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.

Dr. Johnson:

So, immunotherapy—and what we’re talking about has been tried for decades in cancer. And one of the things that was pretty disappointing up until about two or three years ago is the times at which it worked in cancer, and in particular lung cancer, were pretty meager. And one of the things that we began seeing two or three years ago was patients who were beginning to respond to the therapies. And one of the things I say to my patients is that it’s one of the few times it’s relatively good to have smoked, in that people who have smoked cigarettes are actually more likely to respond to it than people who haven’t.

And the reason we think that’s the case is because the immunotherapy is working against mutated products in your cancer that aren’t present in your normal tissues. And one of the ways that cigarette smoking causes cancer is it causes your normal genes to mutate. And that’s what makes it become a cancer. And because 85 percent of the people who get lung cancer are people who have either smoked cigarettes in the past or are current smokers. Now, one of the things we began seeing is, in people who’d been heavily pretreated, we began seeing a few responses. And then the randomized—the studies that studied giving chemotherapy versus immunotherapy were published about two years ago, and became more widely available in the last one to two years. And it gave another option.

And there are two things that are pretty incredible about the immunotherapy.  And that is that there’s a subset of people who not only respond to it, but it looks like it’s going on for years. Julie Breamer has been one of our leaders from Johns Hopkins. And she updated the data at our national meeting, and showing there’s in between ten and 20 percent of the people are alive at three to five years, which is pretty unusual for advanced lung cancer, which both Matt—which Matt Ellefson has pointed out to us. The part that has, to me, is the biggest change in lung cancer is the initial treatment. And one of these types of immunotherapies, and as you mentioned, it’s also advertised on television, is called Keytruda, or pembrolizumab.

And in that one, if you study the tumor and find out that more than of the cell have a marker associated with high levels of response to pembrolizumab, you can get that as an initial therapy instead of chemotherapy. And in those patients, say, a little longer than if you got chemotherapy. And that’s one of the things we now test our patients for. And as Dr. Spira said, we break this down into different subsets. Those that are greater than 50 percent, and the marker’s called PDL1. Those that are greater than 50 percent PDL1 positive should get immunotherapy rather than chemotherapy because they live longer. We’re also hopeful that these are also the patients that are gonna—we’re gonna see a subset of them have long-term survival when we follow them longer. When we talk about—we only have about three or four years of follow-up with these patients, so we’re waiting to see what happens as this matures.

Andrew Schorr:

Let’s meet somebody. So I wanted to introduce another patient. And your comments now about immunotherapy are very appropriate. Joining us from Northern California is Don Stranathan, who has just had his 35th infusion of one of these immunotherapies. In your case, it was nivolumab (Opdivo), right? Don, thank you so much for joining us. How long have you been living with lung cancer now? 

Don Stranathan:

Since 2009, June of 2009, the 23rd. So, next week’ll be eight years. 

Andrew Schorr:

Wow, wow. And good for you, Don. And then you’ve been having this immunotherapy. How has it been for you as far as side effects or just managing it going on with your life?

Don Stranathan:

I’ve been very fortunate. I was on a targeted TKI erlotinib (Tarceva) for six years, and then I went on and got genomic sequencing when I had progression in 2015.

So I found out I had no driver mutations, no EGFR, no ALK, and got a second opinion, and it was suggested that because I was a former smoker, I had moderate expression of the PDL1, just over 1 percent. But those factors, they thought I’d do very well. And just had my 35th infusion yesterday, and still have stable disease. The only side effect is I’ve had some thyroid issues, and I’m on a thyroid medication. But that’s under control.

Andrew Schorr:

Right. I should just mention one thing. Two things with Don. One of them is, if you have a question, it’s gonna go to Don. Send it to questions@patientpower.info. And I don’t mean to trivialize it. Don’s sort of gonna be our Vanna White. We’re gonna go back to him, and he’s gonna give us questions from the audience—so questions@patientpower.info.

One thing about Don is, Don, you fell in love with someone you met through an online group for lung cancer, Penny. And that made a big change in your life. I know she passed on a couple years ago. But that was not only your long life, but it led to love as well, and I think that’s a remarkable story.

Don Stranathan:

Yeah. And I’d like to thank Dr. Johnson. I was just featured this issue in the ASCO Post. They ran my story on how Penny and I met on social media, so, yeah. That’s been my passion, to advocate for lung cancer. That was my last promise to her, that I’d continue to advocate for more research and awareness of lung cancer.

