[ Inglese] The Proactive Lung Cancer Patient: How to Get Tomorrow’s Medicine Today

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Topics include: Treatments and Understanding

[Editor’s note (11/2018): Matt Ellefson passed away after a long battle with lung cancer. Matt was the epitome of what it means to live a purpose-driven life. His work has impacted thousands of people across the world.]

In this 90-minute program, Dr. Alex Spira, Director of the Virginia Cancer Specialists and ASCO President Dr. Bruce Johnson, discuss the latest understanding of lung cancer, state-of the-art testing to plan personalized care, currently approved therapies and research around promising clinical trials to help patients and care partners learn how to be proactive in order to get tomorrow’s medicine today. Leading patient advocate Matt Ellefson of SURVIVIEiT® joins the panel to share his passion and tips for making sure patients advocate for themselves from the start. A must-watch for all patients and care partners affected by lung cancer. 

This lung cancer webinar was a SURVIVEiT® program produced in association with US Oncology NetworkVirginia Cancer Specialists and the Precision Medicine for Me initiative and produced by Patient Power. The program was sponsored by SURVIVEiT, a non-profit patient organization, through educational grants they received from Celgene, AbbVieFoundation Medicine, Novartis and Guardant Health with additional support from Viviphi.

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Transcript

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.

Andrew Schorr:

Hello, and welcome to this worldwide, certainly nationwide broadcast. I’m Andrew Schorr with Patient Power in Philadelphia. And this program, of course, is “The Proactive Lung Cancer Patient: How to Receive Tomorrow’s Medicine Today.” And we’re joined by an expert panel of physicians, and also, aptly, longer-term survivors with lung cancer. And this will be a very informative and inspiring 90 minutes. Remember, you can send your questions in at any time to questions@patientpower.info. We’ll be posing those to our experts. Of course, the whole field of lung cancer has been changing. And so, as this science is improving, happily, it’s so important now for you and the family to really take a greater role in your care. And we’re gonna talk about that throughout our whole program.

I want to thank the wonderful organization that’s really enabled us to put this on, and that’s SURVIVEiT in surviveit.org. And they’ve just been great. And you’re gonna meet, in a minute, the founder of SURVIVEiT, a survivor in lung cancer, Matt Ellefson. We also want to thank our sponsors who provided funding for this program, Celgene, AbbVie, Foundation Medicine, Novartis, Guardant Health, and then with additional support for Viviphi. So thank you so much for helping make this program possible.

Okay, what are we gonna do during this program? You’ve been learning that you can send in questions. We have downloadable resources for you that were on the registration page, but we’ll email them to you as a participant afterwards. And that will help you with a glossary of terms, and let’s face it—I’m a two-time blood cancer survivor. When you’re diagnosed with cancer, there are all these acronyms and terms and medicines that you’ve never heard of, and you’re terrified. And so, we have a glossary prepared for you.

There’s also a guide that SURVIVEiT has helped provide for you, a Start Here guide. There are questions to ask your doctor so that you get state-of-the-art care that’s right for you. There’s also a guide to how to get remote second opinion, which can be often very important in lung cancer now. And then also, a patient guide that was prepared by one of our supporters, Foundation Medicine, and we thank them for that. Okay. Let’s meet who we have with us today. And really, we’re so delighted that they could take the time to be with us. First, I want to go to—I believe it’s Fairfax, Virginia, and introduce Dr. Alex Spira. Dr. Spira is with Virginia Cancer Specialists. He’s the Director of the Virginia Cancer Specialists Research Institute in the Phase I trial program at Virginia Cancer Specialists. Dr. Spira, thank you so much for being with us.

Dr. Spira:               

Thanks, Andrew. Glad to be here.

Andrew Schorr:

Okay. Now let’s go up to Boston. We have another eminent physician and specialist in lung cancer, and that is Dr. Bruce Johnson. Dr. Johnson is the Chief Clinical Research Officer and Institute Physician. He’s a Professor of Medicine at Harvard Medical School. He is at the Dana-Farber Cancer Institute, and also, he’s just been installed as the President of the American Society of Clinical Oncology. Dr. Johnson, thank you so much for being with us.

Dr. Johnson:

It’s great to be here this afternoon, Andrew. 

