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How Do We Increase Precision Medicine’s Reach in Lung Cancer?

Living Well With Lung Cancer

In this webinar in partnership with H. Lee Moffitt Cancer Center & Research Institute, Dr. Jhanelle Gray, a medical oncologist, Dr. Stephen Rosenberg, a radiation oncologist, and Dr. Theresa Boyle a molecular pathologist will discuss the latest understanding of lung cancer research; currently approved therapies and promising clinical trials.

Downloadable Guide


Transcript:

Andrew Schorr:   

And greetings from here, San Diego-Carlsbad, California. I’m Andrew Schorr from Patient Power. Welcome to this Patient Empowerment Network program. I am so excited. It is really a wonderful opportunity for anybody dealing with lung cancer. Whether you’re the patient or you’re a close friend or a family member, to get the latest information.

So, let’s meet that team. I wanna start with a medical oncologist and that is Dr. Jhanelle Gray. And she is director of thoracic clinical research in the Department of Thoracic Oncology at the Moffitt Cancer Center. Dr. Gray, thanks so much for being with us.

Dr. Gray:                

Thank you very much. It’s a pleasure to be here.

Andrew Schorr:   

Okay. We’re gonna understand the role of the medical oncologist. But it’s a bigger team than that. So, I wanna also have us meet Dr. Stephen Rosenberg who is a radiation oncologist and works in concert with medical oncology. He’s normally down in Tampa, but today – where are you in Wisconsin, Dr. Rosenberg?

Dr. Rosenberg:    

I’m currently in Madison, Wisconsin giving a talk later today and tomorrow. 

Andrew Schorr:   

Okay. Home of the University of Wisconsin. Thanks for joining us.

And then there’s another member of the medical team none of us usually get to meet. And that is the pathologist who’s looking at our biopsy. Whether it’s taken from the lung or now increasingly liquid biopsies, our blood, and we’re gonna talk about that. And that is a pathologist and that is Theresa Ann Boyle who joins us. Dr. Boyle, thank you for being with us.

Dr. Boyle:               

Thank you for inviting me. It’s nice to be dragged out from behind the scenes.

Andrew Schorr:   

All right. Well, you won’t be beside the scenes anymore.

And of course, all of this – we have this whole group, but it doesn’t mean anything unless there’s a patient that they can help and maybe a family with them. So, let’s meet a patient from Tampa who’s been living with lung cancer for a number of years, Ed Cutler. Ed, thank you so much for joining us on this program and we’re gonna share your story. Hi, Ed.

Edward Cutler:     

Hi. It’s a pleasure to be here and an honor to be honest with you.’

Andrew Schorr:   

Well, Ed, so, you’ve been living with lung cancer how many years now? 

Edward Cutler:     

Just over five years.

Andrew Schorr:   

Okay. But let’s face it, it wasn’t that long ago if somebody was told they had lung cancer they were not long for this world with more advanced lung cancer. So, modern medicine has made a big difference for you, hasn’t it?

Edward Cutler:     

It certainly has. When I received my diagnosis, I was given the quote average life expectancy statistics and they didn’t look very good.

Andrew Schorr:   

Right.

Edward Cutler:     

So, I went the whole way.

Andrew Schorr:   

And we should mention that for the last couple years you’ve been in a clinical trial and it’s an immunotherapy. And we’re gonna talk about immunotherapy along the way. We’re gonna talk about target therapies, immunotherapies. The doctors are gonna help us understand this whole idea of precision medicine. Which means, “How do you get what’s right for you?”

And you’ve had some changes along the way, right Ed? I mean there you are in Tampa continuing your work as a tax consultant, I know. And been married more than 50 years to Donna, which is great. Children and grandchildren. But you’ve had kind of a journey that’s had changes along the way, right?

Edward Cutler:     

It has been a journey. Yeah. Yeah. Initially I started out with standard of care chemotherapy. And that basically took over 16 months. Basically, the first two or three months I was on the full medication of three drugs. And then they dropped off one and then I was on maintenance. But at the end of the 16th month they discovered that there was a new tumor. And I was told I was now chemo-resistant and that was the end of chemotherapy for me.

So, my etiologist and I sat down, and we started searching. And at that point, I don’t think there were any other approved medications. Everything else I think was still in trials at the time. Now I know that there are maybe two, three, a half a dozen medications that are out of trials and FDA-approved. But at that time, I was limited to clinical trials. And Dr. Tan, who is my oncologist, gave me the options looking at two or three different trials. And my goal was to live as long as possible with good quality of life. And that’s what I was looking for in each of the trial descriptions.

And we ended up selecting one and I took all of the various testing to qualify for that trial and I was ultimately accepted. It was a two-drug combination of infusion. And unfortunately, I only lasted seven – roughly seven months in that trial because of side effects that almost killed me. 

Andrew Schorr:   

But now there’s another trial?

Edward Cutler:     

And fortunately, it took another few months, but we located another trial that was being performed only at Moffitt. I said, “Well, that’s convenient.” So, I said, “Yeah.” Everything looked good on that. Sure, there were potential side effects, but I was willing to take my chances with it. And here I am nearly three years into that trial and I’ve been stable most of that three-year period. There was a little bit of tumor size reduction initially and basically stable the rest of the time. It’ll be three years come the end of January.

Andrew Schorr:   

That’s such great news.

So, Dr. Gray, you have lots of trials at a major center like Moffitt, maybe you could just tell us in this world of lung cancer, patients who participate in trials have not only paved the way for everybody, but it’s given them great hope, hasn’t it?

Dr. Gray:                

Absolutely. So, we have a lot of trials at Moffitt. We try to organize ourselves within a way of doing a personalized medicine approach. And basically, that means that any patient that comes to Moffitt we wanna give them the best treatment possible. And many times, that is a clinical trial. With clinical trials a lot of times you have access to more novel agents and things that you can’t necessarily get through your regular route through FDA approval. And also, a lot of that work is spurred by research developed here at Moffitt and partnering with the basic science researchers as well as us at a lot of the clinical – on the clinical side and making sure that we move these drugs forward and into the clinic for patients.

And Edward, I just wanna say I’m very happy about your story. And thank you for taking the time today to be with us and to share your journey with us. And give us your perspectives to this too.

Andrew Schorr:   

Yes. It’s very inspiring to all of us. And Ed, we know you’re a golfer. And so, you’ve been… 

Edward Cutler:     

Well, I was.

Andrew Schorr:   

Well, please God you can do that and travel with Donna. And the main thing is you are with us.

Dr. Gray:                

Yes.

Andrew Schorr:   

And I know that means so much to you and your family.

We’re gonna talk about the team approach as we go forward. So, Dr. Rosenberg, radiation oncology comes into play here because often when somebody’s diagnosed radiation can help shrink the tumors, right? And also alleviate some of the pain and other issues that people may have, right?

Dr. Rosenberg:    

Yeah. No. I think you hit on a lot of big major points there. And it really is a team approach. Particularly at Moffitt when we approach lung cancer trying to think about how we can do best for the patients, whether it’s a clinical trial or not. Radiation plays a big role for patients who have a locally advanced disease. Some of the standard of care is combining chemotherapy with radiation for patients with some advanced disease. But for patients who have had cancer spread to other parts of the body as well, radiation’s really good to help alleviate pain and even approve breathing and the other things that are happening.

And with newer agents we often find that radiation may even be potentiating the immune effects of some of the new immunotherapy drugs that are out there. And so, we’re really excited about some of the trials and studies we’re doing with Dr. Gray and her team. And the team as a whole at Moffitt combining irradiation with some of their new – with targeted drugs and immunotherapy drugs right now.

Andrew Schorr:   

Wait. Let me see if I get that. And Dr. Gray, feel free to comment too. Are you saying that radiation can sort of boost the effect of some of these medicines?

Dr. Rosenberg:    

Yeah. There is a lot of anecdotal evidence out there. And some basic science that’s right now emerging about how the immune system and radiation really are so interconnected. And how that helps us actually attack cancer by actually basically releasing the immune system to recognize the cancer in the body. And so, by combining that with immunotherapy drugs we’ve really found our ability to potentiate some of the effects of these immunotherapies.

Most of this is basic science. There are some anecdotal case reports out there with some of the newer drugs that have just come out in the last year or two FDA-approved have been after chemoradiation and we think they really work together well. And some of the newer trials at Moffitt are gonna be trying to combine these things up front. And I know Dr. Gray has been helping to lead that effort with Dr. Perez and others within our kinda joint departments here.

Dr. Gray:                

Yes. Absolutely. And so that work that Dr. Rosenberg was just talking about was actually developed at Moffitt. So, there’s a trial out there that’s now published in the New England Journal of Medicine. It led to the FDA approval of a drug called Durvalumab, which is actually named because the company, AstraZeneca, wanted to add durable responses and add value to patients. So, Durvalumab is where the name came from, interestingly enough.

And the study, what we wrote, was to look at those patients getting chemotherapy plus radiation therapy completing what’s considered standard of care therapy for those patients with that particular type of non-small cell lung cancer. And following this with an immunotherapy agent, the durvalumab (Imfinzi), for one year. And it significantly improved the outcomes for patients. Patients are living much longer when we utilize this method.

And now this has become the standard here in the United States. It’s working its way through the approval mechanisms over in Europe and through other companies. And I think this has really revolutionized how we approach and treat patients. And we are looking at – now we know it’s safe to give them sequentially. And so, can we safely and effectively – meaning can we actually improve outcomes for patients by moving these therapies upfront?

And so, it would be giving a lot of therapies together. So, it would be chemotherapy plus immunotherapy plus radiation therapy to patients. But at the end of the day, the goal here is to improve our outcomes in a – and still maintain quality of life for patients. So, it’s always challenging pushing the bar and reaching these goals for our patients.

[Crosstalk]

Andrew Schorr:   

Right. Right.

So, Ed, just a little bit more about your story and then we’re gonna bring Dr. Boyle into this too as we talk about personalized medicine. So, when you were originally diagnosed, you were, I think, consulting with a doctor about a concern about an aortic aneurism. It had nothing to do with cancer.

Edward Cutler:     

Yeah.

Andrew Schorr:   

You went to one doctor and then maybe a GI specialist. That’s where they found a mass. And then you went to Moffitt and saw a lung cancer specialist. Did I get that right?

Edward Cutler:     

That’s right. Yeah. The triple-A test, the Abdominal Aortic Aneurism test, was negative. But down at the bottom of the report in the footnote was that they saw a mass in my liver and follow-up was recommended. So, we went from there. I went to my primary care and he referred me to a GI doc and they pretty much agreed that there was some kind of cancer, but they didn’t know what exactly. They recommended that I get a PET scan, which Medicare would not permit. They said you have to have a diagnosis before you can get a PET scan.

So, the alternative was to have the biopsy. I said, “Okay. But let me get a second opinion first.” And that’s when I came out to Moffitt and they confirmed everything. I had my biopsy here at Moffitt. And there was a tumor in my liver, but the biopsy traced it back to my lung. Therefore, I have lung cancer.

Andrew Schorr:   

Right. And I wanna explain that. Okay. So, let’s start with Dr. Boyle on that. So, Dr. Boyle, you look at the biology of tissue samples or sometimes blood.

Dr. Boyle:               

Correct.

Andrew Schorr:   

And so, somebody says, “Oh, I have liver cancer.” But that just came up where he said well, he didn’t really have liver cancer, he had cancer that originated in the lung and the biology of it was it needed lung cancer treatment, right? And that’s part of what you figure out, right?

Dr. Boyle:               

Right. Right. Right. And actually, within the pathologist group there’s different fields of pathology. There’s the anatomic pathology where they’re looking at the diagnosis, “Is it lung cancer origin or is it kidney cancer origin?” I’m in the field of molecular pathology. So, I’m looking at the genetic changes inside the tumor, or in the blood too, and I’m trying to understand what those changes might mean in terms of what would be the best therapy for the patient. I’m also in the lung cancer research field. So, trying to better understand all of these immune checkpoints and how can we look at them. Why do some patients respond, and others don’t respond?

So, pathology is a large field. So, I’m working very closely with the thoracic department. In fact, I belong to them. 50% of my job is with the lung cancer department and 50% with the pathology department. And we found that that was helpful because the field is expanding so dramatically. Even within every year there’s great advances. And for anyone to keep up with everything is too difficult these days. And so, we really do all work as a team here at Moffitt. And so, as Jhanelle and I talk back and forth – a lot of emails with.

Dr. Gray:                

Right. Yes.

Dr. Boyle:               

So, I even consulted them on some of these questions you have. So, it’s great.

[Crosstalk]

Andrew Schorr:   

All right. Well, we’re gonna delve into this personalized medicine world. And the doctors will help us understand. We’ll understand how it applies to patients like Ed or others who may be watching. So, let’s put up the personalized medicine slide. Kat is our director and she’ll put it up.

I have a little dog barking here. I’m sorry.

Dr. Gray:                

No, you’re fine.

Andrew Schorr:   

Very cute.

Dr. Boyle:               

I like dogs.

Andrew Schorr:   

Kat, if you could put up this slide? There we go. Okay. So, help us understand – let’s start with you, Dr. Boyle.

Dr. Boyle:               

Yeah.

Andrew Schorr:   

This whole wheel around the right, what is this alphabet soup there? What is it?

Dr. Boyle:               

Right. Right. Right. So, this is showing the variety of different genes that can have genetic changes in the tumor. And it’s focused on the genetic changes that have potential clinical action or proven clinical action. EGFR is probably a more familiar one because that one came out first with better responds to EGFR inhibitor therapy than chemotherapy and others have come along. Like with ALK, ALK inhibitor therapy works well. With MEK, XM14 has become important, MET amplification.

Andrew Schorr:   

Okay. These are genes that have gone awry that are driving someone’s cancer, right?

Dr. Boyle:               

Correct. Right. Right. Right. And this wheel is trying to pick up on the driver mutations. There’s even more genes not on this wheel here that are passengers. Other mutations that might have some specs, but they might not necessarily be causing the tumor or driving the tumor but might be worth considering in terms of the therapy. In immunotherapy, tumor mutations burden has been something we look at. And they’re looking at many, many gene changes to see if there are more mutations than usual. And when that occurs, there might be a better likelihood of response to immunotherapy. So, we’re learning more and more everyday about all of these genes and more.

Andrew Schorr:   

Okay. We’re gonna define this. And Dr. Gray, you can help us. These kinda big bubbles to the right.

Dr. Boyle:               

Yes.

Andrew Schorr:   

So, first of all, a myth: All lung cancer tumors are the same. This right here says, “No,” right?

Dr. Gray:                

No. Absolutely. Yes. The fact is that each patient’s tumor has a unique biology. And the wheel on the left I think really helps to define this. That at the end of the day when we get a patient we’re concerned about, we get a biopsy, get a piece of tissue, send it over to pathology to Dr. Boyle’s team. She’s not only looking under the microscope to help us with, “What’s the diagnosis? What’s the origin of the tumor?” But we also wanna look at, “What is driving your tumor?”

And so, how I’ve explained it to patients is in two ways. You have a computer that has all these different parts, but at the end of the day what drives the computer is really that hard drive. And if you open up the hard drive there’s this little piece of hardware that’s actually making everything run. And that’s what we’re doing with the tumors is going into the cell, looking at the DNA level and seeing what is turning on your specific tumor.

Another way of thinking about it is as a hub for an airline, for example. So, a lot of us know Delta has a very big hub in Atlanta. They have a lot of flights that go through there. But if you were to shutdown Atlanta you would significantly impact the feasibility of Delta being able to function.

And that’s what we’re doing by looking at these driver mutations. We wanna find what’s turning on your tumor and then match that patient to the correct medicine. So, if you have the EGFR mutation, I wanna give you an EGFR inhibitor. If you have an ALK rearrangement, I wanna give you an ALK inhibitor. If you have a MEK mutation, I wanna give you a drug that targets MEK. What I don’t wanna do is if you have an EGFR mutation give you an ALK inhibitor. I’m doing you a disservice.

And so, it is very important – I think you brought up a very good point at the beginning of this that the team approach for lung cancer is imperative so that we can all work together to get the right patient the right treatment at the right time. 

Andrew Schorr:   

We’re gonna look at a graphic for that in just a second. I wanna just go over a couple of other things you mentioned. So, somebody might have a lung biopsy. Get some tissue. That goes to Dr. Boyle and her colleagues.

Dr. Gray:                

Yes.

Andrew Schorr:   

Wherever in the world you get treatment. And they’re taking a look at it to see where in this wheel – what comes up for them?

Dr. Gray:                

Correct.

Andrew Schorr:   

And then also there’s a – in that purple bubble there it says, “Tumor testing can happen at any point.” And so, we talked about driver genes.

Dr. Gray:                

Yes.

Andrew Schorr:   

And then Dr. Boyle mentioned passenger genes.

Dr. Gray:                

Yes.

Andrew Schorr:   

Well, they can change over time, right? 

Dr. Gray:                

Correct.

Andrew Schorr:   

There’s an argument for having testing again at some later time, right?

Dr. Gray:                

Absolutely. And so, for example, if you have an EGFR mutation and I give you an EGFR inhibitor, you then have a chance that your tumor can mutate against that specific drug that I’m giving you. And you can acquire a different mutation. And so, how do I know what’s going on? I need to get more tissue or – I don’t know when we’re planning on talking about it, but this is a good segue into liquid biopsies.

So, a liquid biopsy is getting a blood sample from patients and looking – specifically looking again at this wheel, looking at those mutations to see if we can identify them.

Andrew Schorr:   

Okay. 

Dr. Gray:                

And so, it is very, very important to keep monitoring patients, getting their blood, getting their tissue over time so we can make educated decisions. Again, just to relate this to something I think we’re all very familiar with is infections. If you keep giving the infection the same antibiotic, what happens? It develops resistance. And these drugs are no different and cancer’s no different. It’s just we have to stay ahead of the game and try to keep trying to outsmart the tumor.

Andrew Schorr:   

Right. Right.

[Crosstalk]

Dr. Gray:                

So, absolutely monitoring.

Andrew Schorr:   

Many researchers and specialists talk about cancer being really a wilily enemy.

Dr. Gray:                

Yeah. Enemy. Yes.

Andrew Schorr:   

And so, you can knock it back. But there’s sometimes the survival of the fittest of some cells that have some other property, like another gene?

[Crosstalk

Dr. Gray:                

Yes.

Andrew Schorr:   

So, Dr. Boyle, just help us to understand this idea of liquid biopsy. Because I know over the last few years sometimes there’s been a concern – I don’t know who does it. Whether a surgeon does it. Who does it? To get a lone biopsy and as much tissue as they can. But you’re saying, “Well, I need more to make other decisions.” Where does liquid biopsy come in now, basically a blood test, to help inform targeted, well-informed lung cancer care?

Dr. Boyle:               

Right. Right. Yes. Pathologists always want more tissue, but now we have an alternative. And sometimes an alternative gets the results faster back to the oncologist and the patient. And that’s the blood testing. And it has less risk than taking a sample from the lung. Now, the interpretation of the results from the liquid or the blood specimen is a little different than the interpretation from a tissue specimen. And when you get a positive result from the small amounts of cell-free DNA circulating in the blood, you can really count on it. And the oncologist can treat the patient with a targeted therapy based on that.

There are times when the results are all negative and you don’t know if the results are negative because there just wasn’t enough cell-free DNA in the blood or because the tumor is truly negative for all the mutations being checked. And so that’s where it really is important to follow-up with tissue testing. So, it’s been really a great advance in the field to be able to test with a specimen that’s much more easily available and can be tested right away.

Andrew Schorr:   

I’ve had the opportunity to tour foundation medicine back in Boston area and also be in some labs at other hospitals. And I’m amazed that these super sophisticated analyzers now to try to see what’s going on, whether the blood or the tissue

Okay. So, we’re gonna come back to where does that go out? I wonder if Kat, our director, could put up the personalized medicine slide? One more time, Kat. No, not that one. We’re gonna come back to that. That one.

So, there’s that whole area, Dr. Gray, on the left where it says, “Other.” And I know that Dr. Boyle and her colleagues around the world are trying to say, “Well, are there driver genes that we just haven’t identified yet?” And you keep having these analyzers looking at more and more, a bigger – 100, 200, and 300 whatever.

Dr. Gray:                

Yes.

Andrew Schorr:   

But some people, and I think this was Ed’s case. There wasn’t a driver gene that was identified.

Dr. Gray:                

Right.

Andrew Schorr:   

Well, what do you do there? 

Dr. Gray:                

So, one of the things that we’re testing for in addition to these driver mutations is also looking if patients may be a better candidate for immunotherapy and looking at a marker called PD-L1. It’s programmed death-ligand 1 which can be found on the tumor tissue cells. So, most patients will undergo simultaneous testing for both the immunotherapy marker as well as one of these driver mutation markers. So, if we’re unable to find a driver mutation, but we’re able to find that the tumor’s positive for PD-L1, that then triggers to us, as a medical oncologist, that, “Hey. We need to kind of shift and let’s focus on getting the patient immunotherapy.”

And particular now with the approvals and the trials that we’ve participated in here at Moffitt, as well as at other centers, that really if you have lung cancer, you don’t have a driver mutation. Outside of having a specific rational why you shouldn’t get immunotherapy, really you should be starting on immunotherapy.

I just wanna make – within that setting I just wanna make something clear. There are also some patients where you can find a driver mutation and you can find that they’re positive for the marker for the immunotherapy. And how do you choose between the two? For right now, most of the data points toward that you should focus on treating the driver mutation. That that does take precedence over the PD-L1, the marker for immunotherapy, okay?

And I know there’s a lot of commercials out there and a lot of excitement about immunotherapies for very good reason, but I would reserve the immunotherapy in those subsets of patients who have both markers to maybe a later line of therapy. But that also gives you a backup plan, right? It’s to your point you’re always trying to project and sequence things for the patients as much as we can. So, it is helpful to do both markers upfront and then act accordingly.

