manage their CLL, is some degree of fatigue. And this can range from just mild fatigue that patients notice that they need a little bit of a breather in the middle of the day, to needing more sleep at night, to not being able to exercise as much as they’re used to. And that is by far one of the most common symptoms we see. Again, whether or not their disease needs medication to manage it.  

The classic symptoms of CLL that often let us know that it’s time to start medical management are not just this fatigue. But the classic symptoms are  B symptoms. And we describe those as fevers, night sweats, and unintentional weight loss. Those are very common. And then some patients with CLL will also have what we call palpable lymphadenopathy, which is our term for lymph nodes that are enlarged that you can feel. And the most common places to feel these on the body are on the neck, under the arms, and in the groin.  

Katherine Banwell:

Okay. How are symptoms treated? 

Dr. Jean Koff:

So, if your symptoms progress to the point that your doctor thinks you need medication – they’re becoming disruptive to your life, or they are getting worse and worse over time, then there are a variety of medications that we can use in CLL. And this is actually a very exciting field. Right now, the state of the field is that most patients who are starting on their first treatment for CLL will use some sort of oral medication, and that may be accompanied by an IV – what we call monoclonal antibody, or it may not. But one thing that has really changed even since I very first started practicing, is that we no longer commonly use what I would call conventional chemotherapy to treat CLL – even though this was the standard of care just a few years ago. 

Katherine Banwell:

Wow. So, a lot has changed. 

Dr. Jean Koff:

Yes, definitely. 

Collaborating on Lung Cancer Treatment Decisions With Your Team

Collaborating on Lung Cancer Treatment Decisions With Your Team from Patient Empowerment Network on Vimeo.

Lung cancer specialist Dr. Tejas Patil discusses why active communication between patients and their healthcare team is essential when making care and treatment decisions.

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.

See More from Thrive Lung Cancer

Related Resources:

Expert Advice for Recently Diagnosed Lung Cancer Patients

Expert Advice for Setting Lung Cancer Treatment Goals

When to Consider a Clinical Trial for Lung Cancer Treatment?


Transcript:

Katherine:

Where does shared decision-making come into play? When does it come into play?  

Dr. Patil:

It comes in always.   

So, shared decision-making is one of the most important things that patients can do with their providers. It’s really important when we think about treatments to not just be very cookie cutter and follow a recipe book for managing a patient’s lung cancer. It’s really important to individualize therapy. This is really important where patients’ values come in. What patients want to do with the time that they have, and what patients want to do with the treatment? How do they want to take certain treatments?  

So, for example, I have a patient who’s a violinist and was faced with the possibility of receiving a type of clinical trial, but this trial caused neuropathy or numbness or tingling and would essentially render this patient unable to play the violin. This was an unacceptable treatment option for this patient, even though the data would suggest that it would work.  

And that’s an example of where shared decision-making comes in because it’s more than just treating numbers. It’s really about taking care of people. 

Katherine:

Yeah. Why is active communication between the patient and lung cancer team so important? 

Dr. Patil:

Active communication is really important because it’s really one of the easiest ways for things — So, a breakdown of communication rather is a one of the easiest ways for gaps to occur in care. And when there is active communication, when a patient feels like they have an opportunity to reach their team members to connect with their providers, it builds trust. And I think trust is one of the more important elements in the management of patients. If patients can trust their provider and trust that their judgment is sound, then there is more likely to be a harmonious relationship that facilitates the shared decision-making.  

Katherine:

When a patient is in active lung cancer treatment, how are they monitored? 

Dr. Patil:

So, patients are monitored in a variety of ways. If they’re receiving chemotherapy or immunotherapy, typically a provider will see the patient with each infusion cycle. And so, depending on the length of time and the schedule of infusions, that sort of dictates how frequently we see our patients. When patients are receiving targeted therapies, specifically the pill-based forms, they can be monitored in concordance with the NCCN guidelines. And in my practice, I typically see patients every three months with imaging.  

Now, if patients are having a hard time tolerating treatment, so they’re taking their oral pills but for whatever reason, we’re having a ton of side effects, we’re trying to figure out the dose. I might see my patients more frequently. But as a standard, if patients are tolerating their targeted treatment well, their scans look good, I usually see them every three months.  

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.

See More from Thrive Lung Cancer

Related Resources:

Expert Advice for Recently Diagnosed Lung Cancer Patients

Collaborating on Lung Cancer Treatment Decisions With Your Team

When to Consider a Clinical Trial for Lung Cancer Treatment?


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.

See More From Lung Cancer Clinical Trials 201

Related Resources:

When to Consider a Clinical Trial for Lung Cancer Treatment?

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

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


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.

See More From Lung Cancer Clinical Trials 201

Related Resources:

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

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

Questions to Ask Before Participating in a Lung Cancer Clinical Trial


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. 

The Latest Lung Cancer Research Updates From ASCO 2022

The Latest Lung Cancer Research Updates From ASCO 2022 from Patient Empowerment Network on Vimeo.

Dr. Tejas Patil from the University of Colorado Cancer Center shares the latest news in lung cancer research and treatment from the 2022 American Society of Clinical Oncology (ASCO) Annual Meeting, including an update on immunotherapy.

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.

See More From INSIST! Lung Cancer

Related Resources:

Lung Cancer Research Highlights From ASCO 2022

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

How Does Immunotherapy Treat Lung Cancer?


Transcript:

Katherine:

Researchers came together earlier this summer at the annual ASCO meeting. Were there highlights from the meeting that lung cancer patients should know about? 

Dr. Patil:

Right. So, the ASCO ’22 meeting this year had some really interesting publications. So, for me, the key publications that I thought were kind of interesting from ASCO ’22, 2022, one was a publication looking at the role of immunotherapy in patients who are – have a very high PD-L1 expression, so greater than 50 percent. And there’s – 

Katherine:

Reminds us what PDL is. 

Dr. Patil:

Oh, yes, of course. So, PD-L1 is a biomarker. It’s a predictive biomarker that lets us know whether some patients will benefit from immunotherapy. It’s also prognostic because if patients have a high PD-L1 score, they tend to do better with immunotherapy than patients who have a low PD-L1 score. 

Katherine:

Okay.  

Dr. Patil:

Now the interesting data that was presented was a pooled analysis of all the immunotherapy trials to date. And there’s been this ongoing question in lung cancer as to whether patients should get chemo with immunotherapy or whether they should just get immune therapy alone.  

And this study showed that if you have a very high PD-L1 score, it is potentially possible to just use immune therapy and forgo chemotherapy. And I thought that was a very interesting analysis.  

There’s also several other papers that came out as well. Mostly there was a lot of interest in something called circulating tumor DNA. So, let me just take a step back. This is a type of molecule that can be detected in the blood that can help determine whether cancer is present in your blood or not. And there was a lot of publications at ASCO looking at using a concept called minimal residual disease.  

So, when we treat patients with early-stage lung cancer, a big question is how do we know they’re cured or not cured? And a lot of abstracts and publications this ASCO were looking at this concept of minimal residual disease. So, if I can detect some cancer in your blood after you’ve had cured curative therapies, we’re – we have a problem because there’s still cancer around and we’re detecting it in the blood.  