Andrew Schorr:

Well, of course, this program is for patients. And so, we want to include some inspiring patients with you. And so, first, I want to introduce you to, from SURVIVEiT and from Sioux Falls, South Dakota, Matt Ellefson. Matt has had quite a journey with lung cancer, and is a great inspiration to people all around the country, all around the world. Matt, thank you for joining us. And how long have you been living with lung cancer now?

Matt Ellefson:

First of all, I’m very glad to be here, Andrew. And I’ve been living with lung cancer, stage IV lung cancer, that is, for seven-and-a-half years.

Andrew Schorr:

Whoa. And it started with a cough, right?

Matt Ellefson:

It started with a cough, and then it turned into coughing up blood. And my prognosis was very grim. I was given eight months to live. And now, here I am, almost—I’m working on my eighth year of survival, and I’m just very grateful for that. And I’m really grateful to pass on how I was able to do that, and this great panel of experts that are here today that are gonna talk to us about their viewpoint on how to survive cancer. 

Andrew Schorr:

Right. And we’re gonna learn more about—you’ve been in clinical trials, and we’ll talk about that along the way. You’ve had genomic testing. We’ll talk about that along the way. Okay, so I’ve gotten to cover sort of as a medical reporter, some of the lung cancer meetings, the World Lung meeting. There are others that happen throughout the year and around the world. 

So I think let’s start with an update for patients affected by lung cancer and their family members to kind of get the latest on what the news is and research in learnings about lung cancer and diagnostics, and what it means for patients. Dr. Spira, I want to start with you. And from Virginia Cancer Specialists, sir, tell us about what you see, how you see the landscape changing, and what it means to people knowing that there are different types of lung cancer. But maybe first overall, and then if you want to call out specific progress that you think is particularly meaningful.

Dr. Spira:

Sure. So, I think one of the things that we really learned in the last 12 to 36 months, and ASCO this year is no exception, is that lung cancer continues to be multiple different subtypes. So we’ve gone many years from just non-small cell to squamous and adeno. But the tumor subtypes, looking at genetic mutations the drive a lot of tumors, EGFR was the first one. We have out mutated lung cancer. We have BRAF now.

We have RET mutated. We have MET amplified, MET mutated. So, I think the biggest take-home message is the importance of looking at the genetic analysis of tumors, getting enough tissue to analyze tumors, and really trying to define the right drug for the right patients. At this point, not every patient is going to have a specific subtype. We’re learning more and more as time goes forward.

Andrew Schorr:

All right. Well, thank god there’s progress in lung cancer. So, Dr. Bruce Johnson, you’ve been a research in the field. Like Dr. Spira, you’ve been devoted to it your whole life, and you helped lead the research program there. And of course, you have a mission now as president of ASCO so that as we learn about these different subtypes—and Dr. Spira just said it—so patients can get what’s right for their version of lung cancer. Tell us about the mission of so-called precision medicine. Where we are with it today, how precise is precision medicine in lung cancer, and how does someone get it wherever they get there?

Dr. Johnson:

I want to start giving a little bit about how this has evolved. Both Dr. Spira and I have been at this for a while. And this began to change about a little bit longer than a decade ago, when I was proud to be a member of one of the teams that discovered the genetic changes or the mutations in one of the genes called the epidermal growth factor receptor. Its normal function is to control the growth of skin and other areas that line your lungs and gastrointestinal tract. And we learned, starting in 2004, that you could give a pill instead of chemotherapy, and it’s present in about 10 or 15 percent of people that have adenocarcinoma. It’s among the most common type of lung cancer that Dr. Spira talked about. And then, as he mentioned, it’s going on from there, where we’ve added additional genes.

The ones I think that are pretty critical to test for now are ones where there are approved drugs. And so, the ones that I think are particularly critical that almost all of our patients who have lung cancer should do is to be tested for four that have genetic changes where there’s approved drugs, and that’s mutations in the epidermal growth factor receptor, EGFR. The second most common is one called a rearrangement of a gene called anaplastic lymphoma kinase. Now, we’re talking about lung cancer here, so the anaplastic lymphoma kinase was discovered in a lymphoma initially in childhood cancers. But it turns out it’s also rearranged in lung cancers in about 5 percent. And there is a number of agents for that. And in a little bit, we’ll talk about what we learned at this year’s meeting.

