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.

Encore: Facing a Lung Cancer Diagnosis

This podcast was originally published by Cancer Support Community on November 17, 2015, here.

“Being empowered is choosing to adopt actions, behaviors, and attitudes that can help you regain a sense of control over your treatment and life with cancer,” excerpt from Frankly Speaking About Cancer: Lung Cancer. Part of being empowered means learning all you can about your specific type of cancer—what it is, how it affects your body, how it’s treated and what you can expect during diagnosis, treatment and beyond.

 

Frankly Speaking About Cancer: Join host Kim Thiboldeaux, President and CEO of the Cancer Support Community, for a weekly radio broadcast empowering listeners to live well with cancer. Every Tuesday, 4PM ET (1PM PT)

Support For Those With Lung Cancer

This resource was originally published by Cancer Care.org here.

Get Support

Counseling

Oncology social workers help you cope with the emotional and practical challenges of lung cancer. Contact us at 800‑813‑HOPE (4673) or info@cancercare.org.
Learn more about counseling.

CancerCare has partnered with LUNGevity, the nation’s leading lung cancer-focused nonprofit organization to provide the LUNGevity Lung Cancer Helpline: 844-360-LUNG (5864).

Financial Assistance

Find resources and support to manage your financial concerns. Limited assistance from CancerCare® is available to eligible families for cancer-related costs.

Support Groups

Connect with others in our free support groups led by oncology social workers.

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If you live in New York, New Jersey, or Connecticut, learn about and view the full calendar of our free community programs.

Find Information

Ask CancerCare

Every month, featured experts answer your questions about coping with cancer. View all questions and answers.

LUNG CANCER
  • Q.

    My 68-year-old husband was diagnosed with lung cancer in 2004, had radiation and chemo, and is currently in remission. Since ending his treatment, his personality has changed drastically and he directs his anger towards me. Can chemo affect a person mentally?

    More…

  • Q.

    My husband has just been diagnosed with small cell lung cancer with small tumors in his liver. He starts chemo next week with 4 hours, day 1 and 2 hours, day 2 and 3. He repeats this every 18 days for six sessions. Is this the normal treatment for small cell lung cancer? Where would I look to find information on clinical trials?

    More…

  • Q.

    How can I breathe with a lung after the pneumonectomy? Is there anything I should be doing?

    More…

  • Q.

    My sister has stage 4 non-small cell lung cancer as well as tumors in her liver. Are there two different chemotherapy treatments for both the lung and the liver or are they treated with the same drugs?

    More…

  • Q.

    My best friend’s husband has just started chemo for lung cancer but refuses to quit smoking. This is driving a huge wedge between the two of them. Does smoking impact the effectiveness of the chemo?

    More…

View All (10 more)

Stories of Help and Hope

Read inspiring personal accounts from people affected by cancer and the ways they’ve found to cope.

Know What Your Doctors Know: Non-Small Cell Lung Cancer

This video was originally published by National Comprehensive Cancer Network on December 17, 2018, here.

Why Getting a 2nd and 3rd Opinion Made a Difference In Her Cancer Treatment, With Sasha Denisova

This podcast was originally publish on WE Have Cancer by  on May 7, 2019 here.


Sasha Denisova – WE Have Cancer

Seeking out a 2nd and 3rd opinion in her cancer treatment resulted in a dramatic improvement in Sasha Denisova’s quality of life.

Sasha first appeared on this podcast in Episode 83 where she shared the struggle she faced getting doctors to take her colorectal cancer symptoms seriously.

During our latest conversation she discussed why she made the decision to forego treatment at the Mayo Clinic in Minnesota to seek treatment at Memorial Sloan Kettering in New York City. We also discussed:

  • How she got the courage to challenge the initial treatment recommendations made by her doctor and why it’s important for everyone to advocate for their best care.
  • The importance 0f seeking out opinions from the top rated cancer facilities in the U.S.
  • How she eased herself back into working out in the gym and why working with a guided fitness instructor was important.
  • Why exercise is vital to her well-being and how most cancer patients can find an exercise routine that works for them.

Take Control Of Your Care When You’re Seriously Sick via NPR

This podcast was originally publish on NPR by John Henning Schumann, Mara Gordon, and Chloee Weiner on September 7, 2019 here.


Finding out you have a serious medical condition can leave you reeling. These strategies from medical and lay experts will help you be in control as you navigate our complex health care system and get the best possible care.

Here’s what to remember:

1. Your primary care doctor is the captain of your health care team.

With any serious diagnosis, there will usually be more specialists to see. Having a primary care doctor you trust helps coordinate the information flow and keep track of the big picture. Your primary is on her toes for possible medication interactions. Regular preventive measures shouldn’t be overlooked, either.

2. Don’t be afraid to get a second opinion.

If you’re offered treatment such as chemotherapy or surgery that can be life-altering, it’s crucial to get more than one opinion, ideally from a doctor working for a different institution. Oncologists and surgeons expect patients to seek second opinions — many provide them as a major part of their practice. If your doctor resents you seeking more opinions, that’s a red flag.