Andrew Schorr:   

Okay. I wanna make a point. I think that we’re done with this slide now. I wanna make a point that some people – it’s the minority, but it’s still a significant group – don’t have non-small cell lung cancer. 

Dr. Gray:                

Correct. 

Andrew Schorr:   

They have small cell lung cancer. And this has been tougher. But my understanding, and Dr. Gray, maybe you can inform us, that in some of the latest meetings you’ve been learning that immunotherapy along with chemotherapy can make a difference for people with small cell lung cancer, is that correct? 

Dr. Gray:                

Yes. Yes. That is absolutely correct. So, at our recent world congress on lung cancer meeting – now, this is our global international meeting for lung cancer where all the lung cancer experts get together now on a yearly basis. A lot of that has to do with that so much is changing that we now need to meet yearly. We used to meet biyearly.

One of the key presentations there that was in the presidential symposium seat or that’s the big session there was looking at combining chemotherapy with immunotherapy versus giving chemotherapy alone. And when they looked at this in patients with newly diagnosed, what we consider extensive stage or most people refer – may refer to it as stage four small cell lung cancer, that those patients derived a bigger benefit if we did the combination therapy. So, we’re talking about going from two IV infusions now to three IV infusions. So, you do add an hour, but there’s significant benefits that we all feel is also clinically beneficial for these patients.

If you happen to have small cell lung cancer and you are on chemotherapy there is also data that following your chemotherapy that utilizing immunotherapy in the subsequent line can also be helpful. So, these data are showing us consistently that immunotherapy is certainly effective in small cell lung cancer. And thank you for raising that point and that distinction. 

Andrew Schorr:   

Okay. So, Dr. Rosenberg, I’m gonna bounce this off of you as a cancer specialist. Not particularly about radiation but let me see if I get it right because we’re talking about immunotherapy.

When I developed cancer – and I’ve actually developed two blood cancers. So, I’m living with it. But whatever the cancer is, our bodies let us down, right? Our immune system has let us down and we’re starting to create aberrant cells, right? And they can develop masses like Ed had and they can spread. There’s a certain biology that the other doctors were talking about that they try to target. But with immunotherapy, that’s trying to leverage our immune system to do what it didn’t do right the first time, is that right? Is that the way you see immunotherapy? 

Dr. Rosenberg:    

Yes. Very much so. And one of the things that can define cancer is its ability to evade the immune system. In terms of our normal body, the way our immune system is set up is set up to go around our body and take care of any precancerous cells and try to destroy them. And unfortunately, what cancer does it has molecular mechanisms that try and basically get around these things. And so, the immunotherapy drugs that are out there help release the break in terms of the immune system to go back and attack these cancer cells.

And in terms of the interaction with radiation, because I am a radiation oncologist and I tend to bring it back there, is that what radiation can help do in that setting is actually destroy some of the cancer cells and kind of release what we call antigens into the blood stream or the nearby tissues to hopefully help the immune system better recognize the cancer. And when you take the break off the immune system and then allow the immune system to hopefully better recognize the cancer cells, these things all work together moving forward.

And so, I think there’s – only as we move forward, we see more interactions with radiation and the immune system and even these targeted therapies. I know that we went over – Dr. Boyle and Dr. Gray talked about how – these new targeted therapies that are out there. But even from a radiation point of view, we’re now really pursuing radiogenomics where we’re actually using some of these genetic signatures actually to determine how cancers respond to radiation treatment. And we’re actually sculpting our radiation to actually target certain areas of tumors to higher doses or lower doses based on some of these molecular mechanisms.

And it’s a really exciting time. And Moffitt particularly is really pioneering both of these areas to kinda push the boundaries in science right now.

Andrew Schorr:   

Well, good for you.

And I think, Ed, in listening, with this new age of cancer care it really argues wherever possible for people to get a second opinion at a major center like Moffitt where this brain power and leading edge of research can be brought to bear, wouldn’t you agree?

Edward Cutler:     

Oh, absolutely. No question about it.

I do have a question for Dr. Boyle. And that’s going back to the wheel of the mutations. Go back to 2013 when I was diagnosed, were all of those mutations tested when I had my biopsy or has the state of the art evolved such that now they do test for all of them? Or are there still some that they don’t test for until a certain event occurs?

Dr. Boyle:               

Right. So, there is still some disparity about where you go for your care and how many genes are tested. Certainly, Foundation One has a very large panel of genes. And I believe that was available in 2013. At Moffitt in this past year we validated a 170 gene panel that tested both the DNA and the RNA at the same time so that we can detect fusions like ROS1 and ALK at the same time as we’re detecting EGFR, KRAS, BRAF. All things on the wheel.

And so, I mean that only became available this year. In the past it was more piecemeal. And so, there were certain things that could be tested early on and possibly more things tested later. More and more we’re doing more comprehensive testing early on at diagnosis so that we know more at the beginning.

Andrew Schorr:   

I think there’s a point to underscore here is the field is evolving. The other day, Dr. Gray, we did a program that included someone you know from Harvard, Dr. Siegrist. And her advice, and I think you’d echo it, is wherever our audience gets care you wanna get a broad panel testing. And as we’re hearing from Dr. Boyle, the panel’s increasing, but the downside – and I know patients like this, for instance, with one of those more rare driver genes, ROS1, where they were tested sequentially and given, as you said, the wrong therapy for a while until they finally got around to doing the right tests and knew what was going on and did what’s right for them.

Dr. Gray:                

Yeah.

Andrew Schorr:   

So, I think for our audience, wherever you get care, and certainly it happens at Moffitt, you want a broad panel and as Ed was getting at is that panel is expanding.

Dr. Gray:                

Yes.

Andrew Schorr:   

What’s going on for you, and I think what you all say, and personalized medicine is, the right treatment for the right patient at the right time.

Dr. Gray:                

At the right time. Yeah.

Andrew Schorr:   

Okay?

Dr. Gray:                

Exactly.

Andrew Schorr:   

Okay. Let’s go to the role. We have another slide that describes the role. Really the team medicine approach, if you will. And let’s take a look at that.

So, okay. So, Ed was referred to Moffitt. Came there for a second opinion. And so, let’s see how it goes. So, Ed was the first place you went was to an oncologist. Was that first stop for you?

Edward Cutler:     

That’s correct.

Andrew Schorr:   

Oh, okay.

Edward Cutler:     

I went to a GI oncologist.

Andrew Schorr:   

A GI oncologist? But then it was discovered that it was really coming from your chest. And there was testing done. So, Dr. Rosenberg, let’s let you lead it. So, here I see radiation oncologist, medical oncologist, way down at the bottom we have molecular pathologist, like we have Dr. Boyle. How does all this work together?

Dr. Rosenberg:    

I think you’re gonna hear this theme over and over again, but it’s really a team with all of us. Especially say we meet to go over patients in a weekly tumor board which includes both our medical oncologists, radiation oncologists, surgeons, our pathology colleagues, our radiologists. It’s really all of us together. And so, as we gather information from a new patient, we’re trying to really determine what their stage is. Usually first of all based on imaging and then trying to establish a diagnosis through the tissues that we’ve gotten.

And once we kinda have that information we can meet as a team and kinda come up with a comprehensive treatment plan. And that includes gathering not only the tissue information, but the molecular information that Dr. Boyle really helps us put together there. And then after we have all that information gathered then we can kinda go down these different paths depending on what stage the patient has, what their molecular drivers are, and what sort of clinical trials and opportunities we have available for them that fits them in a very personalized way which really goes back to that personalized medicine that you were talking about there.

Andrew Schorr:   

Dr. Gray, any comments from you about this wheel? 

Dr. Gray:                

No, I completely agree with what Dr. Rosenberg summarized. I think we’re at – we’re a big referral center at Moffitt Cancer Center. And many times patients may come in with a biopsy. And I wanted to just touch base with what was mentioned before about getting enough tissue. When you do do biopsies to work up for the lung cancer that is very important. And I think this wheel here and this summary here helps to highlight that. That we really want to get down to the point where we’re really collaborating with the molecular pathologist looking at your biopsy within the lab. And perhaps getting that circulating tumor DNA analysis in a blood also to make this decision.

And I fully concur that this is a team approach. We really need the pathologist to let us know what’s going on. We really need to sit down as a team and make sure that we all come up with the right decision for the patient. And that’s certainly one of the benefits of going to a place like – you mentioned Harvard and coming to the Moffitt Cancer Center certainly also.

Andrew Schorr:   

Right. So, Dr. Boyle, so there are people listening who maybe have had a biopsy somewhere else. Maybe at the community level. And here, you’ve got this big lab and you have other groups that you work with with huge analyzers and pathologists and all that that you work with. Somebody says, “Well, if I come to Moffitt” – oh, any other major cancer center, sometimes the request is made to have another biopsy or other tests. Why is that important today? Because do you have sometimes where maybe the initial analysis wasn’t as correct as it could be?

Dr. Boyle:               

Right. It’s kinda like the bane of our existence. People like to say the tissue is an issue.

Andrew Schorr:   

Nice. 

Dr. Boyle:               

And it goes along with the “if you don’t have an adequate specimen you can only get so much information out of it.” The blood testing has really helped alleviate some of that pain, but when a procedure’s going to get a small bit of tissue from the lung, it can be less than 100 cells. And we’re trying to do the best we can to learn about 100 tumor cells. So, that’s why the biopsy is so important. And I was thinking maybe we can go around the wheel. We are missing the surgeon in here, but I love this appearance and how you can go around and around and around.

Andrew Schorr:   

Right. 

Dr. Boyle:               

But the patient usually first comes in and sees their oncologist and then a biopsy can be taken, and it goes to the anatomic pathologist and they determine is it adenocarcinoma or squamous cell cancer, small cell or some other primary cancer.

And then the specimen get to genetic testing. They go to the lab and that’s where we come in. We’re looking, “What’s the tumor cellularity? Is it enough for us to even test? Can we test with the targeted small panel if it’s not enough for big next generation sequencing panel?” And we do the sequencing on our big fancy machines, but we get the results. And it really requires pretty intensive interpretation to understands the results and make sure that we’re reporting out accurate results.

Andrew Schorr:   

Yeah. I wanted you to speak to that. There’s an art to – there’s an art to medicine.

Dr. Boyle:               

Well, yes. 

Dr. Gray:                

Yes.

Andrew Schorr:   

Of course. But there’s an art to pathology. And so, you wanna give accurate recommendations of what are we dealing with to the medical team, the rest of the medical team, and that has an art to it, right? And you’re a subspecialist in that area.

Dr. Boyle:               

Okay. Right. And we don’t want to overwhelm oncologists with too much information either. So, we’re very receptive to feedback about what’s most important for actually taking care of your patients that you’re seeing. And the resistance mutations have become very important. We used to only check for one part of the ALK gene and we got feedback from the oncologist that that wasn’t good enough. They need to look at all of the ALK gene for resistance mutations. So, back and forth.

And then we also have the help of the personalized medicine group here at Moffitt. And that’s wonderful. They have [inaudible] [00:47:19]. So, they know about drug side effects. They know how to work with insurance companies. They know how to answer questions about what’s the functional effects of genetic changes. So, when we send out a report, it goes straight to the oncologist, but it also goes to the personalized medicine group for a more in-depth look. And maybe some help identifying clinical trials that the patient might be newly eligible for based on the genetic findings.

And the radiation oncologists have become more involved too. As Stephen was talking about how the genetics can play a role in the care in terms of the radiation. There’s more and more clinical trials that are getting involved in together to better understand what’s the best therapy.

Andrew Schorr:   

So, Dr. Rosenberg, what I’m getting from this is a patient might see Dr. Gray or see you or maybe a surgeon with earlier stage lung cancer as well, but that there’s this whole group – Dr. Boyle, but she rattled off a few other groups as well that are all behind the scenes. And you guys are talking about me, the patient, right?

Dr. Boyle:               

Oh, yeah.

Dr. Rosenberg:    

Yeah. Absolutely. I think that we are really in communication with each other on a pretty regular basis as a team. And I think that’s what really leads to this personalized care for the best outcome for the patient is really being very communicative about – between Dr. Gray and between Dr. Boyle, between the surgeons that we work with and just everybody really working together to try and make the best decision we can for each patient.

And gathering all the right information upfront. I think that’s really the key is making sure we have all the right information we need, whether it’s molecular or imaging, before we go down a certain path, so we don’t go down the wrong path for any particular patient. And yeah, I think as we kind of put that information together we can help really personalize each person’s care that way. And from a radiation point of view we’re using both the imaging information that we’re getting and the molecular information to help make radiation decisions.

And at Moffitt, we’re really trying to push those boundaries from imaging as well. And we talk about personalized care from these molecular changes, but Moffitt, this room will be opening up our MRI-guided radiation treatment unit which is the first in the country. There’s only a handful of places that are doing MRI-based radiation treatment. And that’s really another form of personalized care by seeing somebody’s anatomy up close and in a very particular way and designing the radiation based on individual anatomy. And so, with that better imaging we’re able to do that. So, there’s a lot of ways to personalize care for patients moving forward.

Andrew Schorr:   

So, Dr. Gray, I wanna talk about the spread of cancer. So, Ed talked about how he had this on his liver. But you figured out – you all figured out it came from his lung?

Dr. Gray:                

His lung. Yes.

Andrew Schorr:   

Lung cancer can spread. Cancer can spread generally. But here we have people with metastatic cancer who are living longer with some of these approaches. 

Dr. Gray:                

Yes.

Andrew Schorr:   

Radiation, immunotherapy.

Dr. Gray:                

Therapy.

Andrew Schorr:   

Targeted therapy. 

Dr. Gray:                

Different therapies.

Andrew Schorr:   

So, when you tell somebody, “Mr. Jones, yes, you’re right. Imaging, we see your cancer spread.” That’s not the end of the story.

Dr. Gray:                

Absolutely not. No. So, what we also look at are these genetic findings, the pathology findings, the markers for the immunotherapy. But at the end of the day what your goal is is to extend life and to add quality of life to patients. And so, as we look at this information, we want to make sure that we’re making the right decisions. And this is the goal ultimately of personalized medicine.

Yes, your cancer may have spread, but we can give you treatments that are gonna knock down the cancer, get it to shrink down, and to a point that sometimes may become undetectable on the scans. We do think that there’s cells still circulating there, but we could still continue to follow you and keep track of the cancer and make sure that you’re – we’re helping you to manage this properly.

Andrew Schorr:   

Okay. So, I wanna remind our audience, send in your questions. This is an ask the expert question. We have an expert patient who’s lived it. And I know Ed, you spend time talking to other patients and family members. We have Dr. Boyle and we got her out of her lab there.

Dr. Boyle:               

Yeah.

Andrew Schorr:   

You might not see her in the exam room, but she plays a key role. We have Dr. Rosenberg who’s even travelling and joining us. And Dr. Gray. So, if you have a question send it to lung@patientpower.info.

And I wanna tackle a question. Here’s one we got from Gretta, “What percentage of blood biopsies are accurate?” She said, “I had one done and it showed I no longer had the BRAF mutation, but subsequent tissue biopsy showed I did still have it. So, how reliable are the liquid biopsies?” And I think you, Dr. Boyle, mentioned that a little bit.

Dr. Boyle:                                 

Right.

Andrew Schorr:   

So, this is a new area of pathology. In this area, how much can you rely on it?

Dr. Boyle:               

Right. So, the positive results we are finding when you’re testing with a reputable company they are – can be very reliable. Just as reliable as the tissue testing for the positive results. And there are some advantages even. Because in the body you might have a tumor on the lung that’s a little bit different from the tumor that spread to the liver, whereas the blood is a big mixing bowl. And if you have some DNA sloughing off the two different tumors, that DNA is mixing in the blood. So, you’re getting a more comprehensive look at the mutations in the blood.

One big, big disadvantage that’s represented in this question is when you get a negative result. When you get a negative result like she got for her BRAF in the blood, it’s really a non-informative result as opposed to a negative result that you can hang your hat on. Because you don’t really know how much cell-free DNA is actually sloughing off the tumor and circulating in the blood. And so, if it’s not in the blood, you might get a negative result when really, it’s still BRAF positive in the tumor as she found when she had this tissue tested again.

Dr. Gray:                

Positive.

Andrew Schorr:   

But this is evolving, right? I mean we couldn’t even talk about liquid biopsies not too long ago. So, the sophistication and the sort of getting down almost Nano – the Nano-level, you’re working on it, right?

Dr. Boyle:               

And that’s what Jhanelle and I have talked about this so much with algorithms for how to really understand the results and use the results.

Dr. Gray:                

Yes.

Dr. Boyle:               

And this is something that – at Moffitt we know well about the negative results being more like non-informative results with the blood. And we find them very helpful when we interpret them appropriately. 

Andrew Schorr:   

Okay. Well, there we go to the art and the sophistication of the tools that continue to develop. So, a lot of computing power folks that go into this. And then the wisdom of folks like Dr. Boyle.

All right. Here’s a question we got from Greg. I think this is for you, Dr. Gray. “What is happening in research for those of us who do not have target therapy gene mutations and also have a low tumor burden. Is chemotherapy the only option?” 

Dr. Gray:                

No. So, if you look at the studies that have occurred so far, looked across the patients that have a low tumor burden or have a negative PD-L1, or have no actionable or driver mutations, we still know that chemotherapy plus immunotherapy’s the way to go. We’re also doing a lot of research in that setting is that once those or if those stop working for you, what are gonna be the next steps? And that I think is certainly an area of need. One of the things that we’re looking at is combination immunotherapy strategies. That perhaps giving you one immunotherapy therapeutic agent was not enough and that you perhaps need two.

I think that chemotherapy is still very important. And doing combination strategies down the line with some of these novel agents. When we look at some of the – a lot of the trials, even the ones where you give chemotherapy with immunotherapy, if you look at the data, most of the benefit upfront, for now at least, appears from the actual chemotherapy. So, chemotherapy is very good at reducing disease bulk. But the immunotherapy can then come in and activate – help to activate your immune system. And the ultimate goal of immunotherapy is to create immune memory, okay?

Almost along the lines of a vaccine. You get your flu vaccine once a year because it mutates. You get your hepatitis vaccine. You’re not getting it every year. You only get it for a sequence. And the purpose there is that your immune system should be able to sustain on your own. And we wanna do that for patients upfront. That would be the ideal. But we also recognize that we just – this is very new, and we don’t know enough.

So, I think expanding more in combination immunotherapy strategies, looking at novel agents, looking at where chemotherapy’s target also and probably repurposing those drugs a little bit so that we can actually hit the target even better than regular systemic chemotherapy and reducing toxicities. There is a plethora of research going on within all avenues.

So, I think the key thing there is that if you have something and it’s not working for you, come to a center of excellence like Moffitt Cancer Center and sit down and talk to us and we can let you know. And exactly to your point. We talk to physicians all across the globe. Work very closely with Dr. Siegrist at Harvard. We share patients. Share data constantly. Even if we may not have something for you here at Moffitt, there may be somewhere else in the United States that we can send you also.

So, I would not – I don’t think – the key thing there is that giving up should not be the first option by any means.

Andrew Schorr:   

Amen. I just wanna drop back for a second and make sure everybody understands this whole world Dr. Rosenberg talked about a little bit. So, the immune system let us down. And Dr. Boyle a while ago used this term checkpoint.

Dr. Gray:                

Yes.

Andrew Schorr:   

So, Dr. Graham let you be the professor here. See if I get a good grade. The cancer cell has this kind of protective world around it where medicines traditionally maybe don’t kill it. 

Dr. Gray:                

Yes. Correct. Correct. 

Andrew Schorr:   

Right? Okay. So, what the immunotherapies are doing, maybe more than one, is to knock down that barrier.

Dr. Gray:                

Yes.

Andrew Schorr:   

So, that whether it’s with radiation like Dr. Rosenberg talked about with these immunotherapies where your immune system can do its job in killing the cancer cells, the abnormal cells.

Dr. Gray:                

Yes.

Andrew Schorr:   

And you also eluded to something else where the immunotherapy can continue to do this surveillance wherever the cancer may be. Whether it’s spread to Ed’s liver, whether it’s gone to somebody’s bone.

Dr. Gray:                

Yes.

Andrew Schorr:   

Wherever it is it says, “Oh, now I see you.”

Dr. Gray:                

Yes. 

Andrew Schorr:   

“And guess what? Bad news. I’m gonna kill you.” Right? 

Dr. Gray:                

Kill you. Correct. 100% right. So, one of the ways to think about this is that the immunotherapies, if you see the commercials out there, for example, for Opdivo or Keytruda, they actually do not kill the cancer cells. So, this is very different than chemotherapy. Traditional chemotherapy we’re very used to goes in, actually kills the cancer cells. Exactly. The immunotherapies are unmasking the tumor to the immune system allowing the immune system to now recognize the cancer cell as foreign and then attacking the cancer cells. And exactly, your immune system should then sustain on its own. And that is the ultimate goal of immunotherapy.

Andrew Schorr:   

And Ed, that’s what you’ve been living with, right? You said earlier you’re stable. So, you’re taking immunotherapy and it’s kinda knocking it back, right?

Edward Cutler:     

Yes, it is. To what Dr. Gray said with respect to, I guess, first line of treatment with the combination of chemo and immunotherapy, what is the standard now with the combination? Is it Alimta, Avastin and then Keytruda or Opdivo?

Dr. Gray:                

Yeah. So, right now as of 2018 what is approved by the FDA – I’m just going back a little bit. Remember there’s two main types of lung cancer. There’s small cell lung cancer, there’s non-small cell. There’s two main types within non-small cell of a non-squamous type of lung cancer and then a squamous cell type lung cancer. And to Ed’s point, he’s completely right, your chemotherapy that we choose for you depends on your type of lung cancer. And I think that’s what you’re alluding to in the question.

Edward Cutler:     

Yeah. Yeah. 