And then the third one, that has already been mentioned, is one called ROS1. And that makes up about 1 percent. So, it’s sort of coming in smaller increments, going from 10 to 15, five percent, one percent. But when you add those up, you’re getting close to 20 percent. Then, as Dr. Spira mentioned, the latest one that’s likely to be approved soon is one that we’ve known as effective treatment in melanomas, and that’s a gene called BRAF that’s mutated in another one percent. And we anticipate that it’s likely gonna have approval. So those are four different genes. Now, we’ll come back in a minute about the impact of immunotherapy, both from a patient perspective as well as those of us that work in the field.

Andrew Schorr:

Dr. Spira, so you have research going on that you help lead at the community level throughout the country. So, the question is, who should be tested when? It sounds like there could be a zillion genes. I don’t want to say a zillion, but I know there are many more genes that you don’t know are actionable now. So what are you saying your program now as far as who to test and when?

Dr. Spira:               

We recommend testing of everybody, certainly with adenocarcinoma. Those tend to have a much higher predilection to be driven by one of these mutations. We call them driver mutations. I actually test almost all my patients, because you never know what you’re going to find. As you heard from Dr. Johnson, there are about four basic ones that we can see. There’s a smattering of other ones, which are either on guidelines, commonly known about, or you can actually find clinical trials. And these are—for example, there’s one on CMet called a skipping mutation. And even though it’s relatively rare, it has been seen, and there’s a lot of clinical activity. So I pretty much test all my patients right now with lung cancer when we can get enough tissue. Everybody does things a little differently.         

Certainly, the basic ones that you see make up the majority, those should be tested in everybody. But I think a lot of us are now migrating to testing those things that we have out there that’s about five to 10 genes currently.

Andrew Schorr:

Now, Dr. Johnson, so what do you say about testing? And I know that still—I know there have been surveys that still, throughout the country, a lot of people aren’t being tested. And I know there are issues about whether insurance will pay for it. There’s a lot of stuff. But what are you hoping can be accomplished in the cancer treatment world to help people know what they’re dealing with and whether it’s actionable?

Dr. Johnson:       

We think it’s pretty critical. And one of the things that we’ve done at both our centers and all the major centers is for a decade, we’ve been testing for multiple for at least 10 different genes. And it’s now expanded in 2013 to somewhere between two and 400. Now, once of those is a for a very practical reason, and that is that each additional test that you do, if you’re doing it sequentially, you have to retrieve the tumor tissue. Have to send it off for testing. And what you want to do is try to be as comprehensive as possible with the initial test. And one of the things that’s offered, there’s a large number of commercial providers, including one of the sponsors to this, that will do these very large hundreds of gene panels.

And one of the things that is difficult to predict is which of these is gonna be an effective target? As Dr. Spira mentioned, one of the ones, and one of my colleagues, Dr. Awad, has published a number of articles on, what Dr. Spira described as exon 14 skip mutations of MET. And there are effective drugs for it. And I just had a patient over the past week who was tested several years ago when we didn’t know the association was a predictive marker of the benefit of the drug. And it was buried in the other material that we didn’t know, and we were able to identify it for the patient and consider that targeted therapy. So we think that you should have a brought panel. You should test everybody with adenocarcinoma. B) you never know which of these is gonna be informative, not only now, but into the future. 

Andrew Schorr:

Right. I want to just go to Matt for a second, and then I’m gonna introduce you to another patient who’s very inspiring. Matt, so you’re a big believer that people, knowing that sometimes lung cancer, biopsies, tissue, that’s precious stuff that you want, you would urge patients to see if they can be tested and be tested for a broader panel, just like Dr. Johnson was describing, correct?

Matt Ellefson:

Exactly, Andrew. And the reason that I believe that so strongly is you never know when you’re gonna be able to get that opportunity again to test. And I’ve been in that position where the metastases or where the recurrence has occurred is a very invasive surgery, to be able to grab a tissue sample. And I wasn’t well enough as a patient at that time to really undergo a major surgery like that to get the biopsy.