3. Get organized, stay organized, and find someone to help you if you can’t do it yourself.

Make a list of what you hope to accomplish at the doctor’s office. If for some reason you aren’t able to take notes, bring someone along who can act as an advocate and make sure your concerns aren’t overlooked. Ask for copies of your medical chart and test results so that you are part of the conversation — you have a legal right to see your records.

4. If you need a procedure, go to someone who does it all the time.

It’s true for medical care as it is in life: The more a doctor does a procedure, the better at it she’ll be. This means fewer complications and better outcomes. It’s OK to ask your doctor how many times she’s done a procedure; a high volume means competence when things go as planned, and calmness for unforeseen complications.

5. Use the Internet, but use it wisely.

Contrary to what you may think, your doctor wants you to be well-informed and engaged with your health. There’s more medical information available online than ever before, but a lot of it is garbage. Stick with trusted sources like the National Library of MedicinePubMed.gov, or learn about and use the U.S. Preventive Services Task Force.

6. Figure out what matters to you, and fight for it

Our default setting for health care is that more testing is always good. But that’s often not the case, as tests have side effects and can cause undue anxiety because of false positives or incidental findings. Have a frank conversation with your doctor about your values and what you want (and don’t want!) and you’ll be an empowered patient with a doctor as your advocate, not your adversary.

Learning How to Simplify Cancer With Joe Bakhmoutski

This podcast was originally publish on WE Have Cancer by Lee Silverstein on June 18, 2019 here.

Joe Bakhmoutski – WE Have Cancer

Joe Bakhmoutski was diagnosed with Testicular cancer in 2016.He founded Simplify Cancer  to provide support and advice to those touched by cancer. During our conversation we discussed:

  • Why he created Simplify Cancer
  • How he came to be diagnosed with Testicular cancer
  • How people perceive various cancers and how some are deemed “embarrassing”
  • What patients can do to prepare for their first oncologist appointment and the free tool he offers on his website to assist with this.
  • The book he’s writing to help men dealing with cancer.

Links Mentioned in the Show

Simplify Cancer – http://simplifycancer.com/

Facing a Cancer Diagnosis: Advice From An Expert

Facing a Cancer Diagnosis: Advice From An Expert from Patient Empowerment Network on Vimeo.

Brittany DeGreef, a genetic counselor, provides essential advice for when you are facing a cancer diagnosis emphasizing that leaning on supportive friends and family is key.

Brittany Degreef is a Genetic Counselor at Robert H. Lurie Comprehensive Cancer Center of Northwestern University. More about this expert.

See More From the The Pro-Active AML Patient Toolkit


Transcript:

One piece of advice I give patients who are just diagnosed with cancer – and we do frequently see patients at least once a week who were just diagnosed either that week or the week prior – is feel what you need to feel. Not every patient is going to react or cope with their diagnosis in the same way as someone next to them, even within the same family. That also goes for caregivers and relatives.  

 So, just because you feel like helping out a relative in a specific way, it might not be the same for your brother or sister or cousin.  

 So, we always tell patients that there is no wrong or right way to cope with a diagnosis of cancer. The way that you approach it is perfectly fine and there’s no right or wrong way to do that.  

So, another piece of advice we always tell patients is don’t be scared to lean on your support network, whether that be family or friends, your healthcare provider, advocacy groups, never be afraid to ask for help.   

And for some patients who feel like they have limited resources, usually hospitals where you’re receiving your patient care has many resources available to you, whether that be emotional, financial, spiritual, logistical. Don’t be scared to ask about those resources. 

Barby Ingle – What Advice Do You Have For Someone Who Is Newly Diagnosed?

As the president of the International Pain Foundation, a best-selling author, and chronic pain advocate, Barby Ingle shares her advice for the newly diagnosed. For all our A Conversation With… videos please click here.

Barby Ingle – What Advice Do You Have For Someone Who Is Newly Diagnosed? from Patient Empowerment Network on Vimeo.

Advice For Newly Diagnosed Patients #patientchat Highlights

Last week, we hosted an Empowered #patientchat on advice for newly diagnosed patients. The #patientchat community came together and shared their best advice and tips.

The Top Tweets and Advice…

 

Ask Questions

 

 

 

 

Seek a Second Opinion

 

 

 

 

Stay Informed


Full Chat

Finding Your Voice #patientchat Highlights

Last week, we hosted an Empowered #patientchat on finding your voice and what stops patients from seeking a second opinion.

A second opinion is crucial to prevent misdiagnosis or unnecessary procedures or surgeries. A study done by Mayo Clinic showed that as many as 88% of patients who get a second opinion go home with a new or refined diagnosis. That shows that only 12% of patients receive confirmation that their original diagnosis was complete and correct. Still, a lot of patients never get second opinions. So, we wanted to chat about this and see what the Empowered #patientchat community had to say, and these were the main takeaways:

The Top Tweets…

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 


Full Chat

Finding the Funny When the Diagnosis Isn’t

It’s not easy hearing your name and [insert dread diagnosis here]. I know this only too well after having to find the funny in my own journey through cancer. Cancer is, however, most often a diagnosis that you fight to a defined end. What’s it like to find the funny in a chronic condition like multiple sclerosis, or HIV, or diabetes?