And I think this type of approach is going to really inform how we think about early-stage lung cancer management in the future. 

What Testing Should Take Place After Non-Small Cell Lung Cancer Treatment?

What Testing Should Take Place After Non-Small Cell Lung Cancer Treatment? from Patient Empowerment Network on Vimeo.

It’s well-known that patients should undergo testing before choosing lung cancer therapy, but what testing should take place following treatment? Lung cancer specialist Dr. Tejas Patil, from the University of Colorado Cancer Center, discusses the role of testing after treatment.

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.

See More From INSIST! Lung Cancer

Related Resources:

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

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

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


Transcript:

Katherine:

We know that patients should undergo testing before choosing therapy, but what testing should take place following treatment? 

Dr. Patil:

That’s a really good question. And it’s a complex question depending on the type of treatment that the patient is receiving. So, broadly speaking in lung cancer, we’ve separated the field into two types of treatments.  

Patients with lung cancers will get molecular testing at the onset, right? When they’re diagnosed to look for what’s called a driver oncogene. So, these are mutations that can be targeted with pill-based treatments. And if patients have these mutations, there’s about 10 of these right now and several in development, then the patients can receive a targeted therapy.

However, if they don’t have these mutations, then the standard of care right now is some kind of chemotherapy with immunotherapy. Now, the question asked was what kind of testing do you do after diagnosis? And that really depends on which camp you’re in. So, if you’re in the targeted therapy camp, my general practice has been to repeat molecular testing upon progression. The reason is that patients who are receiving targeted therapies typically evolved some kind of resistance to targeted therapy.  

Broadly speaking, you can categorize these as on target or off target resistance, but the major reason for doing repeat molecular testing is to understand a mechanism of resistance and then hopefully develop a new treatment with that knowledge. Now for the camp that doesn’t receive targeted therapies, let’s say they receive chemotherapy and immunotherapy, there it gets a little bit more nuanced.  

And if there is a role for repeating a biopsy and looking for dynamic changes in the patient’s cancer, but it is not routine and should be done with consultation with a thoracic oncologist. And really the idea here is that if patients who are on chemo immunotherapy progress, any additional molecular testing should really help inform what the next line of treatment will be and sometimes that can be a clinical trial.  

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.

See More From INSIST! Lung Cancer

Related Resources:

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

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

What Testing Should Take Place After Non-Small Cell Lung Cancer Treatment?


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. 

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

What does it mean to thrive with advanced prostate cancer? Dr. Rana McKay discusses the goals of advanced prostate cancer care, reviews current and emerging treatment options, and shares advice for playing an active role in healthcare decisions.
 
Dr. Rana McKay is a medical oncologist at UC San Diego Health and an associate professor in the Department of Medicine at the UC San Diego School of Medicine. Learn more about Dr. McKay, here.
 
 

Katherine Banwell:    

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today we’re going to focus on how patients can aim to live and thrive with advanced prostate cancer. We’re going to discuss treatment goals and the role patients can play in making key decisions. 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. Well let’s meet our guests today. Joining me is Dr. Rana McKay. Dr. McKay, welcome. Would you please introduce yourself?

Dr. Rana McKay:     

Of course. Thank you so much for having me. My name is Rana McKay and I’m a GU medical oncologist at the University of California San Diego.  

Katherine Banwell:    

Excellent. Thanks so much for taking time out of your schedule to join us. Since this webinar is part of PEN’s Thrive series, I’d like to ask you from your perspective, what do you think it means to thrive with advanced prostate cancer?

Dr. Rana McKay:        

That’s a very good question and I think that’s what um, a lot of patients want to actually you know, do in their day-to-day existence. I think it means that they are combatting their disease. They’re taking a proactive role in um, you know, uh tackling um, their illness. They um, are uh, attentive to sort of doing the activities of daily living that really bring them joy and satisfaction and happiness and setting up a treatment plan that is a mutually agreed upon treatment plan with their clinician. That they have buy-in on. That their caregivers have buy-in on. That allows them to do the things that they love to do while keeping their cancer at bay.

Katherine Banwell:    

Okay. Thank you for sharing your insights. Before we move onto treatment, I mentioned that this webinar is focused on advanced prostate cancer. What does it mean for prostate cancer to be considered advanced?

Dr. Rana McKay:        

So, generally what that means is that the cancer may have spread outside of the body – outside of prostate to other parts of the body such as the bone or the lymph nodes which is a common location where prostate cancer um, uh, can go. Additionally, it may mean that the cancer may have come back after um, it was initially treated with an intent um, to cure um, a patient. But then you know the PSA demonstrates um, that you know, there’s a rise in the PSA and the cancer is recurrent.

Katherine Banwell:    

As you mentioned uh, appropriate treatment is part of thriving. We’re going to talk about treatment approaches. But first, how would you define treatment goals?

Dr. Rana McKay:       

So, you know when I look at defining treatment goals it’s focusing on what do we wanna achieve from the standpoint of the cancer? Meaning, you know, what are objectives that are associated with patients living longer?

And then what are objectives um and strategies that we can set-up to make sure that patients are living better? So, I think the treatments are basically set-up to basically help you achieve those two goals. What can we do to help you live longer and feel better?

Katherine Banwell:    

Yeah. Well, let’s walk through the types of treatments that are used today to treat advanced prostate cancer. What are the treatment causes and who are they appropriate for? Let’s start with surgery, for instance.

Dr. Rana McKay:       

So, surgery is something that’s utilized uh, early on when people are diagnosed with cancer. It tends to be utilized when the cancer has not necessarily spread to other parts of the body but is still localized within the prostate itself or maybe there’s just some little bit of breakthrough in the capsule. Sometimes it can be used in people who have involvement of the prostate cancer in the lymph nodes. But it’s generally not utilized in people who have cancer that’s spread to other parts of the body.

Katherine Banwell:    

Mm-hmm. What about other treatment classes? What are they?

Dr. Rana McKay: 

So, radiation can also be utilized. Radiation is a treatment modality that can be used for people with localized disease and um, also it can be utilized for people with advanced disease to treat the primary tumor.

Additionally radiation therapy can be used to help treat symptoms um, if there’s a bone lesion causing pain or other areas that are causing discomfort. Sometimes radiation to those areas um, can um, mitigate pain. When I think about the treatment classes for prostate cancer um, they generally break down into several categories. The first um, um, most predominant category is the hormonal therapy category. Hormonal therapies are really the backbone of treatment for men with prostate cancer and they include the more traditional hormonal therapies that really work to just drop testosterone. So, just LRH – L – LRHA agonists and antagonists and also, they include um, newer hormonal therapies in the form of pills that really target um, strategies at also affecting testosterone function and testosterone production. Another class is also the chemotherapy agents. There are two FDA approved chemotherapies for prostate cancer that are life prolonging and um, uh there’s a certain role for uh, chemotherapy for people with advanced disease.

