Lung Cancer Treatment Decisions: What’s Right for You?

Lung Cancer Treatment Decisions: What’s Right for You? from Patient Empowerment Network on Vimeo.

When choosing an lung cancer treatment, what should be considered? Dr. Jessica Bauman, a lung cancer specialist, reviews treatment types and key decision-making factors, including how test results influence options and provides advice to help you advocate for better care.

Dr. Jessica Bauman is assistant professor in the department of hematology/oncology and as associate program director of the hematology/oncology fellowship training program at Fox Chase Cancer Center in Philadelphia. Learn more about Dr. Bauman here.

Download Program Resource Guide

See More From the The Pro-Active Lung Cancer Patient Toolkit

Related Programs:

Lung Cancer Treatment Advances: What are Antibody Drug Conjugates?

Why You Should Consider a Clinical Trial for Lung Cancer Treatment

The Pro-Active Lung Cancer Patient Toolkit


Transcript:

Katherine:                  

Hello and welcome. I’m Katherine Banwell, your host for today’s program. Today we’ll discuss how you can be proactive in your lung cancer care to partner with your healthcare team to make the best care and treatment decisions for you. Joining us today is Dr. Jessica Bauman. Welcome, Dr. Bauman. Would you please introduce yourself?

Dr. Bauman:              

Absolutely, thank you so much for inviting me here today. My name is Jessica Bauman, and I am a thoracic and head and neck oncologist at Fox Chase Cancer Center.

Here I am also the associate program director for our hematology/oncology fellowship program as well as one of the disease site leaders of one of our research teams.

Katherine:                  

Excellent, thank you. A reminder that this program is not a substitute for seeking medical advice. Please refer to your healthcare team about what might be best for you.

Dr. Bauman, from my understanding, there are two main types of lung cancer – small cell lung cancer and non-small cell lung cancer. Would you provide a brief overview of how these two types of lung cancer differ?

Dr. Bauman:             

Absolutely. So, I think it’s important for any new patient who’s coming in, to see me or any medical provider. The first thing we need to establish when we are thinking about a lung cancer diagnosis is what the cells look like under the microscope. And the simplest way to think about this is either they look like small cell lung cancer, or they look like non-small cell lung cancer.

And that really can decide what kind of treatment we need to pursue. For small cell lung cancer – small cell lung cancer can be a more aggressive lung cancer that certainly can spread throughout the body and requires more urgent treatment in general when we’re thinking about the speed in which we need to start to treat patients for this cancer. For non-small cell lung cancer, in general, we don’t have to start treatment as quickly as we need to for small cell. And there is a lot more information right now that we need other than just the simple non-small cell lung cancer diagnosis. We need to know whether it is adenocarcinoma or squamous cell carcinoma, which are further subdivided.

And then we often need even more information about those subtypes to be able to decide ultimately what the best treatment plan is.

Overall, I would say about 15% of lung cancers are small cell. So, they’re more rare. And about 80% to 85% of lung cancers are non-small cell. And the most frequent kind of non-small cell lung cancer right now is adenocarcinoma. It didn’t used to be that way. Squamous cell carcinoma actually used to be more common, but in more recent years, adenocarcinoma is becoming more common. And interestingly, it’s also becoming more common in women.

Katherine:                  

Why is it becoming more common?

Dr. Bauman:              

So, part of that is we think that the demographics are changing somewhat in terms of lung cancers. So, the traditional risk factor, of course, of lung cancer is smoking, however, not all patients who have lung cancer were smokers. And we are seeing, in fact, more people being diagnosed with lung cancer who have never smoked or, in fact, are light smokers. And so, we think that that is likely playing a role.

Katherine:                  

Before we move into testing and staging, are there any common misconceptions you hear when you see new lung cancer patients for the first time?

Dr. Bauman:              

Sometimes I see people think, “Oh, lung cancer is a death sentence.” I certainly see people say that. But I think that one of the wonderful parts about being a lung cancer oncologist right now is our treatment options have really been revolutionized in the last 10 to 20 years. And we have more options right now, and we have a better understanding of this cancer, then we ever have had.

And so, I do think that I look with more optimism at this diagnosis, obviously, which is still quite devasting to patients and their families.

Katherine:                  

Right. Dr. Bauman, what testing should take place following a lung cancer diagnosis?

Dr. Bauman:              

So, this very much depends on how the cancer was diagnosed initially. So, some cancers are diagnosed on screening – lung cancer CTs right now – but other cancers are found incidentally, for other reasons. Or there are some that are diagnosed with a scan because somebody’s developing a symptom. So, in general, what I would say is that we always need good imaging essentially of the entire body when a lung cancer is suspected. Often this includes CAT scans, but this very commonly also includes a PET scan. And it will often include a brain MRI as well because the best way to the look at the brain is with an MRI.

Obviously, that can vary a little bit depending on what studies people have already had and what radiologic techniques are most accessible.

Katherine:                  

What about molecular testing and biopsies?

Dr. Bauman:              

So, sorry, I was sort of going on the imaging. But so, of course, you need full imaging. But the first thing you need to do that is paramount is establishing a histologic diagnosis, which goes to this initial thought of, “Is this small cell? Is this non-small cell? What is it?” So, if there is a lung mass that is suspected to be lung cancer, the first thing that happens is a biopsy as well as imaging. The imaging helps us establish, “Has this gone anywhere else? Does it involve the lymph nodes?” and helps us with the initial staging workup. Often there is a biopsy of the mass itself.

But there are often biopsies as well as the lymph nodes that are involved, in particular in the center of the chest called the mediastinum, because that also helps us establish the stage of the cancer.

And then if the cancer does look to have spread to somewhere else, we sometimes biopsy only that area or that area in addition to establish that it, in fact, has spread to a different place such as the liver or the bone. Once that biopsy is done, and once we know what type of lung cancer it is, then we also send more studies on the biopsy itself that help us determine what the best treatments are, in particular when we’re talking about what I call “systemic treatments.”

So, treatments that are going into the body and all over the body that involved immune therapies, chemotherapies, or targeted therapies. So, that extra testing that we do is something that’s called molecular testing.

It’s also called next generation sequencing. There are a bunch of different terminology that we use.

Katherine:                  

Okay. Dr. Bauman, would you walk us through how lung cancer is staged? And is it different for small cell vs. non-small cell lung cancer?

Dr. Bauman:              

Absolutely. So, as we talked about, the first thing that we do is we do get a biopsy to establish the diagnosis. The second piece is often if it looks to be a cancer that is only limited to the chest – so there is a mass and maybe some activities in lymph nodes that we’re concerned about but nowhere else – not only do we want to biopsy the mass itself, but we also want to know whether those lymph nodes are involved. So, those are biopsied because that will tell us the stage of the cancer. Staging very much depends on the size of the tumor itself, and then it also depends on, “Has it spread to lymph nodes in the center of the chest, and has it spread outside of the chest to other places?”

And so, early-stage lung cancers are just the primary cancer itself that has not spread anywhere else. More advanced stage lung cancers – things like Stage IIs and Stage III lung cancers – are ones that also involve the lymph nodes. And then a Stage IV lung cancer involves a lung cancer that has spread to somewhere outside of the body. And depending on the stage is really what determines the way we approach treatment for these patients.

Katherine:                  

And that is actually my next question. What do the results of these tests tell us about prognosis and treatment choices?

Dr. Bauman:              

So, they tell us stage, and, ultimately, prognosis and treatment choices are completely linked to the stage of a cancer. So, an early-stage lung cancer, often a Stage I or Stage II lung cancer, primarily our first choice of treatment is surgery. And if surgery is feasible for the patient – because, of course, it also depends on their other medical comorbidities and whether they can withstand a surgical resection of the cancer.

But usually, early-stage lung cancers we start with surgery. And then depending on what the pathology shows us, we sometimes include a course of chemotherapy afterwards to decrease the risk of the cancer coming back. More advanced lung cancers, so Stage III lung cancers, often involved what we call “multiple modalities.” So, for some patients we do a combination of chemotherapy and radiation in an attempt to cure the cancer. Often that is followed by immunotherapy. There are other patients who have Stage III lung cancer where we do chemotherapy and radiation and follow that with surgery.

So, it’s a very case-dependent decision algorithm, where it really depends on where the tumor is, the type of tumor, what the surgery would be, what the patient’s underlying health status is, etc.

And then if it is a Stage IV cancer, often we are really approaching this with systemic therapies. So, once a cancer has spread outside the lung, we traditionally think of this often as an incurable cancer. And there is a much more limited role of surgery and radiation, though I wouldn’t say that they’re absolutely off the table. Again, we sometimes think of these in sort of a case-by-case scenario. But in general, our approach for a Stage IV cancer is with some kind of systemic therapy. And that completely depends on all those special tests that we do that we were talking about that we send on that initial biopsy.

Katherine:                  

What about the significance of chromosomal abnormalities?

Dr. Bauman:              

So, what I would say is, what we do for, in particular, in the setting of a Stage IV lung cancer diagnosis right now, is we send molecular testing on the biopsy samples of these patients, in particular if they have adenocarcinoma.

And the reason we do this, what this gives us, is it tells us about the DNA of the tumor, and whether there are genes in the tumor that are changed in some way that are affecting the cancer’s ability to grow. And the reason that’s so important, is there are new treatments that really capitalize on those changes in the tumor to be able to stop the cancer from growing. The best example of this is for people who have something called an EGFR mutation.

And there are multiple different kinds of mutations. I call it “alphabet soup” because there are so many different letters and numbers.

But if people have an EGFR mutation that we think is one of the primary reasons they have this cancer growing, there are pills that target that EGFR protein that stop the cancer from growing. But if they don’t have that mutation, then those pills are not gonna do them any good.

And so, that is really where lung cancer treatment and diagnosis has become so personalized based on, of course the person itself, but also the characteristics of their tumor.

Katherine:                  

How can patients advocate for a precise lung cancer diagnosis, and why is that important?

Dr. Bauman:              

So, it’s, of course, important because it changes everything that they would be able to be offered in terms of treatment. And so, I think that it is important to, one, really understand what your lung cancer is. Right? What is the stage? What are the treatment options? And if there are treatment options that are not options for you, why is that? And is that because of special testing that has been done? So, I think it’s always important to ask, “Are there other special tests that I need to have on my tumor or on the biopsy?”

And if patients have questions about what options that they have, I think it’s important for them to understand why some options are theirs, and why other options may not be good options for them, and how their physician is making those decisions. Because I do think the more you understand about this, the better you can advocate for the types of treatments you can access.

Katherine:                  

Absolutely. We just covered some of this, but when deciding on a treatment approach with a patient, what do you take into account when making the decision?

Dr. Bauman:              

So, we take into account all of the things that we’ve been talking about. Of course, the No. 1 most important part is the histology, so what the kind of cancer is. No. 2 is what the stage is. And then No. 3 is the health characteristics of that patient.

Do they have underlying health problems that would impact the types of treatment that we would consider? And then ultimately, what are the goals of the patient? Right? So, of course, we have lots of different options, but it’s going to be important to partner with the patient and their family to understand where they are in their life and what kinds of treatments are feasible and acceptable to them.

Katherine:

What about treatment side effects? Do you take that into consideration?

Dr. Bauman:              

Absolutely. So, I always talk about my two primary goals for when I’m treating a patient is 1.) is to help them live as long as they can, and No. 2 is to help them live as well as they can. And I do think it is critical to understand the side effects of our treatments and how that may impact the patient and what their underlying issues are. So, for example, if I have a patient who comes to me who already has significant neuropathy because of a prior diagnosis of some kind, we need to strongly consider the types of treatments we’re using to consider one that doesn’t cause neuropathy.

Right? And often there are different treatments that we have where we can really consider the side effects and quality of life for patients in terms of what we have. I’ll also say that treatments and the supportive care that we have to offer have become better over time. So, yes, of course, we give toxic treatments, but we definitely are able to support people better with the side effects that they have to try to minimize those and make it as tolerable as we can.

Katherine:                  

What do you feel is the patient’s role in this decision, and how does shared decision making come into play?

Dr. Bauman:              

So, I think the patient’s role is, of course, this is their body and their lives. Right? I think that it very much is a decision that we make together. And of course, as a lung cancer expert, yes, we’re gonna talk about what we recommend as what we think is, sort of, the gold standard treatment.

But you can’t make anybody do anything. Right? You want people to be their own advocate in terms of their health. And so, I need to know how someone is feeling. I need to know if they’re having significant side effects from treatment. And so, I think the more they can tell me, the more they can ask questions, the more they can understand their illness, the better we can partner to be able to face it together.

Katherine:                  

Dr. Bauman, now that we’ve discussed factors that go into the treatment choice, would you walk us through the currently available lung cancer treatment approaches and who they might be right for?

Dr. Bauman:              

So, we talked about this a little bit, but I would say, so, certainly, the different types of lung cancer treatment depends on the stage of the cancer.

But in general, I’m thinking about the broad categories that we have. So, number 1 being surgery. So, surgery is absolutely one of the most important aspects of lung cancer treatment that we have and is one of the ways in which it is possible to cure lung cancer. So, surgery can happen both as an open surgery, but there are also more minimally invasive surgeries now that have also revolutionized the way they can do surgery in lung cancer. And so, that absolutely plays a very significant role in the treatment of lung cancer.

The second broad approach that I would say is that of radiation.  So, radiation also plays a very critical role in lung cancer, often more in advanced-stage disease for patients who have, for example, Stage III disease, where the treatment that we consider is a combination of chemotherapy and radiation also with curative intent.

So, the idea behind this is that it’s cancer that is still in the chest, but it has spread to the lymph nodes in the chest, and a combination of chemotherapy and radiation may still be able to cure patients of this cancer. And so, radiation also can play a critical role. And interestingly, in small cell – which we’ve spoken a little bit less about – radiation and chemotherapy play a very important role in small cell, and often surgery plays less of a roll in small cell. And so, our treatment approach using radiation is in both of these kinds of cancers, and often we’re doing a full course of radiation also in an attempt to cure the cancer for the patient.

The last, sort of, broad category of treatment that I would say is what I call “systemic treatments.” So, that is targeted treatment. That is chemotherapy. And that is immune therapy.