I have a number of friends dealing with the life-long aftermath of an MS diagnosis. One of them tipped me off to Jim Sweeney several years ago. Jim’s MS journey started with vision problems in 1985, he was officially diagnosed in 1990, and has been wrestling with the impact of that diagnosis – finding the funny most of the time – ever since. Jim’s body of work includes decades of live improv, and his one-man show “My MS & Me,” which you can hear on the BBC Radio 1 site. His MS has progressed to the point that he’s now in a wheelchair, and his public presence is mostly limited to Twitter, where his profile says he “can’t complain but sometimes do,” and YouTube.

Some other sterling examples of funny-or-die in managing chronic disease are Mark S. King’s fabulously funny My Fabulous Disease blog. Mark is HIV+, so he shares information, resources, and myth-busting about all things HIV in his posts and videos. He’s brutally honest about pretty much everything, with plenty of humor to soften the impact of what it’s really like to live with what anti-retroviral treatments have made a chronic illness, not the death sentence it too often was in the first two decades after the viral epidemic started in 1980.

Then there’s the “laugh out loud at the absurdity” Six Until Me site from Kerri Marrone Sparling, who writes about her life as a Type 1 diabetic. She covers everything from exceedingly random TSA security agent behavior when confronted with diabetes-related medical devices, to “pregnant while diabetic” to dealing with the emotional impact of living with a busted pancreas, all with a good dose of highly-readable snark.

How much courage does it take to laugh out loud, in public, at an incurable disease? Jim, and Mark, and Kerri certainly have courage – and comedy chops! – at the level required.

On the provider side, there are a number of docs who are breaking up the waiting rooms and wards.

The most visible of these comedic clinicians is Dr. Zubin Damania, a/k/a ZDoggMD  – “Slightly Funnier Than Placebo” was his tagline for years, before he shifted to “The Voice of Health 3.0.” ZDogg is a hospital medicine specialist who’s built an empire of snark over the last decade plus, some G-rated and some most definitely NSFW. His videos alone guarantee hours of laughter, and he’s one of the best users of Facebook Live around.

I’ve even found a scholarly article entitled The Use of Humor to Promote Patient Centered Care – be warned, though, that (1) it’s a “scholarly article,” meaning that it’s had all the laughs surgically removed and (2) they want $42.50 for it. You have been warned.

What’s my point here? I actually have two:

1. Laughter really is the best medicine.

Humor keeps us in touch with our humanity, and – unless it’s insult comedy, which I do not recommend in the health care arena, unless it’s insulting bad health care – it helps to comfort others in the same situation.

2. Patients and providers need to work together to help each other find the funny.

If you’re a doctor, don’t just say “you’ve got [insert dread diagnosis here], here’s the treatment plan, call if you have any questions, … NEXT!” Look your patients in the eye, and channel your inner comedian whenever it’s appropriate. If you’re a patient, connect with other people in your situation and see how they’re finding the funny. And help your doctors find their funny. If they can’t find it, you should find another doctor.

We all need to work together to break each other up. Laughter can comfort, can calm, it can even heal.

That’s real disruptive health care, no prescription required.

Nancy’s Lung Cancer Journey

No one is ever prepared to hear the words “You have cancer”. Even though (from asking for an x-ray that morphed into a CT scan) I knew there was a large tumor in the middle of my chest, I still wasn’t ready. And the pulmonologist was so kind in delivering the diagnosis. He went down the hall with the needle aspiration from my left clavicular lymph node and returned ½ hour later with a tri-fold paper towel on which he had drawn my lungs with the locations of the tumors – upper right lobe (T1), central lymph nodes of the mediastinal area (in total, about 2” x 5”), and one on the lymph node at my neck. And he said “You have small cell lung cancer (SCLC). There’s good news and bad news. The bad news is that it is extremely aggressive. The good news is that it is extremely responsive to treatment. If you are deemed to be “limited stage” (there are only 2 stages for SCLC – I call them good and bad), you have a 30% chance of long-term survival – a normal life.” In mid-August, I thought I’d be dead by Christmas. I spent about 2 minutes on the internet – what I saw was enough to tell me not to look further.

Doctors matter. A lot. I was treated at an NCI-designated Comprehensive Cancer Center by several exceptional doctors. What made them exceptional? Their listening and observational skills first and foremost, their dedication to staying current with research, and their caring. I was lucky – I didn’t have to search for them. These women – my primary care physician, my oncologist and my radiation oncologist kept me alive. They made me part of the 30%, even though my diagnosis said I was borderline extensive stage. It only took 5 months of chemotherapy (cisplatin and etoposide) and twice daily radiation during some of those 5 months, along with an episode of sepsis (broad-spectrum antibiotics, 2 blood transfusions, and a week in the hospital), to have me declared “No evidence of disease (NED)” by early December.

While my friends and family celebrated, I didn’t feel like celebrating. My life had been turned upside-down, I felt wrung-out and fatigued all the time, had lost so much weight that nothing fit, and had lost all my hair. And I knew that in January, I had to have 10 days of prophylactic whole brain radiation to kill any errant lung cancer cells (I was pretty sure it would make me stupid!) And that’s when my doctor prescribed an anti-depressant, which helped.