There’s also immunotherapy that can be utilized. Um, there’s a um, uh, vaccine therapy that’s actually one of the first uh, FDA vaccines for any solid tumor that’s proving in prostate cancer that can be utilized. There’s also radio pharmaceuticals.

So, these are specific agents that deliver um, a bits of radiation to specific areas. Whether it be radium 223 which targets the bone or the newest radio pharmaceutical, which was approved called uh, lutecium PSMA that um, basically delivers beta-radiation to little – sites of PSMA expressing cancer cells and the last category that I would highlight is the category of targeted therapy. There are uh, two targeted therapies for prostate cancer for patients who have like genomic alterations. Those include the drugs olaparib and rucaparib. So, as you can see there’s a wide spectrum of drugs that can be utilized to really keep this disease at bay.  

Katherine Banwell:    

Dr. McKay, for these treatment classes, what can patients expect as far as side effects?

Dr. Rana McKay:       

Absolutely. So, I think side effects – discussing side effects is a really important part of the discussion for selecting any one given therapy and in general, I think um, when we talk about the hormonal therapies one of the side effects that people can get is largely fatigue.

But a lot of the symptoms are related to low testosterone. And so, that may mean muscle loss, bone loss, um, you know, uh, hot flashes, um, fatigue, decrease libido, um… So, you those are things to consider with hormonal therapies. With the chemotherapies, I think the big ones we worry about are fatigue, risk of infection, um blood counts dropping a little bit, people getting tired, numbness and tingling in the hands and feet can occur, some swelling in the legs are common side effects for chemotherapy agents. With regards to the um, uh, immunotherapy with the vaccine therapy, it actually tends to be a fairly well tolerated treatment. Maybe some fatigue, rarely some dizziness or some lip – lip sensitivity, numbness with the – the process of kind of collecting the cells. But it actually tends to be fairly well tolerated.

The um, targeted therapies can cause fatigue. They can cause the blood counts to drop and can impact bone marrow function. There can be sometimes GI side effects. Nausea, um, rash, um and then the immune therapy, the pembrolizumab, that is FDA approved sometimes that can cause immune related adverse events which is kind of over activation of the immune system developing you know, what I’d call it as the itises. Colitis or pneumonitis which is inflammation of various organs and symptoms related to wherever that may be.

Katherine Banwell:    

When should a patient consider a clinical trial as a treatment option?

Dr. Rana McKay:        

So, I generally think that a patient should consider a clinical trial at almost every juncture that a – a clinical decision is being made. I think sometimes there’s this misperception that, “Oh. Clinical trials should only be utilized when I don’t have any other options.” Where in fact I would say clinical trials should be an option to discuss every single time a treatment is being changed. Um, because you know the ultimately the goal is to make sure patients are as I said, living longer and living better and um, you know, making sure that clinical trials are an option on the table at every juncture is really a key step in that process.

Katherine Banwell:    

What are the benefits of being part of a clinical trial?

Dr. Rana McKay:       

So, I think there’s a lot of benefits. I think um, you know, uh for patients with advanced disease it may provide access to drugs that they otherwise not necessarily have access to.

Um, so the standard of care therapies you know, we can prescribe those at any juncture. They’re standard of care. But clinical trials um, really offer an opportunity to experiment with a uh, uh another agent um, and doesn’t necessarily take away from the standard of care options.

I think um, the other thing is you know, I think a lot of patients with advanced prostate cancer, they um, they – want to give back to the community. They want to leave a legacy. They want to contribute to the science. They wanna be a part of that mission to make tomorrow better than today for men with prostate cancer and I think participating in clinical trials can really help achieve that goal. Um, and also benefit the individual as well.

Katherine Banwell:    

What about emerging treatments? Are there any that patients should know about?

Dr. Rana McKay:       

Absolutely. So, there’s a lot of treatments that I think are currently undergoing extensive testing.

There’s um, additional uh, targeted therapies um, for example CDK46 inhibitors that are being tested broadly in the um, um hormone resistant space and the newly diagnosed setting. Um, there’s um, also AKT inhibitors. There are other targeted therapies that are being tested. There’s novel hormonal treatments that target resistant pathways like the antigen receptor degraders. There’s a slew of immunotherapy options um, cell therapy, bi-specific antibodies that are also being tested. So, there’s a lot of really exciting and novel treatments that are looking at overcoming resistance for people with advanced disease.

Katherine Banwell:    

Hm. Do you recommend that men with advanced prostate cancer get the COVID vaccines and the boosters?

Dr. Rana McKay:       

Very good question and in general, I do recommend the vaccines. Especially for patients with advanced disease and those that are on therapy. Um, several studies have demonstrated that patients with cancer are at increased risk of having complications related to COVID and particularly patients that are on active treatment with cancer are at even greater riskSo, um, I would definitely recommend vaccination as a preventative strategy to prevent really complications related to COVID.

Katherine Banwell:    

Mm-hmm. Thanks, Dr. McKay. That’s helpful information. Since prostate cancer affects men differently. Let’s review what factors could impact which treatment is right for their individual disease. How about we start with symptoms?

Dr. Rana McKay: 

So, yeah. I mean absolutely. I think symptoms are definitely something that plays into effect.

Um, sometimes when patients are first diagnosed, they may not have symptoms. But, you know, boney pain. Um, Symptoms of urinary obstruction. You know, there’s specific um, uh, treatments and uh, strategies that we can deploy to help with those kinds of things. Um, you know other factors that I think I – we take into account when we’re making decisions about which agent should any one patient receive is where are there sites of metastases? Um, is there disease just in the bones and lymph nodes or are there other organs involved? Um, what’s the genomic make-up of the tumor? Um, there are certain treatments that we would utilize if someone had a certain specific you know, uh genetic make-up for their tumor. You know, other things that are really important are what kind of drugs has the patient seen before or has that tumor been exposed to? Because that also helps us strategize for what to give them in the future.

Katherine Banwell:    

Do you take into consideration the patient’s comorbidities and their age and overall health? Things like that? 

Dr. Rana McKay: 

Absolutely. Yeah. I think we need to absolute take that in account. I think – I think age is one thing. But I think functional status is um, just as – as important as the actual number itself because people are very different regarding um,  the things that they can do at various uh, age limits and so, that absolutely takes into account weighing the side effects of any given therapy and how that may interact with someone’s existing comorbidities and it may be something that we have to work with a team of other doctors to basically make sure that there is comprehensive, well-rounded care for any one patient.

For example, some therapies may increase the risk of hyper-tension or increase the risk of volume overload and so, if somebody has issues with that already we may have them see a cardiologist so we can make sure that um, you know, we’re kind of addressing the totality of the patient experience. 

Katherine Banwell:    

What do you mean by volume overload?

Dr. Rana McKay: 

Uh, volume overload I mean if they’ve got too much fluid on board. So, maybe if they have heart failure or something like that and we have a therapy that’s gonna cause them to retain fluid. And so then, we would have to work with a cardiologist to make sure that they don’t run into issues.

Katherine Banwell:    

Right. That makes sense. What are the common symptoms of advanced prostate cancer?