And what we use of those three types of treatments completely depends on the patient’s stage and more information about that patient’s tumor, in particular, the molecular testing as well as what we say is called PD-L1, which is a marker on the tumor that tells me about the responsiveness to immunotherapy.

Often, we use a combination of many of these treatments. So, there are patients who get surgery and then chemotherapy. There are patients who get chemotherapy and radiation and then surgery. And there are patients who get only what we call systemic therapies.

I will also say it’s important to note that for radiation, although there’s a proportion of people that we use radiation with curative intent for a long period of time – so, a six-week course of radiation – we also use radiation to help with symptom management if someone’s having a specific problem that’s causing them a symptom where radiation may help.

The classic example of that is pain. So, if they have a spot in the bone that is causing them a lot of pain, a short course of radiation to shrink that tumor where that is, can be very helpful. And so, radiation we can also use to help with palliation of symptoms. The other things that I’m not getting into significantly today, but are also there, are there are other types of procedures that have become more common where you can go in, for example, with an interventional radiologist and do an ablation of a tumor.

Our interventional pulmonologists also do significant amount of ability to access the lungs and the lymph nodes to be able to help with diagnosis, but they can also do something like a debulking procedure where they can get rid of some of the cancer to stop it from bleeding.

They can also stent open the cancer to help people breathe better. So, there are multiple different other team members who also are really critical to our patient’s care.

Katherine:                  

Yeah. How do clinical trials fit into the treatment plan?

Dr. Bauman:              

So, clinical trials are very important in all of our decision making. So, there are many different kinds of clinical trials, but clinical trials are where we are offering the newest potential treatment options for patients. And there are some clinical trials where it’s a brand-new drug that’s never been in a person before, but there are also clinical trials of drugs that we use from a different disease that has been effective, and now it has good evidence, potentially, in lung cancer, and so it’s being used in lung cancer. There are also trials of new combinations of treatments.

So, for example, one of the most recent, sort of, classic treatment-changing trials was a large trial where everybody who had chemotherapy and radiation for Stage III lung cancer, then received a year of immune therapy vs. not receiving immune therapy to see if that new treatment would help them live longer or would prolong their survival.

And in fact, that trial was very positive, and so it changed the way we treat Stage III lung cancer. So, again, these are just examples of types of clinical trials. But clinical trials are where we are finding out what may be the next best treatments for patients.

And so, when I’m thinking about a treatment approach to a patient, I’m incorporating all of the things that we talked about, but I’m also then thinking about, “Are there clinical trials that may also be relevant to them for their specific situation?” whether that is a clinical trial that involves surgery in some way, or whether that’s a clinical trial that involves a new drug, whether it’s a clinical trial that’s offering a new kind of supportive care.

So, there are lots of different kinds of clinical trials that may be relevant to patients.

Katherine:                  

Are there emerging approaches for treating lung cancer that patients should know about?

Dr. Bauman:              

So, absolutely. I think that there are so many clinical trials that are going on right now for all sorts of different lung cancers.

I think one of the amazing parts about lung cancer right now is how, as I said before, how personalized it has become, and how each individual, depending all of the different factors we talked about, what treatments are best for them. But it also depends on there also may be clinical trials that are specific for that person. And so, for example, if you have a new diagnosis of Stage IV cancer, and you have an EGFR mutation or an ALK mutation, you want to know about clinical trials that are specific to that population because for you, those are what are most relevant for you.

If you have a new diagnosis of a Stage III lung cancer, then you wanna know, “What are the clinical trial options for patients who have Stage III lung cancer?” And so, there are many clinical trials that are asking, sort of, the next best question of, “How can we improve the current standard of care?” And often there really are trials in each of these different areas. So, it’s not just a one-size-fits-all.

Katherine:                  

Some patients can be fearful when it comes to clinical trials. What would you say to someone who might be hesitant in participating in one?

Dr. Bauman:              

So, I very much understand that. I think any kind of treatment can be a scary thing. But I think, as I said before, I think the more that you can understand about your cancer and understand about the science and the research, it helps you then understand where the trial fits in terms of your treatment options.

I think that if you understand what to expect from the treatment that you’re getting, and then what the plan B and plan C could look like, I think that piece of it is also important. And you know, I think that one of the hardest parts about lung cancer right now is even though we have all of these new promising therapies and multiple new approved drugs, with a diagnosis of Stage IV lung cancer, most of the time the cancer learns to grow. And so, even though we have treatments that work really well, there will be a time for most people where the cancer starts to grow, and we need to think about, “Well, why is the cancer growing?”

And often, that is the setting where clinical trials are very relevant because clinical trials are often thinking about just that, “Well, why is the cancer becoming resistant? What is different about the cancer now? And is there some change that would make it relevant for you to do one specific trial over another specific trial?”

Katherine:                  

Well, and that leads us to treatment monitoring. Once a patient has started treatment, how do you know if it’s working?

Dr. Bauman:              

So, we do regular imaging. So, once you have a diagnosis of lung cancer, a CAT scanner will become your friend. In general, depending on what stage of lung cancer you have, you will have a bunch of imaging up front, and then once a treatment plan is put into place, after that treatment has either been completed or started, you will be monitored, in general, regularly for the lung cancer diagnosis. Now, after surgery, that will be for more for surveillance to make sure that the lung cancer doesn’t come back. But if it is more in the setting of a Stage IV lung cancer, then the imaging really helps us determine, “Is the treatment working or not?”

And so, after we start a treatment, usually anywhere between six and eight weeks, we repeat imaging to see, “Is this working? Is it smaller? Is it the same? Has it grown?”

And based on that imaging, and based on how the patient is doing with the treatment, we then decide, “Do we continue this treatment, or do we need to change to a new treatment?” And so, we regularly monitor the patient’s cancer through regular imaging.

Katherine:                  

Let’s talk about patient self-advocacy. Patients can sometimes feel like they’re bothering their healthcare team with their comments and questions. But why is it important for patients to speak up when it comes to their symptoms and their side effects?

Dr. Bauman:              

So, this, I would say, it’s a partnership. The bottom line is, and if I don’t know that something is going on, I can’t help to solve the problem. And if I don’t know about something, a new symptom that could be, potentially, majorly concerning, patients can also get really sick or even end up in life-threatening situations. And so, ignoring things or just hoping things will go away is not in a patient’s best interest.

I think that it is critical that patients are their own self-advocate. I think that I say that often, and I’ve already said that a couple of times on this, but we don’t know unless we’re hearing from them what’s going on. And so, it is so important for patients to keep us updated if they’re worried about something. Certainly, we see them very frequently, and so they can often tell us at their visits what’s going on. But overall, the in-between time is just as critical because it is often the treatments that we give can cause side effects at any time. And so, it is really important that we know about anything that’s going on and for patients to always give us a call.

I mean, that’s the bottom line is, is that if they’re worried about something, we need to know about it.

Katherine:                 

What supportive care options are there for patients who may have pain management difficulties or even emotional support?  Where do they start?

Dr. Bauman:              

So, there are often many different kinds of supportive care for patients. I would say that oncologists, of course, are one layer of supportive care. We do a lot of help with symptom management and often even pain management as well as coping and emotional support. However, there are also other people often within cancer centers that are also available to help. And this includes social workers. It also includes psychologists and psychiatrists.

And then the other thing that I think is really important to mention is that we know for patients who have lung cancer or an advanced lung cancer diagnosis, that integrating a palliative care team – a supportive and palliative care team – early into their diagnosis actually helps them live longer as well as better. They have better quality of life, and they have decreased problems with mood.

And so, we know that supportive care and palliative care, specifically in lung cancer, is particularly helpful for both patients and their caregivers. And so, it’s important for patients to also know that there is a whole team, that I think of as, sort of, an extra layer of support, that can help them with symptom management as well as with coping with the day-to-day of what can be a devastating diagnosis.

Katherine:                  

Yeah. That’s really great advice. To close, what would you like to leave patients with? Are you hopeful?

Dr. Bauman:              

So, I would say I am absolutely hopeful. I think that it is so important to know how many changes have happened in lung cancer in the last decades and how much more research is going on everyday to try to improve the care that we can deliver. And so, it’s a great time to be a lung cancer oncologist.

But we also have so much more work to be done.

Katherine:                  

Dr. Bauman, thank you so much for joining us today.

Dr. Bauman:              

Absolutely, my pleasure.

Katherine:                  

And thank you to our audience for joining us as well. Please fill out the survey that you’ll receive following the program. It helps us to plan future lung cancer programming. And thank you to all of our partners.

To learn more about lung cancer and to access tools to help you become a more proactive patient, visit PowerfulPatients.org. I’m Katherine Banwell. Thanks for joining us.

 

Key Next Steps After a Lung Cancer Diagnosis: Expert Advice

Key Next Steps After a Lung Cancer Diagnosis: Expert Advice from Patient Empowerment Network on Vimeo

Following a lung cancer diagnosis, the actions that a patient takes may impact their long-term care and treatment options. Dr. Erin Schenk, a lung cancer specialist, lists key steps a patient should consider post-diagnosis.

Dr. Erin Schenk is an assistant professor in the division of medical oncology at the University of Colorado Anschutz Medical Center. Learn more about Dr. Schenk and her lung cancer research here.

See More From the The Pro-Active Lung Cancer Patient Toolkit

Related Programs:

Diagnosed with Lung Cancer? Why You Should Seek a Second Opinion

Why You Should Consider a Clinical Trial for Lung Cancer Treatment

Diagnosed with Lung Cancer? An Expert Outlines Key Steps


Transcript:

Dr. Erin Schenk:

As a medical oncologist who takes care of lung cancer patients, I would recommend that if you or a loved one are diagnosed with lung cancer, going to your meeting with the cancer doctor report the surgeon or the radiation doctor with a couple of main questions to ask in order to better understand your diagnosis and the treatment options.

So, the first one is what stage and stage is a descriptor that we use that talks about how far the lung cancer has spread if it’s spread at all. And sometimes, this involves additional testing to give you the best, most accurate answer. Oftentimes, patients are diagnosed with scans, but what’s also – excuse me, scans of the chest, but what’s also really important is better understanding whether or not lymph nodes in the middle of the chest are also involved.

This can require either a PET scan or occasionally procedures where tissue, the lymph nodes biopsied, and tissue samples are taken to see if the lung cancer has spread to those lymph nodes. PET scans are also able to better tell us whether or not lung cancer has spread outside of the lungs. And additionally, and MRI of the head can often be a really critical piece of information to better understand whether or not the lung cancer has spread to the brain. Unfortunately, lung cancer is one of those cancers that can spread to the brain tissue.

So, the first piece of information and more tests might be needed, is stage.

The second piece of information that’s very important is what type of lung cancer, and sometimes, this occurs hand-in-hand with better understanding stage. Usually, this involves a biopsy, so a sample of the tissue needs to be taken and then looked at underneath a microscope by a pathologist who are doctors who help us identify which type of lung cancer it is that a patient has. And then the final thing to ask your care team or your doctor is do I need additional molecular testing?

Molecular testing is a critical piece of information in order for doctors like me to help take care of lung cancer patients. Molecular testing lets us know what role immunotherapy might play in your diagnosis. It also lets us know whether or not targeted therapy which are oral pills we sometimes call TKIs are appropriate for your disease and your stage. These pieces of information, so stage, what type of lung cancer, and if molecular testing is necessary, these are, I think, the three critical pieces that you need going forward to help your cancer doctor and team better formulate a plan that is right for you.

Finally, I’d like to add in that if you are in a situation where you would like a second opinion, or you would like to get more thorough answers, I would encourage you to look for an academic center or a large medical center that has specialists who focus in on lung cancer. We are often very happy to see patients and talk with them about their treatment plan if any other tests or evaluations are needed to help you feel confident in the plan that your doctors closer to home have put together. That’s it.

Why You Should Consider a Clinical Trial for Lung Cancer Treatment

Why You Should Consider a Clinical Trial for Lung Cancer Treatment from Patient Empowerment Network on Vimeo.

Dr. Erin Schenk, a lung cancer expert and researcher, explains why patients with lung cancer should consider a clinical trial and the role trials plays in clinical care.

Dr. Erin Schenk is an assistant professor in the division of medical oncology at the University of Colorado Anschutz Medical Center. Learn more about Dr. Schenk and her lung cancer research here.

See More From the The Pro-Active Lung Cancer Patient Toolkit

Related Programs:

Lung Cancer Treatment: What Is Immunotherapy?

What You Need to Know About Lung Cancer Research

New and Improved Lung Cancer Treatment Options


Transcript:

Dr. Erin Schenk:

We have a very active clinical trial practice in the lung cancer world for one reason alone, and that’s that while our current therapies are good, we can still do better. Lung cancer accounts for significant cancer-related deaths in the United States and the world. And we wanna work to try and improve how well patients do and also improve how many patients we are able to cure. Clinical trials can be at any step of your workup or treatment.

So, even patients with earlier-stage disease meaning lung cancer where we can resect it with surgery, there are a number of clinical trials going on right now to try to better improve the outcomes we see with our normal standards of care. So, whether you are having a lung cancer removed by surgery whether you’re receiving chemotherapy and radiation and immunotherapy whether your lung cancer has happened to spread outside of the lungs, there are clinical trials available at every step in the game.

And I would really encourage you to ask your cancer care team or your doctor about whether or not clinical trials might be available in your area. Because often, they can help identify new targets or other ways of trying to attack the vulnerabilities of your lung cancer.

If you are considering a clinical trial, there are a number of important questions to find out from the clinical trial team as well as your cancer care team. Some of the things are really practical, logistical questions and one of those is, “How often do I need to come to clinic? How many more schedule visits do I need?”

Usually, with clinical trials, upfront so before you get on the clinical trial or once you start receiving the clinical trial medicine or therapy, often there are more frequent visits in that initial time period. But after things are – after you’ve had several treatments with the trial medicine, often it becomes more standard of care meaning visiting once every three weeks for blood work and a visit with your team and then infusion.

So, it’s often a little more work up front, and then it gets back to the usual expectations of how often you have to be in our offices. So, I think those logistical concerns are very real because especially for larger institutions, sometimes, coming to our campuses can be a bit of a challenge. So, that would be one. I would recommend discussing logistics. Discussing with your team as to why they think this would be a trial for you is important.