What did I do during this time – besides visit doctors and hospitals?  I walked – a lot. It was the easiest way for me to exercise, and my boxer was happy to help in that regard. I ate well – meaning lots of fruits and vegetables. And I meditated with guided CDs designed for cancer patients. And I kept up with my friends – often meeting one or more of them for lunch downtown. That not only passed the time but kept my spirits as up as they could be – a distraction if you will.

And when it was over, and I was deemed “cured”, I got angry. Angry that no one talked about the number one cancer killer. Through my doctor, I got in touch with the National Lung Cancer Partnership (now merged with the Lung Cancer Research Foundation), got involved in advocacy, and haven’t stopped. For me – it is healing to try to do something – anything – to prevent more people from going through what I went by raising awareness and research funding.

I have also learned that some treatments don’t let you forget that you had them. I had a CT scan every 90 days for the first 5 years after diagnosis. In the 4th year, they saw that my left ventricle was enlarged and referred me to cardiology for cardiomyopathy (heart failure). It was bad – so I went from surviving the #2 killer to facing the #1 killer! But with treatment from a cardiologist who specialized in heart failure from chemotherapy, I now have an implanted medical device, low-dose daily medication, and a nearly normal heart function. There’s also the foot neuropathy I’ve learned to live with (it’s not so bad) and some balance issues (likely from inner ear damage from cisplatin). But I’m alive!! Alive certainly beats the alternative.

ASCO 2018 Lung Cancer Roundtable

A Lung Cancer Roundtable: Takeaways from ASCO 2018

Lung cancer experts Dr. Jeffrey Crawford from Duke and Dr. Edward Kim from Levine Cancer Institute speak about key take-aways from this year’s ASCO meeting including immunotherapy updates, newly identified genes, the role of liquid biopsies and specific questions patients/care partners should be asking as the lung cancer landscape continues to evolve.


Transcript

Andrew Schorr:

Okay.  Here we go.

Hello and welcome to this Patient Empowerment Network program produced by Patient Power.  I’m Andrew Schorr from Patient Power, and we’re discussing an update from the big American Society of Clinical Oncology meeting, ASCO, and what it means for patients and family members dealing with lung cancer today.  I want to thank our financial supporters for making grants to support this program, Celgene and Pfizer.

So we have two noted experts with us.  We have Dr. Jeffrey Crawford from Duke University and the Duke Cancer Institute in Durham, North Carolina, and Dr. Edward Kim from the Levine Cancer Institute down the road also in North Carolina, in Charlotte, North Carolina.  Dr. Crawford, welcome to Patient Power and the Patient Empowerment Network.

Dr. Crawford:

Andrew, thank you.  I’m glad to be here.

Andrew Schorr:

Dr. Kim, welcome to you.

Dr. Kim:

Pleasure, Andrew.

Andrew Schorr:

Okay.  Gentlemen, let’s start.  So I walked into the ASCO exhibit hall, which is many football fields wide and long, and I was impressed with so many companies devoted to helping doctors and their patients understand the specific biology, molecular composition of the tumor that somebody might have for example with lung cancer.  Dr. Kim, is this where it’s going, is that sort of precision medicine?  And why is it so critical for patients and their doctors?

Dr. Kim:

Yeah, thanks, Andrew.  I think it’s really important to know how the new standards are changing.  We’ve been used to a lot of therapies and how we assess folks for decease such as biopsies and histological diagnoses, and now it’s not just about that.  It’s about trying to figure out what genes exist that are unique to each person’s individual tumor.  And we know that these genes are differently made up in different folks, so just to call somebody who has a non‑small cell lung cancer, and that’s the area that myself and Dr. Crawford cover, is really not the whole picture any more.

We’ve seen this in breast cancer.  We’ve just kind of come to accept it over the last couple decades, that you’re either a hormone receptor‑positive breast cancer patient or your tumor is HER2 positive or not or you’re a triple negative, and that’s means none of those markers are present.

Well, we were never that sophisticated in lung cancer, frankly, to have the equivalent of a triple negative even though we did, and we started is seeing this in the early 2000s, especially as we looked at first the mutations like EGFR and translocations like ALK and ROS1, and now that number is just really exploding as far as the number of markers that a clinician has to check just at baseline to make the proper assessment to treat a patient with non small‑cell lung cancer these days.

And that’s exciting, but it’s also daunting in that the data and the drugs and markers are changing so frequently that it’s hard to keep up, and even as an expert it’s hard.

Andrew Schorr:

Now, Dr. Crawford, you’re in research a lot as well, and so this multiplying of genes, you keep identifying new ones, right, and then it’s a matter of finding out, well, which genes are important at which time for which patient, right?

Dr. Crawford:

Correct.  As Ed was saying, it’s a complicated task, and I think we get now a lot of information.  When we do next‑generation sequencing, we get literally hundreds of genes.  Some of them are actionable, some aren’t, and really understanding which are and which aren’t and now to interpret that is becoming a field of its own.  So molecular tumor boards have started to try to dissect this at the institutional level so people can sit down with pathologists, (?) like the pathologist‑clinicians, try to work through how to move forward on an individual patient basis.