And so, if I hadn’t have known—hadn’t have had a complete panel, it would have limited my medical team that I was seeing, my team of oncologists who would have limited their knowledge and their abilities and the tools that they had available to be able to help me. And then the other thing that comes into play is—and I would hope that both Dr. Spira and Dr. Johnson would explain this in more detail—but another thing that we’re hearing more and more about are drug cocktails, where I, for example, have the ALK rearrangement, but I also have another gene that they feel may be contributing to my cancer in some way that has an approved therapy for breast and ovarian cancer, but not for lung cancer. And so, if I did an off label drug cocktail of the two drugs, then that may be beneficial to me. 

But this is all relatively new, so I’m really excited to hear what Dr. Johnson and Dr. Spira have to say about this, because I think it’s really important. I think it’s not only important to get that comprehensive diagnostic testing immediately when you’re diagnosed or to set your baseline, but also as you have recurrences, if you have the ability to go in and get another biopsy without harming the patient or making his or her condition worse, I think that’s also very important, because things change over time.

Andrew Schorr:

Right. I wanted to bring that up with Dr. Spira. So, Dr. Spira, we have people who may be newly diagnosed who are with us. And so, you’re talking about testing. But hopefully, people live longer on their journey with lung cancer. So can these genes mutate, change, and so there’s a reason to do a testing again at some later time? 

Dr. Spira:

Absolutely. We already have a great example for that. As Dr. Johnson talked about, the EGFR gene, people start with one typical mutation, and patients develop the secondary mutation in that. And we thankfully have an FDA-approved drug called osimertinib (Tagrisso) that can target that as well. So, absolutely. You also learn a lot. You also might learn when a drug is not working, and how far to push things as well. So, it’s also important to know when to switch to a different drug also. So, absolutely, we are getting routinely follow-up biopsies in our patients right now. And it’s challenging, because a biopsy, as Matt said, is an invasive procedure. But it often can provide very helpful information to us. 

Andrew Schorr:

Okay. One other question about studying the genes that may be at work. So, in the last year or so, we’ve had the development of liquid biopsies, testing from the blood.

So, where does liquid biopsy, Dr. Spira, fit in now with testing the actual tissue?

Dr. Spira:

So liquid biopsies have really revolutionized a lot of what we do. They’re not perfect in all patients, because obviously, in the blood, you’re only measuring what you can measure in the blood. You’re not measuring the tumor, per se. For those of you who don’t know what a liquid biopsy is, it’s essentially a blood test where we’re taking a sample of the blood and relying on a tumor to shed either DNA or RNA that you can measure in the blood. So it’s been a great help for patients. I’ve had many patients where we couldn’t get a biopsy, or the biopsy didn’t show something, but you can actually measure it in the blood. And a blood test is certainly a lot easier. The only challenge is that if you’re not knowing something, you don’t know if you’re not showing something, because you don’t have it, or because you just don’t have enough tumor specimen to measure in the blood. But it’s been a great thing, and we do it in our patients routinely now.

Andrew Schorr:

Okay. So, Dr. Johnson, I don’t want to forget. We’ve mentioned adenocarcinoma. We talked about non-small cell lung cancer. There’s a minority of lung cancer patients who have what you call small cell lung cancer. And we were talking about sort of cancer news. Is there some news in progress for them? 

Dr. Johnson:

Small cell lung cancer was the first type of lung cancer I worked on when I began my training in 1982. And one of the things there was great promise, the first article I ever published was on people who survive five years or longer after getting treated for small cell. And actually, some patients are cured with conventional combination chemotherapy. That was known back in the 1980s, and there was great hope. One of the things that’s been relatively complicated is that after they did a rather systematic genomic characterization of small cell lung cancer that was published about two years ago. There are not very many genes that are effectively targeted that you can identify by doing the comprehensive panels and doing comprehensive sequencing of those specimens.

There has been—there are two important potential advances that agents that are still in trial. One is called Rova-T. It’s a recombinant molecule that’s directed against—and when I say recombinant molecule, what they do is they take an antibody. That’s a molecule that recognizes a specific epitope, or a determinant on the surface of the small cell lung cancer cells, and they covalently link it to a poison or a toxin. So it becomes kind of a magic bullet that’s targeted there. And about 40 percent of the patients who get this who have lots of the stuff on the surface of the cell that this agent is directed against will have their tumors shrink. And it’s now being tested in a large trial.