Dr. Rana McKay: 

So, um, you know, I would probably say there common symptoms and just because somebody has these symptoms doesn’t mean they have prostate cancer. But fatigue, weight loss, urinary symptoms, trouble urinating, you know, benign prostatic atrophy is one of the most common symptoms or most common conditions in men and um –

Katherine Banwell:    

What does that mean?

Dr. Rana McKay: 

Um, so sort of benign enlargement of the prostate. Um, you know that’s a common phenomenon that happens with age and it can affect somebody’s ability to urinate.

Um, but um you know uh, sometimes with prostate cancer it can also impact somebody’s ability to urinate. Their stream, their flow. Um, they may have rectal discomfort. They may feel tired, boney pains. Usually, I tell patients you know persistent progressive symptoms that are just you know not going away, not getting better. Those need to be looked at by a physician to evaluate further. 

Katherine Banwell:    

Mm-hmm. You mentioned genetic mutations. Should patients advocate for genetic testing if they haven’t had it already?

Dr. Rana McKay: 

Um, it all depends on uh, what kind of uh, where they are in the process. So, for most men who have advanced disease, they should undergo genetic testing of both their tumor, and it is also recommended to do hereditary testing for patients who have advanced disease. Um, and that information may not necessarily be utilized at the exact time that the test is done.

But it may be utilized down the road for treatment options at a later time point. Um…

Katherine Banwell:    

Mm-hmm. Once a man is undergoing treatment for advanced prostate cancer how are they monitored to see if it’s actually working?

Dr. Rana McKay: 

So, a lot of ways. So, one is by just you know, visiting with the patient. Making sure that their symptoms are in check. Making sure that they’re not developing new um, aches or pains that are worrisome. It’s by checking their labs um, in addition to their organ and bone marrow function. We would check their PSA. Um, and PSA isn’t the whole story. But it is one factor that contributes to us determining whether treatment may or may not be working. It’s also doing intermittent scannings. So, um, you know, uh, CT scans of the organs, of the lymph nodes. Bone scan and now we actually have PSMA based imaging which can be integrated to help um, assess uh, where the disease is and um, not yet being utilized to assess whether something is working because we haven’t really defined the criteria there.

But um, it can be utilized as well.

Katherine Banwell:    

Mm-hmm. Dr. McKay, how would you define precision or personalized medicine and how close are we getting to personalized medicine for advanced prostate cancer?

Dr. Rana McKay: 

Yeah. So, what I – how I define it is the right treatment for the right patient at the right time. It’s basically you know, based off of somebody’s genomic profile of their tumor and ideally that genomic profiling is done close to the time that that treatment is being initiated. So, within six months or twelve months of somebody starting a given therapy we understand the genetic make-up of the tumor. The tumor has you know, for example a BRCA1 alteration and we know that olaparib is a drug that can be utilized and has demonstrated efficacy for people that have that mutation and then we would use that agent. So, it’s basically trying to um, personalize therapy based on the genomic information of that tumor.

And um, I think we are getting there. There are actually trials now that are being launched that are bio-marker driven trials with bio-marker selected therapies for patients based on -off of not just DNA but also RNA to help with um, allocating a given therapy.   

Katherine Banwell:    

What do you feel are the common obstacles to care for a man with advanced prostate cancer?

Dr. Rana McKay: 

So, I think that there can be a lot of obstacles with regards to um, you know, comprehensiveness of the care. You know it’s one thing to sort of, “Okay. This is the next therapy to treat you with.” But there’s a lot of side effects that can happen with any one given therapy and ensuring that there is open dialogue between um, uh a man and his – his clinician and caregivers.

You know, I think that that can sometimes be a hurdle. Like that open communication can be so important. It’s not just about picking the next best drug but it’s ensuring that there’s sort of comprehensiveness in care. I think a lot of um, you know, patients they may not necessarily know and they’re really kind of dependent on their clinician to sort of go through the compendia of options that may be available and why one may be better than the other for any one given scenario. So, I think it’s like that shared decision-making, that open dialogue.

Um, you know, I think also thinking about advocacy networks, I think um, you know, I can say things until I’m blue in the face like this is what being on ADT feels like. But I think sometimes actually connecting with another patient whose gone through the same experience who can kind of weigh in from the patient perspective like what it actually feels like, I think is not to say a hurdle. But I think we can do a better job as a medical community of making those networking connections available for patients so they can be a part of a broader community of individuals like them going through the same thing they’re going through.

Katherine Banwell:    

Yeah. It helps to know that there are others going through exactly what you’re going through or similar symptoms. We received a patient question prior to the program. What is the difference between my PSA level and Gleason score?     

Dr. Rana McKay: 

Yeah. So, very good question. So, Gleason score is something that is determined based off a pathologic assessment. So, it’s basically you know, a biopsy is done from the prostate or the – the surgical specimen from the removal of the prostate is looked at under the microscope and a Gleason score is based off what something looks like underneath a microscope and ideally, a Gleason score is given really only for the prostate – for tissue derived from the prostate.

So, if somebody has a bone biopsy for example or a lymph node biopsy, they’re not going to necessarily get a glycine score per se. It’s been – been validated from the prostate itself and ideally, also, an untreated prostate. So, if somebody has you know had radiation therapy and then has a biopsy, the Gleason score there is – there should not necessarily be a notation of what a Gleason score is. It’s really an untreated prostate. Now PSA is prostate specific antigen and it’s a protein that’s made from the prostate gland and it’s found in circulation. PSA doesn’t hurt any – the actual you know, molecule itself is – is innocuous. It doesn’t hurt anything. It’s just a marker of um, sometimes can be a marker of burden of disease in prostate cancer and I think sometimes we as clinicians do you know, you know a disservice to some patients because I think we fixate – we can fixate a lot on PSA.

But PSA is not the whole story and it’s one factor of several factors that we take into account in determining whether someone needs treatment or whether a treatment is working or not working.

Katherine Banwell:    

Why should patients feel confident using their voice in partnering in their care? Do you have any advice?

Dr. Rana McKay: 

Um, I mean it’s – it’s absolutely important for patients to share their perspective and for there to be shared decision making at every single juncture along the way. Even around decisions to not treat. So, you know, I think it’s a lot of um – there’s a lot of grays in prostate cancer and a lot of art in deciding what treatment to do and at what specific time and for any given patient given the values that that patient brings to the table, they may come back with a different decision compared to another patient. So, without the patient you know voicing what their values are it’s impossible to make a treatment decision.

So, it is so critically important to have that open communication with your clinician.

Katherine Banwell:    

So, in addition to that – in conjunction with that, should men diagnosed with advanced prostate cancer consider a second opinion or consulting with a specialist?

Dr. Rana McKay: 

I think it’s always a great idea to get a second opinion. Um, you know, I think that um, you know, it will only empower individuals um, when they seek sort of a second opinion to either confirm um what their physician has already told them and then they have reassurance that they’re on the right path or maybe provide some new um, novel insights that they can take into consideration and just think about how that could be applied to them. So, you know, I think that a second opinion is always really valuable.