Occasionally, we are able to screen for certain markers or certain things that are expressed on the cancer cells and then match you with clinical trials that try to target those specific molecules or proteins or flags that are on the surface of the cancer cell. So, oftentimes, we try to match patients up to a specific clinical trial, so better understanding why that one was recommended. And then I would ask your team to also discuss what are the side effects that have been noticed.

Often with these clinical trial medicines, we don’t have a lot of experience with how well patients do on these therapies. But sometimes, we can give you an idea in terms of what we expect and what we will watch closely for. So, I think logistics are important, why your doctor or your cancer team thinks this is a good trial for you, and then finally, what sort of side effects have been noticed as best we can tell with this new trial medicine.

Lung Cancer Treatment Advances: What are Antibody Drug Conjugates?

Lung Cancer Treatment Advances: What are Antibody Drug Conjugates? from Patient Empowerment Network on Vimeo.

 Dr. Erin Schenk, a lung cancer expert, discusses emerging research around antibody drug conjugates (ADC) and how this therapy works to treat patients with lung cancer.

Dr. Erin Schenk is an assistant professor in the division of medical oncology at the University of Colorado Anschutz Medical Center. Learn more about Dr. Schenk and her lung cancer research here.

See More From the The Pro-Active Lung Cancer Patient Toolkit

Related Programs:

Lung Cancer Treatment: What Is Immunotherapy?

Why You Should Consider a Clinical Trial for Lung Cancer Treatment

New and Improved Lung Cancer Treatment Options


Transcript:

Dr. Erin Schenk:

Some interesting research that’s coming to the forefront in the lung cancer field are using new medicines called antibody-drug conjugates. And so, these medicines, I think of as another type of targeted therapy. So, what happens is that cancer cells express certain proteins or certain flags on their surface that aren’t often found on other normal cells.

And what these ADC drugs are able to do is that they’re able to seek the cells that express certain flags, and then deliver a chemotherapy payload directly to those cancer cells. One trial from the recent ASCO annual meeting from this year, 2020, was looking at an ADC that targeted HER2 which can sometimes be over-expressed by lung cancer cells.

And they had good initial reports in terms of patients being able to have disease control for some time and minimal side effects.

So, I think in general the idea of ADCs or looking for surface markers on the cancer cells to try to in a more targeted fashion deliver the chemotherapy payload, I think this is a really exciting area of investigation as well as a new potential therapy for our patients with lung cancer.

Lung Cancer Treatment: What Is Immunotherapy?

Lung Cancer Treatment: What Is Immunotherapy? from Patient Empowerment Network on Vimeo.

Dr. Erin Schenk, a lung cancer specialist, provides an in-depth explanation of what immunotherapy is, and its role in treating lung cancer.

Dr. Erin Schenk is an assistant professor in the division of medical oncology at the University of Colorado Anschutz Medical Center. Learn more about Dr. Schenk and her lung cancer research here.

See More From the The Pro-Active Lung Cancer Patient Toolkit

Related Programs:

Lung Cancer Treatment Advances: What are Antibody Drug Conjugates?

Diagnosed with Lung Cancer? An Expert Outlines Key Steps

What You Need to Know About Lung Cancer Research


Transcript:

Dr. Erin Schenk:

Immunotherapies are powerful new medicines that we available to us as medical oncologists and especially within patients with lung cancer. Immunotherapies are medicines that help to activate your body’s own defenses to go seek out and kill the cancer cells.

So, immunotherapies prevent stop signs on the cancer cells.

What happens is that as the cancer cells grow and as they become more resistant to your body’s natural defenses, it puts up certain stop signs. And these stop signs prevent your body’s immune system from attacking them. Immunotherapies, basically, it cuts off that stop sign so that your immune cells can go and attack the cancer cells.

Immunotherapies play a role in the treatment of many lung cancer patients, nearly all. So, immunotherapy has recently found a role in curative-intent therapy meaning we give these treatments to you to try and cure you of your cancer completely. And that’s in patients who have advanced lung cancer that they can’t surgically resect, or it’s not safe or feasible to cut out, but it hasn’t spread to anywhere else in the body.

So, often, those patients receive chemotherapy and radiation together, and then they receive immunotherapy for a year. So, that’s one set of patients we treat with immunotherapy. And then most other patients with lung cancers especially metastatic lung cancer or cancer that’s spread elsewhere in the body, immunotherapy plays a role in treatment regardless of what type of lung cancer that you have with a couple exceptions which I’ll get to.

So, first, if patients have small cell lung cancer that has spread in other parts of the body, immunotherapy’s an important part of the initial treatment regimen combined with chemotherapy. That’s one of the first advances in decades for patients with small-cell lung cancer. The other situation where we use immunotherapy in metastatic disease is with non-small cell lung cancer. And here we have data and studies to support the use of immunotherapy either alone or in combination with chemotherapy medicines.

And the determinate, there’s a number of factors we use to help determine whether a patient can get immunotherapy alone or immunotherapy in combination with chemotherapy, that’s based on PD-L1 status. So, that’s the immunotherapy marker that we look for on cancer cells. If the PD-L1 status is high enough on the cancer cells, we can discuss with our patients using immunotherapy alone.

If that PD-L1 marker on the cancer cells is not high, then we can use immunotherapy plus chemotherapy in our patients. One area where we’re still not quite sure how to best use immunotherapy are in patients with driver mutations or some of these mutations that we look for with special molecular testing like EGFR, ALK fusions, ROS1 fusions.

What we’ve been learning over time is that immunotherapy alone does not appear to help patients do better for longer. We’ve also been learning through clinical trials that immunotherapy combined with TKIs which is the targeted therapy patients receive if they have one of these driver mutations, that does not appear to be effective or safe from some of these early clinical trials.

There’s some debate right now amongst my national/international colleagues as to whether or not giving immunotherapy plus chemotherapy is the right choice for these patients after TKIs or targeted therapies stop working. It’s really up to the discussions that you have with your doctor and whether or not they think immunotherapy and chemotherapy could be right in that situation.

What You Need to Know About Lung Cancer Research

What You Need to Know About Lung Cancer Research from Patient Empowerment Network on Vimeo.

As a lung cancer patient, why should you stay informed about research? Expert Dr. Heather Wakelee reviews what patients need to know.

Heather Wakelee, MD is Professor of Medicine in the Division of Oncology at Stanford University. More about this expert here.

See More From the The Pro-Active Lung Cancer Patient Toolkit

Related Programs:

Trustworthy Resources to Help You Learn More About Lung Cancer

New and Improved Lung Cancer Treatment  Options

Diagnosed with Lung Cancer? Why You Should Seek A Second Opinion


Subscribe to stay up-to-date in the latest information in Lung Cancer research

* indicates required



<script><script>


Transcript:

Dr. Wakelee:

So, there’s so much happening in lung cancer research now, it is hard to really narrow it down to one thing to be specifically excited about. Where we have made so much progress in particular is with target treatments, and also with immune therapy. So, when we think about the targeted treatments, it’s only been about 15 years since we first learned about drugs that would specifically target the EGFR gene mutations.

And when we found a tumor with an EGFR gene mutation, we then had a medication we could give that would work better than chemo. And now we have five EGFR drugs available in the US. And then we found out about this ALK gene mutation that happen in some tumors. Now we have five drugs that work there. And the with ROS1, that was found, and now we’ve got four drugs that work there that are approved.

And it seems that we keep learning about more and more mutations, so those are mutations called NTRK and BRAF. And with all of those, we now have drug treatments, so it’s been very, very rapid discovery of specific gene mutations and drugs that work for that. And I think we’re continuing to see new targets being identified and new drugs being found.

And also, when those drugs stop working, better understanding why and what we can do to help them work longer, or what we can give next. So, that’s a very active area of research that’s exciting. And then we have the immune therapy. So, the ones that are available so far are drugs that block either PD-1 or PD-L1, and that's one of the really important stop signals for the immune system.

And tumors can use that stop signal to block an immune reaction to a tumor. But if you block that stop signal then the immune system can attack the cancer. So, that's really important, these PD-1, PD-L1 drugs.

We also know about another stop signal called CTLA-4, and there’re drugs that block that as well. And now, where there’s a ton of research is in trying to work with other parts of the immune system, other either pro-immune or anti-immune signals, and changing those in a way where we can improve the ability of the immune system to find the cancer cells and attack the cancer cells.

So, there are many, many studies being done with drugs, and especially in combinations, trying to get that response against the cancer from the immune system to be even stronger. And that’s, I think, where we’re making the most exciting headway now.

New and Improved Lung Cancer Treatment Options

New and Improved Lung Cancer Treatment Options from Patient Empowerment Network on Vimeo.

Are there new lung cancer treatment options that you should know about? Expert Dr. Heather Wakelee reviews the latest research. Looking for more information? Download the Find Your Voice Resource Guide here.

Heather Wakelee, MD is Professor of Medicine in the Division of Oncology at Stanford University. More about this expert here.

See More From the The Pro-Active Lung Cancer Patient Toolkit

Related Programs:

Lung Cancer Treatment Decisions: Which Path is Best for You?

What You Need to Know About Lung Cancer Research

Critical Questions to Ask Your Lung Cancer Doctor


Transcript:

Dr. Wakelee:

So, the treatment of lung cancer has been changing very, very quickly. We’ve had a lot of new options that have become available in the last few years, and there’re new ones coming along all the time. When I started treating lung cancer, which was a number of years ago, we were able to treat and help people.

But our only real option when the cancer was metastatic was chemotherapy. Chemotherapy is still an important part of treatment for many people, but now we have other options. So, starting about 15 years ago, people were able to identify that some tumors had specific genetic changes. We also call these molecular changes, or gene mutations, or just mutations in the tumor. They have a lot of different names.

But when we do find them, these are things like EGFR or ALK or ROS or BRAF or MET, we actually have different treatment options that only work for tumors that have those specific genetic changes, and don’t work in tumors that don’t have those. So, when we talk about genetic changes a lot of people think, “Oh, that’s something that I’ve inherited.”

These are not things that are inherited. This is not something that’s in the whole person. It’s just in the tumor. So, it’s a mutation that happened in the DNA of the cell, and that cell then became the cancer. And depending on what that mutation or mutations are, we still can have chemotherapy, and that can work.

But for specific ones, and specifically EGFR, ALK, ROS, BRAF, we know that there are pill drugs and oral medication that actually is gonna be better than chemo, at least for a period of time, if a cancer has that specific mutation.

So, it’s really, really important to figure that out. It’s not something a doctor can sort out just by looking at the patient or looking at the tumor under the microscope. We have to do special testing, looking at the tumor DNA.

And we now have ways of looking for those mutations, not just in the tumor tissue, but also sometimes with blood. So, we can draw a blood test and look for those as well when there’s a tumor that’s shedding the DNA. So, it’s really important to think about that. And we now have a whole host of medications that we can offer people when we the find these mutations that we didn’t used to have, even a few years ago.

And, actually, if you think back over the last five years, we’ve had new drugs approved, a few of them every year, for these specific gene mutation tumors, so that’s really, really exciting. The other thing that’s changed dramatically just in the last five years is what we call immune therapy.

So, when we think about the different types of treatment, chemotherapy works by poisoning DNA. And in order to make a new cell, you have to make new DNA. Tumors are doing that more than a lot of normal tissue, and so we’re able to give chemotherapy and specifically hurt tumors and not the rest of the person very much.

With the targeted treatments where we find a gene target and where there’s a gene mutation in a tumor, those are medications that specifically hit that altered gene, that altered protein made by the gene. And then they work really, really well. What immune therapy does is it actually changes the way your body’s own immune system interacts with the tumor. So, we have a lot of types of immune cells, but the ones that are involved in really fighting the cancer directly are called T cells.

And so, normally, a T cell would recognize something that’s foreign like an abnormal-looking cell that’s a cancer, and attack it. But we have a lot of different systems in our body that stop the T cells from recognizing normal tissue and attacking it.

And one of the best systems for that is something called PD-1 and PD-L1. And so, if you have a T cell and it sees a PD-L1 signal on tissue, it assumes that that tissue was normal tissue and it doesn’t attack. But if you can hide that PD-L1 signal, then if it’s a T cell, a part of the immune system comes in and doesn’t see the PD-L1, it doesn’t get the stop signal. It’s not told to not attack. So, it could attack the tumor better.

And I’m not describing it well because it’s so complicated. There are a lot of different factors that help a T cell know whether to attack or not to attack. But, again, one of these key stop signals is the PD-1, PD-L1 interaction. And so, scientists were able to develop medications that can block PD-1 or PD-L1. And when those medications are in the body, if a tumor is using that particular stop signal as a way to hide from the immune system, when you give the medication that blocks it then the tumor is no longer hiding.

And then the immune system, those T cells, can come in and attack. So, these immune treatments, and there are now a lot, and so these are drugs, like pembrolizumab, also called Keytruda; nivolumab, which also called Opdivo; durvalumab, which is called IMFINZI. And there are many, many others. Those medications have now been shown to really, really help to fight cancer, particularly when the tumor is using that PD-L1 signal. But they can also be combined with chemotherapy and then they work even if there’s not a lot of PD-L1 in the tumor. So, again, it’s a very complex story.

But where we’ve seen dramatic improvements in treatment is we have targeted treatments when the genes are – there are specific genes mutating in tumors. We have immune therapy, which worked for a lot of other people. And sometimes when there’s also gene mutation, but not always, we still have chemotherapy. And then there’s ongoing research with a lot of different medications. Many of them are focusing on better ways to get the immune system to work against cancers beyond what we can already do.

Being Empowered: The Benefits of Learning About Your Lung Cancer

The Benefits of Learning About Your Lung Cancer from Patient Empowerment Network on Vimeo.

As a lung cancer patient, why should you stay informed about research? Expert Dr. Heather Wakelee provides her advice. Find your voice with the Pro-Active Patient Toolkit Resource Guide, available here.

Heather Wakelee, MD is Professor of Medicine in the Division of Oncology at Stanford University. More about this expert here.