Andrew Schorr:

So, Dr. Kim, we hear about immunoncology, immunotherapy, and drugs that are being tested in many cancers to try to help the immune system be boosted, I guess, to fight the cancer.  Maybe you could explain that because there was news about that at ASCO, wasn’t there, for lung cancer?

Dr. Kim:

Yeah.  And certainly it seems like every major meeting, Andrew, has news about immunotherapy.  And the really nice part about it, speaking very selfishly, is that there has been a lot of news about immunotherapy and lung cancer, and I get to tease my melanoma colleagues, that, yeah, you know, we know it’s been around for greater than five, six years in melanoma, but it required a large scale sort of cancer to take this into the main stream.

And lung cancer is one of the largest.  It affects so many people out there, and to have these trials testing immunotherapies and these FDA indications, has really transformed things.  What we explain to people is that it’s not like the vaccine programs in the past in that the immune system is a very sort of gray area for a lot of folks.  Some people think you can take vitamins and boost your immune system.  Other people think you just have healthy living it will do it, and all those things contribute because your immune system is really like your micro environment throughout your entire body, and a lot of things affect it, and it affects a lot of things.

But what’s really cool about these newer generation drugs that are impacting the cancer process is that cancers have become smart.  They are able to build up defenses to be sort of stealth inside the body, and so even though there were bad things happening to you your body couldn’t tell that they were cancer cells versus normal cells.  And so these new checkpoint inhibitors have focused on trying to break down the stealth or the defenses that these cancer cells have been using to invade the immune system.

And so now you’re really empowering your own body’s immune system to fight the cancer.  And that’s really exciting.  The side effects, there are some but have generally been very well tolerable.  There are always a percentage of patients who can get a hyperactive immune system, and that’s usually what causes a lot of symptoms we see, but all in all‑‑you know, we use Jimmy Carter as a poster child, he’s like 150 years old, and he’s on an immunotherapy being treated for a stage 4 melanoma and doing very well.  So that’s what my patients see out there, that’s why they’re asking about it.  We have to select the right people who is appropriate.

Andrew Schorr:

Well, Dr. Crawford, let’s talk about selection.  So we’ve alluded to testing to understand what’s at work or what sort of immune levels, we hear these terms PD‑1 and PD‑L1, and they’re even mentioned on telephones commercials for lung cancer drugs.  So how do we know whether this changing world of immunotherapy applies to an individual patient?

Dr. Crawford:

Well, that’s a good question.  So I think we’re learning as we go about biomarkers for immunotherapy, but certainly the one that’s out there most notably is PD‑L1, and so that’s a marker of this protein that Dr. Kim was talking about.  It’s an immune checkpoint, so PD‑L1 when it finds the PD‑1 receptor down regulates or lowers the immune system, and that’s a natural, naturally occurring process.  It’s important so our immune system does get overly revved up, but what happens in cancers it often gets overly depressed and suppressed, so we have inhibitors, drugs that work by inhibiting that reaction that allow the immune system to emerge and attack the cancer.

So what’s really cool about this is that the immune system itself is what destroys the cancer when you take these agents.  This is not like chemotherapy or even targeted therapy where there’s a direct cytotoxic effect on the cells.  This is really enabling your immune system to take over and attack the cancer and destroy it.  So it’s remarkable when we see an x‑ray with cancer disappearing based on restoring the immune system.

So PD‑L1 is clearly an important marker because it’s the way these first‑generation immune checkpoint inhibitors work through that process.  So one would assume that the PD‑L1 measurement would be predictive of who is going to benefit and who is not.  And in some sense it is, but it’s not at all like EGFR testing, where we are pretty confident when we have an EGFR mutation we’ll have a very high response rate, while with PD‑L1 even in patients with expression above 50 percent only about half of them get a good response.

And on the other end patients with very low response, very low levels of PD‑L1, they still have a response of 8 or 10 percent.  So it’s not a perfect marker by any means, but it has been helpful in identifying patients likely to benefit.  And what’s come out of ASCO is more and more about how to select patients for immunotherapy or a combination of chemo and immunotherapy or other options.

Andrew Schorr:

Dr. Kim, let’s talk about biopsy for a minute or how you get the information from the patient as to what’s going on and then what to do about it, if you will.  So getting a lung biopsy is not easy, and I know sometimes there’s a problem getting enough tissue to do all the analysis you want, and now we’ve been hearing about more and more companies that are doing liquid biopsy.  Okay.

So here’s Mr. Jones, you want him to have a lung biopsy.  Would there also be a liquid biopsy or‑‑and not just at diagnosis but would you be doing some of this along the way to see if treatment is working?

Dr. Kim:

Yeah, we’ve always been attracted to some of the other cancers that utilize liquid tests, ovarian cancer, CA125, PSA, prostate cancer, although we’re still not really clear on where we’re supposed to be using that to screen patients, but that has given people is principle that they like to follow things.  And that’s why cholesterol, for instance, was such a powerful sort of marker even though the relevance of it has been questioned by cardiologists.  People can see there is an effect.