I will balance that by saying um, sometimes it can be detrimental if there’s lots of opinions because I will say that coming to a consensus when there’s lots of different specialists that are involved, and everybody makes the soup a little bit differently –

Katherine Banwell:    

Yeah.

Dr. Rana McKay: 

Sometimes that I think that can actually um, hurt patients in being able to actually come to a decision because then they’re like, “I don’t know what decision to make. This person said do this. This person said do that. This person said do that.” Um, and so that can sometimes be um, detrimental. But a second opinion, I do always encourage it. I do always value it. But I always want the patient to bring it back to me so I can share with them and discuss, “Okay. I understand. This is why x said X-Y-Z. This still aligns. This still doesn’t.” They need a quarterback like you know, it’s one thing to sort of get second opinions. But I think every man with prostate cancer should have a quarterback that’s driving their care and advocating for them.

Katherine Banwell:    

Yeah. How can patients find specialists near them?

Dr. Rana McKay: 

So, um, I will say that they are national comprehensive cancer institutes. They’re all across the country in rural areas and not. I think um, you know finding the closest NCI designated comprehensive cancer center close to you is probably a good place to start and identifying who is seeing um patients with genetic urinary malignancies or prostate cancer at that facility is a good place. I think the prostate cancer foundation is an excellent advocacy group for patients with prostate cancer. They have a tremendous amount of resources um, to help connect patients with um, clinicians, and other resources um, in their journey with cancer.

Katherine Banwell:    

How can caregivers best support their loved ones?

Dr. Rana McKay: 

So, I think being present is one of the first things. Um, you know, I think that uh, um, you know, uh, being you know, supportive, being present.

Like you know, attending the doctor – doctor’s visits. It doesn’t necessarily have to be every single doctor visit. But those critical doctor visits where um, you know clinical decisions are being made. I think it’s really important also um, to there may be some hesitancy on the part of patients to sometimes be open or vocal with their clinicians about various aspects of what they may be experiencing at home, or they may be undermining or sort of – I think caregivers can help in sort of giving an outsider’s perspective. “Well, this is how things are going at home,” and “You know this is how things are,” and “These are the things that we value and we’re gonna go on this family trip,” and “This is a big-ticket item for us. So, how can we work around planning a treatment plan that allows us to do that?” So, I think it’s really important.

Katherine Banwell:    

ASCO was held in June. Is there news from the conference that patients should know about?

Dr. Rana McKay:        

Yeah. So, I think some of the biggest therapies in prostate cancer that was one of the newest therapies that was just FDA approved is um, Lutetium PSMA. It’s um, a radioligand therapy that targets specifically PSMA expressing cells. Um It delivers a little bit of beta radiation to those cells. Um, that therapy was approved this past Spring and there highlights at ASCO about the utility of this therapy. Um, and again, there’s a series of novel compounds that are being tested in prostate cancer not yet ready for prime time but a lot of exciting work that’s being done um, to try to get new drugs that work better for our patients.

Katherine Banwell:    

Mm-hmm. Going back to ASCO and new developments, how can patients stay informed about research developments like – like these that happen at ASCO.

Dr. Rana McKay:

So, very – very good. I think there’s a lot of networks for people with prostate cancer. I think one like I mentioned, the prostate cancer foundation it’s a wonderful community. Um, that really focuses on making sure that up to date, you know, uh, evidence-based data is uh, distributed to patients in a manner that is – that makes sense. That’s there’s not a lot of medical jargon and so I think that the PCF is really a wonderful resource. Uh, ASCO itself also has um, you know patient interfacing you know, materials through their website.

American Cancer Society does as well. Um, the American Cancer Society can also be a wonderful resource for patients that are newly diagnosed or going through treatment.

Katherine Banwell:    

Mm. Before we end the program, Dr. McKay, I wanted to ask. Are you hopeful that men can thrive with advanced prostate cancer?

Dr. Rana McKay:       

Oh, I am absolutely hopeful that they can thrive. I mean that is um, the name of the game and I think there’s a lot of um, uh, people who can look to for motivation.

Um, uh, to basically show that despite treatment, despite having advanced disease patients can thrive and continue doing all of the things that they love that give them joy and satisfaction in their lives.

Katherine Banwell:    

It seems like there’s a lot of progress and hope in the field which is good. Dr. McKay thank you so much for taking the time to join us today.

Dr. Rana McKay:       

Of course. My pleasure.

Katherine Banwell:    

And thank you to all of our partners. To learn more about prostate cancer and to get tools to help you become a proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks so much for joining us today.

Thriving With CLL: Your Role in Managing Your Care

Thriving with CLL: Your Role in Managing Your Care from Patient Empowerment Network on Vimeo.

 How can patients thrive with chronic lymphocytic leukemia (CLL)? Dr. Jean Koff discusses CLL treatments approaches, strategies for managing disease symptoms and treatment side effects, and shares advice on how patients can be proactive in their care.

Dr. Jean Koff is an Assistant Professor in the Department of Hematology and Oncology at Winship Cancer Institute of Emory University. Learn more about Dr. Koff, here.

Download Resource Guide

See More from Thrive CLL

Related Resources:

Setting CLL Treatment Goals WITH Your Team

Expert Advice for CLL Self-Advocacy

Expert Advice for CLL Self-Advocacy

CLL Treatment Approaches: What Are the Types?

Transcript:

Katherine Banwell:  

Hello, and welcome. I’m Katherine Banwell, your host for today’s program. Today we’re going to discuss what it means to thrive with CLL. And how you can play an active role in your care. Before we meet our guest, let’s review a few important details. The reminder email you received about this program contains a link to program materials. If you haven’t already, click that link to access information to follow along during the webinar. At the end of this webinar, you’ll receive a link to a program survey. Please take a moment to provide feedback about your experience today, in order to help us plan future webinars.  

And finally, before we get into the discussion, please remember that this program is not a substitute for seeking medical advice. Please speak to your healthcare team about what might be best for you. Well, let’s meet our guest today. Joining me is Dr. Jean Koff. Dr. Koff, welcome! Would you please introduce yourself? 

Dr. Jean Koff:

Hi, I’m Jean Koff. I’m a lymphoma and CLL specialist from Emory University and it’s a pleasure to be with you here today. 

Katherine Banwell:

Thank you for taking the time to join us. We start all of our webinar in our CLL Thrive series with the same question. In your experience, what does it mean to thrive with CLL? 

Dr. Jean Koff:

So, I think thriving with CLL means that a patient is informed about their disease, they are comfortable with the physician who’s helping them navigate their disease and their management plan. And their management plan, whatever that might be, is really allowing them to focus on their life outside of CLL. So, keeping their symptoms to the absolute minimum, their physician keeping them informed about their disease progress, or lack thereof, in terms of keeping the disease at bay so they can focus on all of those things that bring them enjoyment outside of the CLL world. 

Katherine Banwell:

That’s great. Thank you for your perspective. One part of thriving  with CLL is managing the symptoms of the disease. What are the common symptoms of CLL? 