See More From the The Pro-Active Lung Cancer Patient Toolkit

Related Programs:

Diagnosed with Lung Cancer? An Expert Outlines Key Steps

Trustworthy Resources to Help You Learn More About Lung Cancer

Diagnosed with Lung Cancer? Why You Should Seek A Second Opinion


Transcript:

Dr. Wakelee:

So, as a patient living with lung cancer, you have many options today that you wouldn’t have had 5, 10, 15 years ago, which is wonderful.

Because things are changing so quickly, it’s very hard for physicians and other care providers to keep up with all of the latest information. It’s especially hard if you are seeing an oncologist who not only has to keep up with everything that’s happening in lung cancer, but also everything that’s happening in breast cancer, and colon cancer, and melanoma, and so many other diseases.

And so, while everybody does their best to know the latest and greatest in research, and all of the new drug approvals, sometime that’s just possible. So, as a patient, you wanna make sure that you, focused on your particular disease, are up-to-date on what you can possibly know about the best ways to treat your disease, so you can talk to your physician and make sure that he or she also knows about those, and is using that latest information to help you get the best possible care.

There’s also a lot of ongoing clinical trials. And being able to ask about those and know what may or may not make sense for you, is also a reasonable thing to be able to talk with your doctor about.

And sometimes that involves continuing your care with your doctor, but also getting another opinion, particularly at a research center where they might have access to more trials, new drugs, some of which might be better than what’s available, and some of which might not be. But without talking to people about that, you’re not gonna be able to know that.

And that’s why it’s really important to do what you can or your family can do to be educated and know what is going on in the field of lung cancer, so you can get the best possible care.

The Empowered Lung Cancer Thriver and Expert Chat

The Empowered Lung Cancer Thriver and Expert Chat from Patient Empowerment Network on Vimeo.


Transcript:

Laura Levaas:

Hello, and welcome to this Patient Empowerment Network program, the empowered cancer survivor and expert chats. I’m your host, Laura Levaas, the lung cancer community manager for Patient Power, and a two-year survivor and thriver of lung cancer. This program is produced by Patient Power. We thank Celgene Corporation, Novartis, and Pfizer for their financial contributions to this program. They don’t have editorial control, but we do really appreciate them helping us make this program happen.

So, our guest today is Dr. Ross Camidge, the Director of Thoracic Oncology at the University of Colorado here in Denver. He’s also one of the top doctors in the U.S. for the very type of lung cancer that I have. It’s a rare mutation called ALK positive. And hopefully he can talk about that a little bit more later.

Dr. Ross Camidge:

We can talk about that until the cows come home.

Laura Levaas:

That’s good. Well, I’m excited to be interviewing somebody who is in the same town as me. So, you’re right down the road.

Dr. Ross Camidge:

Yeah, and we’re doing it virtually. Isn’t that crazy?

Laura Levaas:

It is crazy. So, we’re both in Denver, but we’re both online. So, I hope you’re having a good day. And thank you for joining us. So, can you estimate how many lung cancer patients you’ve worked with during your career?

Dr. Ross Camidge:

More than 1,000, I would have thought. So, I tend to see about 30 people a week, of whom about two or three of them are new each week. And then you can do the math. And then I’ve been here…it’ll be 15 years in October. So, someone really clever with a calculator can do that calculation, but it’s several thousand.

Laura Levaas:

That’s a lot.

Dr. Ross Camidge:

Yep.

Laura Levaas:

Is there a case that stands out to you in your career? Maybe somebody who beat the odds of their prognosis, or somebody that had a very interesting or unusual case?

Dr. Ross Camidge:

Well, you know, it’s funny. I mean, there are lots of people who I’ve looked after who’ve inspired me in different ways. But the ones that I keep thinking about the young patients who were diagnosed before we knew about all these molecular sub-types of lung cancer.

And I remember one young guy. He was 21 years old. He was really into skateboarding and art. And his parents were busy getting a divorce at the time. And it was a total disaster to have a diagnosis of lung cancer, and he’s stuck in the middle. And his disease was incredibly aggressive, and he didn’t survive very long. And somewhere in me, it’s like, well, he must have had something. He must have had ALK; he must have had ROS1.

And these things weren’t even described at the time. And part of life is about timing. So, nobody wants to have lung cancer. But it’s a much better time to have lung cancer now than it was last year, and certainly last decade.

Laura Levaas:

Right. So, there is hope for people who are diagnosed now?

Dr. Ross Camidge:

Well, I mean, I think that the best example of that is, people who now have Stage 4 lung cancer, the questions they have to ask are, “Shall I go for promotion in my job? Shall I go on this fun vacation? Am I gonna marry this person?” The same things that we all struggle with before a diagnosis of lung cancer. Because there used to come a time when you got a diagnosis of lung cancer, and the same conversation at least that the doctor was concerned was, “You’re about to drop down dead.” We phrased it differently, but you get the drift.

And now, those are completely separated by an unspecified amount of time, in the same way that we’re born and we die at some point in the future, and we don’t quite know when that’s gonna be. And so, we don’t have the two things – “Hi! Mrs. Jones! You’ve got a bouncing boy and they’re about to drop down dead.” Now, they’re separated by life. And we are gradually increasing the distance between those two events.

Laura Levaas:

I think that’s amazing. And this is a good segue, actually, for me to tell a little bit about my story. I don’t wanna get too far into the weeds. But my story, I think it was unique because I had a threemonth prognosis, basically, by the time they got a hold of me. I’d been misdiagnosed for about a year, which is pretty common, I think, with –

Dr. Ross Camidge:

Yeah.

Laura Levaas:

– lung cancer. You know, allergy symptoms, some migraine symptoms. And mine was actually caught, oddly enough, during a breast cancer screening. Because my mother is a breast cancer survivor, and she was diagnosed very young. So, my doctors have always been really proactive about that. But my original prognosis was three months. And that’s before they knew that I was ALK positive. So –

Dr. Ross Camidge:

So, who told you that you had three months?

Laura Levaas:

It was –

Dr. Ross Camidge:

That’s what drives me crazy, some well-meaning person in the emergency room.

Laura Levaas:

Yes. And I think it’s because when they discovered what I had, I had 50 brain mets and 50 spine mets, and my brain was swelling. And they were telling my family, “We’ve gotta get her into whole-brain radiation right away.”

We found out about two weeks later that I was ALK positive. So, they stopped the radiation, and I went right into taking Alectinib, which is a newer drug. And it was approved by the FDA I think about three months after I started taking it as first line for ALK.

Dr. Ross Camidge:

It’s all about timing.

Laura Levaas:

And then it stopped – yeah. Yeah. So, it’s kind of – I feel a bit like a champion. Because they said, “Well, you have three months.” And that can be a real bummer. And it’s a real shock to friends and family and my boyfriend at the time, who’s no longer. But here I am, 26 months later. And I feel great. And nobody ever thinks that I’m sick. They’re always shocked to find out that I have lung cancer. So –

Dr. Ross Camidge:

I think you’ve done great. And you’re still doing great.

Laura Levaas:

Thank you. And let me explain to our audience how I met you. One of the things that helped me have a positive outlook on being diagnosed with lung cancer is, No. 1, because I have this mutation, there was a targeted therapy available to me. And so, within six months, all of the cancer ground to a halt.

And I was basically able to resume most of my normal activities. I could drive again. I could go out to eat. I could do some normal things. But a friend of mine told me that there was a Facebook group for my specific type of cancer. And it was so valuable, and it helped me sort of like find my people. I refer to them affectionately as mutants because we’re all mutants together. But we share information. And they told me about your second opinion program, which I hope is okay to talk about on –

Dr. Ross Camidge:

Sure.

Laura Levaas:

– this program. But that’s how I found out about you. And you’re now my oncologist. And I’m in a Phase 2 clinical trial for a drug that’s new to me. And I’m very excited about that.

Dr. Ross Camidge:

You haven’t started it yet, have you?

Laura Levaas:

I have. I started it last week.

Dr. Ross Camidge:

Oh, you started last week, didn’t you?

Laura Levaas:

I did. I did. The first couple days, I felt weird. But now, I feel great. So, for those –

Dr. Ross Camidge:

Yeah, that’s fantastic.

Laura Levaas:

– that are watching, just know I do think having a positive attitude will help you through those really tough times when you’re feeling low. Reach out to your sub-group. Reach out to the people who have what you have. Because they’ve been walking that path, and they can help you.

Dr. Ross Camidge:

I mean, I think that one of the things is – I mean, it’s the same like when doctors talk to doctors. You can do the shorthand. You don’t have to explain what you’ve got and what it means. You don’t have to explain to me that you weren’t a smoker. You can just sort of jump in and say, look, this is the stuff that’s happening with me. And they understand.

Laura Levaas:

Absolutely. Absolutely. So, I am going to ask you a couple of quick questions. And then we got a lot of audience questions for you. So, I hope you’re ready.

Dr. Ross Camidge:

Yep. Bring it on.

Laura Levaas:

Lots of really good questions. So, before we transition into those, I wanted to ask whether you have noticed a mindset shift? You mentioned right at the beginning that this is the best time to be diagnosed with lung cancer because there are options. But are you noticing a mind shift in your patients?

Dr. Ross Camidge:

Yeah, I mean, I think there is. I mean, I think lung cancer has gone from being – or let me rephrase that. Certain sub-groups of lung cancer has gone from being this kind of embarrassing thing, that you were sort of hidden in a closet, and nobody knew a lung cancer survivor because they didn’t exist – to now, I can show a room full of people and you can’t pick out who’s the lung cancer patient and who’s their significant other in the picture because everybody looks the same. And that, to me, is huge success.

So, I mean, one of the things we did last year – and I may have shown you the picture that we have up in the clinic – is we actually had a survivors’ celebration.

Laura Levaas:

Awesome.

Dr. Ross Camidge:

And to get your invite, you had to be at least five years out from your diagnosis. And we invited 400 people. Now, to be honest, we messed up the timing, and we sent the invites out about two weeks late. But we still had about 100 people turn up –

Laura Levaas:

That’s great.

Dr. Ross Camidge:

– which was pretty awesome. And we took a big picture. And it’s framed and sitting up in the clinic, for the simple reason that when you’re first diagnosed, you know these people exist, but you don’t believe they’re real. And I wanted to be able to come outside and say, “See that guy there? Well, he’s 10 years out. And look, he still looks fine, and he’s leading a normal life.”

So, I don’t mean everybody’s gonna do that. But it’s gone from being this fantasy – I might win the lottery – to, well, I might graduate from high school. I mean, it becomes a much more realizable dream.

Laura Levaas:

Right. Well, what questions do you think patients should be asking when they’re first diagnosed? They go to the doctor. They’re like, “You have lung cancer.” What should a patient ask?

Dr. Ross Camidge:

Well, some of the basics are, what’s the stage of the cancer? How far has it spread around the body? So, usually, at least in the USA, people are getting a PET scan and an MRI of their brain.That’s the kind of standard bread and butter. I mean, 10 year ago, probably the most common thing I would encounter in the second opinion is somebody who wouldn’t have scanned the brain. They were waiting until someone had symptoms before they scanned it, which was like, well, you’ve lost a few neurons by then.

Now, probably the big thing is, have they done molecular testing? And I think the education has been, that’s not a uniform box. If you find something, that’s great. But if somebody says, “Well, you don’t have a mutation,” the next question is, “Well, what have you looked for?” Because if you haven’t looked for A, B, and C, you don’t know that that’s not there. So, the things that we test for have become more expansive.

And then the last one – and it’s hard not to say this without sounding like a complete jerk, but I’m going to do it anyway – is that the disease has become super complex and super specialized. And you don’t have to have all of your treatment with a thoracic specialist, but you should have a relatively early appointment with a thoracic specialist to just check that you’re on the right path.

Laura Levaas:

Good. That’s –

Dr. Ross Camidge:

Those are the three things.

Laura Levaas:

Okay. Those are really, really good things to ask. I wanted to ask also how long you’ve been involved in lung cancer clinical trials in the development of new medicines?

Dr. Ross Camidge:

Well, I’ve been here, as I said, nearly 15 years. I trained before that amongst other places in Edinburg, in Scotland, which is where I did most of my training. And that’s where I first encountered lung cancer patients. And it was actually probably the very first – so, you were taken round to different centers in your training. And I landed in lung cancer. And I really liked the patients. And I kind of felt that they were … they were very undemanding. Often, many of them had smoked, and they were kind of feeling a little embarrassed. And so, they made you want to step towards them because they were kind of stepping away from you. And I also felt that it was kind of poised for a breakthrough. So, that was kind of how I got involved.

And then since I’ve been here, when I first arrived in Colorado, it was pretty well known for lung cancer. But it had not a huge clinical program. I think when I arrived, they put nine patients a year on clinical trials. And within a few years, we were putting more than 100 on. So, I really helped to build that. And then with my colleagues here, we’ve been able to build the program.

Laura Levaas:

What’s the best advice you can give someone who is newly diagnosed with cancer?

Dr. Ross Camidge:

Well, the first thing is, for those of you who’ve seen The Hitchhiker’s Guide to the Galaxy, the first thing is, don’t panic.

Laura Levaas:

That’s good advice. That’s good advice.

Dr. Ross Camidge:

The thing is, what you do is, you get diagnosed. And there’s a period of time where the room – you just can’t hear anything, and you feel distant from it. And what you’ve gotta do is, you – absolutely, you can wallow in self-pity for a period of time. And then you have to get up and move on. And that’s when you say, okay, this is a problem like anything else in life. And I will figure out the best of all possible solutions.

Laura Levaas:

Absolutely. Conversely, Terry wanted to know, what is the biggest mistake patients make in decisionmaking about treatment?

Dr. Ross Camidge:

Well, listening to people who say you only have three months to live.

Laura Levaas:

Yeah. That’s not good.

Dr. Ross Camidge:

Yeah. I don’t know what – I think perhaps believing that everything you see about cancer on the TV – which is everyone who’s bald and throwing up – must automatically apply to you. Or that that person down the street who died from a brain tumor automatically applies to you. I mean, so, cancer isn’t cancer. There are different diseases. And until you can find out, like you said, your peer group, you don’t know what the truth will be for you. And then you’re still gonna make your own rules up anyway.