Dr. Gray:                

So, there are data that has shown for non-squamous, non-small cell lung cancer if you combine Carboplatin plus Pemetrexed plus Pembrolizumab together, that is the FDA-approved regimen for first-line – for that type of non-small cell lung cancer.

Now, if you have non-small cell lung cancer and the subtype is squamous cell, the drugs that are approved right now are Carboplatin, Paclitaxel, plus Pembrolizumab. Or you can substitute that Paclitaxel for something called Nab-Paclitaxel or Abraxane. Paclitaxel can cause some infusion reactions in patients. And so, the Nab-Paclitaxel is formulated to minimize that infusion reaction. So, there’s some flexibility there, but they’re still in the same class there.

So, and then if you have the small cell lung cancer actually the regimen that is approved there is a platinum – so cisplatin (Platinol) or carboplatin (Paraplatin) plus Etoposide plus etesolismab. So, it’s really even within that spectrum these are all ways of personalizing medicine for patients. And really having that level of information from the pathology and the biopsy side so that we can make the best decision for the patients. 

Andrew Schorr:   

Okay.

Dr. Gray:                

And then when that data comes in is having that expertise about which one is gonna be the right for which patient.

Andrew Schorr:   

Right. But there’s one other aspect I wanna put on. So, for patients, whether you go to Moffitt or another major center, rather than some of those names she mentioned, there may be a clinical trial where it has a number.

Dr. Gray:                

Yes.

Andrew Schorr:   

And it says, “We’re gonna give you X, Y, Z, 1, 2, 3, 4. That’s what we recommend,” which hasn’t been approved, but they believe may offer a better option for you.

Dr. Gray:                

Yes.

Andrew Schorr:   

Did I get it right?

Dr. Gray:                

Yes. Correct. And so, we call them license plates, right? License plate numbers. And so, when the drug first comes out of drug development, it kind of gets this license plate number and Nivolumab, Pembrolizumab, all of them came out with these license plate numbers as we call them. And then you just – as they move forward, and they show promise that they then develop a more formalized name – nomenclature for the naming. But to your point, it is very important to also look at clinical trials within that setting. That’s how we make these strides. That’s how we make these improvements.

We participated in a very first trial with Nivolumab here at the cancer center and I still have a patient that is alive six years out. His daughter was five when I met him. She’s 11 now. They sent him to hospice on the outside and I said, “You know what? We’re gonna try this medication.” And he has not received the immunotherapy in four years. And this is a perfect example where his immune system was able to work, get the tumor down, and now it’s sustained on its own off therapy. And if he didn’t come to Moffitt, he would’ve just been sent to hospice.

Andrew Schorr:   

Okay.

Dr. Gray:                

So, this is where exploring – making sure that you explore all of your options is very, very important. What I always recommend, you know what? Can you get treated locally? 100%. But at least go in for that consultation. Make sure that there’s not something newer, more novel, something that we think may be a little bit better. Clinical trials is always a way to explore things. At the end of the day the standard of care FDA-approved therapies are always there, and we can always give them to you whenever. You may have this option for this trial. And I think my patient got one of the last slots on the trial nationally. And I think… 

Andrew Schorr:   

…wow. What a story. I just wanna recap a couple things for our audience, okay? So, you got it now about personalized medicine and getting what’s right for you, whether it’s one of these targeted therapies in this growing list of genes that Dr. Boyle has talked about. And drug companies and government working to development things that match up with that. Immunotherapy, maybe more than one. Some that have a commercial name and some that have a license plate like Dr. Gray just described.

And then this whole idea of radiation oncology where Dr. Rosenberg and his colleagues are finding out how does all this work together? How can radiation actually trigger something in a cancer cell that then also helps it say to the cancer drug, “Hi, I’m here.” Boom. They get hit by a cruise missile, right? So, that’s what they’re working on.

All right. We’ve got a bunch of questions. Remember, lung@patientpower.info. This one came in from Leo. And Leo says, “Any new research or treatment regarding patients with the TP53 mutation?” So, first of all, Dr. Boyle, what is TP53? 

Dr. Boyle:               

Oh, goodness. I don’t off the top of my head know how that spells out, but it is a tumor suppressor protein. And it’s a gene which we find frequently mutated in all cancer types. And it often causes a worse prognosis. And there are many researchers trying to see if there are better drugs to target therapies. And lung cancer, the clinical trials are pretty early. The highest you get is phase one and two. So, there has not been a lot of success yet. In leukemia I think there’s more phase two trials.

We have an excellent researcher here, Elsa Flores, who is looking at animal models in vivo studies to try to understand more. Now, one thing sort of interesting about TP53 is that if you have lung cancer with TP53 and a KRAS mutation, that mutation is gonna be more likely to respond to immunotherapy.

Dr. Gray:                

KRAS mutation. 

Dr. Boyle:               

There’s a really nice paper out by John Heymack about this if there’s also an STK11 mutation. So, then it’s a lower likelihood of response to immunotherapy.

Dr. Boyle:               

So, with more and more research we’re lending some of the nuances of these and we’re hopeful that there’s going to be more that can be done with the TP53 mutations in the future.

Andrew Schorr:   

Okay. So, Dr. Gray. So, you were nodding your head while she explained that? 

Dr. Gray:                

Yeah. Yeah.

Andrew Schorr:   

So, in other words, you’re looking at not just one gene being the bad guy, but this constellation in a given patient.

Dr. Gray:                

Right.

Andrew Schorr:   

And does that tell you something that you could do in a more refined way for them?

Dr. Gray:                

Right. I think this is we’re coming into a center where we have this level of expertise and we’re sharing data across the different centers. But exactly what Dr. Boyle noted is that when we look at these genomic reports, right, you’re getting a lot of information coming out back at the medical oncologist. And knowing how to fully understand and interpret that data so you can make the best decisions for the patient is very helpful.

So, if we see a KRAS mutation, the P53, without an STK11 mutation, certainly that will move immunotherapy up on for the armamentarium for the patient. Now, this is a little bit in experimental mode, but we’ve seen similar data here at Moffitt. And it’s really starting to pick up traction across different cancer centers and lung cancer experts.

Around the specific question of the P53 mutation, we do have a compound that we’re looking at here in collaboration with AstraZeneca. It came from a trial that I had written and am working on that came from work derived here from Moffitt Cancer Center. It’s called AZD1775. But it basically what it is is it’s looking at inhibiting the cell cycle. I’m gonna take us back to biology a little bit. And cells, how they replicate, basically they have to go through mitosis, right? You have to replicate your DNA and then split off and divide.

And so, what the P53 does is it’s almost – as Dr. Boyle mentioned, it’s a tumor suppressor. What does that mean? It actually puts a stopgap, an intentional stopgap when cells go to replicate. And it makes the cell stop and check and say, “Do I have any mutations? Should I move forward or not?” What cancer cells do is they’ve lost – they mutate the P53. So, they don’t get that stop in place. They just keep replicating. Even though technically these are abnormal cells, they’re damaged cells and they shouldn’t replicate themselves.

So, what that drug does is it intentionally incorporates – if you have that P53 mutation your cells are not stopping when they’re replicating abnormally. This AZD1775 helps to add that stop so the cells can check themselves and say, “Hey, you know what? We’re really not replicating ourselves properly. We should actually go towards cell death and not cell survival and replication.” So, there are definitely trials that are looking at the P53, to Dr. Boyle’s point, including one that was derived here. And as Ed mentioned, something that you can only find here at Moffitt. And we hope to have that data out maybe later this year or early next year.

Andrew Schorr:   

Okay. Stay tuned.

Here’s a question we got from Jim. “How does immunotherapy work in EGFR mutations after targeted therapies no longer work?” Do you wanna comment?

Dr. Gray:                

Yeah. Yeah. So, that’s a great question. So, one of the key things as I mentioned before is if you find a mutation such as the EGFR mutation you go down the realm of a targeted therapy. So, say to treat patients with a targeted therapy’s very, very important.

I wanna take this opportunity to say that you should not combine an EGFR inhibitor with an anti-PD1 with an immunotherapy. It significantly raises patient’s toxicity. So, if a physician ever – if that ever comes up, at least for right now, the answer, you should decline that, and no one should be offering that to you. Exactly.

So, I agree that the best way to incorporate them right now is through a sequential approach. So, you start with the EGFR inhibitor. And there’s four of them actually FDA-approved right now. So, you may get sequenced from one EGFR inhibitor to the next. What people are looking at right now is should we go straight to immunotherapy, should we go straight to chemotherapy, or should we go straight to a combination strategy of chemotherapy and immunotherapy?

I think based on the data for right now, most of us as long as we think that it’s safe will go to a combination of chemotherapy plus the immunotherapy based on the data. This is gonna be looked at more in detail to finally answer this question. It also depends on the wishes of the patients too. So, if you think that you cannot – if a patient cannot tolerate, for example, immunotherapy combination with chemotherapy, we may start with one or the other and then move on. But definitely I agree that the sequencing is gonna be the best way to do that.

Andrew Schorr:   

Okay. Let’s talk about the toxicity for a minute. So, Ed, you had – earlier you had some treatment that was pretty tough to take, right?

Edward Cutler:     

Yes. Yes, it was. The only major side effect that impacted me was colitis. But it was major. It was really, really major.

Andrew Schorr:   

And you had to change? You changed?

Edward Cutler:     

And when I read the protocol, yes, that was one of the potential side effects.

Dr. Gray:                

Right.

Edward Cutler:     

But that’s all it was was a potential side effect. I took my chance with it. I’d never had colitis before and then it hit me. And I’m still kind of dealing with that to some extent. Nowhere near what I dealt with three years ago.

Andrew Schorr:   

Okay. And your treatment was changed?

Edward Cutler:     

And my treatment was changed. Yes.

Andrew Schorr:   

Okay.

Edward Cutler:     

And that was a combination – a two drug combination trial.

Andrew Schorr:   

Yeah.

Edward Cutler:     

A phase one trial.

Andrew Schorr:   

Here’s a question we got in from Wendy. So, it’s a little technical, but she says, “I’m currently keeping my stage four non-small cell adenocarcinoma at bay with monthly maintenance infusions of Pemetrexed.” Did I get that?

Dr. Gray:                

Yes. Absolutely.

Andrew Schorr:   

“I was diagnosed in August of 2015. Nothing visible on PET scans, but the chemo’s been prescribed to keep the cancer reappearing.” And her concern is the long-term damage, she wonders, of getting chemo infusions over a long time. She says, “What could be the downside of chemo over a long term?” Dr. Gray?

Dr. Gray:                

Yeah. So, one of the things that we – well, congratulations. I’m glad that you’re doing so well. That’s really inspiring to hear. And I think that speaks to the fact that there are patients and cancers out there that respond to chemotherapy and I think that we should still keep that in mind.

The long-term side effects that we generally worry about with chemotherapy are how they affect your blood counts. And by blood counts, I’m talking about your bone marrow. So, your red blood cell counts. So, your hemoglobin and your hematocrit. Your white blood cell counts. Your leukocytes. Your neutrophils. Things that help you fight bacterial infections, viruses. And then your platelet counts. These really help with your clotting. So, if you cut yourself.

Pemetrexed, in particular one of the things that we’ve noted when you keep receiving this treatment in particular over time is that the anemia seems – can sometimes be a rate limiting step. So, I’d definitely keep an eye on your hemoglobin and hematocrit.

But I’ve had patients on these maintenance therapy agents for many years. A lot of times what I will do to lessen the burden for the patients. Normally the drug is infused as an IV infusion over ten minutes every three weeks. I will go to once every four weeks so that you’re only coming in once a month for a treatment to add more to quality of life. And then I’ll start increasing the frequency of the scans to less frequent. So, maybe quarterly you’ll get a scan instead of every six weeks. So, hopefully all these scans can help lessen the burden of the infusion and also help to improve quality of life at the end of the day. But I would certainly be careful of watching the blood counts within the study.

Oh, I think you’re on – are you on mute?

Andrew Schorr:   

Yeah. I’ve got it. Sorry.

Dr. Gray:                

Yeah? Sorry. 

Andrew Schorr:   

Dr. Rosenberg, related to toxicity you referred earlier about MRI-guided radiation. What are you doing in the radiation oncology field to get at the cancer, but not effect either healthy tissue – and also lower the side effects that can go with radiation. People that fatigue and other things that go along with it. And all of you have been talking about higher quality of life where you might be living with lung cancer.

Dr. Rosenberg:    

Yes. Yeah. It’s a great question. And I think how we’ve approached this in radiation oncology is actually by shortening our treatment courses. And as our technology has improved it will also give us very small volumes of irradiation with high doses to destroy cancer cells, but also sparing normal tissues. And as patients are living longer with lung cancer, we kinda have to say sometimes they’re responding well to chemotherapy or immunotherapy or targeted therapy, but one area is starting to grow, we use this targeted therapy called stereotactic body radiotherapy, SBRT. So, [inaudible] go after these important small areas that might be not responding appropriately or may even be resistant.

But these are targeted areas that we’re irradiating that are very small in volume. That’s really helped us limit toxicity, but to normal tissues going forward. And with the new MRI-guided treatment program, which is where my focus is gonna be, is that by having the MRI help us guide our treatment in real time, we can make our volumes even smaller. And by shrinking our volumes and targeting tumors more appropriately we can hopefully spare normal tissues and actually decrease side effects long-term for patients.

And so, again working with our medical oncology colleagues is that if there’s an area of resistance that pops up, an area that we can very precisely target, we’re still sparing a lot of the normal tissues in your body.

Andrew Schorr:   

Okay. Precision radiation oncology?

Dr. Gray:                

Yeah. Yes.

Andrew Schorr:   

Okay. 

Dr. Gray:                

And we do that also. And if I may add that if there’s somebody who’s on a treatment benefiting and they just have one area that’s kinda this rogue tumor that breaks through and becomes resistant, that definitely looping in the radiation oncologist, working with Dr. Rosenberg and his team, and targeting that specific area can be very effective for patients.

Andrew Schorr:   

Okay.

Dr. Gray:                

Before you switch therapy.

Andrew Schorr:   

Here’s another aspect of immunotherapy. So, we talked about these PD1, PD-L1 drugs, checkpoint inhibitors. So, another area that’s particularly happening in the leukemia’s that I know well is what’s known as CAR t-cell therapy, chimeric antigen receptor t-cell therapy. Where if I get it right, correct me if I’m wrong, you can sort of engineer t-cells to become sort of a targeted therapy.

Dr. Gray:                

Yes.

Andrew Schorr:   

All right. So, what about this in lung cancer, Dr. Gray?

Dr. Gray:                

Yeah. So, it’s a great question. So, one of the areas – this has really taken off in the hematologic malignancies are these CAR-T therapies. The hematologic malignancies are very well-defined by specific markers on the cells that are uniformly found across different types. So, lymphomas, leukemias. In the solid tumor realm, it’s been a little bit more of a challenge with finding where to specifically target. And also, to target the cells without adding significant toxicity to the patients.

So, we do have what’s called an ICE-T therapy here. It’s the immune and cellular therapy. It has medical oncologists on that team, both hematologists and hematologists. And they’re working together to help bring what we’ve learned from the hematology world over to the solid tumor realm. So, it’s new. I don’t think it’s yet ready for FDA-approval, but absolutely a very exciting, exciting field. Again, the purpose of these is to create these long-lasting responses with a personalized medicine approach.

Andrew Schorr:   

Yeah. I wanna thank Gordon for that question. I think we hear about – you mentioned TV commercials, or we see an article in the paper.

Dr. Gray:                

Yeah. Great question.

Andrew Schorr:   

And we say, “Oh, how does that apply to me?” Or, “Should we get on a plane and go somewhere because they’re trying this out?” It’s really tough. So, Dr. Boyle, you see this changing field.

Dr. Boyle:               

Okay.

Andrew Schorr:   

What would you say knowing what you know in going on and identifying new genes, if you had a family member – and I hope you haven’t, but if you had a family member diagnosed with one of these conditions, what advice would you give them? Because you’re on the inside. Or maybe you have friends or neighbors that call you up, “Oh, my God. We got this diagnosis. What should we do?” What’s sort of an operating system for patients and families today? What would you say?

Dr. Boyle:               

Right. Well, one thing I want to ask always, what Jhanelle was talking about earlier with the clinical trials, if you are getting the optimal standard of care plus whatever new innovative potential therapy might be available with those trials. And there actually is a better outcome with the participation in the clinical trials. They’re very carefully designed.

So, I would want a family member or a patient, it is the same, to get as much information as possible. And like Jhanelle said, it’s fine to get your care locally, but to get a second opinion at the most advanced center available to you for a second opinion. Get more information. See what’s available. Consider clinical trials. Sometimes just following the basics. Like if you have an EGFR mutation to get an EGFR inhibitor therapy and not be wanting say immunotherapy just because it’s the newest thing. That’s what I’d be thinking about. And getting the rapid care can be important too.

One thing I wanted to add onto what Jhanelle said earlier about the T-CAR conversation is that we also have a trial here with the tumor infiltrating lymphocyte. It’s not by definition a T-CAR trial, but it’s in lung cancer. And they’re basically taking lymphocytes out of tissue and growing them up in cell culture and reinfusing them into lung cancer patients in the hopes that the reinfused cells will attack the tumor. And I just think this is amazing progress that this being tried in lung cancer too.

Andrew Schorr:   

Here’s a point I wanted to make. So, I hope what all our viewers get – and I think we have some pretty savvy questions that have come in. The field is changing. And so, Dr. Gray, I’m sure when you went through your training there wasn’t always a lot to talk about with patients, right? 

Dr. Gray:                

Oh. No. That’s very true.

Andrew Schorr:   

And now we have people like Ed who are living longer, living pretty well. There are side effects we’ve talked about. Ed was talking about trying to limit that. So, the quality of life goes along with living well and living longer. But there’s a lot of progress being made, and you and your family have to be plugged into that. And yet, Dr. Boyle just referred to that. Don’t get excited about something just that you see on TV because it may not be right for your specific situation. And Dr. Gray was warning about that too. If you have EGFR, that’s not the time for immunotherapy, right?

Dr. Gray:                

Correct.

Andrew Schorr:   

Even though you saw the ad of people in town square. New hope for lung cancer. 

Dr. Boyle:               

On the highway. Yeah.

Dr. Gray:                

Yes.

Andrew Schorr:   

Yeah. So, you really have to – you really have to think about that. So, testing, broader panel, second opinion, team approach? 

Dr. Gray:                

Yes.

Andrew Schorr:   

We’ve got a wonderful team here.

Here’s a question that we got in. We just have time for a few more questions. But Helen asked this question, “Is there any research or anecdotal information on how much the drug Alimta adds to the efficacy of another immunotherapy Keytruda. Does it continue to be effective indefinitely or does it only work for a while?” Dr. Gray?

Dr. Gray:                

Yeah. So, there’s a recent study called the Keynote-189 study that combined Pemetrexed, Carboplatin, plus Pembrolizumab. So, Pembrolizumab is the immunotherapy. The Pemetrexed is the chemotherapeutic agent. And they treated those patients with the Pembrolizumab up to about two years.

The study was published, and it was found to be positive in the sense that it improved patient’s overall survival. So, how long were you gonna live? And also, what we consider your progression for your survival. How long did it take your cancer to actually progress to the point that we would need to switch your therapy? So, it was longer in that group than just giving the chemotherapy group.

You ask a very good question. These are the questions that we also, within the lung cancer field, are asking. How long do we really need to give these therapies for? Especially when you’re giving them in combination with immunotherapy when the goals of immunotherapy are to create long-term memory.

We have studies looking at giving immunotherapy for one year. We have studies continuing the immunotherapy indefinitely. And we have studies looking at giving the immunotherapy for two years. I think outside of the stage three – in the stage three setting, the clear data is that you give it for one year. Outside of that, I still think that it’s still a tossup. My suspicion is that you should at least probably go beyond one year if you can and see if you can’t get to the two-year mark. That’s where most of the data is at a minimum.

I actually have a patient now coming up on her two-year mark in February of this year on Pembrolizumab and I’ve started having those discussions with her and it’s an open discussion that, “This is what the data shows. What do you feel comfortable with?” And so, I think there needs to be a shared decision-making process within this realm also. And what the patient feels comfortable with and what the data helps to support. So, I think keep having those conversations, especially if you’re getting it combined with the immunotherapy. And hopefully there will be more to come definitively.

Just for a historical perspective, if you look back many decades ago when chemotherapy first came out, we used to give chemotherapy for a year. Then they did the trials where they actually looked at it at a year versus six months. The outcomes were the same with giving it over six months. And then they went from about six months versus about three months of therapy. And now went back a little bit, but added the maintenance in. And so, there’s definitely these trials will come, it’s just going to take time. The world of immunotherapy is very novel within the realm of lung cancer. And so, we have lots of growth to do.

But fantastic question. That’s probably one of the things that we sit and debate at our meetings very frequently.

Andrew Schorr:   

So, as we come near the end of our program, I wanted to get some final comments from our panelists. I’m gonna end with Ed because Ed, I want you to talk to other patients and family members.

But what I get from this is the field is pretty rapidly changing. Whether it’s in radiation and how that applies to other therapies. Whether it’s combination therapies, sequential therapies, duration of therapies we were just talking about with Dr. Boyle. It’s about identifying new genes or combinations of genes and trying to figure that out. So, what do you wanna say to a patient audience?

I’m gonna start with you, Dr. Rosenberg. So again, we have people all around the world and they or a family member has been given what’s a pretty terrifying diagnosis.

 Dr. Rosenberg:    

And it’s a scary time as they’re facing this. And actually, what I’m talking about here in Madison is actually putting together your medical and emotional teams as you’re basically facing this new diagnosis. And I think that’s the big thing is putting together a team and being someplace where you have the support and you feel comfortable. And also seeking out multiple experts to try to come up with the best plan you can moving forward.

And I think as Dr. Boyle, Dr. Gray, as the panels all alluded to, seeking that second opinion just to at least know what all your options are and are available to you is really important. Building your treatment team which includes so many different experts both that you’re gonna meet in person and behind the scenes. And I think that’s the real key aspect to this.