So, first of all, we have to say that nothing has completely replaced tissue.  That is really the gold standard.  It still is.  I tell our interventionalists, whether it’s a pulmonologist, interventional radiologist or anyone, I don’t want a diagnosis.  I want tissue.  Because they can make a diagnosis by doing some brushings or some cytology, and they can tell me it’s an adenocarcinoma favoring lung.  That is not helpful.  We need to absolutely have data that allows us to send for these molecular tests which includes, as Jeff mentioned, PD‑L1.

We need EGFR mutation, ALK, ROS1, BRAF.  These are all very important markers now that need to be sent.  And in some cases, at some centers they send for the larger panels.  What you get are 3‑ to 500 genes.  I don’t need 3‑ to 500 genes, but there are certainly clinical trials out there that can help match patients into trials based on these genes, so it is some utility.

But the blood‑based markers and the biopsies are improving.  There are definitely very‑‑there are good data that show concordance when they’re positive.  So if you do a blood test and it shows a positive mutation for EGFR, for instance, you can be pretty confident that the tissue has that as well.  The problem is that when you get a negative result.  And the negative result, those percentages aren’t disconcordant because (?) really show the amount of accuracy, and so you can’t take a negative test at face value.  We don’t standardly do liquid biopsies in patients unless the patient really has a contraindication to doing a traditional tissue biopsy.

As far as the surveillance aspect, as you mentioned, we do that on research.  So on our research studies we do follow patients at every cycle with another blood draw, in addition to what they give in labs, so it’s not an extra stick.  It’s just extra biopsy.  And we do try to follow to see if we can see some of these different mutations either go up or down based on how the treatment is working or not working.  And we’re hopeful that this type of research down the road can lead to more predictive assays that are easier to gather so we can either surveil patients to see if they have cancer, if it’s gone away, if it’s come back.

You can imagine somebody who has been treated for cancer, who has no evidence of disease on a CAT scan but maybe with blood surveillance we can get an early sign if something is coming back.  These are all possibilities and are being investigated, but right now it’s really a backup plan if tissue can’t be adequately gathered.

Andrew Schorr:

Dr. Crawford, of course you’re doing research as well.  Do you agree with this, where we are now and where we’re headed?

Dr. Crawford:

Absolutely.  I think what’s happened in lung cancer is because of this need for tumor tissue, as Dr. Kim has pointed out, it’s really transformed all the interventional things we’ve been doing.  We were moving in the 90s to smaller and smaller biopsies, smaller and smaller needle aspirations just to make a diagnosis, but now we’ve gone back the other way where we’re retraining our pulmonologists to get larger cores of tissues.  They’re developing new techniques to get more tissue, endobronchial biopsies.  CT interventional people have been enormously helpful for getting core biopsies so we get adequate tumor tissue to do the molecular tests we’ve been talking about.

So that’s really fundamentally important and important to have at every institution hospital across the country.  It’s one thing for Levine or Duke to be able to do this, but it really needs to be done in smaller community hospitals and done well by interventional people who can get the tissue we need because the samples can always be tested at a central site if the pathology labs can’t do it locally.  We have to be able to get the tumor tissue.

Andrew Schorr:

Let’s pull this together for a little bit.  I want to see if I’ve got this right.  So you’re having a revolution now in more genes being identified and trying to decide what’s actionable, whether you have approved medicines or combinations or drugs in trials, that both of you have alluded to, could for research purposes you identify something and where that could offer hope to a patient where otherwise the existing therapies might not match up.

So what actions should patients and family members be talking about?  And you said, Dr. Crawford, like at the community level or if they have a university hospital as a choice to go.  What should they be doing now because obviously anybody diagnosed with lung cancer or their family member, we want the longest life and the best chance right now, and yet you have an evolving field.  So what would‑‑Dr. Crawford, how would you counsel patients and family members so that with what you have available, either as approved therapies or in trials, could be available to them?

Dr. Crawford:

Well with, first, let me back up a second to say we’ve been talking mainly about advanced lung cancer.

Andrew Schorr:

Right.

Dr. Crawford:

So it’s important that patients get diagnosed early.  It’s important that patients who are eligible for CT screening and to go that so we can detect lung cancer at an earlier stage and hopefully offer them curable surgery, and then for them to get evaluated by a multidisciplinary team if they’re in early stages to see is surgery alone the right thing, surgery and chemotherapy, a combination with radiation, so all those standards are still present in early‑stage disease.

Now, as we may talk about, immunotherapy and targeted therapy may have a role there as well, but I think our curative strategies remain intact there.  So it’s very important to have availability of a multidisciplinary team that can really assess cancer at all stages.

For the advanced cancer patients then, what’s particularly important is for every patient to get molecularly defined tumor testing being done.  So we not only need to know the pathology, as Dr. Kim has said.  We really need to know the molecular phenotype of cancer to really make the best treatment approach for patients with advanced disease.  And in most patients that should happen before they ever talk about chemotherapy.  We need to know are there better approaches for that patient, and we’re not going to know that without these tests being done.