Laura Levaas:

That’s true. That’s true. And I was thinking the other day, my needs when I was first diagnosed are very different than what they are now a few years later. Because in the beginning, I didn’t have coping skills. And I just didn’t know what to do. But you do develop them over time. And I remember a woman telling me, “Oh, you’ll figure it out.” And that made me really mad. But I see the wisdom –

Dr. Ross Camidge:

Yeah.

Laura Levaas:

Yeah. I see the wisdom in that now because you do figure it out over time.

Dr. Ross Camidge:

But how did you figure it out? How did you develop those coping skills? … Am I allowed to ask you questions?

Laura Levaas:

Oh, absolutely! Yeah, I think it was helpful, oddly enough, that I wasn’t allowed to drive and that I was in such a bad state. Because it allowed me to sort of withdraw from society for a while, withdraw from my work, withdraw from relationship drama. Because I ultimately ended up breaking up with my partner because he wasn’t capable of handling what I was going through, and he wasn’t supportive. So, all of the things that were familiar to me, like my job, my apartment, I retreated from all of that. And at the time, it sucked. But now, I’m like, that allowed me to have a perspective that was removed from everything. And I just –

Dr. Ross Camidge:

How old was your son at the time when you were diagnosed?

Laura Levaas:

Four.

Dr. Ross Camidge:

So, I mean, there’s an element of where you can withdraw from society, but you’ve got a 4-year-old.

Laura Levaas:

That’s right.

Dr. Ross Camidge:

So, how do you deal with that?

Laura Levaas:

Yeah. Well, I ended up moving in with my sister. Because at that time, I couldn’t drive, and I couldn’t take care of myself. So, I did rely really heavily on her. And their daughter is the same age as my son. So, they were going to school together. I relied very heavily on them, and I’m so thankful for that because that allowed me to just rest and heal. Because in the beginning – not to get too far in the weeds – but I couldn’t watch TV. I couldn’t be on my phone. I couldn’t be on the computer. Just no attention span whatsoever because of whole brain, I think. So, retreating from everything actually was good for me. And I’m also kind of a loner. So, I liked it, being alone too, oddly enough.

Good question.

I have another question from Christine C. She says, how long do you think it will take until lung cancer will be a chronically managed disease?

Dr. Ross Camidge:

Well, I think for some people, it already is. So, I now have 10-year Stage 4 survivors who are still alive and still thriving, to use your word. So, for those people, it’s a reality. And I don’t know – as I said, people will make their own rules – I don’t know how long they will go. I mean, I honestly do not know how long I can control their disease. You just have to stay alive and in the game and hope that breakthroughs will happen.

Now, then the challenge is, okay, “Well, what about me? I don’t have ALK. I don’t have – whatever.” And you go, okay, well, so, everyone – we have to try and replicate the success of the ALK positive population with all of the other sub-types of lung cancer or the ones that don’t even have a label yet. And so, there’s plenty of work to do.

Laura Levaas:

Definitely. Leslie wants to know, what do you see in the near future for treatment of lung cancer? And she lists a couple of things like a fourth generation TKI, immunotherapy – a couple of things that I don’t even know what they are, SHP2, Protex, anything else?

Dr. Ross Camidge:

Yeah. I don’t know what Protex is, but I know what SHP2 is. So, first of all, so, the concept of the fourth generation TKI, I mean, I assume that’s because we have a third generation TKI and therefore, the next one must be called the fourth generation. So, I don’t know that the generations of TKI is going to be the immediate solution.

If I had to say what I think the future is gonna hold, there’s a couple of things. So, one is I think we can – and we’ll use ALK as an example. But really, ALK is this model system that everybody else with lung cancer might like to replicate. So, we’re really good at developing drugs that are great at suppressing one particular pathway that is driving some people’s cancer.

But the cancer still grows eventually. Usually now, with some of the drugs – like the one you’re on and the third-generation drug – is that they’re not growing because they’re turning back on the same pathway. What they’re doing is, they’re growing through some other pathway coming up. So, finding these other pathways, these so-called second drivers, is going to lead to rational combinations of drugs. That’s one way.

The other thing which is kind of the elephant in the room is, well we have these drugs. You have these fantastic responses on the scans. But if you stop the drug, the cancer starts to grow. And if you go back on the drug a week later, it’ll shrink down. So, you clearly haven’t killed all of the cells which are even sensitive to that drug. So, until we can address why we can’t get 100 percent cell kill – that’s a technical term – we’re never gonna deal with the elephant in the room, which is, why can’t we actually cure people?

And that’s a very different situation from, why does the cancer grow three years later? The question is, why, when you walk through the door and you have a great response on the scan, if you had a magic microscope, why is there still one in 1,000 cells left? And that to me is actually the horizon we need to look for.

Laura Levaas:

Okay. Okay. That’s a great answer. A few more questions. Will R. wants to know about a lung cancer vaccine.

Dr. Ross Camidge:

Well, so, you could view that in a couple ways. So, if you think about how we use vaccines, we use them when we don’t have a disease to prevent us from getting that disease. We don’t really use a vaccine when we’ve already got the disease. So, if you’ve got chicken pox, I don’t vaccinate you for chicken pox. I treat the chicken pox. And so, lots of people are trying to develop vaccines, but they’re giving them in the wrong way. They’re giving them to somebody with an established lung cancer, and then they’re surprised that it doesn’t work. But that’s not what vaccines do.

The question is, could we find a way of saying, well, these are the people who are at highest risk for lung cancer, and give them something before they have lung cancer to reduce their risk? And the answer is, maybe. But if you can imagine, that’s a really difficult study to do. It would take years and years and years.

I’ve just come back from something called the World Conference on Lung Cancer, which was in Barcelona – tough life – but the biggest breakthrough there wasn’t about treatment. It was about a study that was actually done in Scotland about screening people. So, we’re pretty familiar with, if you smoke this much, you meet a certain criteria, and you go get a CT scan. But that’s no good if you’re not a smoker. You don’t meet those criteria.

So, they still have to look at a blood test. And they can show that that particular blood test, it wasn’t definitive. It wasn’t, you’re gonna get cancer or not. But it bumped up your risk if you are positive on the blood test to then make that screening even more effective.

Laura Levaas:

That’s awesome.

Dr. Ross Camidge:

And they had some evidence – loose evidence – that it might even work in never smokers. And I think that’s what will come in the future too. And then what if you identify this high-risk group? I’m getting all excited now – all that higher-risk group? Maybe then say, okay, well, why are they at higher risk? Is that the group we give a vaccine to?

Laura Levaas:

Right. And then how would you identify a non-smoker, high-risk group? Can you?

Dr. Ross Camidge:

Yeah, well, so, it’s a work in progress. So, one of the things that they’re starting to do is find some of the mutations which are driving people’s cancer in the blood. Okay? So, the problem is that the sensitivity of the test isn’t very good. So, you can find it when somebody has lots of cancer in their body. But to get the screening, you want to find it when there’s one little ditzel in your lung. So, you have to really turn up the sensitivity.

And I think that’s where the field is kinda going. So, they would know that if they found ALK in your blood, if they made a super sensitive test, that that would be wrong. Shouldn’t be there. And therefore, they would say, you should go get a CT scan. And so, the sensible thing would be, develop a cocktail of tests for every one of the things that drive lung cancer and say, if we find it, that’s bad news. Go get a CT scan.

Laura Levaas:

I like that. A cocktail of tests. Good. Well, hopefully, that will be soon. Two more questions. This is a really great question, actually, from Gail O. Is there a resource for local oncologists to reach out to for information and collaboration about lung cancer? Because as I’m sure you know, some of these smaller centers, maybe those physicians aren’t seeing lung cancer patients. So, they – I don’t wanna say they don’t know what to do, but maybe a patient is not getting the appropriate treatment protocol.

Dr. Ross Camidge:

I mean, that’s a really good question. So, it depends on where you are in the world. So, there are guidelines that NCCN, National Comprehensive Cancer Network – which is a common guideline used in the USA – is updated every few months. And that’s a common thing that a private practitioner could look at. And yet, it’s astonishing how many people sort of still don’t follow that. That’s a guideline. And the trouble with guidelines is, they don’t describe every possible scenario. In terms of how do you –? This may come as a huge surprise to you, but doctors have egos.

Laura Levaas:

No!

Dr. Ross Camidge:

No! So, how do you convince a person who may be a very good general oncologist that they don’t know everything? And that’s really hard. So, it’s not that we don’t necessarily have the resource. But we have to have people feel comfortable, if you like, asking for help. And I think that may be the biggest challenge.

I mean, I’ll give you an example. So, here we are in Colorado. There are probably several hundred medical oncologists in the state, of whom a handful ever send us patients for clinical trials. And you go, well, they must all see lung cancer. Lung cancer’s common. So, why do only some of them send people for clinical trials? Either they’re sending them somewhere else – and that’s okay – or they’re just not asking for help. And that is a huge tragedy if that’s happening.

Laura Levaas:

Yeah. So, is there a resource for local oncologists, like –?

Dr. Ross Camidge:

Do you want me to actually answer the question?

Laura Levaas:

If it’s possible. It’s a big question.

Dr. Ross Camidge:

No. I mean, not in a – I mean, there are lots of separate resources. So, all oncologists are subject to CME, continuing medical education. There are videos they can watch. There are updates of all these conferences. But they have to want to do it. Nobody is getting down and forcing them to do it.

Laura Levaas:

Right. And I think that’s where an empowered patient comes in. An empowered patient will seek out the care that they’re looking for.

Dr. Ross Camidge:

Yeah. I mean, I do lots of second opinions. And for many of my patients, they’re around the world and around the country. And sometimes, their oncologist I form a very close relationship with because we both feel like we’re looking after the same person. And you almost feel like you’re kind of a co-parent. And that’s great because they don’t feel threatened by me, and I don’t feel threatened by them, and we can work together. “Well, this has happened. This is what the scan shows. What do you think? And I’ll do this.” And others don’t. But that’s how it can work well.

Laura Levaas:

Okay. Last question. This person’s name is Parentin B. I’ve never heard that name before. It’s very interesting. Are there recommendations about what patients can do themselves, like supplements, diet, exercise, etc., that could be helpful? And I know when I was first diagnosed, that was one of my first questions. Because my physician said, “Well, eat healthy.” And I was like, “Well, what does that mean?”

Dr. Ross Camidge:

What does that mean? Yeah.

Laura Levaas:

So, I think there’s a glut of, should we do Keto? Should we do Paleo? Should we go vegan? Vegetarian?

Dr. Ross Camidge:

I think one of the things is, what this is actually telling us is that when we’re diagnosed, we want to be part of the solution ourselves. We don’t want to be passive and have people do things to us. And I think the physicians who go, “Well, no. Nah,” I mean, they’re missing out on that need to take some aspect of control of our lives.

And so, some of it, you can channel that energy into becoming empowered and educating yourself about it. Not to the point that you’re obsessed about it, but I mean so that you’re, again – occasionally, I get patients who come in, and you go, “So, what treatment are you on?” And they go, “I don’t know.” And you go, “Well, you’re hardly taking control if you wanna change your diet, yet you can’t be bothered to learn the name of your chemotherapy. That’s not empowerment.”

I think diet is something we can all control in our lives. It can also make you – a diagnosis of cancer makes you vulnerable to anyone who wants to sell you any kind of quack theory. I think most people, at least our cancer dietitians here, would say, you bump up the fresh fruit and vegetables. You don’t have to become a juicer. But fresh fruit and vegetables generally make you feel better. They keep your bowels moving more, which sometimes, some of the treatments can interfere with that. You don’t have to feel guilty if you have a candy bar. But if you minimize the amount of highly processed food you have and the amount of sweets, that’s fine. It’s like anything else. You can have cheat dates. Don’t feel bad about it.

But all of that is kind of subjective. There’s people who are gonna tell you, you have to have cottage cheese and flax seed oil or the Gerson diet and have coffee enemas. I prefer my coffee this way, but –

Laura Levaas:

Me too.

Dr. Ross Camidge:

And there are always testimonials about these things, but there’s very little hard evidence that it actually makes a difference. The one exception is exercise. Actually, there’s quite a lot of data that being a healthy weight – so, not overweight, and just being active. It doesn’t mean you have to sign up for a triathlon, but just going for a walk every day or doing something actually makes people feel better, makes them cope with the treatment better. And there’s even some data that actually survival is improved. So, that’s definitely something that people can do.

Laura Levaas:

Well, those are all really good things. And I appreciate these questions. Many of them came from the ALK positive Facebook group that really helped me cope through some of my tough times. And there are some really smart folks in there, way smarter than me. Probably not as smart as you. But they –

Dr. Ross Camidge:

No! Way smarter than me! They’re all like nuclear physicists and things.

Laura Levaas:

I’m really amazed at the amount of specialized information that I’ve been able to find in these support groups. So, kind of winding up. Thank you, Dr. Camidge, for joining us today for – it’s a new program, actually, from the Patient Empowerment Network, but it’s produced by Patient Power. And again, we want to thank Celgene Corporation, Novartis, and Pfizer for their support, even though they don’t have editorial control. We’re kinda driving the bus. And we’re really grateful that you could join us today and answer all of these pressing questions.

Dr. Ross Camidge:

My pleasure.

Laura Levaas:

Thanks. We’ll catch you next time. And everybody, thanks for watching. Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

How Can Lung Cancer Patients Stay Involved in Research to Innovate New Treatments?

Living Well With Lung Cancer

Downloadable Program Guide

Noted lung cancer experts, Dr. Lecia Sequist, Marisa Wittebort, a lung cancer advocate with a very rare mutation, ROS1, and lung cancer advocate, Janet Freeman Daily joined this program to provide an expert perspective on the impact of patient involvement in research and how both lung cancer patients and care partners can contribute to bringing new medicines to the market.


Transcript:

Andrew Schorr:
And greetings from Carlsbad, California, near San Diego. I’m Andrew Schorr from Patient Power. Welcome to this Patient Empowerment Network program. I’m so excited. It’s where we can learn how can lung cancer patients stay involved in research and innovate new treatments to benefit the lung cancer community.
Let’s meet our guests. First of all, we wanted to have Marisa Wittebort, who is a ROS1 lung cancer patient, but unfortunately Marisa is having a medical procedure and so she couldn’t be with us. But joining us from New York City is her sister, Jess, who’s been with her every step of the way. Jess, thank you so much for joining us. And, first of all, how is your sister doing?