The second one that’s being tested a bit more widely is another molecule that’s similar to that. And the stuff that’s on the surface of the small cell lung cancer cell happens to be called somatostatin. And this particular agent also binds preferentially to the small cell lung cancers, and can help target it and get this poison. And we’re waiting to see. That one’s in a bit earlier trials. But certainly, the experimental evidence that this could work is pretty compelling.

Andrew Schorr:

Mm-hmm. So, Dr. Spira, so you helped run a research program. So the title of our program is talking about tomorrow’s medicine today. So people have been in trials, and I’ve met them, where they were, quite frankly, near death, and they had a remarkable resurgence, if you will. And Matt’s been in trials. 

So, as Dr. Johnson is talking about what’s in research or even early research, like you do Phase I trials, what would you say to people about considering being in a trial with the pace of research that’s going on?

Dr. Spira:

So the only way we get better treatment is by doing clinical studies. I mean, that’s kind of the bottom line. Occasionally, you hit home runs. And a lot of these targeted therapies, many of my patients, and I’m sure Dr. Johnson’s patients, got when they were on a clinical study. You may have had a hint of activity. You may have had no hint of activity, and it just made sense. They are great options for patients that want to participate. They’re great options for patients who run out of options. I mean, despite our great advances over the last decade, many of our patients still run out of options and are looking for something better. And that’s what they were all about. It’s either gonna be new drugs, new combination immunotherapies, new combinations of targeted therapies.

But for those patients who are interested, it’s a wonderful opportunity to help fight their cancer, and of course contribute to science as well. 

Andrew Schorr:

Okay. Now, Matt, you’ve been in clinical trials. I have too for blood cancers, but you’ve been in for lung cancer. What would you say to people about that? I mean, a lot of people say, look, is it a gamble? Maybe there’s been a standard therapy that maybe has worked for people, and I want to stick with it, or what would you say? And what was your decision-making about being in a trial? Because a lot of people and family members are afraid of it.

Matt Ellefson:

You’re absolutely right, Andrew. A lot of people are afraid of it. And what I would tell them is not to be afraid of it, because in today’s day and age, it’s a lot different than it was 20, 30, 40 years ago in a clinical trial, these trials are run very, very safely.

They are oftentimes run in a drug or in an environment where they have an enormous understanding of how this medicine or this drug had performed previously in the lab, and they’ve had some really compelling results with that. And so, it isn’t as big of a risk, I believe, than it was many, many years ago. It’s more like now they’re zeroing in on things, whereas before, some of those clinical trials were more like a shotgun approach. Today, they’re more like a rifle approach. And I wouldn’t hesitate one bit to enter in another clinical trial. They’ve been quite—I’ve done really well with them. And as a matter of fact, I believe that they’ve saved my life twice, and I’m very grateful for the work and the innovation and the research that’s going on by all these doctors and large cancer centers. 

And I’m just grateful to live in a place in America where we have access to clinical trials, because so many people don’t. And we really need to take advantage of those.

Andrew Schorr:

So, Dr. Johnson, you’re at a big NCI comprehensive cancer center. Dr. Spira, you’re one of the leaders throughout a whole community oncology network throughout the country. Increasingly, there are trials offered not just at your clinics in Virginia, but with some of your peer clinics around the country, right? And that’s something that people can inquire about, correct?

Dr. Spira:

Absolutely. And there’s a lot of oncology research, not just at the big NCI-designated centers, as you said, but at a lot of community-based places as well, which is nice for patients so they don’t have to travel if they want to do this.

Andrew Schorr:

Okay. All right. Well, let’s go on. And you mentioned it along the way, Dr. Spira, and I want to ask Dr. Johnson about it. And that is, you were talking about immunotherapy or immuno-oncology.

Let’s face it, there are TV ads on now that probably many people in the lung cancer community have seen and said, does that apply to me? So, Dr. Johnson, first, a little bit of a science lesson. What do we mean when we say immunotherapy, and how do we know who it applies to?

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.

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Page last updated on April 3, 2019