Andrew Schorr:

Right, right. And as we saw with Penny, unfortunately, too many people pass on. So, we’ve gone through some of the science. We’re gonna come back and do more. But, and Don, we’ll hear more from you along the way as people send questions at patientpower.info. And we have some that have come in. 

Matt, so, we talked about testing. We talked about trials. You have a lot of wisdom, as you’ve lived with this over the years. And we’ll ask Don too. What are some pointers that you would say to people as this science is changing? Is it immunotherapy? Is it these mutations? ALK? EGFR? BRAF may show up, and there are other ones that Dr. Spira said they’re identifying, and all the ones that Dr. Johnson said they’re testing for so many more for the future. So, wherever you are, if you’re in Sioux Falls,— South Dakota. If you’re in Carlsbad, California, where I live. If you’re in Philadelphia, where I am now, what should people—what kind of discussions should they be having with their doctor?

Matt Ellefson:

I think, Andrew, that’s a great question. And I think first and foremost, people need to ask to have their tissue tested for genomic sequencing, genomic profiling, whatever you want to call it—it’s the same thing—to find out just what is driving their cancer, if possible.

Because it’s really hard. It doesn’t matter what we’re doing. We can’t fight an enemy until we know what the enemy is. And once we understand what it is that’s driving the cancer—and sometimes, I realize sometimes you aren’t gonna be able to find that out. But I think in most cases, they do identify something. And that provides that patient with the opportunity to get on a drug therapy that is tailored just for them. And it’s what precision medicine is all about, as opposed to when I was initially diagnosed, they were still treating patients with different chemotherapy infusions, and it’s not that those aren’t effective. Those can be. But that again is kind of a broad-based approach based on the amount of patients that respond to that type of chemotherapy for that particular type of cancer.

Whereas now, when we go into precision medicine and we’re talking about genomic profiling, genomic sequencing, we can target just exactly what it is. And then oftentimes, if some other gene abnormalities show up, the doctors and the researchers will know really what pathway is contributing the most to this cancer, and what genes are on this pathway that can also affect it in some way. And that is—to me, that is critical, because if you get on the wrong therapy right away – well, it doesn’t matter when it is. If you’re on the wrong therapy—therapies take a hard toll on your body. They really do. And over time, a patient or a human being can only—we can only tolerate so much. And our body—our organs and everything just kind of get worn out.

So it’s really important that you do that immediately right away. And if you are a patient that hasn’t had genomic sequencing, and you’ve been diagnosed with cancer for a couple of years now, it’s not too late for you to ask to have that sequencing done. And I would urge everybody to do that. The second thing I would urge people to do is get a second opinion in an academic research center. And the reason why I say that is there are so many community cancer centers around America that have great doctors. They’re doing great work, but they just don’t have the tools that some of these big academic research centers have. And they don’t see the caseload. They don’t see the amount of patients that some of these larger academic research centers have. And so, you need that experience from your medical team, especially if you have kind of a tough situation. 

If you’re a patient that has a gene abnormality that only occurs in 5 percent of lung cancers, then it’s not going to be seen very often by these community cancer centers. And some of the bigger cancer centers see more of that, and they know how to deal with it better. So, it’s worth—to me, I think that it’s worth every penny you spend on getting a second opinion and really having another team look at your case really thoroughly, a team of experts. And then hopefully, they can put together a protocol for you. They can collaborate with your doctor at home, at your community cancer center. And you can go home and have that treatment administered and delivered to you in your hometown.

Andrew Schorr:

Right. Now, I want to mention, Dr. Spira is really one of the leaders in lung cancer within a big network called US Oncology Network, and certainly the Virginia Cancer Specialists throughout suburban Washington. 

So, Dr. Spira, I wanted to ask you about two things. First of all, for the community oncologists, you’re running a research program, but somebody—and I used to go to an HMO in Seattle—that doctor had to take all comers. And now we’re talking about the pace of change in lung cancer, melanoma, in leukemia and breast cancer. It’s hard to keep up. So, I’m sure they look to you often as a guide as well. What would you say to patients about second opinions? And I know even on our website, we’re helping people understand what institutions even give remote second opinions. Maybe Dana Farber does that, Dr. Johnson. So, Dr. Spira, what would you say about first of all being a partner with your doctor to uncover what’s right for you in a changing landscape? What comment would you make?

Dr. Spira:

So, I think, I mean, second opinions are always—everybody should welcome them, and everyone should get one if that’s what they want. 