Dr. Jean Koff:

So, one thing that I see with nearly all of my CLL patients, regardless of where they are in the CLL journey, and regardless of whether they need active medications to manage their CLL, is some degree of fatigue. And this can range from just mild fatigue that patients notice that they need a little bit of a breather in the middle of the day, to needing more sleep at night, to not being able to exercise as much as they’re used to. And that is by far one of the most common symptoms we see. Again, whether or not their disease needs medication to manage it. The classic symptoms of CLL that often let us know that it’s time to start medical management, are not just this fatigue. But the classic symptoms are B symptoms. And we describe those as fevers, night sweats, and unintentional weight loss. Those are very common. And then some patients with CLL will also have what we call palpable lymphadenopathy, which is our term for lymph nodes that are enlarged that you can feel. And the most common places to feel these on the body are on the neck, under the arms, and in the groin.  

Katherine Banwell:

Okay. How are symptoms treated? 

Dr. Jean Koff:

So, if your symptoms progress to the point that your doctor thinks you need medication – they’re becoming disruptive to your life, or they are getting worse and worse over time, then there are a variety of medications that we can use in CLL. And this is actually a very exciting field. Right now, the state of the field is that most patients who are starting on their first treatment for CLL will use some sort of oral medication, and that may be accompanied by an IV – what we call monoclonal antibody, or it may not. But one thing that has really changed even since I very first started practicing, is that we no longer commonly use what I would call conventional chemotherapy to treat CLL. Even though this was the standard of care just a few years ago. 

Katherine Banwell:

Wow. So, a lot has changed. 

Dr. Jean Koff:

Yes, definitely. 

Katherine Banwell:

Why is it so important for patients with CLL to speak up and communicate with their healthcare team about some of their symptoms? 

Dr. Jean Koff:

Well, for starters we want you to feel better. That’s our number one job as – as physicians, is we want to get you to feeling to – to where you are feeling like your best self. CLL or not. So, we want to make you feel better. But in CLL your symptoms are actually one of the criteria we consider when we’re thinking about whether or not we need to start a new therapy, or if you’re somebody who’s already on therapy, whether we need to change your therapy. So, it’s actually very important and your CLL doctor should be checking in with you regularly to see if you have new or worsening symptoms that might be due to your CLL.  

Katherine Banwell:

Mm-hmm. It sounds like treatment of the disease is key to controlling your symptoms. So, let’s talk about treatment. Many patients are overwhelmed by the different types and classes of treatment. When is it time to treat CLL, and what are the options?  

Dr. Jean Koff:

So, I boil down the criteria to when you need to treat your CLL to two main categories. One category is that the disease is progressing quickly, and the other category is the disease is causing problems of some kind, or getting ready to cause problems of some kind. Those are some of the broad categories that we think about when it’s time to start treatment for CLL. Now, this – the groups that research CLL have put out various criteria that help guide physicians about when it’s time to start treatment and some of those more specific criteria include items like symptoms. So, symptoms are a very important part of that decision-making process.  

And the same symptoms that we mentioned, the B symptoms, fevers, chills, night sweats, weight loss that’s unintentional, or lymph nodes that you can feel, those would potentially be reasons that your doctor would want to start you on CLL therapy. But the CLL can cause issues even in a patient who’s not necessarily having symptoms. So, one of the most common ways that CLL can cause issues is the CLL cells can cause your other blood cells, the normal blood cells, to be low in number. There are several ways the CLL cells can do this. One of the most common ways is that the CLL cells which are often circulating through your bloodstream can also collect or overrun your bone marrow.   

And if you think about it, the bone marrow is the factory that makes all of your blood cells. So, when there are too many CLL cells in the bone marrow, they can crowd out the normal blood cells, like red blood cells or platelets. So, when red blood cells or platelets get low beneath certain thresholds, that’s a reason to start CLL therapy. 

Katherine Banwell:

Mm-hmm.   

Dr. Jean Koff:

So, there are a couple other criteria that we think about. CLL cells can collect in other areas, including the spleen. So – and if you remember, the spleen is a lymphoid organ that sits on the left side of your body that is right below the stomach. And so, if CLL cells collect in the spleen, they can cause it to be too big, it can press on the stomach, it can make it so you feel full, even if you haven’t eaten a full meal, that’s something we call early satiety. It can be uncomfortable, causing some abdominal pain. And if the spleen gets really, really big, it can cause it to not be able to do its normal job, which is to filter out the normal blood cells like it does every day. And so, that would be a reason to start therapy as well. And then the last – the last category I would think about is in CLL we have lots of – of CLL cells that are circulating in the blood that we can check with a routine blood count. And the absolute number of CLL cells is not as important as how fast that number is growing. So, your physician will track how fast that number of CLL cells is doubling.  

And if you meet criteria for what we call rapid doubling time, which is usually thought of as less than 12 months but certainly less than six months. So, if your count goes from 30,000 to 60,000 in under six months, then it may be time for you to start thinking about therapy. 

Katherine Banwell:

Right. So, Dr. Koff, would you briefly review the treatment classes? 

Dr. Jean Koff:

So, for first-line treatment, we have two main treatment classes that we think about at this time. The first is – is called BTK inhibitors which is Bruton tyrosine kinase inhibitors. And these are oral medications, so medications that you take by mouth, and the most well-studied of these is called ibrutinib, we typically prescribe ibrutinib by itself. There are other BTK inhibitors we are also now using in this space, one of them is called acalabrutinib and that is often given with an IV monoclonal antibody called Obinutuzumab.   

The other main class of drugs that we consider for first-line treatment of CLL is the BCL-2 Inhibitors. Right now there’s only one BCL-2 Inhibitor that’s approved for CLL and front-line and it’s called venetoclax. Usually, this drug is also given in the front-line with an anti-CD20 monoclonal antibody. So, the venetoclax itself is a pill you take. And the monoclonal antibody is an – either an IV or a subcutaneous injection.  

Katherine Banwell:

Where do clinical trials fit into CLL treatment? 

Dr. Jean Koff:

So, clinical trials are part of the reason, a big part of the reason that we’ve been able to make so much progress in how we treat CLL over the past few years. Clinical trials are how we figure out what treatments work for CLL, how patients feel on them, what sort of adverse events or side effects they have on individual treatments, and which treatments do better for keeping CLL symptoms under control, keeping the disease under control, and allowing patients to live longer and have a higher quality of life with their disease.  

Katherine Banwell:

Are there any other options available for CLL patients? 

Dr. Jean Koff:

So, there are other options. A clinical trial, if that is available to you as a patient is nearly always a good thing to consider if you have CLL. Because the vast majority of patients will not be cured by CL – by their treatment for CLL. Meaning that the – even though the treatments we have usually work for a very long time in most patients, ultimately the CLL will at some point, perhaps years down the road, progress and need another therapy. For that reason, we know we can do better. And we are hoping that the next clinical trial is going to lead to the discovery of a new agent or a new combinations – new combinations of agents that will allow patients to live longer with a better quality of life with CLL.   

Katherine Banwell:

Mm-hmm. 

Dr. Jean Koff:

So, that’s always a good option to consider. 

Katherine Banwell:

Mm-hmm. What are the common side effects of treatments, and how are they managed? 