Andrew Schorr:   

Well, thank you for what you do. And this cool area you were talking about having radiation trigger a response in the cell that can make it more responsive to new medicines is really great. Good luck with all of that. Thank you.

Dr. Boyle, so you are a CSI detective. You are. You have like a magnifying glass.

Dr. Boyle:               

I love my job.

Andrew Schorr:   

Yeah. You have much more powerful tools than that. But you’re a sleuth. So, are you confident that this field is – will continue to expand to really unlock these secrets so you can say to these other team members, “Hey, I think this is what we’re dealing with and here’s a key pressure point to go beat that cancer.”

Dr. Boyle:               

Yes. Yes. I’m very optimistic. When we validated this 170 gene panel we did not even know if we would be reimbursed, but we did it anyway because we have so much optimism that it will have value and show value. And I really feel like understanding the cancer better. And it’s a key to better therapy. And my thinking is that patients should hold onto their hope throughout their whole experience and stand their ground. 

Andrew Schorr:   

Yes.

Dr. Boyle:               

Know what they want and don’t want and ask questions to their oncologist if they have questions. Because there’s a whole new world here and we’re all trying to figure it out together as a team. But we really appreciate the input from the patients as well. I think that’s helpful to helping all patients and future patients as well.

Andrew Schorr:   

Well, I wanna thank you for what you do behind the scenes as far as we patients and family members see you. But with your colleagues around the world continue to make these discoveries so that the therapies can be targeted or more broad. But whatever they are, know what we’re dealing with, so we get what’s right for you. Dr. Boyle, thank you for being with us too.

Dr. Gray. So, you have these partners here and we have patients and family members who you’re partners to. And as I alluded to earlier, in your own career you’ve seen a lot of change.

Dr. Gray:                

Yes.

Andrew Schorr:   

Is this a message of hope? And are you comfortable that more of us – even now we’re talking about small cell lung cancer where there’s progress being made that can extend life.

Dr. Gray:                

I’m very hopeful. I think that we have completely revolutionized how we treat patients – treat lung cancer and treat the patients battling lung cancer. We’re with you there right along helping you with that fight. And to your point, when I first started doing this I literally spoke to patients about chemotherapy. That’s what I had to offer. And it was just trying to make that selection process about which chemotherapy I thought was going to be right for you. And helping you with sequencing. “Okay, we’re gonna start with this and then we’re gonna plan for this and we’re gonna plan for that.”

And the game has completely changed, I think, with the genomic profiling. It is extremely important. We really have to go to these broad-based panels up front. And for right now, I just wanna emphasize tissue is the gold standard, but I really think that circulating tumor DNA is something that we can – certainly we’ve made a lot of significant progress and then can identify these mutations.

As you identify these mutations, checking them longitudinally over time to see how they evolve is gonna be very important. And that will help us continue to personalize treatment at what point do you pivot from a targeted therapy to a clinical trial to an immunotherapy to a chemotherapy. And all of these things come from sitting down, looking at the scans, looking at the patient, looking at these molecular reports, getting everybody on the same page and then making – again I think having a shared decision model. Setting, “What are your goals? What are your hopes?” And then making sure that we match that as best as we can.

Andrew Schorr:   

Wow. Get tested, folks.

Dr. Gray:                

Yes.

Andrew Schorr:   

Have your family member get tested and then raise the question with your team, “Do we needed to be tested again?” 

Dr. Gray:                

Yes. Yeah. 

Andrew Schorr:   

All right.

Dr. Gray:                

Absolutely.

Andrew Schorr:   

And then I think Dr. Gray, I just wanna underscore a point she made about your goals. 

Dr. Gray:                

Yes.

Andrew Schorr:   

So, Ed thinks about that. And Ed, I’m gonna give the final comments to you about speaking up for yourself.

Dr. Gray:                

Yes. 

Andrew Schorr:   

How do you get the care that’s right for you and how do you wanna live your life? I mean you and Donna wanna do some more traveling, right, Ed? I hope you can.

Edward Cutler:     

We’ve been very fortunate. No question about it. When I first got my diagnosis, I was devastated. I thought my world was gonna end in a year. But I started talking to my doctors, started talking to other patients in similar situations and I found that, yeah, there was hope. I put together a bucket list. And I found that my bucket list wasn’t gonna be limited to a year. So, I expanded my bucket list. And now it goes on at least ten years out now and I’m very hopeful of that.

As I said, I’ve spoken with a lot of patients here within Moffitt, around the state, around the country, and some internationally through support groups. And we help each other. We cry on each other’s shoulder and then we tell each other our problems. And somebody has an experience that they went through and it might be helpful to another patient. Now, I think it’s very important to open up your heart and open up your ears and your mind and listen to other people. Don’t just look at what you read on the internet. Who knows what the truth is what you read on the internet. A lot of it is – I don’t know. It’s not necessarily factual.

But I think if you talk to you doctors, to your team, and your team doesn’t include just your doctors. It’s your nurses, it’s the nurse’s aide, it’s the social worker, it’s the nutritionist.

Dr. Gray:                

No. 

Edward Cutler:     

All of these people can be very helpful for just about everybody who has an advanced diagnosis.

Andrew Schorr:   

Well said, Ed. We have this medical team here that represents some of those others that Dr. Boyle mentioned, the personalized medicine people, the pharmacist, you mentioned social workers. Before we have to go, I wanted to give you the chance if you want to say thank you to these folks or what they represent on behalf of patients. What would you wanna say?

Edward Cutler:     

I am just so thankful to every person that I’ve dealt with here at Moffitt. They have made the process if not the simplest thing in the world to deal with, pretty darn simple anyhow. My doctors have explained things to me that I didn’t even know how to ask the questions in some cases. And it’s just been wonderful. I’ve become an advocate for Moffitt. I talk to people in the community. I go to Tallahassee with a group of people and talk to our legislatures about funding for Moffitt. I’m participating in the Miles for Moffitt next month as a volunteer. Not as a runner, but as a volunteer, to help raise money for Moffitt to find if not the cure at least the way to extend someone’s life with good quality.

Andrew Schorr:   

Wow.

Edward Cutler:     

And I thank you all for that.

Andrew Schorr:   

We wish you all the best. I wanna say to our audience that could be anywhere in the world, I think the lesson of what Ed is saying is go to a center where they’re knowledgeable to at least get a second opinion, Dr. Boyle had mentioned that earlier, and connect with a team like this. And then when they help you and you’re given higher quality of life hopefully and longer life, then go to bat for other people. Whether it’s with your center, like Ed has, or in a state, speak out because you can help a lot of other people. I try to do that too.

Edward Cutler:     

One other thing, Andrew. I have another thank you. Well, it’s actually two other thank yous. First to my wife for being a great support. And second, to the man who had the vision to make Moffitt reality. And that is H. Lee Moffitt who at one point in time was the speaker of the house of the Florida legislature. It was his vision. Unfortunately, he had cancer and that generated his vision. But he’s still going strong and he’s still working very hard for this institution.

Andrew Schorr:   

Well, I wanna mention then lastly that we can all make a difference. The doctors making difference, patients, family members in that collaboration and in helping others. I wanna thank everybody for being with us today. I’m Andrew Schorr. Remember, knowledge can be the best medicine of all.


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

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

Living Well With Lung Cancer

Downloadable Program Guide

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


Transcript:

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

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

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

Jessica Wittebort:
Yeah, I appreciate that.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Jessica Wittebort:
She just turned 30, yeah.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Andrew Schorr:
Go ahead.

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

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

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

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

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

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

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

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

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

Andrew Schorr:
And you were saying about retesting?

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

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

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

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

Janet Freeman-Daily:
Yes.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Janet Freeman-Daily:
Inaudible.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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


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

The Case of Lung Cancer

Let’s face it. What we know about lung cancer is grim. It is the leading cause of cancer deaths in the United States for both men and women, and more than half of those with lung cancer die within one year of being diagnosed. The five year survival rate is only 18.6 percent, so that means that out of 100 people diagnosed, 82 of them don’t make it. The data alone is enough to be discouraging, but couple that with the stigma attached to the disease, and the people who have it, and the public perception about lung cancer becomes extremely negative.

The stigma attached to lung cancer comes mainly from the connection the disease has to smoking. For more almost seventy years now, we’ve known that lung cancer is a risk factor of smoking. Anti-smoking and tobacco campaigns have been successful in making sure the public understands that if we don’t want to get cancer, we shouldn’t smoke or use tobacco products. The good news is that as smoking rates have decreased, so have lung cancer rates. The bad news is that as lung cancer became known as a “smoker’s disease”, people began to believe that if you got lung cancer, you were to blame. As a result, lung cancer patients may feel that they receive less sympathy from their healthcare providers and others, and feel compelled to hide their condition causing them to suffer from guilt, anxiety, depression and isolation. Patients suffering from a stigmatized disease also may avoid or delay seeking treatment or a second opinion, and may receive lower quality of care. In addition, the clinical guidelines, diagnostics, and treatments for lung cancer aren’t as comprehensive as they are for the cancers without stigmas attached. Further, there is less research, data, and funding about how to increase lung cancer survival rates.

Often, it is the survivors of a disease, or family members who have lost a loved one, who form the advocacy groups, drive the fundraising efforts, and are the proponents for research. That hasn’t seemed to be the case for lung cancer for a couple of reasons. First, the stigma attached to lung cancer prevents survivors from speaking up because of the shame and guilt associated with having the disease. The stigma also appears to carry over to family members and others, such as celebrities and community leaders, who don’t feel comfortable advocating for those who are perceived to have caused their own illness. Secondly, lung cancer has a low survival rate, and, therefore, fewer survivors to lead the charge.

In order for the fight against lung cancer to have some of the same advances that less stigmatized cancers have, the public awareness needs to go beyond the labeling of lung cancer as a “smoker’s disease.” People who have never smoked, and those who quit many years ago, get lung cancer. Lung cancer can also be genetic. There are many risk factors for lung cancer in addition to smoking. They include: being exposed to secondhand smoke, asbestos, arsenic, chromium, beryllium, nickel, soot, or tar; exposure to radiation therapy to the breast or chest, radon, and imaging tests such as CT scans; living where there is air pollution; and a family history of lung cancer. While we don’t want to diminish the risk of smoking and the benefits of giving it up, it is important to note that not all smokers get lung cancer, and not all people with lung cancer are smokers.

Despite the stigma and negative public perception, there are organizations such as the American Lung Association and Patient Empowerment Network who are working to reduce the stigma of lung cancer and raise awareness about the disease. The PEN Living Well with Lung Cancer series is a live-streamed webinar program where patients, and their family members and caregivers, have the opportunity to interact with experts in the lung cancer field. The programs include panel discussions and a question and answer session. The program is recorded and made available through our website. PEN also provides town meetings and conference coverage with topics pertinent to those affected by lung cancer. Through our Notable News posts on our blog, we strive to provide patients with information about the latest advancements in all cancers, including lung cancer. This month you’ll discover that there is good news about lung cancer, thanks to new findings about sugar and cancer’s attraction to it. You can find that information and other updates here.

It is important for lung cancer patients, and all cancer patients, to maintain focus on the good news and to have hope. Every 2.5 minutes, someone in the US is told that they have lung cancer. Wouldn’t it be wonderful if they could also be told that there is hope?


Sources:

https://seer.cancer.gov/statfacts/html/lungb.html

https://www.lung.org/assets/documents/research/addressing-the-stigma-of-lung-cancer.pdf

https://www.cancer.gov/types/lung/patient/non-small-cell-lung-treatment-pdq#section/all

https://scienceblog.cancerresearchuk.org/2018/11/16/science-surgery-why-do-never-smokers-get-lung-cancer/

Notable News: November 2018

November is National Lung Cancer Awareness Month, and if ever there were a cancer that needed an awareness month, it’s lung cancer. Sometimes referred to as the invisible cancer, lung cancer is a disease caught up in a smoke cloud of misconceptions, and those misconceptions can prevent patients from early detection, treatment, and support. Several of the myths and misconceptions about lung cancer are addressed and dispelled in a recent article at fredhutch.org. One of the main myths is that you only need to worry about lung cancer if you are or ever were a smoker. That’s simply not true. In fact, people who have never smoked can get lung cancer, and it can be a genetic disease. Other myths include the belief that there are no early detection screening processes and that there has been no progress in lung cancer research. While it’s true that other cancers seem to have more screening options and better prognosis, advancements are being made in lung cancer. Organizations such as Patient Empowerment Network are making progress in building awareness and reducing the stigmas about lung cancer. See the rest of the myths and misconceptions and how they are dispelled here.

There is nothing sweet about having lung cancer, but there may be a sugary clue that could lead to earlier detection, reports forbes.com. Researchers have discovered that early-stage, non-small cell lung cancer (NSCLC) tumors and precancerous lesions produce high levels of a molecule that they use to consume sugar to help fuel their growth. The molecule, called SGLT2, could be used to detect early stage NSCLC. Researchers also found that a diabetes drug, which blocks SGLT2, also prevented tumor progression in mice, which shows promise for possible future treatment of NSCLC. Further studies of SGLT2 could hinder the development of malignant NSCLC, and more information about this hopeful development can be found here.

Another hopeful lung cancer development comes in the form of a hot needle, reports dailymail.co.uk. The treatment, called radio frequency ablation, is being used to diagnose and treat difficult-to-reach tumors. In addition to being able to destroy the tumor by heating it up with radio frequency energy, doctors are able to use the needle to remove part of the tumor for biopsy. The needle works in place of attempting to access the tumors through invasive surgery. The hot-needle treatment is considered safe for repeated use, and a report showed that half of the patients treated with the hot needle survived at least five years. More information about this hot new treatment can be found here.

We would be remiss if we didn’t note that November is also National Family Caregiver’s Month. There are approximately 43.5 million unpaid caregivers in the United States and they are a critical component of a cancer patient’s journey. It is important for caregivers to make sure they are practicing self-care as well, and there are a number of resources available to them to help ensure caregivers have the information they need to care for their loved ones and themselves. The PEN Path to Patient Empowerment guide provides resources for care partners, including links to the Family Caregiver Alliance website and the American Cancer Society Caregiver Resource Guide. Chock full of information for caregivers about caregivers and the patients they care for, these resources are a must have for any caregiver and can be found here and here.

Oh, and November is also the month where we give thanks. Happy Thanksgiving from the PEN Family to your Family. We are thankful for you!

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.

Notable News: September 2018

Since smoking is the leading cause of preventable disease and death worldwide, reports about it don’t usually contain good news, but this month they do. The International Association for the Study of Lung Cancer (IASLC) is convening in Toronto, Canada this week for the 19th World Conference on Lung Cancer #WCLC2018, and the importance of screening is being emphasized. Data coming out of the conference shows that CT screening reduces lung cancer deaths by 39% in women and 24% in men. Cdc.gov says the only recommended screening for lung cancer is low-dose computed tomography (also, low-dose CT scan or LDCT). Yearly lung cancer screenings are recommended for people who have a history of heavy smoking, smoke now or have quit in the past 15 years, and are between 55 and 80 years old. So, if you are at risk, make sure you are getting screened! Also, you can find the cdc.gov fact sheet about smoking here.

Another study shows that smoking might not remain the leading cause of preventable disease and death, but something else is going to take it’s place. Right now smoking is the leading cause of preventable cancer among women in the United Kingdom, but that is set to change, reports cnn.com. Thanks to a reduction in smoking and an increase in body weight, obesity will be the leading cause of cancer in women by 2043 if current trends continue. The news is particularly alarming because obesity can also cause some cancers, including breast cancer, to spread. Data collected between 1979 and 2014 was analyzed to determine the projections. Campaigns highlighting smoking risks are credited with the reduction in smoking-related cancers, and researchers are suggesting similar campaigns about the risk of obesity be implemented. More information can be found here. These findings aren’t unique to the UK; this report from November 2017 shows similar trends in the United States.

Obese or not, the quality of your food can increase your risk for cancer, reports medicalnewstoday.com. A study done in Paris shows that regular consumption of food low in nutritional value increases cancer risk. Of the 471,495 participants in the study, 49,794 had been diagnosed with cancer. More specifically, the findings showed men had an increased risk for colorectal cancer, cancer of the upper aerodigestive tract and stomach, and lung cancer. Women showed an increased risk for liver cancer and postmenopausal breast cancer. The research is being used to support the enforcement of a food-labeling system that would clearly state nutritional value of products. Learn more about the study and the food-labeling system here.

More good news comes this month in the form of new information. A study reported in cancer.gov reveals that cancer of the appendix, while usually given the same chemotherapy treatments, is actually quite different from colorectal cancer and other gastrointestinal cancers. The study also showed that the type of gene mutations present in appendiceal cancers could serve as an indicator for a patient’s prognosis. While the study isn’t likely to change practice yet, the information does provide helpful information about a rare cancer, and it indicates a need to develop treatments based on each specific cancer subtype. Much more detailed and technical information about the study findings and appendiceal cancers can be found here.

Finally, there are a couple of stories that happened this month that are worth sharing because they emphasize the poignancy of National Childhood Cancer Awareness Month in a way that little else could. The first is a love story about a couple that recently got married on the grounds of St. Jude’s Children’s Research Hospital. The bride and groom are both childhood cancer survivors who met at St. Jude’s while undergoing treatment 25 years ago. They lost touch over the years, but they were reunited when they both accepted jobs at St. Jude’s, and they rekindled their childhood friendship. Their friendship blossomed into love, and this couple of survivors chose September 1, the first day of Childhood Cancer Awareness Month, as their special day. Read more about the couple’s big day here. Bonus: there’s a video!

The second story is a different kind of love story. It’s about two-year-old Brody Allen. Brody has terminal brain cancer, and he loves Christmas. Brody isn’t expected to make it to Christmas this year so his parents decided to celebrate Christmas early. They put up a tree, and they put up outdoor decorations. Then, their neighbors started to decorate, too. Soon, the whole town was in on it and, earlier this week, Brody’s hometown put on a full-on, life-size Christmas parade in his honor, complete with super heroes and Santa Claus. You can read more about Brody here and see clips from his parade here. Merry Christmas, Brody.

Living Well with Lung Cancer: Mind-Body Medicine

Mind-Body Medicine: How Can Cancer Patients Utilize Supportive Care Therapy Tools?

Recent studies support mind-body interventions, like yoga and mindfulness, as being responsible for helping to stabilize and manage symptoms and side effects of treatment. Preliminary studies show that mind-body medicine has the ability to lessen fatigue, anxiety, respiratory toxicities, sleep disturbance and emotional distress for not only patients, but care partners. Watch along as Certified Yoga Therapist Raquel Jex Forsgren and Dr. Ishwaria M. Subbiah explore mindfulness.

To see all our Lung Cancer programs, please visit our Lung Cancer page.

Downloadable Program Guide


Transcript:

Andrew Schorr:

And hello.  I’m Andrew Schorr with Patient Power.  And (? Inaudible).  We’re going to help you be more in control of your cancer journey, you as a patient or you as a care partner.  And I want to thank our sponsors for the program, Celgene Corporation, Genentech, Helsinn and Novartis for their financial support.

Now, you can send in questions if you haven’t already.  Send them to questions at patientpower.info, questions@patientpower.info, and we’ll take your questions later on with our experts.  Okay.

What are we discussing today?  Well, think about it.  If you have lung cancer or, like me, chronic lymphocytic leukemia‑‑I have another cancer too, 22 years I’ve been dealing with this, some of it‑‑myelofibrosis, a myeloproliferative condition, if you have multiple myeloma or pancreatic cancer, whatever it may be, you may get hit with heavy duty treatment, and that has side effects.  How do you cope with that?  And then you have all the issues that go with your diet, if you feel like eating, your mental health, your physical health.  Are you moving?  What are you doing?  The same for your care partner as well because they’re there along the way.

We’re going to be discussing all that, and we have some leading experts and I want to introduce them.  First of all, I want to start with my wife, Esther Schorr, who has been on this journey with me for 22 years.  Esther, welcome to the program and being my partner in life and on this.  Hi, Esther

Esther Schorr:

Oh, I can’t say that it’s been easy being your partner all these years, but it’s my pleasure to be here, and it’s been a pleasure to go along on this‑‑not a pleasure, but I’m happy to go along on this journey (? Inaudible).

Andrew Schorr:

Right.  In a minute we’re going to talk about some of our coping strategies, but I want to introduce you to our two other experts on this.  First of all, let’s go to Houston, Texas, to the MD Anderson Cancer Center where we’re joined again, because she’s been with us before, Dr. Ishwaria Subbiah, who is assistant professor of palliative, rehabilitation and integrative medicine.  Dr. Subbiah, welcome back.

Dr. Subbiah:

Thank you so much for having me.  It’s a pleasure to be here.

Andrew Schorr:

Okay.  We’ve got a lot to talk about.  And now let’s go up to Chicago where we’re joined by an expert in yoga, a certified yoga therapist, and that’s Raquel Forsgren who is an expert in yoga as it applies to cancer.  Raquel, welcome to the program.

Raquel Forsgren:

Thanks, Esther.  Thanks Andrew.

Andrew Schorr:

Okay.  Let’s go back to Esther for a minute, and we’re going to catch up with you two in just a minute.  So, Esther, a little about our story, when I was diagnosed with leukemia, when we were diagnosed, if you will, 22 years ago with chronic lymphocytic leukemia I didn’t say this to you, but I thought I’d be dead in short order.

Esther Schorr:

Well, I didn’t say it to you, but I was concerned the same way, Andrew.  It was very, very frightening.

Andrew Schorr:

So the diagnosis sends any of us reeling, and the care partner as well.  So let’s talk about that.  Esther, you had me getting distilled water for the house.

Esther Schorr:

Distilled water for the house‑‑

Andrew Schorr:

Wondering if we should move away.