Jessica Wittebort:
Yes, she’s doing good. Thanks so much, Andrew for having me join today. Marisa’s good. She has another pesky effusion that needs more attention today, so I’m joining you, but thank you very much.

Andrew Schorr:
Okay. Well, all our best to Marisa.

Jessica Wittebort:
Yeah, I appreciate that.

Andrew Schorr:
You know, the role of a care partner such as yourself, a sister, a spouse, and other family members is so critical. Okay.
Let’s also meet someone else who has been living with lung cancer personally and that is our old friend–she’s not old, though–Janet Freeman-Daily who joins us from Seattle. Janet also happens to have the ROS1 mutation like Marisa, and she is so active in going to medical conferences all around the world. Janet, thanks for being with us.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Janet Freeman-Daily:
Thanks for inviting me, Andrew.

Andrew Schorr:
Okay. And, Janet, you–how many conferences have you spoken to that are medical conferences, but you’re a patient who gets up and says, here’s our perspective? How many?

Janet Freeman-Daily:
I think it’s five or six at this point.

Andrew Schorr:
I bet. And we’re going to get–we’re going to talk more about the importance of that. So you’re one side of the coin, as is Marisa, and then we have a leading cancer researcher joining us from Mass General in Boston devoted to people with lung cancer. That’s Lecia Sequist. Dr. Sequist, thanks so much for being with us.

Dr. Sequist:
Thank you for having me. This is really a treat.

Andrew Schorr:
Okay. So you’ve been at medical conferences where you’ve heard people like Janet speak. Does that inspire you when you are actually at what would otherwise be just thousands of cancer specialists, but the patient perspective is put right front and center?

Dr. Sequist:
It’s very inspiring, as I’m sure we’ll talk about. It was especially palpable this year at the World Lung Cancer Conference in Toronto just about five or six weeks ago. Janet was there. There were so many lung cancer advocates there, and this is a conference that’s focused only on lung cancer, and it was really exciting.
But I would say Janet and I have been running into each other at the hallways of medical conferences for many years, and it is always really interesting to get the patient perspective about a big result that was just presented maybe an hour earlier. And I love running into people at meetings and talking to them about it. It really helps inform our research.

Andrew Schorr:
That’s what I was going to ask–go ahead, Janet.

Janet Freeman-Daily:
It’s also very nice to run into a doctor after a presentation and say, what did they just say?

Andrew Schorr:
Right. Right. So do you, Dr. Sequist besides inspiring you, and then there are people in labs who don’t even–you see patients, but there are other people who are only in labs, do you feel that this communication with people who are living it can actually help get information, promote collaboration and accelerate us towards what we hope will be cures?

Dr. Sequist:
Oh, absolutely. It’s a really vital two-way communication road. I think having patient advocates learn more about the research process, both the pros and cons about went research process, and see what all is involved and what hurdles we have to deal with all the time as researchers can be really helpful. We need their help advocating to get rid of some hurdles and the obstacles in our way.
And there is nothing more informative than finding out what really is important to patients, especially when you’re developing a new treatment, hearing from them about what they value, what they–you know, someone who is not living with it may think that a certain side effect is a big deal, yet someone who is taking the medicine will say, you know, actually that’s–I can deal with that if it’s going to help me live longer. And finding out where that balance lies is really important and not something you can just guess if you’re not in the shoes of a patient.

Andrew Schorr:
So, Marisa, you’ve been every step of the way with your–rather, excuse me, Jessica.

Jessica Wittebort:
I’m channeling her, it’s fine. I’m channeling her.

Andrew Schorr:
All right. You’ve been with Marisa every step of the way, and unfortunately she was diagnosed in 2015 at what, age–

Jessica Wittebort:
She just turned 30, yeah.

Andrew Schorr:
She just turned 30. You’re her big sister. From the family perspective what do you hope, with closer collaboration with researchers, practitioners like Dr. Sequist, what do you hope?

Jessica Wittebort:
Well, gosh, I think we’re really just hoping to expedite research, and we want to be part of that journey. You know, I think when Marisa goes in to see her oncologist and he gives her a high five because she’s doing well, you know at a granular level that that relationship and that everybody is pushing for the same thing.
I think a little bit that gets lost in translation sometimes when you can get swallowed by the information that comes out of a conference if you’re not carefully, right, so learning how to translate that information into something tangible and consumable and being able to respond back to your healthcare professionals I think is just that bridge that’s essential to moving things forward.

Andrew Schorr:
And you’ve been to some conferences. I saw you at the Biden Cancer Summit, which had a lot of patients and patient advocates there, but I think you’ve been to–where did you go? To Austria or someplace?

Jessica Wittebort:
Yeah, I went to World Lung in Austria, to meet Janet, frankly. No, I mean, to see some incredible work in progress and some incredible work, and it’s a tremendous amount of content. I probably understood, you know, 5 percent of it, but at least it got me there starting to understand what the language was, starting to understand what the potential impact of clinical trials are, starting to feel just a tremendous amount of hope that lives through science, and to see my colleagues. You know, Janet is pretty much family, so I think these conferences, it’s incredible when patients not only part–you know, really participating, I think that’s a big deal.

Janet Freeman-Daily:
It was also really great for the–there were several ROS1ders there, people who had ROS1 cancer dealing with it at the end of conference, and we got to go up en masse and talk to the researchers about what they were doing, which was educational for us, and I think most of them felt fairly enthused about it too.

Andrew Schorr:
Janet, you’ve spoken at some of these congresses. What do you want to say to that clinical and research audience? What are you trying to bring forward to them as somebody living now, what, four or five years with stage IV lung cancer?

Janet Freeman-Daily:
I was diagnosed seven and a half years ago.

Andrew Schorr:
Seven and a half years ago. So, thanks god, treatment, and you’ve been in a trial for a long time, has just been remarkable for you, life-extending. What’s the message you bring when you speak?

Janet Freeman-Daily:
Well, it depends on the setting that I’m in and what I’ve been asked to speak about. It’s been different topics. Once I’ve talked about value in cancer care and the cost of cancer drugs. Once I’ve talked about the research that the patients with ROS1 were doing. I’ve also talked about the importance of goals of care discussions with the doctors to talk about what our treatment options are and what our chances are of them being effective so we could make our own choices about treatment rather than having the doctor decide what we’re going to do.
There’s a lot of different topics out there that patients can share their background and perspectives on. I think one of my more favorite things is running into Dr. (?) Jean Kooey who created the drug that I’m on and that Marisa started with and that Marisa then took next. She’s the lead chemist on those designs, and we ran into her at the poster session at ASCO and she got to meet the patients that her drug (?) Inaudible, which was a really big deal for her. And we’re all kind of awe struck, fan girl, oh, my god.

Andrew Schorr:
So, Dr. Sequist, does that make a difference? Because there are maybe many thousands of people working around the world on lung cancer now, some people only in labs, and never meet a patient like with a more rare mutation like ROS1. Does that make a difference when that connection can happen?

Dr. Sequist:
Oh, absolutely. I do think it’s really important for people who are working on the basic science aspects of cancer and in a laboratory, a little bit removed from the patients, to meet patients and survivors and see what their work is leading to. At Mass General we routinely have tours of our lab so that the people that work in the lab, not just the lead scientists but even the techs who are there for 10, 12 hours a day working hard for them to see how their work can really make a difference. And I know lots of other centers will do that as well.

Andrew Schorr:
So we’re getting into this age of personalized medicine, and I was in Boston a week or so ago and whether it’s out of MIT or your partners group in Boston, there’s all this computing power coming into play to try to understand what is our personal situation with a cancer and how do you develop or do you have medicines or trials that line up with that. And that’s been a real work of yours, right, is to try to look at the subsets of lung cancer. How are we doing in that? We talk about ROS1 and you have KRAS and ALK and EGFR and all these different types and then some types that haven’t been identified yet, right?

Dr. Sequist:
That’s right. I think if you take the long view and look at 10 or 15 years ago where the field of lung cancer was, it is a totally different landscape today. We have come so far in being able to personalize not only the clinical trials that are available for patients but then subsequently the approved treatments. And there’s been a lot of exciting advances in lung cancer that are a little bit less personalized lately, specifically immune therapy. That works with a bit of a broader brush, but the success in the personalized targeted therapy is unparalleled in other tumors types at the moment, and so I think everyone that works in lung cancer is really proud of how much the field has moved forward.

Andrew Schorr:
But you’re doing detective work, so some of these genes weren’t originally identified, and you have probably a lot more to go, so what’s going on now where for people where a gene wasn’t identified maybe you’ll have that? You’ll find out what the factors are or if somebody switches from one driver gene to another?

Dr. Sequist:
Yeah, there’s a lot of important things that go into that. One is being able to test each patient, and there are now several ways that you can test for the key mutations. The gold standard is still testing tumor biopsy, but liquid biopsies are also coming really into the forefront ready for prime time. Janet and I actually collaborated–well, Janet led the collaboration on an article that we wrote together about liquid biopsies and how it’s–and demystifying some of these things for patient audiences.
But looking at the tumor is important, and then actually important is getting patients to the right trials. You’re not going to be able to prove that something works if you can only find one patient with that mutation. You really have to reach all over the country and sometimes all over the world to find patients specifically for a situation. And that’s one area where patient advocacy groups have been extremely helpful helping bring patients together with the trials that fit their situation.

Andrew Schorr:
So tell me–go ahead. I was just going to–Janet, what’s the message then to people watching so that they can get the care or the testing or help involved to push research further? What do you want to say to people?

Janet Freeman-Daily:
Well, I think one of the valuable things that Lecia brought out is that we are developing or identifying new mutations all the time. When I was first diagnosed nobody knew about ROS1. It hadn’t even been published yet. And when I found out about it and I brought the article to my local doctors in the community setting they didn’t know how to test for it. And yet when I got tested and they found that I had ROS1 I have been on a drug now that I’m coming up to my six-year anniversary for my clinical trial, and I’m still no evidence of disease.
So what I would tell people is it’s really important to keep track of the research and to stay on top of the new developments. And so the patient communities are really good at that because you might find a new option that didn’t exist when you were first diagnosed.

Andrew Schorr:
And so that’s something that you, Jess, and your sister do all the time, right? And so you know you have this ROS1 version of lung cancer for your sister, you don’t know if something will change or other factors will come in, so you keep your ear to the ground very much and connect with the community.

Jessica Wittebort:
Absolutely. So tactically what do we do? We have our Google alerts always set to any medicines that we’ve heard about, any clinical trials that we’ve heard about, any researchers that are working in the space. For us, we have a ROS1 community online which is–we have a public one, and we also have a private one on Facebook where we’re able to just very openly bounce ideas around and talk about things we don’t understand and get those concepts in our heads.
And oftentimes those relationships lead to actually meeting off line. So most cities that Marisa or I visit for whatever reason, whether it’s going to see a doctor or going to an event, we get to meet somebody offline as well. So finding–keeping your ear to the ground, yes. We have great luxury of really–Marisa has a great team, so they will always drive that for her. But I think it’s also something that she is always very keen to share the information that she’s getting so that other people are privileged to have that information as well.

Andrew Schorr:
Go ahead.

Janet Freeman-Daily:
And a few key researchers like Dr. Sequist, Dr. Camidge, Dr. Shaw, at a few key universities are the experts in some of these driver oncogenes, and they’ve been very generous in their time in allowing us to e-mail them questions and say, gee, this question came up in the group, and we don’t have any experience with that. Could you give us an idea of what to do? So the researchers are key to this.

Andrew Schorr:
They are. And, Dr. Sequist, thank you for your devotion. I have a question for you, and that is most people though don’t get treatment at University of Colorado or Mass General or Dana-Farber or City of Hope or MD Anderson, and we could list a bunch of the leading institutions. Most people are told they have lung cancer, they’re at a community oncology practice, they’re terrified, and you’re leading change. You’re on the leading edge, all of you, in lung cancer, but that sometimes hasn’t quite–I don’t want to say trickle down, but you’re on the podium at World Lung or ASCO and you’re talking to a thousand doctors sitting there and we’re hoping that it gets to them, and a patient walks into their clinic, though and maybe some of this isn’t brought to bear.
What can the patient or the family member do so that this knowledge that’s emerging in lung cancer can be brought to bear at the community level? What’s the patient or the family member’s role today?

Dr. Sequist:
I think medicine is changing, and we are no longer in an era where any one doctor can know everything about medicine. I mean, we haven’t been in that era for a long time. And it’s very difficult to be a community oncology, a general oncologist today. There are so many new treatments and new genes and new strategies coming out for every type of cancer in rapid succession, so keeping up with all of lung cancer advancements plus all the other tumor types is quite a challenge.

That’s why I think that now more than ever as cancer gets so complicated it does work really well for patients to be able to connect with other patients and lung cancer specialists online, through activities like this, through many other educational activities that are available and advocacy groups because–just because a community oncologist has never heard of ROS1 I don’t think makes them a bad community oncologist, but hopefully the message is getting out to the community to partner with super sub-sub specialized academic centers if a mutation like this is found in a patient.
Andrew Schorr:
Okay. So, Janet, what do you tell people, what do you want to tell our viewers who were probably treated at least initially at a community center and they have no clue whether they have some subtype, rare or not, of be lung cancer and what to do about it? Janet, (?) Inaudible.

Janet Freeman-Daily:
If a person has lung cancer and it’s non-small cell lung cancer you should have gotten genomic testing at some point, and if you didn’t you need to ask your doctor about that. If your doctor is not familiar with it, and some of the general practitioners and community oncologists may not be as comfortable with it as other lung cancer specialists, then get a second opinion, preferably at a major academic cancer center.
If you want to learn more about this there are a large number of online patient groups where you can ask questions and get educated about this, or you can go to websites of some of the lung cancer advocacy organizations like LUNGevity, Lung Cancer Foundation of America. They have a good deal of information where you can start learning about things to get yourself educated on the topic. It’s–I still hear patients who are stage IV lung cancer, and their doctor sent them home on hospice without ever doing genomic testing. It’s really important that you make sure you get the tests that are in the standard of care.