Dr. Jean Koff:

So, each of the different classes of agents has a different profile of side effects. The BTK inhibitors, the first class that I mentioned with ibrutinib and acalabrutinib, are usually very well tolerated. The most common side effects that we tend to see are things that the patients can feel or see, but also things that we can see on the labs when we’re monitoring patients. So, sometimes you can see a lower platelet counts or lower cell counts with ibrutinib. That’s something that you may not notice, but your doctor’s going to notice on the – the blood counts when you come to the office. Sometimes ibrutinib can cause a rash or GI upset, this is usually easily managed with supportive care from your physician.  

And then some more – some more common effects of the BTK inhibitors include joint pain and headache. And again, many physicians, because we’ve been using BTK inhibitors for a long time, have a good regimen for treating these side effects. More uncommon side effects of BTK inhibitors, particularly ibrutinib that we look out for would be abnormal heart rhythms and some tendency for bleeding. But these are relatively uncommon and with newer BTK inhibitors, we’re seeing lower rates of these side effects.  

So, in terms of venetoclax side effects we have a little bit of a different profile. This agent is much more likely to cause lower cell counts, especially in a white blood cell count known as neutrophil count, and so your doctor will be monitoring you for that. In terms of patient side effects that you can feel, it can cause a rash, it can cause some GI upset. These are usually relatively easily managed but we want you as the patient if you’re on venetoclax to talk to your doctor about these side effects so that they can help you feel better and help you manage those. In terms of the anti-CV20 monoclonal antibodies, which we use a couple in CLL more frequently, they have very similar side effect profiles.   

So, one is rituximab, and one is obinutuzumab. Obinutuzumab is usually used in combination with venetoclax in front-line CLL.  

Like I mentioned before, this is an infusion and most of the side effects that we think about and most commonly see in these anti-CV20s are side effects that patients have during the infusion. And these are referred to as infusion reaction. And these are relatively common, around 30 percent in these anti-CV20 monoclonal antibodies. So, what is an infusion center react – er sorry, what does an infusion reaction look like? This looks sort of like an allergic reaction.  

Katherine Banwell:

Hm.  

Dr. Jean Koff:

So, your nurses in the infusion center are going to be monitoring you very carefully once you start the infusion, and they’re going to start it at a low dose, very slowly. But the side effects they’re monitoring for, they’re looking for changes in your heart rate or blood pressure. You may start to feel hot or cold or sweaty, you may have chills. Sometimes patients can have swelling in their throat or their tongue. And what will happen is because these are fairly common, is we’re still able to give the anti-CV20, but what we do is the nurse will stop the infusion, they may give you some medications that calm down that infusion reaction. So, medications 

 like antihistamines –  

Katherine Banwell:

Mm-hmm. 

Dr. Jean Koff:

Or steroids that help tamp down that immune response, and then they start the anti-CV20 infusion at a lower rate. The vast majority of patients will be able to receive an anti-CV20 antibody even if they have an infusion reaction. They may just need a little bit more of those immune-tamping down medications like antihistamines and steroids. And then the last thing to consider, which I think we’ve mentioned, especially in the venetoclax-containing regimens, is the Tumor lysis syndrome. And so, that is a side effect like we mentioned is kind of like the venetoclax working really, really, really well, of the tumor breaking down too quickly.  

And so, patients who have Tumor lysis, if they’re at high-risk, hopefully they’re already being monitored very closely with frequent lab draws, and they may receive medications that – that diminish the risk of adverse events happening because your electrolytes are out balance, for instance, your potassium is too high, or your calcium is too low. Because your doctors are monitoring you closely, they can give you medications that can help balance out those – those electrolytes and help protect the kidneys. The Tumor lysis is typically not a risk after the initial doses of venetoclax.  

So, the first couple weeks is when we typically monitor that, and then once the CLL has been broken down, or as I like to say, once it’s been cooled off a little bit, then you no longer have this risk of Tumor lysis and it – it doesn’t require further monitoring.  

Katherine Banwell:

That’s great information, thank you. What is the patient’s role in deciding on a treatment plan? 

Dr. Jean Koff:

So, it’s very important that the patient be involved in deciding on a treatment plan. Especially in first-line. Because we have these two excellent classes of agents, the BTK inhibitors and the venetoclax- containing regimens. Both of them have been shown to have very good what we call efficacy in CLL, meaning that they’re able to control the disease, patient’s symptoms largely at bay for long periods of time. You know, we’re talking an average of years that – that patients are on these therapies. And they each, like I said have different side effect profiles.  

And they’re given in slightly different ways. And so, right now we don’t have data from our clinical trials comparing a BTK inhibitor regimen to a venetoclax-containing regimen in CLL patients to tell us one is better than the other. And so, for that reason, a lot of the decision-making about which therapy is going to be better for you, or which therapy you would prefer, lies with the CLL patient rather than with the doctor. And the things that I ask my patients to consider, there are a couple different things. One is the side effect profile. So, patients may be more or less comfortable with certain side effects of one drug compared to another. Or there may be something in the patient’s medical history that puts them more at risk for a certain side effect than another. 

The other major player in this decision-making process is how these drugs are given. So, with ibrutinib, the ibrutinib is given as a pill that you take once a day, and you take it indefinitely. Meaning you take that pill once a day for as long as it’s doing what it’s supposed to do, which is keeping your CLL under control, and as long as the patient is tolerating it well. Meaning you’re not having a lot of uncomfortable side effects from the ibrutinib. So, I have patients who have been on ibrutinib for years and years and years and years.  

The venetoclax-containing regimen for patients who are getting their first-line treatment in CLL is different. It is designed as a – what we call time-limited therapy. And so, this regimen is given in – over about 12 months, 12 or 13 months, and then stopped. As long as the patient has had a good response. The other thing to consider with the venetoclax regimen, it’s not just the pill. You do take a pill every day, but you also get a – an infusion for about six months of the monoclonal antibody. Meaning that you’ll have to come into the infusion center and get an infu – an IV infusion of this drug called Obinutuzumab. The last consideration with the venetoclax regimen that differs in how it’s administered, is the venetoclax often works so well that it can break down the CLL cells a little bit too quickly.  

And so, for patients who have a very, very high white count, or large lymph nodes due to their CLL, there is a risk of something we call Tumor lysis syndrome, which refers to the process where the tumor cells break down very, very quickly, and they produce molecules that are released into the bloodstream that can be dangerous if they get too high or too low. And so, sometimes, in some patients we have to monitor for the Tumor lysis syndrome by checking labs fairly frequently after we start the venetoclax. And for some patients that means they have to stay overnight for a night or two in the hospital for lab monitoring.  

So, for some of my patients that I talk to about venetoclax, they say I want to stay out of the hospital, I just want to take a pill, I’m fine taking a pill, I’ll go with the BTK inhibitors. For other patients, they say I don’t want to be on a pill every single day, I will go through this year of therapy, I’m comfortable with that, and I’m happy that I’ll be able to take a break from therapy after one year. So, that ends up being a large factor in many of the conversations I have with my patients about which therapeutic approach we’re going to use in front-line therapy. 