Andrew Schorr:

How about you, Dr. Kim?  I mean, still chemotherapy is still around, still in combination.  People understand there are side effects, not that there are not side effects with the new immunotherapies, but people would like to skip to the most effective treatment first.  So what recommendations would you have for our listeners?

Dr. Kim:

Yeah.  You know, we’re talking strictly about the advanced lung cancer patients.  The new standards in non‑small cell, both nonsquamous and squamous, now contain an immunotherapy combined with chemotherapy in markers that are lower selected or unselected.  I agree with Jeff.  You know, the biggest struggle we always want to tell our patients is be patient.  Do not let the chemotherapy start without having the results of your markers.

And that’s where sort of this new diagnosis of cancer comes in, the fear of it growing while you’re waiting a couple of weeks for the results of these markers, but we have to reassure patients it’s okay because if you just wait the extra one to two weeks.

And I understand it could take longer getting the biopsy to get enough tissue, sending it away, taking three weeks, and then your doctor, who is maybe not as sophisticated at reading these very, very, 18‑page reports, take some time to evaluate it.  It could be five weeks right there very easily, and we don’t like to wait that long.

But if you do have a marker present, and if it is‑‑and now almost 50 percent of the patients with non‑small cell have this, have a marker, maybe we’ll be able to give you something in lieu of chemotherapy that’s not a pill, single‑agent immunotherapy.  And certainly as a default now we’re seeing again new standards of care.  New standards of care are combination therapy, chemotherapy with immunotherapy based on data that’s been presented in the last couple months.

And so as a biomarker person I love seeing marker‑enriched populations receiving less therapy, but as we begin to incorporate these drugs in our standard regimens we’re seeing improvements that are undeniable and are forcing us now to readjust or new standards.

Andrew Schorr:

Dr. Crawford, so I’ve heard along the way, and I know knowledge is expanding, whether or not some of these newer approaches apply to people whether‑‑you know, whether they smoked or not, whether they had a history.  Where are we now with having the widest array of approaches for the widest array of people whether they’re smokers or not?

Oh, we lost your audio.  Go ahead.

Dr. Kim:

Am I back?

Andrew Schorr:

Yeah.

Dr. Kim:

So smoking is clearly an important factor in outcome for patients, and it’s also somewhat predictive of likelihood of different things.  We know smokers have a lower rate of EGFR and ALK translocations, mutations.  We also know that they have a higher rate of PD‑L1 expression and may be more likely to respond to some of these immunotherapies, but those are just generalized statistics.  And we have smokers who have EGFR mutations, and we have never smokers who respond beautifully to immune checkpoint therapy, so the answer is we have to do the molecular testing and sort out who has what.  Smoking may influence that frequency, but on any individual patient basis we have to have the tests to know how to best to treat them.

Andrew Schorr:

That’s good news.  So, Dr. Kim, you had referred earlier about cancer being kind of wily, if you will.  So is it possible that the molecular testing results at time of diagnosis further down the road may be different?  In other words, some other gene is driving the cancer should it come back or it’s still going, and you need a different approach.  In other words you have to change horses, if you will.

Dr. Kim:

Yeah, that’s a great point, Andrew.  You know, back in 10 years ago, almost 11 years ago when we initiated this trial while I was at MD Anderson called BATTLE, the whole principle was to rebiopsy patients once they completed or once the first line of therapy stopped working.  And for that very point you brought up is that these tumors change.  If you use a baseline tissue that’s a very different environment that that tissue was exposed to.  It has not been treated with chemotherapy, it’s not been under different stressors, and nor has it now begun growing after getting chemotherapy.

So a patient, just as you say, who has been treated maybe there was some success but then it‑‑with chemotherapy it’s always a little transient, and then now the tumor is growing despite being treated, that could be a different tumor.  It’s been shown also by the Boston group that you get transformation to small cell, of all things, in about 15 percent of patients.  And so different histologists altogether.  So who knows what will evolve out of the cancer that’s been treated that is now beginning to grow.

And so I think it’s really important to have a repeat biopsy when this occurs to help again drive the appropriate treatment.  And, as we talked about earlier, if it’s difficult sometimes a liquid biopsy can even be done at this setting if it’s difficult or the patient is has a difficult area to get tissue.

Andrew Schorr:

So, Dr. Crawford, you have lung cancer meetings throughout the year, but the ASCO meeting with like 40,000 people across all cancers from around the world, it’s a big meeting.  You’re involved in research and, of course, with existing therapies as well, how positive do you feel about change and even the rate of change to offer hope for people dealing with lung cancer today?

Dr. Crawford:

I’m as excited about lung cancer as I’ve ever been, and I’ve been doing this for quite a while.  The rate of change is, as Ed has pointed out, is dramatic.  The number of new agents that we have seen over the last year, both targeted therapies and immunotherapies, and the rate of change, it’s not just ASCO every year.  AACR, a meeting that’s normally more basic research, had major breakthrough discoveries (?) inaudible, as well I’m sure this year, and Europe will have additional new discoveries as they did last year.

