The Proactive Lung Cancer Patient: How to Get Tomorrow’s Medicine Today | Transcript | Lung Cancer | Patient Power


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

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.

So, for instance, the—and this actually happened this week. I had somebody that had an EGFR mutation test and an ALK test in Hong Kong. And I wanted to get broad panel on him, even though he was positive for an EFGR mutation. And one of the things we do is that through philanthropy, we cover the cost, and we can order the same test that we would do in a large panel through a research fund that covers the costs. So we get them on everybody, whether we can charge people for it or not, because we think it’s critical to the management of the patients.

Andrew Schorr:

So now we’ve got to get that going in wider places. So, Dr. Spira, I imagine there have been fights with the insurance companies, right, on some of this. I mean, are you feeling positive that these, we can get more payment for these very informative tests to help more people? 

Dr. Spira:

Yeah, there’s fights with the insurance company. We’ve been dealing with that for a long time. And the payment has gotten better. It’s not 100 percent uniform. But I think by and large, through efforts like Dr. Johnson’s, and there are a lot of companies that are now doing it still, and are very willing to negotiate with payers and work with patients, we can get it pretty much on everybody without the patients having to worry about the cost. You’ve just got to know to ask it. So, that’s the good news. So, over the last 12 months, we’ve gotten it now uniformly. Whenever we can, we have tissue on any newly diagnosed lung patient.

Andrew Schorr:

Wow, that’s good news. And I should mention that my wife and I and some other partners helped found something called the Precision Medicine For Me initiative, and that’s been very involved, and some of the other advocates. And there are organizations now helping you with even 20 phone lines you can call and speak to a counselor who can help you connect with testing wherever you are.

And then what happens, Dr. Johnson, as this data comes in on patients, more of the lung cancer community, that helps you in research too, in that you begin to get insight, right? From maybe it’s de-identified. It’s not Mr. Jones and Mrs. Smith. They’re getting they’re care. But you’re pooling the data together to try to move research forward, correct?

Dr. Johnson:

Yeah. Well, one of the things that Dr. Spira brought up is attempting to get reimbursed. And one of the things I was able to work with, we’ve put together a group of about 14 leading cancer centers across the country and genotyped 1,000 patients, and then attempted to give them the targets for which they were tested for. And we published this in the Journal of the American Medical Association. Mark Chris was the first author; I was the second. And it showed that the people who got the test, and they were tested for ten genes, which is what we were testing for starting back in 2008.

And it showed that the people who got the testing of the targeted agents lived a year longer than the people who were tested and either had a target and didn’t get treated, or didn’t have a target identified. We’re attempting to do a similar analysis of somewhere around 5,000 lung cancer patients that we’ve treated at our center over the last 13 years. And I actually had a meeting about it today to take a look at what’s happened since we first started testing for EGFR in 2004, and look at the numbers of drivers that we find, and how many get targeted therapies, and if the outcomes of our patients are better. Once we generate that data, because the insurance companies are appropriately asking, can you demonstrate that this has an impact on your patients? I think Matt and Don are living proof that it does. But typically, the companies want more than anecdotes. And so, we’re working to try to generate this information, working with our outcomes people to show that this is really making a difference.

And I fervently believe it. I’ve been a believer since we found the first oncogenic driver in 2004, and we started immediately testing people, even though there wasn’t a commercial test, and thought it was critically important, and we’ve expanded it over the years.

Andrew Schorr:

Okay. Well, we’re gonna go on to our questions in just a minute, Don. And send them to questions@patientpower.info. So I always like to ask this question, because really, Dr. Spira and Dr. Johnson, you’re our barometer for hope, really. So, Dr. Spira, you’ve been at this for a while. Dr. Johnson, you’ve been at this a while. In lung cancer, do you have increased hope, based on all the science we’re starting to hear about, the genes we’re starting to hear about, the immunotherapy we’re starting to hear about, and seeing two guys here who are longer term survivors, how do you feel about the pace of change? So, if I were a new patient coming in, you obviously want to look at my situation. But would you be hopeful?