Katherine Banwell:

Hm. Dr. Koff, we received a patient question prior to the program. If I’ve had FCR for my first treatment, does that prevent me from having – or having to take an oral drug later on? 

Dr. Jean Koff:

Absolutely not. So, the very first clinical trials that we did studying these regiments, especially the BTK inhibitors, were performed in patients who had received conventional chemotherapy like FCR. And what we saw is that patients who had received conventional chemotherapies and had – and needed retreatment of their CLL responded very, very well to agents like ibrutinib. And ibrutinib was able to control their disease, control their CLL, without them needing additional therapy for a long time. And that was actually the original indication for ibrutinib, was patients who had what we call relapsed CLL, often after these conventional therapies.   

Katherine Banwell:

Hm. Let’s turn to medication management. Excuse me. With oral medications available to treat CLL, patients now have the role of self-administering with their treatment program. How does this work exactly? 

Dr. Jean Koff:

So, just as you would receive a prescription from one of your doctors to manage your high blood pressure with a bottle of pills, you would also receive a special prescription from the doctor who is managing your CLL, a prescription for one of these oral agents. Either the BTK inhibitors or a venetoclax. And you would be – you would have the instructions on the pill bottle, just as you would you know another prescription and you would take the medication by mouth, every day, as instructed. 

Katherine Banwell:

Okay. What happens if a patient forgets to take their medication? Does it impact efficacy? 

Dr. Jean Koff:

So, forgetting a dose for one day, or having to skip a dose for another reason, or even a few days, shouldn’t have a major impact on controlling the CLL. And that’s true for two reasons. One, you’re going to start taking your medication again, you know fairly soon after you miss that dose. The next day. Or – or in a few days. But also, the – what we call the half-lives of these drugs are relatively long, and so you have some activity of the drug in your system in its ability to control the CLL, even though you haven’t taken the dose that you missed that day. In fact, sometimes we have to hold CLL medications.   

Maybe you’re getting a procedure, some sort of surgical procedure, and you might be at an increased risk of bleeding just in the day or two before and after that surgical procedure, so we would actually recommend that you hold a BTK inhibitor, if that was what you were receiving for your CLL, and then resume it once your risk of bleed had gone down a few days after the surgery.  

Katherine Banwell:

Hm. 

Dr. Jean Koff:

We do recommend that if you are going to miss a dose of your medication that you let your clinical team know, just so they can instruct you on how to resume your dose if you haven’t already gotten instructions from them about that. 

Katherine Banwell:

Okay. That’s really helpful information. What strategies are there to keep on schedule and remember to take the medication on time and regularly?  

Dr. Jean Koff:

So, I think these strategies are good whether you have CLL or some other type of disorder that you’re taking medication for. My patients often use labeled pill boxes with days of the week and a.m. and p.m., so that you know whether you took your pill that day and what time of day you took it. And so, setting that out for the week can be very helpful in organizing and making sure that you can check back and remind yourself whether or not you took your pill. 

Katherine Banwell:

How are patients monitored during treatment? 

Dr. Jean Koff:

So, your doctor is going to monitor you more closely when you first start a medication. So, I typically monitor my patients within one or two weeks of them starting an oral drug. One to make sure that they’re feeling okay on it, that they’re not having any side effects when they first start, but also to check lab values and make sure that the – the oral medication isn’t causing any problems with their blood counts or with other labs. Then, once we’ve established that they’re doing well on the medication, maybe they’ve come in every couple weeks for a month or six weeks, we start to space out those visits.  

I usually see my patients who are on active therapy about every three to six months to check and see whether they’re feeling okay, whether they’re having any side effects from the medicines, like I said to check their labs, make sure the medications aren’t causing any lab abnormalities. And also in the longer term, to make sure that their CLL is under good control on – on the medications. Because that’s one of our main goals is to keep the CLL under good control.  

Katherine Banwell:

We received another patient question prior to the program. Has there been any progress in helping CLL patients get a better reaction from COVID vaccines? 

Dr. Jean Koff:

That is a great question, and that is one that is near and dear to my heart and my colleagues at – at Emory. You raise a really good point, which is that CLL patients have altered immune systems just by virtue of their CLL. The CLL cells exert their influence on other immune cells and can cause your immune system not to respond to infections or immunizations the way it normally would. That’s without any medication in the mix. Now, when we look at patients who are on medications like the ones we’ve been talking about, the BTK inhibitors, venetoclax, but especially the monoclonal antibodies that react against CD20, we see that those patients really do not have an optimal response to vaccines, especially the COVID vaccine. 

Meaning, that patients who receive the COVID vaccine while they’re on that therapy, or even within twelve months of receiving a monoclonal antibody, often don’t mount the same strong immune response as somebody who’s not on those therapies. So, luckily, we – we don’t have to just depend on the vaccines. I still recommend that my patients get vaccinated, because it is safe and it might impart a little bit of efficacy, and it’s certainly more effective than not getting the vaccine. But we also have other approaches to increasing your protection against COVID, including the – the injection called Evusheld, which can help protect patients specifically whose immune systems are not completely normal and are not expected to mount a strong response to COVID vaccines.  

So, that is definitely a discussion to have with your doctor about how your medications impact your protection from COVID, from vaccines, and whether there are other medications that might be used to help increase your protection.  

Katherine Banwell:

That’s great advice. Dr. Koff I’d like to get your thoughts on where we stand with progress with helping people live longer and truly thrive with CLL. What would you like to leave the audience with? 

Dr. Jean Koff:

So, I think that one thing to remember with CLL is over the past few years we’ve seen an explosion in how we manage the disease because we have newer agents and therapeutic combinations that are helping people control their CLL for much longer than was possible 10 or 15 years ago. We still have a long way to go because ideally, we want every patient to be able to control their CLL and thrive with CLL for as long as possible. And, right now like I said before, we are not curing patients yet. Meaning that we don’t have a therapy that can get rid of the CLL, make it go away, and keep it away forever.  

That’s where clinical trials come in. That’s where we are able to make progress, is we’re able to study what therapies work, what therapies don’t, how they perform against each other, how they make patients feel, and what sort of side effects might be associated with them. And so, that’s really the next step, is continuing the work that has already been done in clinical trials and exploring these new therapeutical approaches. 

Katherine Banwell:

Dr. Koff, thank you so much for taking the time to join us today.   

Dr. Jean Koff:

Thank you for having me. 

Katherine Banwell:

And thank you to all of our collaborators. If you would like to watch this webinar again, there will be a replay available soon. You’ll receive an email when it’s ready. And don’t forget to take the survey immediately following this webinar. It will help us as we plan future programs. To learn more about CLL and to access tools to help you become a more proactive patient, visit powerfulpatients.org. I’m Katherine Banwell. Thanks so much for being with us today. 

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

Related Resources:

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

Related Resources:

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

Related Resources:

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

Immunotherapy for Lung Cancer Treatment: What to Expect

Understanding Biomarker Testing for Non-Small Cell Lung Cancer Treatment

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.