You’re right, it is challenging. I mean, the field has changed dramatically. There are a lot of rare mutations. And certainly either going to a place that sees a lot, be it a lung cancer expert in the community, be it at an academic medical center, whatever one finds, I think, is exceedingly important. Because as you heard, you’re right. There are super rare mutations, and there are things that you never heard of before. And there are lots of rare things you should be thinking of and just asking the question. I think remote second opinions where offered are great then, as long as everybody feels comfortable with that. There is still a role with interacting with patients. I mean, we all get emails all the time from somebody, “My mother has X. What do you think?” And it turns out, the patient’s not really a candidate for the therapy. But certainly, for the newly diagnosed, that is a changing world and landscape, and I think is a nice thing for patients to have accessible to them.

Andrew Schorr:

Mm-hmm. So, Dr. Johnson, as president of ASCO now, you have thousands of members around the world, and certainly around the U.S. And many of these are community oncologists who are dealing with the change in cancer in all these subtypes. If we had 50 cancers or 25 cancers, now we have 2,500, it almost seems, or a lot when you rattle off all these genes. So what advice would you give patients today, wherever they may be, so that they get this changing science and hot it applies to them? What advice would you give?

Dr. Johnson:

Well, I think—let me deal first with the docs. One of the things that we will be working with ASCO, and one of the things that we do in the Boston area and around New England is trying to make additional resources available to the docs, both in guidance about how and when to do both tumor testing, as well as what has been called liquid biopsies or testing of the blood. 

And the second thing is that we are trying, through pathways and through other prompts, to help inform physicians about the latest drugs. So, for instance, at our latest meeting at ASCO, it looks like the drug of choice for the first-line therapy of ALK rearranged tumors that we’ve heard Matt Ellefson talk about is a new drug called alectinib (Alecensa). And one of the things we think is within our electronic medical record, you should have a prompt saying that it’s electronically populated that if you put in that the person has an ALK rearrangement, that you try to order Xalkori or (crizotinib) that you get a prompt to say, well, this publication—this was published simultaneously in the New England Journal at the same time—that you’ll have a prompt to the physician to inform him that there’s a new agent of choice for this agent.

And have it embedded within the electronic medical record. So, that’s the first thing. The second thing is that you ask about getting second opinions, and what should the patients know? The first thing is that—and one of the things that we do at our center is we offer second opinions. I do a lot of them. And the vast majority of people go back to their community oncologists. And that’s one of the reasons we stay in business. We say, well, we agree with what the doc’s doing. But if your tumor grows—because whatever they’re getting is working, we tell them, if the tumor grows, come back and see us. And the docs are pretty good about working with us, send them in. About the remote consultations, we do offer a service here.

It’s the Dana Farber Grand Rounds. And it’s www.grandrounds.com/danafarber. Now, I don’t know about Dr. Spira, but I myself, I don’t do them. I don’t like the—I’m not very comfortable dealing with video. I’ve done video consultations with two established patients over the course of 10 years, because I think it’s very difficult for the communication. Now, other docs are very comfortable with it, and other patients are very comfortable with it. But we do think it’s important for people who either don’t have the means or the time to travel, that people can access these second opinions using web-based technologies.

Andrew Schorr:

Okay. So, I want Matt—so, when you hear this, you feel that there’s a lot of power for patients.

People are terrified when they’re first diagnosed. The family’s so worried about it. Do you feel that—it takes a lot of courage to ask questions when you go before one of these doctors. But it sounds like you really encourage that in people. Have a dialogue and get informed.

Matt Ellefson:

You’re absolutely right, Andrew. And it is—it’s a time in your life where—for most people, this is the worst thing that’s ever happened to them in their life. And it doesn’t only happen to us, to the patient. It happens to our entire family. Our entire family, our friends, our whole social network of people have been impacted in a major, major way. And we don’t know what to do. I mean, nobody ever thinks cancer’s gonna happen to them. That’s something that happens to other people, or that’s what we all think. We feel bad about it, but we don’t ever anticipate that we’re gonna receive a diagnosis someday, so we don’t go around studying what should we do when we get cancer?

So when we receive a diagnosis, we’re uneducated. We’re unprepared. We don’t know what to do. Our world comes crashing down on us. Not just in our own mind, but everybody around us is also stressed out and emotional about it, which really adds to it even more significantly. And you really need—you look to a friend in your oncologist. You don’t want to also challenge him or her, because you’re already in a big challenge. So, oftentimes, patients are just nodding their head, yeah, yeah, let’s get going. Let’s get started. And to be honest, sometimes that can be the worst thing to do, because sometimes you need to be patient and make sure that all of the testing is being performed, and all of the upfront diagnostics are being performed first before you can really establish what is the best treatment strategy for me?