Esther Schorr:

Yeah.  We wanted to move away from power lines and went to an energy therapist.  I think you even had hot stone therapy.  I can’t remember all of the things.  We were juicing at the time Andrew Weill had his‑‑

Andrew Schorr:

He had me stop drinking coffee because you saw a program with Dr. Weill from University of Arizona, an integrated medicine expert, and he said, well, maybe you shouldn’t drink coffee.  We lived in Seattle where there’s a Starbucks on every corner‑‑

Esther Schorr:

It was really hard.

Andrew Schorr:

And expanding, so.

Esther Schorr:

Yeah, but there were other things, Andrew, really more relevant.  I mean, those are the things that I think you and I thought, well, maybe we can get some control over what’s going on.  But really at the root of some of this is the things that really helped us, at least I can talk for myself.  I know you and I went into counseling to try to figure out how to cope together, and for me knowing that I had to be your care partner‑‑and we also had two small children at the time‑‑I’m a very anxious person by nature, and I found, and it may not be right for everybody, but I found that medication really helped me.

And that started about the time that‑‑it started at the time when you were diagnosed and to this day it’s really been helpful to me and I can’t wait to talk to Raquel because I now do yoga, and we’ll talk about that.  Yoga has helped me tremendously along the way.

Andrew Schorr:

And we did continue to exercise.  Esther and I have been joggers, if you will, and so we did that, and we continued that as I got chemo and other treatments.  Maybe we couldn’t run as far or I didn’t run as far or as fast, but we’re big believers in exercise to this day.  And it’s helped.  And the one other thing I would say is the religious component, we’re Jewish, so we would consult with our clergy and trying to get my head on straight related to our faith.  And if life would be shorter, how did we live our life, what would we say to our children or whoever would follow about what our life was.  So religious, psychological, exercise, medication support, right, Esther, related to anxiety.

Esther Schorr:

And leaning on community.  You know, I know for some people it’s hard to ask for help, but if you can find it in yourself to let go a little bit of your ego and pride.  I know for me and I think for you too, Andrew, just reaching out to our closest friends and family and saying, hey, we need some extra support.  Give us what you can, was really, really helpful.

Andrew Schorr:

Right.  All right.  Dr. Subbiah, let’s have some terms that we understand as we begin.  So, first of all, your palliative care, you’ve explained this to us in other programs, it’s not about necessarily you’re near death.  It’s about helping support you on your cancer journey.  Supportive care, what does that mean?  Mind‑body medicine, what does that mean?  So maybe you can define some of this for us today so we all have a common lexicon, if you will.

Dr. Subbiah:

Absolutely.  And so when you hear the terms “palliative care” most people, the first thing they think of is hospice care.  So something that, a service that’s engaged towards the end of life.  But the reality is that palliative care is symptom management.  It’s been taking care of that whole person and the people around them who matter to them as they go through the treatment for cancer.

So palliative care, we’re involved more and more, really from the time of diagnosis because most people feel the burden of this diagnosis, sometimes even before because you know that something is wrong leading up to the diagnosis for many people.  And so a bulk of my practice is taking care of a person as they go through cancer treatment.  So we refer to that as supportive care.  We’re supporting you through (? Inaudible).

So things that may come up, cancer pain, nausea, trouble breathing, depression, anxiety, distress, spiritual distress, spiritual pain.  So there are many elements that go with this diagnosis of cancer.  So our multidisciplinary team helps with managing that in the supportive care realm.

Palliative‑‑supportive care falls under palliative care, and so there is a component that is closer towards the end of life where the‑‑your body is going through the changes that are very natural.  And we want to make sure that the suffering that you’re afraid of or somebody who cares about you is afraid of, we can minimize that to a great extent.  The pain of that moment of life may not change, but the suffering that we associate with our passing from any reason doesn’t have to be there with the engagement of a palliative care physician.

Andrew Schorr:

Okay.  I want to get to mind‑body connection.  So this has been a debate in the medical profession for years, both for you and maybe your care partner.  So do we have like some control with the way we live our life or think about things that affect cancer?

Dr. Subbiah:

So mind‑body, there are many schools of thought on what it is, but if you put all the academic aside the meaning comes down to exactly what’s words are.  Your mind is very closely related to your body, and your body function is very closely related to your mind.

So what it means for us in the realm of cancer care either as a provider or as a patient is there is a component of everything that you’re feeling that can potentially be modified by mindful practices.  It may not change it altogether, it may not make it go away altogether, but there’s a component of symptom management that is beyond medications, that’s beyond a pill that involves practices that are what fall under the realm of mind‑body practice.  And so some of these are ones you’re heard of, acupuncture, massage therapy, guided imagery, music therapy and certainly yoga as well.

Andrew Schorr:

Yeah, and generally exercise.  Okay.  So you mentioned yoga.  So, first of all, there has been a study to show I think preliminarily that yoga, and I’m not sure if it was done at MD Anderson or where it was done, where there was a benefit they said for yoga, for yoga participation, both for the patient and especially the care partner, right?

Dr. Subbiah:

Absolutely.  And so that study was done at MD Anderson, and it was spearheaded by our department.  So what we wanted to show is that for a person who is going through chemotherapy and radiation for their lung cancer, that would a structured yoga intervention help them as well as their caregivers.  So what you’re looking at is an intersection where we not only acknowledge the distress of the person with the cancer and going through treatment but also of the person who is going with them on that journey.

And so this yoga intervention was structured to be given to both‑‑to be practiced by both the patient as well as their caregiver.  And so it was done for a 12‑week period with follow‑ups subsequently.  And we were able to show that there was a statistically significant and clinically meaningful difference improvement in the level of fatigue, in the level of activity in that person, which we measured by a six‑minute walk test.

So if the person was able to do a bit more physically as a consequence of participating in this program when compared to the control arm, which did not receive this structured yoga intervention.  And so there are implications on your functional standards, your mood, your energy level of adopting mind‑body practices.

Andrew Schorr:

And this was done for the caregivers as well, wasn’t it?

Dr. Subbiah:

Absolutely.  And so the caregivers also reported an improvement in their overall mood as a consequence of this.

Esther Schorr:

(? Inaudible) I’d just like to interject as a caregiver, a care partner, and I know that Raquel probably will mention this, but I know that there’s a whole range of things that fall into the category of yoga and mindfulness, and again people talk about that, but I know for sure that I have experienced the mind‑body connection in controlling anxiety.  The anxiety thoughts about what‑if in the future for you, what if for user family, that in the mindfulness and the breathing and the things that come with yoga, not just the positions that you do, and I know we’ll talk about that, but it’s more about centering your thinking more positively and turning inward and visualizing good instead of bad scenarios was tremendously helpful.  So (? Inaudible).

Andrew Schorr:

Okay.  All right.  So, Raquel, I’ve got some questions for you.  So you have a background related to yoga and cancer and sort of yoga tied in with cancer.  Tell us what that means and how you got involved in that because normally you wouldn’t think of that.

Raquel Forsgren:

Yeah, how it came to be.  Well, I started researching breast cancer on the bench about 28 years ago and into the pharmaceutical side, on the drug development with side as a pharmacologist, and obviously it worked with a multitude of different types of cancer, and it’s been my passion my whole entire adult life.  And I’ve also had several family members that have gone through the battle, some have won, some have lost, and so it’s very personal for me.

And then on the flip side with yoga therapy, just as Dr. Subbiah was talking, I like to see the entire person, the whole person be addressed.  And we need the oncologist to focus on the treatment and doing all they can to really fight at the disease level, but I think, as all three of you a have just mentioned, a yoga therapist comes in on the other side with what else can you do to help empower the person to actually take control over what they can.  Because there’s so much of a loss of control.  So I’m inspired by that.

And then I work with a lot of the other tools that we’ll talk about in a minute to just help that person control their mind, their breath, their thoughts, their rituals, all positive things that Esther was just talking about.  So that’s sort of my background and my interest in how it became to be working with cancer patients.

Andrew Schorr:

Okay.  So Esther is into yoga.  Esther, you started doing that what about four or five months ago, and now you do it two, three times a week.

Esther Schorr:

Right.  And actually I’m kind of sad I didn’t do it sooner.  But I will say I came into it because I was transitioning to much more let’s say aggressive exercise, running, some weight lifting.  But I found that the combination of yoga‑‑you know, a combination of yoga and the mindfulness and (? Inaudible) somewhat medication is really not hard on my body and really good for attitude.  So, yeah, I mean, I’m a big advocate.

Andrew Schorr:

Okay.  So, Raquel, so yoga might be foreign to people.  I mean, I knew‑‑I learned how to run and jog, but if you had asked me until Esther has been exposed to yoga I’d say that’s foreign.  So maybe you could ease us into it.  Maybe there’s some simple things you could show Esther or you two could demonstrate together that would be helpful for maybe the bulk of us who have never gone near any of this stuff but we do want to feel more in control.

Raquel Forsgren:

Yeah, I definitely will.  First of all, I will say that’s a myth.  There’s a lot of myths around yoga with not being able to do it because it’s too rigorous.  You mentioned Esther kind of coming from a rigorous running, jogging.  A lot of people think of yoga and they think of the postures that they see on social media or in magazines or TV or whatever, and they’re upside down where they’re doing different things, and that’s a beautiful aspect of yoga, but it’s only one.

There are so many different things we can do with yoga, the postures, the breathing, the imagery, as Dr. Subbiah talked about, and deep relaxation, which multiple studies have shown that can actually reset and rebalance someone’s nervous system.  So talk about mind‑body and being able to control that yourself.

So if you’d like to go you through a few techniques now we can do that.  What I would do is invite all of you who are viewing the program to do it with us and see if you can sense the difference in just a few minutes of doing some of these very simple practices, and then what you can do after this is recorded come back to this video and watch the practice again and just implement these, like Andrew said, a little bit on your own.

So what I’ll ask all of you to do, even those of you that are on‑‑joining us with Andrew‑‑and Dr. Subbiah, you can do it as well‑‑I’d like all of you to feel really comfortable, just to sit in your chair or if you’re watching this in your bed lying on your back, just wherever you are I want you to just simply close your eyes if you feel comfortable doing that.  And immediately feel the surface of whatever it is that’s supporting you, the chair, the bed, see if you can sink into it, even 5 percent more than you were initially.

Wherever your hands are, feel the bottoms of your hands, maybe the bottoms of your feet, your toes, your heels.  Just feel the body itself.  Now notice your breathing and don’t judge it, just notice what it’s doing, if it’s nice and slow and fluid as you inhale and exhale or shorter little breaths or sticky or clunky in any way.  Don’t analyze it.  Don’t go into any thinking other than just noticing.

Begin to expand your muscles in your ribs as you take your next inhale.  Just think about expanding your ribs out just a little bit more, taking two more nice, slow inhales and exhales.  And I want you to bring to mind one thing you’re really grateful for today.  One thing.  The next before we move on, bring to mind a goal, an intention.  It could be how you want to feel for the rest of the day, emotionally or physically.  How do you want to feel or what do you need?  Beautiful.

Softly begin to open your eyes and bring your hands right in front of your heart with your palms placed together.  We’re going to do just a few movements of our arms so that you can see what it’s like to connect movement, your body and mind and breath together, and also thinking about lung cancer just something that helps expand the lungs and just activate all of those muscles themselves that need to be nourished.

So as you inhale just open your arms like an (? cast) or goal post.  And you’ll need to adjust this.  If you have had surgery along the central plate, take it nice and easy, just open, inhaling.  As you exhale bring your arms together, touching your palms together, elbows and forearms.  Inhale, open the arms again.  Exhale, closing the arms together.  Just take two more only moving with your own breath.  And closing.  One more time just like that, beautifully opening and relaxing.  And releasing the palms back down on your hands.

Close your eyes one more time.  I want you to notice if anything has changed within your body, your mind or your emotions, and there’s nothing wrong if nothing’s shifted.  I just want you to notice.  And softly blink open your eyes again because I want to show you and have you go through with me one of the best anxiety reducing breathing techniques that can be done.  It’s published in the literature.

It’s called alternate nostril breathing.  You can do this while you’re waiting at the doctor’s office for results, if you starting to feel panicky or anxious, when you’re inside an MRI machine or a CT scan, when you are just waking up in the middle of the night with racing thoughts and you can’t seem to shut them off.  So you’ll take two fingers, sometimes it’s the outer fingers but sometimes with arthritis in older hands it’s a little tougher, so I like to use two fingers, you’re going to bring them up to your nose, and you’ll be closing off one nostril at a time.  And I want you to breathe normally and naturally, okay.  So this isn’t anything forced.

Close off the right nostril first, and just delicately push it.  You don’t have to push it clear into your nose.  Just delicately push it.  Exhale all the way out the left side of the nostril.  Then inhale through the left nostril, exhale out the right nostril.  Inhale through the right nostril, exhale out the right nostril.  We’re going to do three more of these.  Inhale through the left, exhale out the right.  Inhale through the right and exhale a little longer out the left.  One last time.  Inhale through the left and exhale longer out the right side.

Bring your hands back down to your lap and close your eyes again.  Take a nice normal, natural breath.  And I want you to notice what’s different in your breathing, if anything.  Just notice it.  Notice your heart beating.  Come back to that intention or that goal you set for yourself.  And softly blink open your eyes with a smile.  I’m expecting all of you watching to be smiling even though I can’t see you.  And Namaste.

That’s in a nutshell what I would say.  So that was about five minutes.  You tell me what you noticed.  How did you feel after doing it?

Andrew Schorr:

Well, as a patient I’m more relaxed.  I think I need a nap.  I’m worried about‑‑Dr. Subbiah has probably got (? Inaudible).

Dr. Subbiah:

Oh, I’m in a good place, so thank you.

Esther Schorr:

I can tell you that it steadied my breathing.  It’s deeper.  And my heart rate just calmed.  It just calmed.  I mean, it wasn’t super agitated before, but as we went through that exercise it’s just, I’m like even.  I’m like even.  That’s the only way I can explain it.

Raquel Forsgren:

Yes, that’s the most common description.  Thank you.

Andrew Schorr:

So, Raquel, a few questions.  Okay.  So let’s say we have 100 people here who are more relaxed, and they say, well, okay, I get it.  How can I be trained to do this again, either alone with others?  How does that happen?  So wherever people are, and they could be all over the world watching, how do they seek out resources to do this?

Raquel Forsgren:

Oh, it’s such a great question.  I would say across the country, particularly in cancer centers now, especially like MD Anderson and even the clinics.  It doesn’t have to be within the context of a big academic institutions, just ask.  Ask the nurse.  Ask your social worker.  I’m working with a lot of social workers now within the context of support (? Inaudible) support groups, so we’re mixing talk therapy with mind‑body.  So just ask your nurse navigator or any of them.  So that’s number one.

Number two, it is important to look for someone that is certified as a yoga therapist because we’re trained as a subspecialty in trauma, in serious disease, in cancer.  So that helps.  And you can go to the International Association of Yoga Therapy.  Go to their website and type in your zip code, and any number of certified therapists will come up with that information.  So those are two simple ways to find it.

Andrew Schorr:

Okay.  Dr. Subbiah, okay.  So‑‑and you all picked yoga as the modality you were testing as well.  So, first of all, what’s your take on what we just did, and what would you say to our folks as far as making use of that along with other approaches?

Dr. Subbiah:

So I went along with all of you and did this myself, and so everything regarding the heart rate, breathing, I’ve experienced it, and I noticed that my shoulders are much less tense.  So that’s always something that I notice when I do this in my office.

So yoga can be intimidating in that some people think that you need to set aside 40 minutes, an hour to do this.  The reality is you can gain benefits really in a very short period of time, and that’s one of the elements that we’re testing.  Is initially if an intervention, a yoga‑based intervention is a 45‑minute session, do we still have the same effect when we do a 30‑minute session, a 20‑minute session?  And we’re working on one now that’s an 11‑minute session.  So we want to see if the beneficial effects in people going through cancer treatment and their caregivers can be experienced by shorter and shorter time sessions.  And so we’ll put that data out once we get it.

Now, the two ways, the easiest ways to access it, are like what was said, which is engage your healthcare team and ask them about resources with integrated medicine within their practice, within their nearby hospital, within the city.  And so at MD Anderson we have a separate department of integrated medicine that’s devoted to the alternative and complementary aspects of care of someone with cancer.

And so the integrative center has classes every day in tai chi, Qigong, multiple‑‑every day that’s open to anybody, and so the patients, caregivers, whomever comes with them.  And so we would encourage our patients to take advantage of that, especially if you have an appointment in the morning and maybe an infusion in the afternoon and there’s some time in between the day is to go and spend that time in the integrative medicine center.

The other resource that I use is the integrative medicine center’s web page within MD Anderson.  And so you can access it from anywhere in the world.  Just Google integrative medicine at MD Anderson.  It will come up.  And there we have several videos there with our yoga expert here.  Dr. Alejandro Chaoul is one of the world leaders in yoga in the context of cancer therapy.  And so (? Ali) has several videos where he guides you through this.  So I’ve done this at home.  I’ve done this in the office.

And so you can open it up, do it on your smartphone and try it out.  And you can go back to it as many times as you want.  And don’t forgot to go back to it.  It’s not a one‑time.  The benefit comes from doing it repeatedly over the course of‑‑really it’s a lifestyle modification, so.

Andrew Schorr:

Esther, so you’ve made this part of your life now.  So I did feel a benefit just doing this.  And I did go to one class with you, so I’ve got to go again.  But as a caregiver, what do you see?  What change have you seen?

Esther Schorr:

Well, you know, other than what Raquel pointed out in that demonstration, for me, I’ve seen myself become physically stronger now, and I’m well aware that (? Inaudible) cancer patients some of the more advanced parts of yoga, the physicality of it may or may not be appropriate given what your mobility is and your physical being.

But if it is, whether it’s a caregiver or a patient, the really good thing about yoga that I found is it’s not a competitive sport.  It is a practice, and it’s very individual.  So you can do as much or as little as you want.  The mindfulness part, the breathing, what we just did, everybody can do.  And then you can build on that if for example you’ve gone through treatment and there are parts of your body that you have strength or you want to build strength yoga is very‑‑it builds on itself, so you can just build it at your own speed.

And so, for me, I found it’s not tough on my body like running was.  It accomplishes to lower anxiety, etc., and at the same time what I found is it strengthened my physical body and my ability to tolerate other stressors.

Andrew Schorr:

Right.  And as a patient I have definitely seen a change in Esther, which has helped me be calmer as well.

Esther Schorr:

Oh, I’m glad there’s that by product.  That’s great.

Andrew Schorr:

So Raquel, are there video you’re‑‑so great.  Are there videos that you’re in as well that we can link to that would be helpful?  I’d love to see again.

Raquel Forsgren:

I do.  Actually, I have a YouTube channel that has just a couple on there that I focused around, a long, deep relaxation, and this is one we didn’t talk about today much.  It’s about a 25‑ to 30‑minute deep relaxation, and it works through progressive muscle relaxation, body sensing, using the breath, and also really gets into the subtleties of the mind and what you’re starting to think about and process emotionally while you’re relaxed.  So that’s number one, and it’s on there.  It’s Yoga With Raquel.  That’s the name of it.

The other two that I have put on there were related to anger, grief, and dealing with difficult emotions and how do you welcome those and deal with them and process them.  And some of those I put on because of some people I was working with, was working with at the time, who were just diagnosed, and they had that swarm of emotions and they didn’t know what to think about what the oncologist had even told them.  They were angry.  They were sad.  It was just a mix.

So I created those just off of training I’ve had with Richard Miller and others to build those and put those out there for people.  And they’re free resources that anybody can tap into.  And they’re six and seven minutes long, but I would highly encourage anybody, especially I think for care partners, Esther like you and I have talked, you know, you’re wanting to be strong and be there for the person, for the loved one.  You don’t want them to see you falling apart inside or being afraid, and I think you need an outlet to feel what you’re feeling and then be able to go back and be present for the loved one.  And so that’s also been behind, in my mind, in creating a lot of these things now for that.  But, yeah, check those out for sure.

Esther Schorr:

Well, and yoga can be done together, too.

Raquel Forsgren:

Absolutely.  Absolutely.

Andrew Schorr:

So, Dr. Subbiah and Raquel and Esther and me, we’re getting questions, and if you have a question the best way to do it is to send it to questions@patientpower.info, and Tamara Lobban‑Jones, our wonderful producer, will help forward those to us.

Dr. Subbiah, I just saw a quick question that came in from Canada where someone asked, well, can yoga help with peripheral neuropathy pain?  So, for instance, our myeloma folks, some others, have medicines, and I think of those but there may be others across cancer, where you developed neuropathy in full or numbness, so what about that?  Or are there other ways to manage it, and that’s part of your discussion with your palliative care specialist?

Dr. Subbiah:

Absolutely.  Now, that’s a great question, and peripheral neuropathy, it can be anything from a nuisance to debilitating, and so it’s‑‑and it’s experienced by so many as a side effect of so many different cancer medications and so many of the other medical problems, like diabetes.  And so the impact on lifestyle can be tremendous.

And so we look at the pharmacological interventions that are out there that you may have worked with with your doctor, whether it’s the gabapentin or pregabalin or duloxetine.  These words may all ring a bell to some of you who are suffering from peripheral neuropathy.

The mind‑body realm just has some options for peripheral neuropathy, and these work in the same way that most mind‑body techniques work, which is in conjunction with (? Inaudible).  And so one of the interventions that we have data for to support its use in peripheral neuropathy, the primary one that comes to mind is acupuncture.

And so acupuncture, we have small trials that shows an improvement in the pain when compared to those who don’t receive acupuncture in their peripheral neuropathy.  So it does have a role when you use it for the management, and it may be that you use it in addition to a medication that you may have been taking that may have helped but not to the extent that you want it to.  So acupuncture has a tremendous role in the management of peripheral neuropathy.

The remainder of the techniques have a role in anxiety management, and even the distress that goes with having a peripheral neuropathy, so it’s not to say that there isn’t a role.  The whole concept of this is you have to take care of the whole person, so it’s not just about the pain in your left foot.  It’s the left foot that’s attached to that person who’s having to stop running because their left foot is bothering them.