So it’s really changing every few months, our guidelines through NCCN have to be changed almost monthly, and I think that’s a good thing.  It’s telling us that new knowledge is really being moved very quickly into the patient care arena.

Andrew Schorr:

Dr. Kim, so we’ve talked largely about non small‑cell lung cancer, and you’ve rattled off some of the different types.  There’s a percentage of people, smaller percentage, but people with small cell‑lung cancer.  Were there things you were hearing there at ASCO that could offer hope or in research to help this population as well?

Dr. Kim:

And certainly Jeff is the expert here.  He’s had a long career with it.  Small cell has always been that tough cancer where you get teased a little bit.  Again, if you’re fortunate enough to find someone in limited stage you can try to deliver curative intent therapy.  If they happen to be in an extensive stage it really becomes about trying to give chemotherapy that has a high response rate, and so you feel good about that, but then the difficult aspect of it is that in fact it doesn’t last forever.  And so when it does again not respond, it’s not responding, we’ve got to figure out some things.

The immunotherapies have been very widely tested, and so there are some therapies that are coming.  There are some that are approved, nivolumab, ipilimumab have been used.  They’re trying to incorporate in combination with chemotherapy with these immunotherapies.  There are some other drug classes, (? Phonetic) roba‑T and others that are being looked at very closely in small cell.  So I love the fact that there’s spillover in the small cell because it wasn’t really a high area of importance for a lot of development of drugs, which was unfortunate because we still see those patients, but it’s nice to see that there’s a lot of studies been looking at these types of drugs.

Andrew Schorr:

Okay.  Dr. Crawford, any other comment you wanted to make about small cell?

Dr. Crawford:

I would say it’s an area that’s been difficult to see advances.  Small cell presents generally at more advanced stage, so very few patients can have surgery.  Chemo and radiation can still be curative for early‑stage patients with lymph node involvement who don’t have distant disease, but in the advanced stage setting we’ve been using the same chemotherapy for 20 years.  Our supportive care has gotten better, we’ve made some advances, but we’re hoping immune therapy and others will make a difference.

It’s kind of interesting.  Small cell, you would think, since it’s prevalent largely in smokers, people with smoking exposure, could be very‑‑a lot of mutations being present.  We know that total mutation burden is a nice predictor of benefit in non small‑cell lung cancer, so we think that would‑‑might play out here.  There is PD‑L1 expression in small cell but it’s not as intense.  And there is some separation by PD‑L1 score of benefit for immune checkpoint therapy in small cell, but the responses in general are less than they have been in non‑small cell.  So we’re going to need more, more homework to figure this one out, but I think we’re taking some steps in the right direction.

And as Dr. Kim pointed out, roba‑T is a targeted therapy, maybe one of the first targeted therapies we’ve had in small cell that attacks antigen present on a lot of small cell called (?) B L L 3, and there are other therapies being developed against that B L L 3 because we know that’s an important marker.  So I hope we will see agents that are truly targeted therapies in small cell in the next few years.

Andrew Schorr:

Okay.  So I think as we pull this together, and I think you were rattling off some acronyms, and that’s sort of what we’ve been seeing a lot in lung cancer now.  We’ve talked about EGFR and ALK and ROS1, and we talked about also PD‑L1.  So I know for patients it can be confusing, but look back, review this program with Dr. Crawford and Dr. Kim were saying about if you have someone diagnosed with advanced lung cancer to get that molecular test (? Inaudible) and make sure that the experts like this in your major center like this, that they have the information.  And then if you need to (? Inaudible) you may get (? Inaudible).  So (? Inaudible) but there’s help in second opinions from people like this.  Dr. Crawford, did I get it right?

Dr. Crawford:

I think you did.  You’re a good student.

Andrew Schorr:

Okay.  All right.  Well, we have two professors with us, Dr. Edward Kim from the Levine Cancer Institute in Charlotte, North Carolina, my old home down, and Dr. Jeffrey Crawford from Durham and Duke University.  I’ll say that even though I went to the University of North Carolina eight miles down the road.

Dr. Kim:

You had to say that.

Andrew Schorr:

Yeah.  Thank you.  Thank you both for your work in treating patients and in researching, helping give us a window into this ASCO conference, but I get the sense you‑‑you said it, Dr. Crawford‑‑you’re having meetings every couple of months and talking to your peers all the time, and this is a faster changing field.  Thank god, right?  So thank you so much.  Dr. Crawford from Duke, thank you so much for being with us.

Dr. Crawford:

Andrew, thank you so much and thanks to all the patients who are joining in today.  It’s for you we do all that.

Andrew Schorr:

Yeah, thank you.  And Dr. Kim, thanks.  I interviewed you years ago, and you were at MD Anderson.  Now you’re in Charlotte and you have a wonderful program there.  Thank you for being with us.

Dr. Kim:

Thank you, Andrew.  It’s our pleasure, and again, we’re just as excited as the patients because we get to offer them these really cool therapies and research studies.

Andrew Schorr:

Right.  Okay.  All right.  All the best to our patients and family members watching.  For the Patient Empowerment Network, I’m Andrew Schorr from Patient Power.  Remember, knowledge can be the best medicine of all.

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.