Dr. Spira:

Yeah, I mean, absolutely. I mean, the pace of change has been hard even for those of us who subspecialize and know the field, lung cancer in particular, well, it’s still hard to keep up because it’s changing rapidly. As you heard from Dr. Johnson before, you’re talking about people that are now living three and four years on these immunotherapies. We had the targeted therapy story now for a few years, but now you’re having people without these driver mutations living three, four, or five years. And there are some people that use the word “cure.” I mean, that’s a long stretch. But yeah, we never used to think about that at all. The fact that we’re bandying these about and talking about these long-term survivors is almost unheard of. And while still minority patients, we all anticipate it’s gonna get better going forward. So, yeah. Absolutely.

Andrew Schorr:

Dr. Johnson, I’ll ask your answer, and also whether some of the therapies we have now can be the bridge to what’s next. 

So for our friend Lisa who’s back in California and wondering how long her Xalkori is gonna work for her, might that be a bridge to something that you’re gonna have that comes out of the lab? 

Dr. Johnson:

I want to make a couple of comments about the great hope. The first is a personal experience. So, as I mentioned, you asked me about small cell lung cancer earlier, and I said that my first paper I ever wrote was on five-year survivors of small cell lung cancer. I work with one of our trainees, Jessica Lynn, and wrote—we wrote a paper on five-year survivors of EGFR lung cancer, which is—and it’s about the same proportion. Now, we want to see it become more, but it certainly gives us hope that we can tell people that you have a substantial chance of making it for five years. Now, five years, for us who have worked with this for a long time, they seem pretty long, but not necessarily.

The second point I wanted to make, and I’m looking at trying to do this in one of my patients who I may start on therapy next week, is that one of our principals in cancer treatment is combination therapies. And all of the things that we’ve been talking about here, and Matt and Don know this, is that we generally give one agent for the targets. The exception of that is for BRAF you give two drugs. You have dabrafenib (Tafinlar) and trametinib (Mekinist), ones that block two different parts of the pathway. But we’re now branching out in each of our mutants and doing two agents that block different parts of the pathway. And one of the things that we think, by doing combination therapies, which is one of the principals that we had to do with chemotherapy to cure people, is that we hope to be able to see these when we put together rational combinations.

Andrew Schorr:

Okay. Well, and I get this, that you are hopeful. So if I were your new patient, you’d run a panel on me. And obviously, we’d look at my situation. But would you be encouraging? You’re seeing it broadly. Can I see you smile, I guess? Can I see you pat me on the back, and we maybe have some hope?

Dr. Johnson:

So let me tell you one other anecdote that happens. One of the things I greatly admire about Matt and Don is people that get out there and talk about this. And one of the things, we had a very small group of lung cancer survivors when I started up here at Dana Farber 17 years ago. And for those of you who are familiar with Harvard, they have a big saying—have very tub on its own bottom. And it didn’t draw a lot of support. And so, we started having receptions at my home. We have a home in Brookline, Massachusetts that will hold a lot of people.

So it was pretty slim. It was 20 to 30 people when we started. But now it’s—once a year, we have about 80 to 100 people at my home, and we show the latest cancer research. And one of the things I’m unthinkably proud of is that you can’t tell who the patients are compared to the family members. You look at it, and you can’t tell. And it’s because the treatments have got it so that people can live with them, and live—we’ve heard that there are side effects to what people are getting. But people can live a relatively normal life with what we’re doing now. And for that, I’m unthinkably proud. And I’m so happy for the folks that do this. And one of the first ladies I started treating once we knew about the mutations is still going almost 12 years later. And she was one of the ones I was able to put on a combination EGFR inhibitor plus another one. And having people that are making it more than a decade from when we first observed this was something that just didn’t happen. 

It was unheard of trying to do this a decade-and-a-half ago.

Andrew Schorr:

Wow. Well, we’re gonna start with your questions, and I just want to make a comment. And I’m not part of the lung cancer community—I’m not part of the cancer community. But just listening to Dr. Spira and Dr. Johnson—Matt, I think you said it earlier. Gentlemen, just thank you and your peers for all you do, and all the people in labs, and the people that participate in clinical trials, for really leading to encouragement in increased survival, for not everybody, but more and more people. Thank you so much. Okay, Don. You are on, so let’s start with the questions. You got a good one? 

Don Stranathan:

Yes, Andrew, thank you. There’s a number—I want to thank everybody that sent in questions. We have about 20 of them so far, and only a couple are directed specifically to Dr. Johnson or Dr. Spira. 