And that is difficult to do when you’re a patient, to have that level of patience. But I was told by my doctors initially, when I went for a second opinion, to feel free to think about it. Two weeks is not gonna make a difference but don’t take a month. Make sure you’re comfortable. If you want a third opinion, go do that. But make sure you really understand all of your options. And I would echo that to every patient out there, that it’s really important that you understand what your options are.

Andrew Schorr:

Mm-hmm. And I want to remind you that you can send questions to Don at questions@patientpower.info. And Don, you’re gonna start firing them in a minute. Dr. Spira, I wanted to ask you something. 

I mean, you don’t have your white coat on today, but I see it on the chair. But you can see how daunting it is if I come see you, or I’m referred to you, and I’m terrified. I’ve been diagnosed with lung cancer. There’s my wife, maybe my kids. We feel—maybe we’ve lost people, friends, neighbors who’ve died in short order of lung cancer. We’re terrified. Do you welcome questions? Do you welcome a partnership? And as you begin to talk about trials and we’re answering questions that sometimes are not answered yet, how do you feel about that dialogue?

Dr. Spira:

You can’t be an oncologist in this day and age and not welcome that dialogue. I mean, patients are educated consumers. The Internet is a good thing. There’s a lot of information out there. So you have to be willing to listen to the dialogue. I find it all very helpful. Lung cancer, since that’s what we’re talking about today, is complicated. It’s no more two diseases. It’s 10 diseases.

So somebody that comes in and already knows about the basic questions to ask—which mutations, why are we doing this, has read about it or seen the ads on TV—for the immunotherapy, these are all great questions, and you have to be willing to answer those questions and have a dialogue with your patients, and have a good relationship with them. So, yeah, absolutely, you have to want it, and that’s part of the job.

Andrew Schorr:

Mm. Don, I want to ask you, because I’ve been seeing you on my screen nodding your head along the way. Matt said things, the doctors have said things. For you, getting a second opinion, having an active dialogue with your doctor, considering clinical trials, knowing—having the right tests, all this resonates with you?

Don Stranathan:

Yes, Andrew. And I also work with people that are newly diagnosed. And I tell them to ask questions. Matt has an excellent 21 questions on the SURVIVEiT website. I usually point that out to them.

And I also tell them, if they’re not on social media, find a family member that can be their social media ambassador and reach out. I connect them to the different groups where they can ask questions, find out about side effects. But yes, when I was stable on erlotinib (Tarceva) for six years. But every time I’d go in there, I’d ask my oncologist, “Well, if I wasn’t, if the scan wasn’t stable, where would we go from here?” And I’ve done that over the last eight years. And when I did have progression in 2015, the first thing I did—and my oncologist was fine with it—I reached out to an oncologist at Next General for a second opinion, and ran it all by my oncologist, and they both agreed. But I think getting second opinions are important and testing. If you don’t know what’s driving your cancer, you don’t know how to treat it.

And I think, like Matt said, you need to take a little time. Because people panic, and I did myself. Immediately, I wanted to get into treatment and deal with the cancer and get it out of me. But in hindsight, I look back, and even though I’ve been I think what they call a super responder—I’ve done very well on targeted therapy, and now on immunotherapy. But I tell people, slow down, take a breath, and ask questions. Because you don’t know what you don’t know.

Andrew Schorr:

Well, you’re super in my book, Don. Thank you for that comment. Dr. Johnson, I just want to go back for a second about testing for a wider array of these mutations. So Don and I have a friend in California, Lisa Goldman, who was initially tested just for one mutation, EGFR, that you mentioned. And you were very involved in it. And then fortunately, with the help of one of the foundations, the Bonnie Addario Lung Cancer Foundation, she then was able to get a broader group of testing.

And what popped up is one of these more rare ones, ROS1. And there’s been a medicine that she’s been getting that’s helped with that. So, if I read you right, it sounds like a broader panel of testing is a good thing.

Dr. Johnson:

As I mentioned before, there are four that have approved drugs. And it turns out the cost of getting a broad panel is not very different than what it would cost to charge for each individual test. And one of the things we’ve negotiated, and not just us, but other major medical centers here in the Boston area, is negotiate with some of the payers. And Medicare also covers panel testing now. And it’s a challenge to get the insurance companies to pay for it. But so far, and but for us, as a major cancer center, we subsidize the cost of doing it if somebody already has some testing.

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