Andrew Schorr:
So, Dr. Sequist, just back to you. This genomic testing is to see, is there an oncogene or cancer gene that’s driving your cancer that either an approved or maybe a clinical trial experimental medicine may target, right? Okay?

Dr. Sequist:
That’s correct. And, as Janet was saying, it’s vitally important for every patient that’s diagnosed to get tested at a minimum for the genes that correspond to FDA-approved medications, but there are several second-tier mutations that I believe everyone should be tested for because there are clinical trials that even if it’s not available at the community site where they first sought care hopefully it’s available someplace that’s not too terribly far from where they live.

Andrew Schorr:
Okay. So I’m sure that Janet follows this and Jess of course, can the genes change? So, in other words, in lung cancer if Mrs. Jones is seen to have a KRAS mutation, just to pull one out, early on, does that always remain what’s driving her lung cancer, or might it change and there might be a need to test again?

Dr. Sequist:
I think we’re all experts in this, so we can everybody chime in as well. If the cancer truly has a driver oncogene what that means is that every single cancer cell in the tumor carries that genetic mark. Probably the very first cancer cell that came up in the body had it, and then every daughter cell that was created afterwards carries this mark. As patients–so typically these are EGFR, ALK, ROS, MET, RET. These are the ones that we have targets for, BRAF, targeted drugs.
Now, once a patient is on a targeted drug you can think of it like evolution, like survival of the fittest. So a drug is exerting pressure on the cancer, many cells are dying, but sometimes a cell will have a certain characteristic that allows it to live through the drug treatment, and then from there a resistant tumor can grow. And so second mutations or second pathways can become activated after patients have been treated with certain drugs. And the more drugs that people have been exposed to over time the more different subpopulations that might have varying signatures come up.
But you never lose that original mutation. It’s something that is always carried forward. It’s just what else piles on top of it across the different arms. I describe it as different arms of the family or cousins. Like this tumor is a cousin of that tumor because they do have some different characteristics but still that same core characteristic.

Andrew Schorr:
And you were saying about retesting?

Janet Freeman-Daily:
So some drugs we know that if they stop working there’s another drug that you can go to, but as we develop more and more drugs and EGFR, with which Dr. Sequist is very familiar, has more drugs than the rest of us. When patients take certain of those drugs second or third line they actually might develop a different mutation and will have to get retested to find out how to treat that. We’re right on the forefront of learning about how the genomics of cancer works, and we learn new things all the time.

Andrew Schorr:
So, Jess, you and your sister have sought out eminent specialists at major centers, but, as you said, not everybody goes there. What advice do you have to patients and family members, especially family members because sometimes the patient is so terrified just being led through care and the family member has to pick up the mantle? What would you say so that the loved one gets the best care?

Jessica Wittebort:
For us the most profound change has been to find a specialist at an academic institution. I think if you don’t–if you’re not able to do that, it is really important to find your patient group and start asking, what are they doing. What information can you get your head around? And keep your head above water because I really do believe there’s so much hope and there’s so much energy right now and momentum in this space that it’s important to just keep finding, keep looking for the information. And if you’re not getting the answers that you need or are too complicated figure out a way to not feel shy about asking again.

Andrew Schorr:
Amen. So you mentioned earlier, Janet, about getting tested, right?

Janet Freeman-Daily:
Yes.

Andrew Schorr:
So what if the test doesn’t identify anybody? Should they be forlorn? I’m going to ask Dr. Sequist, too. If one of these genes that we rattled off doesn’t show up or driver gene should they say, oh, my god I’m out of luck?

Janet Freeman-Daily:
No, not necessarily. Targeted therapies are easy to take in that you can take a pill once or twice a day, but they’re not the only new therapy that’s come out, and most of the patients who do not have a targeted treatment can take immunotherapy. That’s the new standard of care, and it works really well. I’ll let Dr. Sequist talk to that.

Andrew Schorr:
Let’s understand that, Dr. Sequist. So if somebody doesn’t have any of those genes but both of you have mentioned immunotherapy, how does that work and how does that help?

Dr. Sequist:
So one quick point before we get to immune therapy is that it’s really important if you are told that you don’t have any specific mutations that you make sure that the correct panel was done. Sometimes there are small panels that may miss important genes simply because they’re not part of the panel. So the test may be negative for everything that was assayed, but it may not rule out some of these rare mutations. Like Janet was saying, her mutation wasn’t even known about at that time she had the first testing done so she had to have repeat testing. And this is a very common story. So that’s what I wanted to say about testing.
But immune therapy is–really been a game changer in cancer in general including lung cancer, but this is the idea of trying to get someone’s own immune system so attack the cancer. Our bodies are supposed to do this. Our immune system is supposed to be on surveillance for cancer cells, treat them as foreign and destroy them, but obviously if a tumor grows to a point where you’re getting a diagnosis of cancer something has gone wrong in that process. Usually it is that that tumor is camouflaging itself in some way from the immune surveillance, and some of the new treatments that have been approved over the last couple of years in multiple types of cancer essentially rip off that camouflage, allow the immune system to see that the cancer is there as a foreign invader and start to attack it. In lung cancer this works best on the, as Janet was mentioning, the type of cancers that don’t have a driver mutation, the types of cancers that are more often associated with a history of smoking or exposure to some other carcinogens, and immune therapy has really changed the survival and the treatment options for a large population of lung cancer patients.

Janet Freeman-Daily:
And I just want to reiterate that it’s very important that you get genomic testing before you start immunotherapy because the data we have now indicates that immunotherapy usually does not work for those of us who have driving mutations.

Dr. Sequist:
And it may increase the toxicity of some of the targeted drugs, so not only may it not work but it might harm your chances of having a nice, long response like Janet and Marisa are having.

Andrew Schorr:
Hmm. This is complicated stuff. We talked about how difficult it is for the community oncologist who sees sort of all comers to keep up with this. Let’s just review some of the things that have come up recently at medical meetings that you’ve been at.
So first of all, Janet, from your perspective as a patient, you go to the World Lung meeting, you go to some of the other meetings, what do you think are the big deals for patients? Is it more genes being identified? Is it having immunotherapy work for more people? What are the big take-home messages we should review for people here?

Janet Freeman-Daily:
Well, you touched on two of them. One, there are more genes identified. I’m not sure I’ve got quite the right percentage, but at the moment I believe it’s about 70 percent of patients with non-small cell lung cancer have a driving mutation for which there’s an approved drug or a clinical trial. Is that right, Dr. Sequist? About?

Dr. Sequist:
I don’t know the exact number, but it’s got to be close to there.

Janet Freeman-Daily:
And then there’s immunotherapy, which not only works for some people who didn’t have treatment choices but in some cases continues to work after they stop taking the drug for a good period of time.
But I think one of the other big notes is it appears that immunotherapy may be working for small-cell lung cancer, which has not had a new treatment option in decades, so that is huge.
However, in addition to treatments I would say the next big thing, and it’s not too surprising I’m going to say this because this is what I talked at World Lung, but the fact that we have new patient groups forming around these driving oncogenes, we have enough patients who have been taking these targeted therapies enough, long enough and feeling good enough that they’re becoming active as advocates.
And they want to learn more about their disease, so we now have a group for ROS1 called the ROS1ders, for EGFR, EGFR resisters, for ALK, called ALK Positive, or RET, called the RET Renegades, and a separate group for a subset called Exon 20 group for insertions or Exon 20 of HER2 and EGFR.
And these patients groups are providing guidance to help patients find clinical trials, to help them understand their treatment, to deal with their side effects, to find experts, and we’re also funding research. So there are new research studies being funded by these patients, and the ROS1ders have actually created a study where we are making cancer models of our own rare cancer because researchers didn’t have anything to study, and now they have more cells. In fact, we’ve got, I think, four new cell lines in the past year and more in development.
And we also have three patients who have donated to creating mouse models of ROS1, and they hopefully will be useful for us. And they’ve already had two different publications on the subject. And without it some of the ROS1 research couldn’t be done, so we’re very excited about that.

Andrew Schorr:
Wow, just congratulations to all of you who are involved in this, and I know you’ve got a big smile on your face, Dr. Sequist. We used to have such a very short turn for most people with advanced lung cancer, and now, thank god, with research you’ve done and your peers around the world and in collaboration with patients we have people living much longer, like Marisa, who unfortunately couldn’t be with us today, but Janet and some others who are probably watching.
So that then gives you the opportunity to try to understand them and a lot of aspects of their care and their biology more than you ever could because people are living, right? So that chance for dialogue is really critical to understand how are we not just, yay, we have the medicines helping people live longer but what’s going on, right?

Dr. Sequist:
Yeah. I think that’s right, and it gives us an opportunity to think more critically about how we can do things differently, whereas 10, 15 years ago we were just trying it to find a way to help people live beyond a year. That was the glass ceiling that we were trying to break. And now that we’ve come so far in lung cancer we can really start looking at some of these important questions about sequencing medications, combining medications. What does that do to quality of life? What are other things that affect patients being on clinical trials for years and years, having to go through the scans and the tests? Trying to make clinical trial more accessible to people because of eligibility criteria that are obsolete.
So these are some of the lessons I’ve learned from working with patients in various forums, and it’s really very satisfying for me for sure.

Andrew Schorr:
I know a lot of your work is in EGFR, and if I have it right maybe the incidence of, if that’s the right term, of EGFR, let’s say in the Asian community is higher. Is that right? And so I know the percentage of people in clinical trials is low, like 3 percent. We need more participation of people from different groups so that you can understand how these different mutations are active more or less in different groups, right, and how certain medicines come into play? That’s one of the collaborations we from all groups need to do with you, right?

Dr. Sequist:
Well, I think another–that’s absolutely right, and another really important role that patient advocates can play is to educate their peers about what clinical research involves. Many people in this country are just scared about clinical research. They don’t want to be considered as a lab rat, and they think that’s something maybe for at the very end of the line when you’ve exhausted all other options when in fact some of the most promising clinical trials these days are for the very first treatment that you may take as soon as you’re diagnosed. And having people be aware that clinical trials are not just a way to experiment on a patient but to really offer the patient cutting-edge treatment that they couldn’t get outside of a trial and work together to bring new treatments to approval, that message is critical to get out to the public.

Andrew Schorr:
Right. And can accelerate medicines getting to the goal line quicker, right? I mean, Janet, I know you–a lot of what, for the community living with lung cancer, like you don’t know how long your ROS1 medicine will work.

Janet Freeman-Daily:
That’s right. It won’t last forever. I will eventually have to try something else, and the drug that I take will probably be in a clinical trial. I think it’s important to know that especially for those of us with driving oncogenes but also for people with cancers that don’t have a good effective treatment option, clinical trials may be your best treatment option. Clinical trials provide hope. There’s no guarantee that they will work, but when you don’t have any other option that looks effective or that lasts a long time clinical trials can be very useful.

Andrew Schorr:
So, Jess, a lot of times a physician will say to a patient, well, I might have a clinical trial for you and the patient comes home to review a whole stack of (?) legalist documents to try and simple–and the family member says, oh, no. What would you say to family members too about this idea of clinical trials and supporting your loved one in maybe getting tomorrow’s medicine today?

Jessica Wittebort:
I think it’s really important again to find a group of people that are on a clinical trial so you can see how real it is, how okay it is, you know, sort beat down those major misunderstandings, you know. Fears that you’re going to be given a placebo and then you’re left to go or whatever the case is. I think we’re still getting in a place where (?) ct.gov or Cancer Commons are able to really very clearly articulate it. The research is there, the information is there, but I do find it still a bit daunting for people who probably are just freshly diagnosed to understand what it means, so I think–

Andrew Schorr:
Right. As Janet said, there are people who can help you with the lung cancer groups she’s rattled by, online groups. There are all sorts of people who can help you, so I want you to–I hope our viewers will take advantage of that.
So, Dr. Sequist, people–Jess just mentioned about people have this fear of getting a placebo. If you’re in a trial, people want to get the good stuff even though you’re not sure what the good stuff is or how good the good stuff could be, but are they taken care of no matter what?

Dr. Sequist:
Patients are absolutely taken care of no matter what. There are many different kinds of clinical trials. Some of them have one arm where everyone on the trial gets the same treatment. Some of them may have multiple arms, and there could be a randomization where a computer basically rolls the dice and tells you and your doctor which arm you’re going to be placed in and you don’t have a choice. But patients are informed about the design of the trial and the various treatments before they sign up. We’re still–scientifically, before something can become standard of care, we still need to compare it to the old standard of care. Luckily, in lung cancer there really aren’t too many spaces left where standard of care would be placebo, so most patients getting lung cancer clinical trials are treated with a standard chemotherapy or a standard targeted therapy or a standard immune therapy, and then the experimental arm might be a variation on that or something totally different.
But it’s really important, and if you do participate in a clinical trial the person who is talking to you about the participation and getting your consent will inform you of all those things. What are the options? What could you be treated with? What is the purpose of the trial? How will it help you as a participant? These are all really important things to understand before you jump in.

Andrew Schorr:
Here’s a question–oh, sorry. Please.

Jessica Wittebort:
I was just going to say that Marisa just signed a stack of papers in Boston this week for participating in the blood biopsy trial, and that’s maybe the fourth pile of paperwork I’ve seen her sign. And it was an incredible process of just her being able to ask any questions, the nurse practitioner sitting down with her answering, answering everything and anything and understanding what it meant. And, you know, it’s–I just think we probably need to figure out how to eliminate some of the fear and the mystery around that process.

Andrew Schorr:
We did a program the other day and the replay will be posted soon with Dr. Richard Schilsky who is the chief medical officer of ASCO, the big cancer organization, and they’re really working hard with industry and government to simplify the forms. And, for instance, for people where English is not their first language to make sure that things are explained to you in your language, whether you read or if there’s a translator there so that you fully understand.
Here’s a question we got in from Ed, Dr. Sequist. He says, I’ve been an active participant in a Phase 1 trial for nearly three years. What is the average length of time it takes for a clinical trial to get to FDA approval?