So if I pose a question, it’s usually to the general panel, but I’ll let you know if somebody asks it directed to Dr. Johnson or Spira. The first question—and I’m gonna take them as they just came in, because those people I know are definitely here on the call. The question’s from Karen for the panel. We’ve been talking a lot about precision medicine and knowing your driver genes. There remains a lot of us who have no known drivers, even after testing. What do the doctors recommend to us, and how do they determine the best course of treatment for us? What kinds of clinical trials are available to patients in these circumstances?

Andrew Schorr:

Dr. Spira, do you want to start with that one?

Dr. Spira:

Sure. We all get excited about these driver mutations, the ones we know about, the ones that are still evolving. It’s still a large majority of patients will not be eligible for those, just because they’re—at most, they make up about 40 percent of patients, looking at all of them.

What you want to be asking is, am I a candidate for immunotherapy? You want to be asking about what’s called your PDL status. We all hope, by the way, there’s gonna be a better test for that than we are using currently in the next few years. If you’re interested in a clinical study, you want to ask, is there one for me? Is it convenient? Do I want to do it? How much more time is it going to involve? What are the risks? I personally think everyone should be asking for a clinical study. At the best we have, our treatments are still not good enough. So, if there’s something that makes sense, yeah, you want to be asking about participating in it. Many of our patients still get chemo. Chemo’s gotten a little bit of short shrift, but in all oncology practices, most of our patients still will be getting chemotherapy now and for the foreseeable future as well, and there’s nothing wrong with it. Chemo by itself has actually gotten a lot easier as well. So don’t be discouraged, disappointed, angry or anything. Just make the best of it that you can. And again, if there’s a clinical trial, ask about it. 

Andrew Schorr:

Dr. Johnson, your comment when no gene seems to be observable?

Dr. Johnson:

The stuff I have to add to what Dr. Spira said is—number one is, I think you have to be mindful that there’s no identified oncogenic driver, or there’s no driver mutation that we discovered that we have a drug for at this time. And as Dr. Spira said, chemotherapy is effective, and a number of our patients have lived long enough on conventional treatment that there’s enough scientific progress that an effective drug is discovered for the driver. So, for instance, at this year’s ASCO meeting, there’s a new one that takes place on lung cancer in a percenter cell called MTROK, M-T-R-O-K. And there were no effective drugs, and it turns out there’s a drug made by a company called Wakso that works in 75 percent of the tumors. So that was something that we didn’t know until this meeting.

And so, I’d like to emphasize that just because you don’t have one at the time you’re diagnosed doesn’t mean it won’t become available when we use other treatments. The second thing is that—and one of the things I try to do is that, as Dr. Spira mentioned, you want to have the PDL1 testing, because some of the people can get treated with immunotherapy. The other thing I try to do with almost all my patients who don’t have an identifiable driver is to put them on combination immunotherapy agents. There are classes of agents called IDO inhibitors, and there’s other DNA modifying genes that we try to do where we think it’s gonna be active in ones that we aren’t 100 percent confident that a single agent’s gonna be real healthy.

Andrew Schorr:

Okay. Thank you. Don, got another one?

Don Stranathan:

Yes. Nicole asked about EGFR mutations for people. Is there any new research or clinical trials through EGFR?

Former smoker, and she’s heard that the immunotherapies don’t work as well for people that have the driver mutation EGFR.

Andrew Schorr:

Hmm. Dr. Johnson, you talked about that a little bit when you were talking about smokers before. So, can immunotherapy work, but if you also have EGFR?

Dr. Johnson:

Well, I think Dr. Spira mentioned before, the three approved agents for EGFR mutations at the current—as initial therapy are pembrolizumab (Keytruda) and afatinib (Gilotrif). Those are the three agents. And as Dr. Spira mentioned before, when those quit working, the most common reason they quit working is they get something that you can pick 75 percent of the time in the blood, and the rest of the times, in the tissue, they get something called a T79DM mutation. In that group, there’s a second drug called osimertinib (Tagrisso). 