So mind‑body techniques have a very important role, especially as you go later on in your treatment or as a survivor.  Some of these side effects stick around with you for a very long time.  So these mind‑body practices, you can take them with you for life.

Andrew Schorr:

We talked about anxiety, and Esther referred to that as a caregiver.  Previously and at other times we always talked about medication for that or depression as well.  What about some other things that come up?  I know when I went through chemo Esther had me taking ginger.  And I even had one of these little zappers like some pregnant women use for nausea, and that happened me, right?  But there were things like that.  And then I think I was an MD Anderson patient at the time, they even did have some other medicines, even suppositories I used because I couldn’t take anything by mouth.  I couldn’t keep it down.  And that helped me a lot.

So but that was in communication with my healthcare team.  So nausea, sleeplessness, anxiety, and even diet generally.  I know some people particularly with lung cancer have I think you’d call it cachexia or even myelofibrosis, which I have, where people just are like wasting away, right?  They’re not eating at all.

Dr. Subbiah:

Absolutely.  So this concept of cancer cachexia is very complex.  So from a medical standpoint it’s the loss of good muscle in your body and fat, and the reasons are not clear because you’re eating but you’re going through active treatment for cancer.  And what we attribute it to is the cancer itself, the chemicals, the cytokines that the cancer releases, the changes that it has on the body causing it to break down good muscle.

And so that has tremendous implications on body image.  If you don’t look the way you used to and you feel your appearance, your identity changing on a weekly basis, that can have a tremendous impact on your whole person well‑being.  And so at the moment there are really no effective treatments to stop cancer cachexia or even reverse it.  There are ways to potentially slow it down, and that may well mean meeting with the dietician to optimize the food that you take to make sure that you are getting enough calories, the right kind of calories.

Working with physical therapy on strength building, not necessarily to run a marathon but to have enough strength to go about your daily activities around the home, be able to walk and do things here.  These are ways to try to combat the physical changes that you feel.  So we brought up the anxiety as well.  So it’s‑‑mind‑body practices have a very important role in anxiety management.  And in fact I would say that the most robust data for mind‑body interventions, be it yoga, or massage therapy, meditation, guided imagery, is the management of mood and anxiety.

Andrew Schorr:

Right.  You talked about body image.  It’s all tied together in how you feel, how worried you are about the future, etc., so anything like Raquel was demonstrating to us is so important.

Here’s a question we got in from Pam.  I’m willing to bet she may be dealing with multiple myeloma, I’m not sure, but she says, what effect, if any, does high calcium levels have on the ability to exercise?  So anything‑‑I don’t know whether Raquel, you would comment or Dr. Subbiah, let’s start with you.  Calcium, you know, you have all these bone lesions and stuff like that, you can have this calcium problem but yet you want to do this stuff.  Any thought there, Dr. Subbiah?

Dr. Subbiah:

Sure.  And so hypercalcemia, it’s a very real medical entity, so you have to work very closely with your oncologist, with your physician, the provider team to make sure that the calcium is kept at a reasonably safe level.  What your body experiences as a result of hypercalcemia is real.  There is changes in energy pattern, changes in the strength, changes in your bowel function, changes in your mind and mood.  So hypercalcemia has real implications on really the whole body experience.

So it’s one of the electrolytes imbalances.  You know, you have‑‑I’m sure people listening to this have their potassium checked, their magnesium checked, the phosphorus checked among all other things at some point time during this journey.  Hypercalcemia is one where the person feels it a lot more than maybe another electrolyte that may be low or high.  So it’s very important to work with the provider team to get it down to a reasonable level, and know that some of what you’re feeling may be not necessarily the cancer per se or the treatment for the cancer.  It may be because of the electrolyte imbalances.

Andrew Schorr:

Wow.  Okay.  Raquel, go ahead.  You’re muted, so‑‑there you go.

Raquel Forsgren:

Yeah.  I think the one thing that I also would add to that too, Dr. Subbiah’s point about it affecting‑‑hypercalcemia affecting the whole body, the deep relaxation that I spoke about earlier, the way that that works specifically is around turning off that fight or flight mechanism in that part of our nervous system that kicks in when our body is in a state of trauma, which is kind of what’s happening in hypercalcemia from a just simplistic perspective.

And so when you’re in that deep relaxation state and leveraging the breathing, you’re reducing cortisol levels that are pumped out from your adrenal glands, and that entire cascade that happens in your body just starts to slow and relax.  And the neurotransmitters, the chemicals in the brain that are released, it’s just a cyclic event.

And so even though one might not be able to do any particular movements even, the breathing, the imagery and those deep relaxations shouldn’t be underestimated for the role they play in boosting the overall health of the inside off the body and all of the other mental components with it.  So I just wanted to add that little spin on what those do even if you feel like you can’t move out of your bed.

Andrew Schorr:

Well, thank you.  Here’s a question we got from Susan.  Susan wants to know, how can I protect myself from the effects of chemo outside of massage and meditation?  So chemo and even some of the non so‑called chemo drugs are very powerful and they have effects.  So, Dr. Subbiah, what about protecting yourself?  What can you do?

Dr. Subbiah:

So it’s‑‑there are added effects that one experiences.  That’s very different from therapy to therapy.  And so the interventions are, what you would do is dependent on the side effects of what you are taking at the moment.  So it starts with that discussion with your provider team.  What are the most common side effects, and what are some of the more rare side effects?  So it gives you a sense of what you’re most likely to experience and also to be on alert in case you happen to be that person who has a rare side effect as a consequence of the therapy.

Now, there are side effects from chemotherapy and targeted therapy and immunotherapy and cell therapy (? if anyone is on CAR‑T).  There’s only so much that can be done to protect yourself from this.  So the preventative aspects of the side effects is not there yet.  That is something that we work towards.  That’s something we hope to have so that the person doesn’t have the side effect to begin with.

So at the moment the way symptom management is is we have to‑‑we address the side effect after it happens.  And so the approach‑‑some of the most common side effects that are fatigue, nausea.  (? Inaudible) there are medications there.  You can talk to your medical provider about if there’s a role for a small, lower dose of steroids to help with fatigue.  If there’s a role for a lower dose of methylphenidate to help with fatigue, which is a stimulant.  So there are some data to support these in smaller trials.

There’s‑‑as with many medication interventions for fatigue management, the data is always mixed, and so there are some trials that think it’s important, others that don’t, and so at the end of the day my approach to it is if somebody’s having severe fatigue and they’re on a treatment that’s helping their cancer, treating their cancer, keeping it under control‑‑and we have a lot to gain from having the cancer under control‑‑let’s try a medication or two for the fatigue and see if it helps.  If it doesn’t help you, then stop it and move on.

But there’s so much variation from person to person, how you respond to a medication that’s there for supportive care and the side effects of the original cancer treatment.

Andrew Schorr:

Okay.  Raquel, here’s a question we got in from India.  I’m going to read that in a minute.  I just want to mention, if you have a question‑‑we have a few more minutes‑‑send them to questions@patientpower.info.  So this one is from India, and they didn’t give their name, but they said, how helpful is yoga for interstitial cystitis and with pelvic discomfort for a cancer patient?

So here’s somebody with that problem or I don’t know what the gynecologic cancer is, well, can yoga help at all just for the pain?

Raquel Forsgren:

Interstitial cystitis is a complex condition.

Andrew Schorr:

Amen.  It is.

Raquel Forsgren:

Even aside from the cancer component.  I see Dr. Subbiah smiling and nodding.  It would be kind of similar to the other mind‑body practices we talked about.  So the number one thing is relaxing the body.  It’s just relaxing the muscles.  Your pelvic floor and everything around it will tighten just as much as your shoulders or the other parts of your muscles, and the more you can relax them the better.

The more you can defocus away from that pain with guided imagery, that has also been known to help.  I don’t know specifically for interstitial cystitis, but I’m just talking about other types of internal pain, bone metastases, things that very‑‑you some things that are not on the outside of the body.  So I would say deep relaxation for sure.

Dr. Subbiah, for you, do you believe that pelvic floor postures could benefit someone in that way, or do you think that it could potentially aggravate the pain?  That could be kind of a follow‑on question because making posture is in really pulling the bellybutton in towards the spine and engaging that pelvic floor.  What do you think?

Dr. Subbiah:

So that’s along the lines of what I was thinking because you’re asking‑‑the person who asked the question is asking about a very specific condition, and so to my knowledge I’m not aware of any particular trials for mind‑body interventions for the purpose of interstitial cystitis.  And so then you start to think about, okay, what are‑‑what do we have data for where the symptoms may be similar and in a similar part of the body?  And so you immediately think of the gynecologic cancers where a person may have had surgery or radiation in that area of the body and causing over time that inflammation turns into a fibrosis.

And so I’m thinking of a woman who may have had a gynecologic cancer and having discomfort and pain, frankly, in that area and a pain that’s probably not going to go away because it’s a sequela, a consequence of the treatment.  And so in those contexts there is some support for mind‑body interventions.

The pelvic floor exercises are one that we do suggest, and so would it help with particularly interstitial cystitis?  I’m not quite sure simply because I can’t think of any data or a study where a person has asked that question.  And so my recommendation, as with all of these interventions, is to, number one, speak with the physician or provider who knows you the best, and have this discussion on, number one, do you think there is data, number two, do you think it will help, and number three, do you think it’s okay if I try it.

And then you take that information, you absorb it, as with all (? Inaudible), and then you make an informed judgment for yourself.  Okay, do I want to try this mind‑body practice?  I know that there isn’t a big randomized trial to show its benefit, but my doctor said it may not necessarily hurt me to try it, and so should I go ahead and make that attempt to see if this mind‑body practice will help me in any symptom that you could be feeling.

Andrew Schorr:

I want to ask about trying.  So we have women probably watching and some of them have had maybe lymph node surgery and maybe even dealing with lymphedema and may even wear (? sleeve) and things like that for breast cancer.  We have people who’ve had debilitating treatment for lung cancer.  We have people going through or have gone through transplant of various kinds, things like that.  So you see it, Dr. Subbiah, Raquel probably as well.

So you say, well, okay.  Do I‑‑how do I assess what I can do?  I can’t, you know I can’t‑‑maybe I can’t go to a class and Esther goes to classes and there are like 20 people in there and they do these different positions, and that’s a little a daunting to me, right?  So how do I celebrate what I can do and maybe increase that over time but at least I start.  So, Raquel, let’s start with you.  The whole idea of starting or trying even if it’s just like that, you know?

Raquel Forsgren:

Yeah, and I think that is one of the biggest things that stops people from trying, from thinking there’s something else they could do to help take control of what they’re going through.  It’s the daunting task of do I go to the yoga studio on the corner that I see people going in in these outfits and doing different things.  Like, I’m not that person.  And that’s the most important take‑home message I know I could give as I educate oncologists and nurses and people that are diagnosed with cancer to do is to do the research, do what Dr. Subbiah talked about, speak to the nurse, talk to the nurse navigator.

Look for classes within a hospital, number one.  Because they will be modified and tailored to people that are going through what you are.  And I know from a yoga therapist’s perspective I tailor yoga therapy sessions based upon the type of cancer, the stage of disease, even the types of treatment that the person’s going through.  I will tailor the entire practice around that with modifications.  And it changes.  It changes from at diagnosis maybe at second round of chemo to tenth round of chemo to post chemo, it all changes.

And so I would just be open, step through the fear, use this as a way to take control where you have the control.  You can’t control what the cancer’s doing, you can’t control the treatments the oncologist is giving you, but you can control your own lifestyle changes and your own quality of life.  And that’s what I love about yoga therapy is because it really does empower you because, as you all saw from just the small five minutes, you felt something.  You felt something shift, and that’s what will happen even if you do it for six minutes or 12 minutes.

And you do not have to be in a class at a studio.  You can do it within the context of even your own home.  And after you do some research you’ll find there’s a lot of online options.  You’re more than welcome to send questions in to Patient Power, and they can forward them to me.  I’m happy to try to help you find somebody in your local community that could even help you from a yoga perspective.  And I so I’m more than happy to help you as much as I can as well.

Andrew Schorr:

Wow.  You’re so devoted.  Thank you.

So, Dr. Subbiah, part of this is communication.  I think Raquel really explained about putting it in context and resources for people to start.  But there you are in your white coat.  All of us have doctors and be maybe we have multidisciplinary teams.  We have nurses and sometimes other kinds of therapists that we can draw on, but we’ve got to speak up, right?  So what would you say about whether it’s the patient themselves or the care partner, like Esther, to advocate so that we get these approaches brought to bear, whether we need training or medication in concert so that we get what we deserve?

Dr. Subbiah:

Sure.  So the field of complementary medicine, integrative medicine, it’s coming more and more to the forefront, but the reality is it’s always been on the periphery for really decades.  And so when you present a‑‑when you bring up an option of a particular mind‑body practice that you may want to try, the person listening to it on the other end, whether it’s your nurse, your nurse navigator, whether it’s your nurse practitioner, your physician or whomever it may be, they may not have been exposed to that in the course of their training and their years of experience.

And a person responds to that in different ways.  Sometimes if they don’t know about it they may dismiss it.  Other times they may be more supportive to say, okay, let’s look into it a little bit more.  But if they don’t have that background experience with it‑‑and that’s the way medicine has been for decades, so it’s not so much a fault of their own.  They just haven’t been exposed to it as much.

Then ask them is it okay if I pursue it a little more, do some more research and bring some information to you to help me interpret it.  And so I think we‑‑when we‑‑when you as the patient and the caregiver are gathering the information, just be aware that the person reading it may already be familiar with it or may not.  And then based on their level of comfort with it go forward in that discussion.

If they have recommendations that’s great.  If they don’t, we mentioned some of the resources where you can search online to find appropriately certified and trained personnel to deliver these mind‑body practices.  And so if you happen to be in a smaller area of the country or even in the larger area but don’t have immediate access to an integrative medicine center to at least get you started, then it’s a great way to‑‑it’s a great opportunity to do some of the leg work yourself and then work with your care team to find what’s right for you.

And you’re right.  The circumstances are that you may end up having‑‑when you end up doing your research you may actually know more than the persons in your (? Inaudible) just because of the way medicine has been but not where medicine is going, which is we’re all becoming much more cognizant.

Andrew Schorr:

Well said.  Esther, I want to get a final comment from you.  When I was diagnosed 22 years ago with chronic lymphocytic leukemia, we were in tears.  I felt like a victim, maybe you did too.  This came out of totally left field.  And I think our whole time with this has been what Raquel and Dr. Subbiah have been saying, trying to take back control.  And we’ve had providers along the way.  Some have been knowledgeable and some have not, but we’ve been trying to be advocates in doing what we can do, right?

Esther Schorr:

Right.  And what rings very true for me and our experience is Andrew shared and I guess I did too in a sense, some of these supplementary things that we researched and tried and it was always is this all right.  Let’s talk about this with his oncologists, his medical team.  And in one instance, I don’t know if you remember, Andrew, in one instance there we had read and done some research about accelerating the amount of a certain vitamin to help you when you were diagnosed with leukemia.

And we had the conversation with your oncologist at the time and he said, what vitamin supplement are you taking.  And when we told him, he said, I think you should probably not do that because in your particular case, in your particular kind of cancer there are studies that say that’s not a good idea.  So I bring that up in that this dialogue has always been really important for us, and I would think that that’s really what you both have been saying is research it, but before you dig in whole hog with some of these other complementary and supplementary things, have the dialogue with your medical team because some may be really helpful and some of it, there may be evidence that it’s not.  So, you know.

Andrew Schorr:

Well, you can see that Esther and I have been on a long journey together and just‑‑for those of you watching (? look), not always, but there are people living longer with lung cancer now.  There are people living longer with advanced prostate cancer, with advanced breast cancer.  We have a long way to go with a lot of the cancers, but we have are making progress with some of them, the blood cancers that I’ve been affected with.  Twenty‑two years ago I didn’t know I’d be there for the next month or the next year, and you’re stuck with me.  Here I am, and I hope Esther and I are going to be together for many, many years with our 33rd wedding anniversary coming up.

So then you say, well, how can I take control back from this where I started maybe feeling like a victim.  And that’s what we’re talking about here.  So this field that Dr. Subbiah talks about and now Raquel is very involved in on her end, these are relatively new and not having proliferated everywhere.  But you have the benefit here.  Take this into your life, we hope.  Have conversations with people like this or seek them out, seek the online resources.  All right.  I’m not going to preach anymore.  I just hope this program has been helpful.

I want to thank our guests.  Dr. Subbiah, thank you for being with us once again from MD Anderson and your work in integrative medicine.  Thank you so much.

Dr. Subbiah:

Absolutely.  Thank you so much for having me and this opportunity to talk with all of you.

Andrew Schorr:

Well, we’ll do it again.  And Raquel Forsgren joining us from Chicago and taking us through a guided program.  I’m going to look up those videos.  Thank you so much.

Raquel Forsgren:

Thank you.

Andrew Schorr:

Esther, here’s a big hug and kiss.  Thank you for being with us.

And one other thing is we’re going to have some resources for you that we’ll put with this program on the Patient Power website.  It will have links to all the things we’re talking about.  So be sure to look out for that.  We’ll be sending you e‑mails with alerts.  Tell others about this.  Have them sign up with Patient Power so they always are in the know as we do more programs.  And let and Esther and Tamara, our producer, know.  You can always send a comment to questions@patientpower.info.  Let us know if this was helpful.  Okay?

I want to thank the Patient Empowerment Network for this program and achieving wonderful support from Celgene and from Genentech and Helsinn and Novartis, and we really appreciate them being part of the cancer community, not just developing drugs but supporting our discussions like this one.  I’m in California.  We have our guests around the country and Esther upstairs where we live here.  I’m Andrew Schorr.  Remember, knowledge can be the best medicine of all.  Thanks for joining us.


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

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.

Clinical Trial Helps Lung Cancer Patient Live Active Life

Editor’s Note: This blog originally appeared on the American Lung Association’s Blog. You can view it here.


Donna Fernandez’s father died of adenocarcinoma at the age of 49, just six months after he was diagnosed, so when she learned she had the same disease, she knew exactly what it meant.

“They told my husband that I would live for four months,” she recalled.

Adenocarcinoma is a form of non-small cell lung cancer often found in the outer area of the lungs and makes up about 47% of lung cancer cases, and usually grows and spreads to other parts of the body more slowly than small cell lung cancer does. It develops in the cells of the outer layers of lung tissue, which line the cavities and surfaces of the body and form glands.

Donna was put on traditional chemotherapy and the cancer tumors did shrink, but the moment she stopped chemotherapy, they came back. “I was most worried about my dogs,” Donna said. “They can be pretty evil, and no one is going to love these little devils the way that I do.”

Like many patients, Donna, who worked through her treatment, had a tough time with chemotherapy. If she had treatment on Thursday, she would feel fine until the steroids from the treatment wore off by the weekend.

“I’d be so nauseated that I could not bring myself to drink anything,” she remembered, “I wouldn’t be able to walk from the couch to the refrigerator.”

During chemotherapy in 2013, Donna was approached with the opportunity to join a clinical trial, and it changed her life.

“I had no idea that it would help me,” she said. “I thought that I was helping future generations.”

Still an active participant in her clinical trial for treatments, Donna checks in every two weeks for an infusion and extensive blood tests. With the personal care administered from her healthcare team, to the tailored medical regimen, down to the feeling of being among family when she visits the Cancer Center at University of Texas Southwestern, Donna admits that she went from surviving to thriving.

“I can’t say enough about the ramifications [of the clinical trial],” she said. “I’m living proof. I’m not just alive, I’m living.”

Donna and her dogs travel often as they participate in dog agility competitions throughout the country. They went to Tennessee last year, and Donna is now preparing for a trip to Missouri, all thanks to the tremendous treatment received as a result of a clinical trial.

“I’m living my life and that’s so significant,” she said. “Just a few year back, I probably would not have made it.”

Donna’s story is proof that clinical trials are a valid treatment option and should be considered as an option throughout treatment.

Living Well With Lung Cancer: What Are the Best Actionable Resources Available for Lung Cancer Patients?

Living Well With Lung Cancer: What Are the Best Actionable Resources Available for Lung Cancer Patients? from Patient Empowerment Network on Vimeo.

What resources are available to me during and after lung cancer treatment? What financial resources are available if my insurance doesn’t cover costs? Can having second-opinion conversations actually be good for your health? Can the role of faith help? Meet lung cancer patient Matt Ellefson, oncology nurse Katie Michelson, and social worker Sandra Manley-Eichler, as they join forces to share how you can most the most of resources available to you today.

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


Transcript:

Andrew Schorr:

And greetings from near San Diego—Carlsbad, California. Welcome to this Patient Empowerment Network program produced by Patient Power. I’m Andrew Schorr, your host for the next hour. We have a lot to cover, as we discuss what are the best actionable resources available for lung cancer patients? I’m very excited about our guests today and to bring you the information that you need. I want to thank our financial supporters for this program, and they are, of course, Celgene, Helsinn, Novartis and Genentech; and also, our partners in this program, SURVIVEiT, and the Lung Cancer Awareness Month Coalition. And as you know, as we do this program, this is the very end of Lung Cancer Awareness program. But that needs to go on, day by day, month by month, year after year. And hopefully, as therapies are improved, you can live longer and live better, even if you’ve had a diagnosis of lung cancer. And let’s all pray for cures.

But what resources are available for you as you proceed? That’s what we’re gonna be discussing. Now, if you have a question, or a comment, or a suggestion of something that’s worked for you, send it in now or anytime during the program to lung@patientpower.info. Again, that’s lung@patientpower.info, and we’ll do our best to answer your questions and include your comments. And remember that there will be a replay of this program available soon thereafter, within a few days, and video clips discussing the individual topics that we’ve covered.