Dr. Sequist:
That can really vary. I don’t think there is a standard answer, but a lot of people ask me, okay, doc, I’m going on to this Phase 1 trial at what paint will I be graduated up to Phase 2 or Phase 3? And, you know, patients usually don’t switch from a Phase 1 trial to a Phase 2 or 3. The drug development may continue and–continue on its pathway towards FDA development, but patients usually stay in the same trial that they started on.
The record time in oncology for first patient dosed–interval between first patient dosed in a Phase 1 trial to FDA approval was probably for crizotinib, which is an ALK, ROS and MET inhibitor, where the time was, what, about three years, Janet?

Janet Freeman-Daily:
Inaudible.

Dr. Sequist:
But most drugs take a little longer than that. But when I was training the–what I was taught was that it usually takes 10 years for a drug to get from Phase 1 to approval. Thankfully, that is not the case anymore. Most drugs are getting there in three, four, five years.

Andrew Schorr:
Well, I think, as Dr. Schilsky said the other day, they’re really trying to work with the FDA, the NCI, industry to try to do it, but part of it–now, for instance, the government is looking for patient-reported outcomes. How do things affect the patient in their life? So again doesn’t that come into play, too, Janet, that we need to be–we need to be not just part of the trial but we need to be giving information to help with as decisions are made about whether a new drug is a big deal, right?

Janet Freeman-Daily:
Yeah. Patient-reported outcomes are just starting to be incorporated into clinical trials, and it will be great to have them more involved and for patients to be able to provide inputs that are important to them about how they feel on the drug and how it affects them so that we will have more information about side effects when a drug gets approved. But it’s still fairly early.
But I want to go back to one thing that Dr. Sequist said, that the FDA is trying to put programs in place that will help get drugs approved faster. So the clinical trial that I’m on has been going for seven years and will keep going even though the drug is already approved because the drug was approved under what they call accelerated approval based on a Phase 1, 2 trial. Usually the FDA used to require that you had to have a big Phase 3 trial with hundreds of people where you compare the drug against the current standard of care and get a positive result before you could get the drug approved.
But now they’re making drugs for small populations like ROS1 patients. We’re 1 percent of the non-small cell lung cancer population, and you’ll never get enough of us together in one place to do a Phase 3 trial. So the FDA has something in place that allows you to approve drugs based on the Phase 2 trial. Everybody in this Phase 2 trial knows they are taking crizotinib. There is no placebo. So there are–the clinical trials are evolving.

Andrew Schorr:
So, Dr. Sequist, let’s back up for a second. So we’ve had–we have these meetings that you all go to, World Lung meeting, which was in Toronto I think a few months ago. And you have the ASCO meeting and others you probably go to around the world. What do you think is a big deal now? And I know I’ve seen you on the podium at some of these meetings. What do you think is a big deal for patients if you take away from some of the key studies that have been–you’re releasing data on?

Dr. Sequist:
It’s been a huge year for lung cancer. I mean, the standard of care has changed in lung cancer in almost every little corner that you look in. A year ago or certainly two years ago most patients who were diagnosed would get chemotherapy as the first pass treatment. If you happened to have one of the driver mutations then you would try and get one of those treatments first.
Now the standard of care has completely changed. Most patients get immune therapy with or without chemotherapy. There are new approved drugs for ALK and for EGFR in the frontline setting. There’s a new standard of care for stage III lung cancer which we haven’t had in 30 years. There’s a new standard of care for small-cell lung cancer which we haven’t had in 30 years. There’s more evidence from this past year about screening for lung cancer with low-dose CT scans and how this is really effective at diagnosing people earlier and saving lives, potentially especially so in women, we learned at World Lung. So every corner of lung cancer that you can shine a light into there’s been advancements over the last one to two years. It’s really quite amazing.

Janet Freeman-Daily:
We’ve also had one liquid biopsy approved where they can use a blood test to determine whether you’re eligible to take a certain kind of drug. That just happened last year I think.

Andrew Schorr:
So, Jess, you listen to this as a family member. What hope do you take away from that for your sister? Jess, could you hear me okay?

Jessica Wittebort:
Yes, sorry. You’re breaking up a little bit, Andrew.

Andrew Schorr:
I said you hear what Janet and Dr. Sequist were just saying. What hope can you take away from this because you worry about your sister of the week?

Jessica Wittebort:
Every single day I worry about her. And she has to worry about me as well. I often wonder who the real carer is. But, frankly, it’s, you know, she was given a brutal diagnosis three years ago, and she’s kicking. You know what I mean? She’s kicking. She’s doing great. She’s doing yoga teacher training. You know, she has good days and bad days, and I just think there’s an incredible amount of hope.
So get your head in the game, get some information. Get yourself a plan, and you move forward. And if you don’t find the doctor, and it happens all the time, can’t find the doctor you can trust or you can get the right answers from, then you keep looking.

Andrew Schorr:
So here’s some questions that we’ve got in. And, again, if our viewers have a question just send it to questions@patientpower.info.

Kevin writes in for you, Dr. Sequist, for many cancer patients there’s a learning curve. What are your thoughts on how a patient might know when they’re ready to learn and what are the first-stop resources that might give them education they’re ready for? And, Janet, I’m sure you’re going to weigh in. How about the ready to learn? Because otherwise at the beginning you’re drinking–you’re terrified, and you’re drinking from a fire hose?

Dr. Sequist:
Yeah, that’s a great question and I don’t think it’s one-size-fits-all. I mean, patients, it’s like all of us. They come with much different preferences about how they like to learn, about what they want to know, about whether they want to be the primary person learning things or they’re going to designate a family member to help them with this information.
Some people like to learn on the internet. That can be tricky because there’s a lot of bad information on the internet in addition to a lot of good information on the internet. Some people aren’t that into the internet, and they need to learn in-person or through meeting people or phone calls. Luckily, the lung cancer community has so many support systems and education systems that are out there.

Janet mentioned a few, LUNGevity and the American Cancer Society has some information on their website, but a lot of academic medical centers also have information on their websites about lung cancer and resources to connect you to learning more when you’re ready.

Janet Freeman-Daily:
So just to add to that, because there are a lot of wonderful, very educational resources on the internet the Lung Cancer Social Media group put together a reference page for vetted online resources. So if you go to lcsmchat.org under resources and look for what’s there you can find a list that includes links under various categories like for those who are newly diagnosed or looking at lung cancer screening or whatever. And on that list we’ve tried to pull a sample from all of the various pages we know of, all the various organizations that have good lung cancer information. So you can start there.

Andrew Schorr:
Dr. Sequist, I wanted to call out small-cell lung cancer, which I know is the minority of lung cancer. And Janet referred to immunotherapy there, and you talk about overall about hope. Where are we with small-cell now?

Dr. Sequist:
Well, there was a very exciting presentation in Toronto at the World Lung meeting and it got published in the premier journal, The New England Journal of Medicine, that same day that set a new standard for small-cell lung cancer, something that–it was actually really moving. The whole audience burst into applause and cheered essentially when this result came up because for most of us in the audience we had never witnessed an advance in small-cell lung cancer in the course of our career. So this advance is taking the standard chemotherapy for small-cell and adding immunotherapy to it, and patients had an improved survival when that happened.

Andrew Schorr:
Okay. So where do we go from here? Janet, you’re living with it. You wonder how long your medicine is going to work. You have one rare subtype. Other subtypes are being identified and then other people

where it hasn’t been identified yet. What do you want to say to people as far as just keeping on keeping on, if you will, and the importance of a dialogue with a doctor, a researcher in partnership?

Janet Freeman-Daily:
I think the only thing I would make sure everyone does, no matter whether you want to know all the details, whether you want to be involved in research is that it’s essential that you tell the doctor what is important to you. They can do all the rest of it if you need them to, but they can’t know whether it’s more important to you to try every last treatment no matter how lousy you feel, or whether you would rather make sure that if you can’t get out and walk in the woods then life isn’t worth living. They won’t know if you don’t tell them, so it’s important for you as a patient to start thinking about what matters to you in terms of your treatment.
Likely, you’ll be on more than one treatment at some point if you have metastatic lung cancer, and you need to know whether the side effects are acceptable to you. So even if you don’t want to do the research at least be able to tell the doctor what matters to you. I hope Dr. Sequist that you get some patients who do that.

Andrew Schorr:
So, Jess, so some people have trouble speaking up for themselves. I don’t think you’re sister is that way, but you go with her to a lot of treatments and visits. What would you say to family members to support their loved one, and if their loved one isn’t, isn’t feeling strong enough to speak up that the family member has permission to do that and that it makes a difference.

Jessica Wittebort:
Yeah, I think Marisa has her boyfriend, my dad, (?) Inaudible happy to hem and holler about the questions we have and the questions that she raised since the last time we saw the oncologist. But more recently she referred to us as the peanut gallery. I think she’s, you know, at the beginning of this diagnosis I was the one that reached out to the ROS1 group, and now she has a pleural effusion and she’s trying to figure out all the places that that pleural fluid should go to support research.
So I think that the journey will change. I hate that word, journey. I think the path changes as you go. You know that old when you come to a fork in the road, you can take the path or whatever it is, and I think you just have to figure out how to be flexible and flex with that journey. There was–one of the really nice pieces at the Biden Cancer Initiative, I’m terrible with names, the athlete was talking about, you know, everybody talks about diagnosis and the shoot for the cure, but it’s that middle, it’s that middle part that is so tenuous and you have to get really comfortable with the uncomfortable middle part.
So I think, gosh, it could be a strain and stress on your loved ones, and I think the communication is just one must of the exercise as you go, and if you can figure out how to lean into that as a carer, as a patient, as a loved one, then you’re probably ahead of the curve.

Andrew Schorr:
Thank you for that, and we wish your sister all the best, Marisa. My last question is for Janet and then Dr. Sequist. So it used to be the doctor was in the white coat, and the doctor said we’re going to do this, and you were scared, and you went down the hall to have a scan or this or a biopsy, whatever, you just did it. You’re just sort of literally the walking wounded, and you and your family were terrified. And whether you understood or not you sort of nodded your head, and that’s what would happen.

Dr. Sequist, do you welcome the change? Do you welcome the change that we’re sort of all in this

together? And I don’t mean just physicians but I mean researchers too, that this feeling that the patients, the family members, that together, we can solve things. Alone, it’s slower or more difficult?

Dr. Sequist:
Oh, yeah. It’s a very welcome change. I’ve gotten a lot of information and education as well as satisfaction from participating in the lung cancer social media group that Janet mentioned. It’s really great to be able to connect with people on Twitter who are researching lung cancer around the world or who are patients living with lung cancer around the world. And it’s a way to get lightning-fast updates about conferences, and everybody working together towards a common goal is a good feeling to be in that pack.

And I would say to patients out there if you’re in a relationship with a provider where it feels more like what you were describing, Andrew, like that you’re just being told what to do and you’re not being listened to or you don’t have the ability to speak up or have your loved one speak up for you, you need to seek out a different oncologist. Because it’s too important.
It’s too important of a disease to be dealing with someone you don’t have a great relationship with. And I would define a great cancer patient/oncologist relationship is one where both people can feel free for express what’s on their mind and to listen to each other and just feel heard and feel part of the decision-making.

Andrew Schorr:
I just think has a tragedy if, as you say, the landscape is changing so much–we have a long way to go, but it is changing so much in welcome. What a shame if you or your loved one passes away because there wasn’t a certain test done or a wide enough panel testing and there was something either approved or in trials that could make a difference to extend life. What a tragedy.
So Janet, I’m going to leave the last sort of empowerment message to you, what you want to say to people so that that doesn’t happen.

Janet Freeman-Daily:
I think there’s been a lot of good comments in the entire presentation along those lines. I think there’s a lot of evidence to show that engaged patients with serious diseases live longer. That patients who become more educated about their disease when it’s on the cutting edge as lung cancer is right now, they have a much better chance of making sure that they’re getting the best care.
But I also want to point out one interesting thing that’s evolving as we get these more empowered patient groups. We actually had a doctor, a researcher approach us because he had heard that ROS1 patients supposedly didn’t have as many brain mets as outpatients did, and that didn’t seem right to him. So we actually worked with him and did a survey on our own patient group and were able to tell him, yeah, it’s a lot more common than people are giving it credit for, which stimulated a whole new path of research that’s changing the way that people think about the disease. And if we had not had that open communication between the patients and the researchers, if we hadn’t had the empowered patient groups that survey wouldn’t have happened. So I think this change in paradigm being patients learning about their disease and getting involved in patient groups is making a huge difference.

Andrew Schorr:
Well, Janet Freeman-Daily thank you for being with us once again. I hope we get to do this for years and years, Janet, and one day we can say cured. Wouldn’t that be great? And I’m so delighted to see you and for joining us.

And Jess Wittebort, thanks so much for being with us too. All the best to your sister Marisa with the procedures she has, and, as you say, she’s kicking it, and I hope that keeps happening.

And Dr. Lecia Sequist from Mass General, thank you for your devotion to patients and helping lead the way in research so that we can really everybody can get the personalized care they need.
I’m Andrew Schorr from Patient Power. Remember, knowledge can be the best medicine of all.


Please remember the opinions expressed on Patient Empowerment Network (PEN) are not necessarily the views of our sponsors, contributors, partners or PEN. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

How Can Cancer Patients Contribute to Science?

Interview with D. Ross Camidge, MD, PhD, Director, Thoracic Oncology Clinical and Clinical Research Programs; Professor of Medicine, Division of Medical Oncology University of Colorado Denver

During the recent Lung Cancer Town Meeting in Chicago, Illinois, Janet Freeman-Daily interviewed Dr. D. Ross Camidge about how lung cancer patients can contribute to cancer research. Dr. Camidge says there are several ways that are each equally important. Watch the full video below to find out.

 

How Can Cancer Patients Contribute to Science? from Patient Empowerment Network on Vimeo.

Healing vs. Curing

Healing vs. Curing from Patient Empowerment Network on Vimeo.

Founder and CEO of CanSurround, Meg Maley, alongside a panel of Niki Koesel. MSN, ANP, ACHPN, FPCN, Eric Roeland, MD, and lung cancer survivor Randy Broad discuss healing vs. curing and how a healthcare team should focus on what it means to each individual patient.