Now, one of the things that people are attempting to do now is putting together combinations of EGFR inhibitors. And the two leading candidates of giving combinations are including a class of drugs called MEK inhibitors and MET inhibitors, with the hopes that they’ll work longer. The other thing is, this year’s ASCO meeting, there was a new drug called dacomitinib that looks like it may work about 50 percent longer than one of the approved agents, afatinib. And we’ll be looking to see if that’s gonna break into this initial therapy more frequently, given that it’s a bit more side effects, but it looks like it may be more effective. So, that was a new event at ASCO this year, and it’s a drug made by Pfizer.

Andrew Schorr:

Wow. So, Dr. Spira, as we hear about this, I mean, it sounds like alphabet soup to us patients. Very complicated and changing, happily at a pretty good rate. 

Are the guidelines changing too, so that wherever you go to the doctor, you can get a second opinion, but that there’s greater understanding of how this changing landscape could apply to me?

Dr. Spira:

Yeah. I mean, the guidelines are changing. As soon as something happens, the guidelines change, where appropriate, pretty rapidly. Everybody’s got a desire to get the best drugs out to patients. So the guidelines do change, and they do adapt pretty darn quickly where we can. So everybody’s pretty much on top of everything. You’re right, it is alphabet soup, though. And you tell a patient they have cancer and they’re progressing, they don’t hear the next five sentences you’ve said. So, take notes, write stuff down, and go to one of these advocacy groups, whichever one it is. There’s a lot of good information that anybody can read out there, and take doctor speak and alphabet soup and really drum it down for those times when you’re just not able to grasp it all. 

Andrew Schorr:

Right. I want to ask Matt for a pointer about that. How have you and your family—you’ve got five kids, and they all worry about you and your wife, Melissa, I think? 

Matt Ellefson:

Yes.

Andrew Schorr:

So how have you demystified this? Now you’ve been at this several years. Dr. Johnson and Dr. Spira are scientists, really, and they’re mentioning all these things. It’s hard to keep straight. So, how can a family try to get ahold of it, if you will?

Matt Ellefson:

That’s a great question. The number one thing, our family has very strong faith, and that really carries us through a lot of things in a big, big way. But also, what I do, and I recommend other patients to do, is I always want to think beyond my current situation and find out what my next options are so I have that plan B in my back pocket at all times. And I don’t give up looking until I find that plan B. 

Even though I could be NED at the time, which I was for quite a while… 

Andrew Schorr:

No evidence.

Matt Ellefson:

Yeah, no evidence of disease under crizotinib (Xalkori), I was still looking and following and seeing, okay, what’s next? Because I knew there would be a day where I’m gonna develop resistance. And so, I would encourage everyone to—you never stop looking at what your next option’s gonna be. Follow close enough attention, either by joining an advocacy group—I love what Don had mentioned. There’s several social media groups. SURVIVEiT has SURVIVEiT Lung Group that has about 500 survivors on there right now. New patients come on and ask questions, and survivors provide their experience to them. It’s just a great way to learn, because it’s really difficult.

Dr. Johnson and Dr. Spira both know that they have limited time to educate those patients. And 20 hours in their office, or 30 minutes, or whatever—I mean 20 minutes, not 20 hours—20 or 30 minutes in their office isn’t enough time to go through your scans and all your test results, and then also educate what’s coming down the line that you should be looking out for. And so, oftentimes, you can get a lot of great information from other survivors that have been down that road and are a little bit farther down the road than you currently are.

Andrew Schorr:

Right. I just want to mention this. You are not alone when it comes to lung cancer. There’s Matt, our friend Nicole Russell in North Carolina. Don refers to you as the Godfather among patients. Janet Freeman-Daily and some of the other folks have the lung cancer social media group. 

There’s ROS1 group, there are EGFR groups, there are othergroups. Get connected. Now, that doesn’t mean that other person’s situation is exactly yours. So you want to check with the medical team and really apply it to you. But there’s a lot of support that you can get. Okay, Don, let’s go to another question.

Don Stranathan:

Okay. We’ve covered this quite a bit, but Lisa asked—she’s EGFR, has exhausted all of her targeted therapies. She’s asking if immunotherapy should be her next consideration.

Andrew Schorr:

Mm. Dr. Johnson?

Dr. Johnson:

I think one of the things that we’ve heard before is that it turns out, if you have had an EGFR or an ALK rearrangement, the two most common drivers in lung cancer, immunotherapy taken in its totality is less likely to work than those that have a squamous cell lung cancer once it doesn’t have the drivers. 

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