Should we get started? Okay. So, I’m in California, but now let’s go all the way over near Sarasota, Florida, Longboat Key, and connect with my friend Matt Ellefson. And he’s been on our programs before. I know Matt really well. And man, Matt, you’ve been living with lung cancer for almost eight years now, the end of this month, with six recurrences along the way.

And of course, you founded SURVIVEiT back in 2013. First of all, thank you for being with us, and you’re looking good. 

Matt Ellefson:   

Well, thank you, Andrew. It’s always a pleasure to be part of your organizations. They’re so informational and helpful to those who need to hear it. Thank you for that.

Andrew Schorr:

Now, we’re talking, Matt, about resources, and certainly, SURVIVEiT is a resource. And you’ve worked with so many other organizations, and you’re aware of it. People with lung cancer today should not feel alone, should they?

Matt Ellefson:   

No, no. Never, never. And that’s one of the biggest things that SURVIVEiT stands for, is nobody should ever face cancer alone. And I don’t care if you have lung cancer or what cancer you have. You should never face it alone. And it’s our goal to be sure that nobody ever faces a cancer diagnosis alone.

Andrew Schorr:

Well, we’re gonna talk more about it. We were dealing—I was talking earlier today with someone else who’s a mentor in the lung cancer community with a more rare subtype, Janet Freeman-Daily, who has the ROS1 mutation. And not everybody knows whether they have that mutation or another. And so, we’ll talk about that. How do you connect with others, and maybe, then, there’s a subcommunity that can help you as you move things forward. So, Matt, it’s a family affair in your family.

There is another guest we have, and I want to go to Katie Michelson, who is with the Cancer Care Institute in Rapid City, South Dakota—your home state, Matt. And Katie’s your niece. Katie, welcome to our program.

Katie Michelson:               

Hi, guys. Thanks for having me.

Andrew Schorr:

Katie, you are very devoted to cancer patients that you see in South Dakota. Would you agree, though, that patients need to speak up when their care team works with them, and that often, there are resources that can help—sometimes financially, emotionally, connecting with other patients and other families that are going through it, and the right care?It’s that relationship, but the resources are there, wouldn’t you agree?

Katie Michelson:               

Right. It’s about building the relationship and having that open communication with your provider and the nurses, pharmacists—everyone within the system.

Andrew Schorr:

Great. Well, communication is important. Now, there are emotional things that go along with it. And that’s where our next guest really comes in, an oncology social worker from our partner, the Lurie Cancer Center, Sandra Manley-Eichler. Sandra, welcome to our program, an oncology social worker. When someone’s diagnosed with lung cancer, it’s a pretty heavy load for the family, and certainly for the patient. And people like you are there to help, right?

Sandra Manley-Eichler:

Certainly. I think it’s a really great part of my job. I really enjoy the work that I do. And I encourage all patients and families to reach out for the support that they need.

Andrew Schorr:

Well, let’s get started. So, first of all, Matt, how did you find out what might be available? I mean, you were diagnosed, you were coughing up blood, right?

Matt Ellefson:   

Yes.

Andrew Schorr:

Oh my God, what’s that? And then how did you go from the terror of that to getting grounded again and starting to see who could you network with, what, where do you go? How did you do that?

Matt Ellefson:   

You know, Andrew, the first thing I did was say a prayer. And I believe God answered that prayer. And he was able to call me to the point where I was able to—okay, it’s battle on now. I’m in battle mode. And I did—I researched, and I searched, and I looked. And my wife and my brother-in-law helped. And we were on three laptops. We kind of divided and conquered, and we just tried to learn as much as we could about cancer, about lung cancer, and my specific type of lung cancer, and what I needed to do to treat it effectively—where I needed to go for a second opinion.

Who should I talk to? And the biggest thing, though, that I wanted to do was talk to somebody, a stage IV survivor, that was living a happy and productive life. I wanted to see them, and I wanted to ask them, what did you do? How did you get through it? But I couldn’t find anyone. I couldn’t find anyone. And so, I said, you know what? If they aren’t out there, maybe I’ll be the first one, because I’m not giving up. I’m going through this. And God answered a prayer, and away I went for a second opinion. And I ended up at that cancer center in a clinical trial that proved to save my life.

Andrew Schorr:

Right. And then of course, you’ve been continuing to get informed about did you have certain mutations, what tests did you need. If one medicine pooped out on you, and you’ve had that, was there another medicine approved or in research, a trial, that you could benefit from? So, let’s talk about that for a minute. Katie, you’re at a community cancer center, where most people are treated, community cancer centers.

How do they connect with the information? And let’s face it, lung cancer, aging, there’s been a lot of research. There have been a number of new treatments, immunotherapy, all that. So, what—we talked about communication. What should patients be saying, rather than just feeling so forlorn that they’ve been diagnosed with such a life-threatening condition?

Katie Michelson:     

I think, again, having open communication with your provider. It’s important to listen to what they have to say about your diagnosis and treatment options, but instead of just listening, also ask a lot of questions. Ask what are other treatment options? What are genetic testing that I can do? People are well informed if they ask questions. I feel like that’s the most important part.

Andrew Schorr:

Right. Sandra, you’re in an academic medical center, and so, you have a lot of research trials going on too. So, first of all, people say, oh my god, I’ve been diagnosed. Does anybody else have it?

So, maybe you can talk about how do we make connections for patients, and how do also they make sure that the full range of treatment options are available to them? How do you coach people about that?

Sandra Manley-Eichler: 

So, I often work with patients, and I recommend kind of like what Katie was saying, asking a lot of questions of their physician, and not necessarily asking about the resolution from their physician. So, asking where can I find a resource to connect with other lung cancer survivors? And that connection could be, like what Matt was referring to, something specific related to your own diagnosis. I wanted to know – I want to hear from somebody else who has stage IV disease who’s living their live. Where do I go for that? The same thing with treatments, clinical trials, etc. We are fortunate that we are in an academic medical center where we can get connected with a lot of different groups of people with clinical trials, as well as the physicians.

But I think that it’s more than that. It’s sort of you figuring out what is your next step? Because I think when you’re first diagnosed, I think as we know, it can be really scary. And so, at first, it may be a little too intimidating to go right into it. So, sort of taking time and being patient with yourself, and figuring out, is the next step that you want more information, or is it more support? And only you as the patient could know that.

Andrew Schorr:

Go ahead, do an ad for oncology social workers like you. And when I was first diagnosed with leukemia many years ago, it was a social worker who sat down with me pretty quick at the major cancer center I was at, and we chatted. And I think if you’re consumed by fear—you, or your spouse, or family members that are with you—you can’t—you start talking about resources, and you’re not even there. So, I think dealing with the emotional overlay—how do you get that out of the way first, Sandra? How do you lift that cloud a little bit?

There’s still tremendous uncertainty, but how do you lift that cloud so then when you say, well, you can call this number, and you can apply for this, go here and go there, you can think about it?

Sandra Manley-Eichler: 

I always joke with my patients that I feel like I have a whole stack of papers that I just throw at them. And I say, “Well, here you go.” And obviously, the joke is that that’s not gonna be helpful, right? Like you said, you’re sort of consumed with fear. There’s a lot of paralysis, I think, that comes in. And what I recommend is trying to just take one thing at a time. And that’s easier said than done, of course. Something that’s actually evidence-based for cancer-based stress and anxiety is mindfulness practice. Mindfulness-based stress reduction comes in many forms for many different people, whether it’s meditation, or one-to-one mindfulness practice, or even a lot of electronic resources and apps available for that, local courses.

And so, finding some way that makes it easier for you to focus on one thing at a time. And that can be through soliciting the help of friends and family to do that, or through working with a counselor, or, like I said, just engaging in an actual mindfulness practice. There’s a really good book—you can find it on Amazon—Mindfulness-Based Cancer Recovery. You can get it at your local library as well. And I recommend it for all my patients for exactly that, that anxiety that comes in and that overwhelming feeling.

Andrew Schorr:

Okay. So, first resource besides that book is wherever you were being treated, ask if there’s a social worker you can talk to, and they can help guide you through that. We’re gonna talk about other things social workers can do. Related to the jargon of lung cancer—so, I used this word “mutations” before. Somebody’s diagnosed with lung cancer. They’re terrified, and they have had no training. Nobody goes to school, if you’re not in the medical field, to learn about any of this.

And the doctor starts talking about this mutation, and that test, dadada. How do you, Katie, recommend people cut through the jargon to begin to understand?

Katie Michelson:               

Well, in our practice, we utilize nursing navigators a lot to kind of take the time to go over what each targeted therapy would be for their specific diagnosis. It’s important to break it down into layman’s terms so that you understand what’s going on better. And specifically in our practice, we rely a lot on the nurse navigators and on the social workers to help us with that. Obviously, if patients have more specific questions, we can sit down and talk about that further, and talk about it in more detail. But initially, I think it’s important to just kind of keep things simple at first.

Andrew Schorr:

Right. But ask. Ask.

Katie Michelson:               

Right.

Andrew Schorr:

So, Matt—so, you talked about, of course, your faith. But how did you lift the cloud or the terror of the diagnosis for you and your family, and then have this plan? You said, well, we’re gonna get a second opinion. What does that mean? What are they gonna do? What’s gonna happen to me? Where should I go next? How do we pay for it? How did you march through that with you and your family?

Matt Ellefson:   

You know, you just do the best you can. You said it well, and so did Sandra and Katie. The patient does not know. None of us are studying lung cancer ahead of time in anticipation of receiving this diagnosis someday. So, it’s something that’s new to us. And cancer is very complex. It is not something you can learn in two days. And you feel as a patient that you have to make decisions really quick. You have this disease in your body that’s doing its best to kill you. I mean, it is terrifying.

And so, I think one point that I want to make to patients is it’s okay to just calm down, give yourself a couple of weeks, and really understand all of your options, and not be so terrified to jump into something immediately. And that was really my most difficult, most difficult time, was from the point when I was diagnosed until I began treatments, I was going—it was terrifying. It was just horrible for me. I think my oncologist handled it really well, because at that time, I was really not convinced with this treatment plan. It didn’t fall into line with what I had researched. And I wanted to ask around a little bit. I wanted to check—I wanted to get a third opinion. And he said, “That’s perfectly all right. You do that.” And I said, “How much time do I have?” And he said, “You go ahead and take a couple of weeks, but I wouldn’t take any more than a month, because we want to get started.”

And I thought that was handled really well, because it did allow me then to slow down a little bit. I realized that cancer, it may be aggressive, but it isn’t something that’s gonna change overnight. And that’s the fear that a lot of us patients have. We think that, boy, by the end of the week, it’s gonna be growing so bad, we’re not ever gonna be able to stop it. And that’s just—that’s not true. So, people need to really need to be sure that they understand their diagnosis fully, ask all the questions. And SURVIVEiT provides a great tool called “21 Questions to Ask Your Oncologist.” It’s a free, downloadable tool at surviveit.org. Go through that list in detail with your oncologist, and just be sure you understand what your options are available to you, and that you’re making the right choice.

Andrew Schorr:

Well said. I want to tick off some other resources people—Matt, you and I know, in the lung cancer community, there’s some other groups. There’s the Lung Cancer Alliance. There’s Free to Breathe. There’s the Lung Cancer Foundation of America, the Bonnie J. Addario Lung Cancer Foundation. There are all these groups that you can call or go on their websites, and they can often connect you with other patients, and they can also help you—guide you, for instance, if you’re trying to seek a second opinion, where is maybe a center you might go to where there’s a lung cancer specialist? Maybe even, if you’ve been identified and had the right diagnostic testing, where there might be research into that mutation you have, that type of lung cancer, or is there a specialist in small cell lung cancer, if you have that, right?

Matt Ellefson:   

Right.

Andrew Schorr:

So, you’re gonna—what we’re finding out now is different subtypes of lung cancer. And then I just want to put in a plug for Facebook, because there are a number of lung cancer Facebook groups as well. And I mentioned this more rare mutation earlier, ROS1. So, there is a group of people with this rare ROS1 mutation worldwide. There are groups for small cell lung cancer. And there are certainly many groups for lung cancer and all this, and advocates. So, we kind of triangulate this.

So, Sandra, it sounds like a lot of work, though. I mean, a lot of people might say, “Oh my God, I’ve been diagnosed with this life-threatening condition. I just want people to just take care of me.” But it sounds like today, if you can martial family and friends around you, though, you do have a lot of horsepower to be a knowledgeable consumer. I mean, you want to say, heal me, but on the other hand, you want to make sure that all your needs are taken care of.

Sandra Manley-Eichler: 

I think it’s such a balance that when you have a diagnosis of any cancer, that you sort of struggle between wanting to be as independent as you were before, and how much do you elicit help from friends and family? It can be a struggle. And I think what’s nice is that you have an opportunity to delegate tasks to friends and family who, like you said, are fostering support for you. And I have a lot of patients who will send somebody else to speak with me. They’ll say, I’m too dizzy from chemo. I’m too tired. I’m trying to figure out, maybe, how to manage childcare, or going back to work at some point during treatment. And then they’ll ask maybe a friend, or a sibling, or a parent, or a spouse to reach out to me for those resources instead, and sort of filter through those resources.

So, you have many resources, that you have a lot of people who can help you sort of narrow down what’s the best one for you, including your social worker.

Andrew Schorr:

How do you coach people on asking for help? So, Matt, you have five kids, and you have a pretty large family, and a big community in South Dakota where you live. But Sandra, first I’ll start with you, is how do you give yourself permission to say, this is all I can do. My job is to try to get well, but I need help with communication, with food, with asking questions to the doctor, financial resources, transportation.

Sandra Manley-Eichler: 

Sure. With a lot of my patients, I think that that’s a very common problem, so I want to validate that that’s something that I’m sure a lot of our listeners are struggling with, is at what point do I ask for help? And for what? And does that make me appear weak or like I can’t handle it, right? Never a good way to feel.

And I often say, think of somebody that you care about a great deal, whether it’s a family member, your best friend, a mentor, maybe—and now imagine that that person was just diagnosed with cancer. And think about the lengths to which you would go to help that person. And I guarantee you that there are many people in your life who would feel the same way about you. So, I think putting yourself in the shoes of the caregiver, the other person who wants to be of help and exercise some control over what they can do to help you, is a good an exercise in sort of reminding us that we’re all fallible. We all have positions in which we wish that we could sort of shoulder everything. But we’re all human beings. And if you can sort of connect with the people in your life that you really care about, you’ll see that they care about you too.

Andrew Schorr:

I want to remind our audience, if you have a question or something that you want to share, just send it to lung@patientpower.info. Katie, next question for you is you’re at a treatment center.

And I’m actually going through leukemia treatment these days, so I’m in a room with some people getting infusions and things, not just for leukemia but for lung cancer. And there are family members and friends who come in. So, tell me, how do you feel as a practitioner about the involvement of family and friends, and what’s helpful with the healthcare team, and maybe what isn’t?

Katie Michelson:

I think it’s one of the biggest support systems that you can have. And we have almost all of our patients come in with either a friend or a family member to all of their follow-ups. They’re there throughout their infusion. And being a prior infusion nurse in the chemo setting, I have seen the relationships that these patients have with their families. I see the relationships that they develop with other cancer patients that are in the next room, or down under the next curtain, or behind the next curtain. And so, those relationships are really important.

And I guess I just have seen that support system a lot, and I know it’s a big part.

Andrew Schorr:

So, making the infusion room a chatty place is okay.

Katie Michelson:               

It is. It’s interesting from a nursing standpoint to see, on a patient’s first infusion day, you’re nervous, as to be expected. And then as the weeks go by, you start to develop relationships with the patients that are there every Wednesday or every other Wednesday. And it’s really cool to see people make their own support groups at their chemo treatment.

Andrew Schorr:

Right. So, Matt, what would you say to people about asking for help or delegating responsibility for family or friends, or a church group, or your synagogue?

Matt Ellefson:   

I think it’s very important, and it doesn’t come easy to a lot of us, for the reasons that you guys just discussed. I mean, we all want to control the path of our life to some degree, and especially when you have a life-threatening disease; you really want to control it.

I mean, because you don’t want to make the wrong choices. And so, it’s really hard to relinquish some of that control to somebody else. And I would recommend, start small. I gave up—the first thing I did was I gave up control of my nutrition to my wife. And she was gonna just study nutrition, and what I needed to it, and the cancer-fighting foods, and things I needed to stay away from. And I thought, boy, this is so helpful. I don’t have to study that anymore. Now I can focus on other things. So, I would recommend, start small. Find one little sliver of need that you might have, and ask a friend if they will do that—your friend, or loved one, or caregiver. And I’ll guarantee you, they’re gonna be willing to do it. And just let it go. And then you’ll start to see the benefit of having that help. It’s tremendous. You can’t do this alone.

Andrew Schorr:

No. There are some tools also for communication to extended networks of family and friends. So, whether you’re like me in California, and I have relatives back in New York and friends around the country, fortunately—they say, well, how’s Andrew doing? Well, if you’re in the throes of treatment and you don’t feel well, it’s very difficult for you to take every phone call or respond to every email. So, think of having somebody, a family member or a friend, who’s like your communications—chief of communications. And there are tools. So, for instance, one I can think of off the bat it Caring Bridge, but there’s some others where you can use these off the shelf tools that are available to you—often for free. Many of the medical centers have them as well—to communicate with family and friends how you’re doing, whether you’re an outpatient, whether you’re in remission, whether you’re in the hospital.

And I think that’s really helpful. Matt, you’d agree, wouldn’t you?

Matt Ellefson:   

Oh, absolutely. Absolutely. It is important to use those tools. Your friends and loved ones want to know how you’re doing, and they want to hear from you, and they want to help. But they haven’t had—many of them haven’t had cancer themselves either, and they don’t know what to do. And they’re afraid to do the wrong thing or say the wrong thing, so it’s really—it becomes a different situation for everyone involved. So, but give them the opportunity to help. And one thing that we always hear people say, too—and I’m gonna flip the coin a little bit. If you’re a friend that’s trying to help somebody with cancer, one thing that people always say is, “Let me know if I can do anything. I’m here for you. Just let me know.” Well, a patient isn’t gonna let them know, because we just don’t do that, because we want to try everything.

So, it’s better to say, you know what? If you live in the cold part of the country, say, you know what? I’m gonna shovel your driveway. Every time it snows, don’t worry about it. You don’t have to worry about any of that. I got it covered. Or, I’m gonna mow your lawn. And if you’re a caregiver or a supporter listening today, take that on. Understand that the patient isn’t gonna ask. You just offer. You just do it, because they need your help, and it will be greatly appreciated, believe me. It will be.

Andrew Schorr:

So, Sandra, a lot of people are reluctant to communicate or don’t—they don’t want to—we’re facing up to our mortality when you’re diagnosed with a cancer. And then we have different family members—including, I want to bring up, children. So, how do you coach people, and what help or resources are there to help us as a patient communicate honestly and where it’s helpful?

Sandra Manley-Eichler: 

Absolutely. I think that it’s important to acknowledge that children will be at different developmental stages. And I think a lot of people feel that they have to be almost extra truthful and mention a lot of details about their cancer treatment, because if they don’t mention every single detail, they’re somehow not being truthful. And in many cases, children are just too young to comprehend, or perhaps they’re developmentally not at the right stage to understand chemotherapy, radiation and what it means. I think parents need to figure out what kind of outcome do they want to have? What do you want the outcome to be of the conversation with your children? I also wanted to dispel a myth. I have a lot of patients who come in who say, “I want to have the big talk. I want to talk with my children about what’s going on with my treatment.” And I usually like to take a step away from that and say, there’s actually multiple talks. You have a lot of almost mini-conversations with children, usually probably just starting off saying, “Mom is sick. Dad is sick.”

And then appropriating from there what’s most appropriate for their treatment, what’s gonna be happening, how their life is going to change, maybe. Practical things. Sometimes kids just want to know, are you still gonna take me to school? Is it gonna be somebody else? And to just roll with the punches. Check in with them and keep open dialogue.

Andrew Schorr:

Well, that’s very important. I want to go on to another area we’ve been getting some questions about, and it’s sort of the elephant in the room. And that is, with innovation in cancer care, but also with inflation, maybe—cancer care is really expensive. And insurance varies. If you’re with our audience in the U.S., you know how much debate is going on about it. And so, people say, well, gee, how are we gonna deal with a cancer and not go broke? Are there resources to help? So, Katie, let me just start with you for a minute. We’ll come back to Sandra.

Katie, I’m sure that conversation comes up. You mentioned nurse navigators, and maybe at your clinic, you have other navigators. How can we help financial research.

Katie Michelson:               

I’m lucky. At my facility that I work at, we have a navigator that is just focused specifically on getting things covered for insurance, preauthorization, looking at the drug companies themselves for support with medications. We also look towards the social worker a lot for additional support. Even though I’m in a smaller hospital, smaller clinic, we have a lot of resources for our patients, and that’s specifically to help with the financials of everything.

There is also a program that we have, and I can’t speak for every hospital, but any prescription that is made under the provider at our clinic is covered by the hospital.

So, that’s a resource that our patients use a lot. Anything that has to do with their cancer treatment, anxieties, side effects from chemo—that’s all covered for the patients. 

Andrew Schorr:

Wow. Well, I should mention, and this is for audience—depending on where you get care, check. So, for instance, okay. So, first thing is, what insurance do you have and what coverage? I was blessed when I asked the financial person as I was in my second cycle of leukemia treatment. I said, “Oh, I just want to check how much this is gonna cost me.” And because I had Medicare, and I had a Medicare supplement—you see the ads on TV on the U.S. all the time now for the Medicare supplement. For these infused therapies, I have no cost. Wow. Okay. Certainly with the oral therapies, there are co-pays, and a lot of people look for assistance programs. So, let’s talk about that too, Sandra. So, even if you have—maybe your infused therapies are being covered, you may have oral therapies that unfortunately the insurance is different.

But there are some programs to help there too, aren’t there?

Sandra Manley-Eichler: 

Absolutely. I’m so glad you brought that up. And just as an aside, since we’re talking about Medicare, if there’s anybody listening, Medicare open enrollment ends in one week. So, this is the time at which folks with Medicare can actually seek if there’s a different plan that they would like to enroll in if they felt that it hasn’t been covering their cancer care as much as they would like. So, just putting that out there for Medicare recipients.

So, I work with patients quite a bit on oral oncolitics, all the medications related to their side effects. Katie, it sounds like your institution has a really great program. And again, I do encourage—I want to bounce back off of what you said, Andrew—definitely check in with your hospital to see if there’s any assistance available at the hospital itself for assistance for your pharmaceutical needs. One resource I’m going to recommend is www.needymeds.com. That’s N-E-E-D-Y-M-E-D-S.com.

So, that website is almost like a Yellow Pages, if you will, for finding assistance for very specific medication. It can be very helpful. And then certainly, reaching out to the pharmaceutical company that makes the drug in question to see if they have a specific pharmaceutical program for it. But help is definitely out there. 

Andrew Schorr:

Right. So, there are various co-pay assistance programs. I’m gonna tick off a couple I think of. You may think of others. Patient Advocate Foundation, Good Days. And I know there are some others as well. And then, I was on a panel with a drug company where they explained that when there were no other resources, some of them—not all of them—do have some free drug programs too. So, you gotta ask. And if you’re prescribed a certain medicine, go on the website and call. Usually, they have nurses as well associated at the drug company. Call them and say, look, this is my financial. Am I missing something?

Is there a program that I have not thought about? And the other financial thing I wanted to talk about is related to clinical trials. So, Matt, I know you’re aware of this. And you traveled across the country for second opinions and different treatments. And some of my other friends with lung cancer have gone for some distance for clinical trials. But there can be assistance for that too, Matt, as well, right?

Matt Ellefson:   

Yes, there can. And not many patients are aware of that, but it’s becoming more and more prevalent, actually, which is good. It needs to. They are opening up payment for travel costs, which is great. Oftentimes, clinical trials already cover the drug cost. But if you’re able to get the cost of traveling to and from your treatments, that can save you a lot of money. And that—it’s really important.

It’s gonna help drive the enrollment of clinical trials, which, on average in the U.S. is at three percent. It’s very low. And as we can get that enrollment to increase at higher levels, that just allows the drug to be approved that much quicker. So, it’s really important. 

Andrew Schorr:

Great. Great. So, Sandra, so there are sometimes—I know I had a—maybe it was in Northwestern where you are, or another center where the social workers or clinical trial coordinators sometimes had coupons for different airlines. I think Southwest Airlines did, to help for patients who were coming from a distance. Am I right? But you need to ask.

Sandra Manley-Eichler: 

Yes, you do have to ask. You’re absolutely right. There are some airlines that will contract with different hospitals for providing specifically that. So, especially for finding—whether it’s getting a second opinion or traveling specifically for clinical trials.

I’m also gonna recommended the Corporate Angels Network. They provide free flights for patients. So, it’s a system where folks with access to corporate jets, private flights, will open up seats as they become available for survivors of cancer. So, I think, like you said, it’s always about asking. There’s no harm in that, right?

Andrew Schorr:

Oh, one other thing I wanted to mention is a lot’s changing in the U.S., and we’re all watching it carefully about insurance issues, including with Medicare. And so, the Centers for Medicare and Medicaid have a proposed rule change coming up for those of us who take oral medicines through Medicare Part D, where our copay will be based on the discounted price that the insurance company may have negotiated with the drug company, which, believe it or not, right now, they often don’t pay us on. So, we pay a co-pay that’s a percentage of the retail price when whoever was providing the medicine to us got a discount that they didn’t pay us on us.

Kind of bad and crazy. And so, if you keep an eye on our Patient Power website, I’m gonna be blogging about this and give you a link so you can sound off with the Medicare folks as this proposed rule change is considered. Okay. So, we talked about finance as best we could. We talked about family relationships. I want to talk to you a little bit, Katie, a little bit more about speaking up with your doctor. Maybe the nurse is right there with you, and you have a relationship with them, and then those visits you have with the doctor, and sometimes it’s a little intimidating.

Katie Michelson:               

Mm-hmm.

Andrew Schorr:

So, what would you say to people, though—we talked about communication, about not being afraid to ask questions of the doc, who you may see sometimes as a scientist. And maybe there’s a lot of lingo that’s going on. You’re a little intimidated. But kind of your right to ask questions.

Katie Michelson:

Absolutely. I’ve said it. Ask the questions that you have. If they don’t have the answer that you’re looking for, ask it again. I mean, just keep being an advocate for yourself. And when it comes to therapy and side effects and the toxicity that you might be experiencing, it’s important to discuss that with your doctor, too. And don’t be afraid that a treatment plan would change, or that chemo would be stopped, or that treatment would be stopped just based on side effects. Talk to your doctor and talk to your provider. Keep an open dialogue. Ask questions.

Andrew Schorr:

Well, Matt, let’s be a little more specific about it. There were some people—we were talking about how often patients don’t want to speak up. They just want to put their head down and deal with it. But yet, people may be suffering some side effects that they’re sort of—I don’t want to say grin and bearing, but just bearing.

Again, it’s really important to—the resources can’t be brought to bear unless they know that you’re dealing with a lot of pain, or you’re not sleeping, you have extreme nausea when you get home. They don’t know unless you tell them, right?

Matt Ellefson:   

That’s true. You don’t know what you don’t know. And it is difficult for us, because we are afraid that if we say something sometimes, that’s gonna mean that, okay, they’re gonna reduce dosage. And that may mean that it’s not gonna be as effective. Or there are a number of things. Because at this point in the game, we don’t understand the answer all that well. Now, myself, being on my eighth year, I understand those things really well now. And I get into some pretty serious debates with my oncologist. And I’m not afraid to tell them anything.

But when you’re initially diagnosed, that’s not the case. You don’t feel comfortable, and you are afraid that if you bring up certain things, it may change the course of your treatment. And you need to realize that’s not true. You need to have that discussion. If they do want to change the course of your treatment, then you start talking about that, and you start weighing the benefits of that versus dealing with the side effects. And there are so many different medicines, even alternative therapies, available to deal with side effects. So, you have many, many options. So, you need to exhaust those first before you become afraid that you’re gonna need your treatment reduced or changed.

Andrew Schorr:

Earlier, you mentioned about getting a second opinion. A lot of times, people are hesitant to mention that to Doctor Number One, because Doctor Number One will feel insulted.

Matt Ellefson:   

You’re absolutely right. And it’s not even Doctor Number One. It’s Doctor Number Two. I mean, even today, at almost eight years, I need my doctor, and he’s great. And I have more than one doctor. I have a second opinion doctor, and I have even a third opinion doctor that I’m connected with all the time. But my primary oncologist—I need him. And I do not want to upset him. And I do not want him—because I feel that if I say the wrong thing and I upset him in some way, he’s not gonna give me the attention, maybe, that I deserve, and he may say, well, the heck with him. He’s a complainer. He doesn’t believe in me, so I’m gonna focus on other patients. That’s our normal thought process. But I’d love to hear Katie and Sandra, what their comments are on this.

That’s not true. They don’t do that. They understand that patients are going through a difficult time. And they know how to deal with it. 

Andrew Schorr:

So, Sandra, what would you say? So, one resource for people’s treatment is to get a second opinion so there’s a clear picture of what they’re dealing with. What would you say? So, how do they make that happen and feel okay about it?

Sandra Manley-Eichler: 

Well, I think we have to remember that physicians are also scientists. And scientists believe in repetition of testing. And so, if anything, the physician is very confident about his or her approach to your treatment, then they’re gonna want somebody else to verify that—to say, yup, that you’re going to the right place and you’re getting exactly the right treatment that you have. That being said, a lot of physicians, even though we hold them up as authority figures, and they’re really great people and very smart – they also appreciate that, hey, there maybe somebody else who has a better idea than I do.

And so, I think having a very honest conversation, and even so much as just say, “You know, Doc, I have a question, but I’m a little uncomfortable asking it.” And so, maybe that would be sort of a way to start the conversation and then continue from there. Because sometimes, you’ll be surprised. They’ll already have a person for you to go to. They’ll say, “Oh, sure. I know somebody at Sloan-Kettering. I know somebody at Dana Farber. You should go to this person for the second opinion,” right? And so, I think that it’s just kind of checking in with them and seeing where’s your next step?

Andrew Schorr:

Okay. And one more thing about it is, let’s say that my family member uncovers a clinical trial somewhere else. You’re in Chicago. You have a bunch of major medical centers. I may be hesitant, or should I be, to bring it up with my doctor at my institution where I’ve started, because the trial’s not there.

Sandra Manley-Eichler: 

I think a lot of people feel hesitant, and you folks already mentioned this idea of maybe offending the physician or insulting them in some way. I think that it’s one of those things where a clinical trial contributes to everybody. So, enrollment in clinical trials really only helps the physician that you’re seeing, whether it’s at the place that you’re going first to start treatment or all of them. So, I think that there’s a really great community of physicians who really believe in clinical trials, and they want more enrollment, and enrollment for something that’s the best for your cancer. I think one of the best things about lung cancer treatment is how targeted it is. And that’s really coming out in a lot of the research. And the research wouldn’t be here without clinical trials, whether that’s at your home institution, or whether that’s at another hospital. But the hesitancy is definitely there.

Andrew Schorr:

Okay. So, one of the people watching our show said, “Gee, give me some more hard information.” So, I hope you’re writing some stuff down.

So, for instance—and you just touched on it—there are specific cell types of lung cancer. Not just non-small cell or small cell, but different types. You’ve heard of some of them. Maybe you’re dealing with the ALK mutation, the EGFR. They’re identifying others. ROS1, I mentioned. So, in any case, whether you have one of these identified mutations or others that maybe you’ve noticed, that’s where the testing comes in. And Katie, talk about that. So, for instance, there are a number of companies now doing testing, and there are groups like the Lung Cancer Alliance, and Bonnie Addario, and I think some of the others have been involved, to facilitate you getting the testing if otherwise, you’re having insurance issues or things to help get it paid for. But you gotta ask. You gotta speak up. And Katie, I’m sure you’re familiar now with all these subsets of lung cancer now, and how important it is to get an accurate diagnosis of what’s going on with you, right?

Katie Michelson:               

Yes. 

Andrew Schorr:

Yeah. It really is vital. So, again, ask about tests. Is there a test that I should have, and then you can call one of these foundations, like I mentioned, Lung Cancer Alliance. A, how do I get this genomic testing handled for me? And then their company’s foundation, Medicine Garden, there are a number that do the testing that also have programs to facilitate getting it paid for possibly, or sometimes there’s assistance in other ways as well. So, hopefully that’s some concrete information for people about diagnosis.

We talked about travel. We talked about clinical trials. We’ve talked about the family issues as well. Now, going forward with the uncertainty of it, how do you cope, Matt? I mean, you started SURVIVEiT. But for people you know and even yourself, there’s so much uncertainty of how long the treatment that you have will work, or is there a plan? What resources do you use to move forward—to have hope, basically?

Matt Ellefson:   

Well, the biggest thing that I do is I go—I’m a man of very strong faith, and I go back to my faith. And I always try to be grateful. And when I’m in a slump, I take ten minutes to think about five things I’m grateful for, and I write them down. And we can’t be fearful, or angry, or shameful, or full of any pity, and be grateful at the same time. They don’t go together. You just can’t be that way. Gratitude always kills fear. It kills anger. It kills doubt. It kills shame. And gratitude’s your friend. So, always—you learn to change your thoughts. You learn to change your mind. And another thing I do is, instead of trying to think about how I think or feel, I focus on being the difference.

And I feel that’s why my health has been so sustainable for so long, is I’ve learned that—I’ve learned where my blessings have come from. It’s not from thinking, and it’s not from telling people, but from being. Being optimistic, and being humble, and being empathetic, and being compassionate, and being a warrior of love. Being somebody that, I’m gonna take this on, but I’m gonna love a lot of people along the way. And that is really, really important.

Andrew Schorr:

Well, thank you on so much about that and what propels you. And I think it’s good advice for other people. Matt, you had genomic testing. You’ve had it at different times. Some people have written in and said, “Well, what if my doctor is not willing to do that?”

Or sending it off for other analysis? So, what can you tell people about that and how they can really understand what their mutational status is, and getting that analyzed by the appropriate lab?

Matt Ellefson:   

No, especially via late stage cancer, stage III or IV, it is crucial that you get genomic testing. And not just the testing that your cancer center can provide. I mean, don’t only test for the genes that they have the ability to treat. You need a comprehensive panel. And if your doctor’s unwilling to do that, you need another doctor. It’s just that simple. You need to seek a second opinion immediately. Because cancer is very complex. And the reality is, it doesn’t matter what enemy you have. You can’t find any enemy until you know what that enemy is. And it’s the same way with cancer.

Until we can pinpoint what is specifically driving our cancer, we can’t fight it effectively. So, it’s extremely important to have a comprehensive full panel genomic sequencing performed so that you are provided with—first of all, you understand what is driving your cancer. And even if what is driving your cancer today doesn’t have a targetable solution, a medicine that can target that gene to stop the cancer, at least now you know what to watch for. Because there are breakthroughs coming through monthly. I mean, I get emails—I sign up to listings. SURVIVEIT posts them very quickly in our newsroom, into our social media channels. That stuff is happening faster than it ever has in the history of the delivery of cancer care.

The innovative technology today is happening very quickly. So, you can’t ever lose hope. You really can’t lose hope. When I was diagnosed almost eight years ago, they had one treatment—excuse me—available, a targeted therapy available for lung cancer. And now today, there’s five. And it’s because I’ve been able to stay alive during that time period, I’ve been able to allow them to develop another one and another one.

Andrew Schorr:

A bridge to what’s next. A bridge to what’s next.

Matt Ellefson:   

And you can’t—you just can’t lose hope. You need to know what it is that’s driving your cancer so you can follow that.

Andrew Schorr:

Right. So, Matt, you know we have a friend Lisa Goldman out in California, where her initial genomic testing was for one gene. And then she needed to be tested again and again, and they’d already started her on chemo.

But fortunately, they got to the point where they identified the gene like the third or fourth time around that was active for her, and there was a treatment. And she’s still doing quite well on it, and hopefully, knock on wood, that’ll continue for a long time.

Matt Ellefson:   

Yeah.

Andrew Schorr:

So, you need to get to that point. Now, people ask for hard resources here. So, the Lung Cancer Alliance has a program where you can call, and they have various groups that work with you to assist you in getting genomic testing, okay? And we, Matt and I, are involved in something called the Precision Medicine for Me Consortium, where we’re working now where there may be research groups that come into play that will facilitate paying for the test if you otherwise don’t have insurance. And unfortunately, that’s the mission now, to pay for testing. Okay?

So, listen carefully. I hope you’ve written some of this down. And I wanted to bring up one another thing related to insurance. Some people have fights with their insurance company in their state. Not Medicare now, or maybe this insurance company or that insurance company, operating in your state. There’s a group called the AIMED Alliance—A-I-M-E-D, AIMED Alliance. It’s aimedalliance.com—where they have—it’s propelled by health insurance attorneys who will go to bat with you to make sure that you, even if you have to appeal to the state insurance commissioner, that if there have been denials, that you can appeal that and go through the process to get what is—what you deserve.

So, I know, Sandra, people don’t want to have to have these fights with insurance companies or go to all these resources. But I guess today with this moving target of lung cancer, maybe when you delegate it to family members, that’s unfortunately part of the job.

Sandra Manley-Eichler:

I think that I try not to see it so much as a fight as every patient is a lion tamer in a circus. And whether or not we want to be dealing with the circus, or we want to be that lion tamer, I think that we need to take that control to the patient. I think that one thing that I usually encourage a lot of my patients is to not be afraid. You are the patient. The insurance is intended to be supportive of your care, and if you don’t feel that it’s doing that, then it’s within everyone’s best interest to advocate for that. I’m really glad that you mentioned AIMED Alliance. I’m also going to recommend the organization Triage Cancer. So, Triage is T-R-I-A-G-E. They have a lot of information on their blog about supporting patients, as well as other free webinars talking about how best to navigate their health insurance.

I agree with you, I think it’s really unfortunate that a lot of patients, on top of the stress of treatment, feel like they have to fight with their insurance company. As a social worker, I work with patients, and I often do a lot of conference calls with patients with their insurance company to try to see if we can figure out, where is the disconnect? Where is the coverage not meeting their expectation? And how we can work with that. And I think over time, since it’s gonna continue to come up, because patients—our voice is getting stronger, right? That hopefully, there’ll be a resolution. That’s my hope.

Andrew Schorr:

Right. Amen. Well, Matt is part of that. I try to be part of it too. So, Katie, what advice would you give—as we get close to our ending time here. You’re at a community campus center, but it sounds like they’re in Rapid City. You have a lot of resources – nurse navigators, social workers, people who help look into financial programs. And most people are treated at it sounded more like yours. But some may go to Northwestern, certainly, and the cancer centers like where Sandra is.

But at your level, what would you say people can do so that they take advantage of these? Should they just start by saying to the nurse who’s sticking tubes in their arm, should they say, “Hey, is there somebody I can talk to about finance?” Or, “I’m feeling really down, or my family is,” or, “Gee, I want to get a second opinion.” How do you start the conversation?

Katie Michelson:               

I think it can start with the nurse, definitely. They’re usually the first person that sees you once you’re there for your consultation or for your visit. And then in turn, the nurse can let either the nurse practitioner or the doctor know, and we’ll get you in touch with the social worker or, like I said, the nurse navigators. We can do whatever we can to get you the resources that you need. The first start can be with the person at the front desk. It doesn’t matter who you ask first. It just needs to be asked so that we know that you need the assistance.

Andrew Schorr:

I want to put in a plug for something I wrote about six years ago. When I was diagnosed, I didn’t know anything. And as Matt was saying, we’re often drinking from the fire hose. A lot of data coming at us, and information and jargon we can’t understand or absorb, and we’re terrified. I wrote a book called The Web-Savvy Patient, and here we are on the web. Look it up. The Web-Savvy Patient. And I’ll say right off the bat, I need to revise it. But the process you can go through and some of the resources that were available, even when I wrote the book, and they’ve just multiplied since then, were the process—asking questions, going into the lit. Is there a social worker? Is there a nurse navigator? Is there a financial counselor? Is there air travel assistance? Is there a clinical trial? How do I identify who I should get for a second opinion? And all of that is available to you.

Matt, some closing comments from you. What would you say where people say, “God, I don’t know where to turn”? What would you say to them?

Matt Ellefson:   

I would say turn to God. I would say turn to God, yeah. There are so many people that are really gripped by fear and gripped by the failure to really provide the answers or locate the answers that they’re searching for. And you can always pray for wisdom. And you can also—SURVIVEiT is built—we’re an organization of survivors helping patients. We are built primarily and entirely for the focus that we’re talking about today, because we have been there, and we know what it’s like to struggle. So, we provide and we vote on best-in-class resources. So, if you go surviveIt.org and resource library, it is full of best-in-class resources to help you.

And the other thing that we do is we started a series of videos called Fearless Fridays. And on Fearless Friday, we have a video, and we talk about topics like we talked about today. We pick a different topic every week. But one thing I would also recommend people to do is to reach out and join our SURVIVEiT prayer wall on Facebook. And if you need any help at all, if you need a prayer that’s sent your way – and it doesn’t matter what religion you are—we are gonna pray for everybody. So, everyone is welcome, and everyone can send a prayer, or you can write prayers to others. One of my biggest go to prayers is, “Jesus, I’ll go where you send me. I’m willing and I’m not afraid. My pains and sufferings—may my pains and sufferings contribute in some way to the peace of others.

“And please help me touch those in need with the same love that you’ve given me.” And by changing your thoughts from yourself to how you’re gonna help others, and by allowing yourself to use what is happening to you, these pains and sufferings, for a positive use to help other people, and that’s how you conquer cancer.

Andrew Schorr:

Well, I agree. I’m Jewish, so I see it similarly, but slightly different. And some of you may be religious or not. But I think the idea of this positive force that you can develop in yourself, and draw from others, and bring out in others to help you. And I think you’d agree that, Katie, the healthcare team is really there to help you and give you that sort of support. I’ve had a lot of hugs from nurses.

Katie Michelson:               

We are. Nurses are the best.

Andrew Schorr:

It’s so true. I have a nurse in the family as well. Any final comment from you, Sandra, where people feel overwhelmed about how they can pull on some of these resources, to have the courage to do it? What would you say?

Sandra Manley-Eichler: 

Well, I think everybody has courage. You’re living every minute with a very aggressive, or maybe not aggressive, but something that feels very heavy for a cancer diagnosis. And that’s for both patients and their caregivers. I think that, kind of piggybacking off of what Matt said, that wherever you can find meaning is most important. Some people find meaning in the little things. That really great cup of coffee they have in the morning, the sound of a child laughing—things like that. It’s sort of the details of the day. Some people find meaning with bigger things, like speaking on a panel like this, like you’re doing, Matt, and sort of reaching out and using their experience to help other patients sort of make sense of their diagnosis.

And sort of going back to the question of “why me,” right? Well, why not? And so, you seek meaning in every day and every minute that you have, and that will carry you through. And that will give you the courage to ask for the things that you need, whether they’re small and practical, or whether they’re big and emotional.

Andrew Schorr:

So, I’m gonna give you a couple of other suggestions before we wrap up, too. So, my daughter Ruthie coordinates a Facebook group that we started in February of 2017, and it’s called the Cancer Connection. So, it’s people with all different cancers—a number of people with lung cancer. It has about—approaching 90,000 followers. So, these are people who’ve reached out, and they want to make a connection. Matt’s group has it. There are other lung cancer-specific Facebook groups. But draw on that.

And then going back to something we were talking about with Katie, strike up a conversation with somebody in the waiting room, in the infusion room, at the cafeteria, in the hospital or the clinic. I do that. Then you put yourself out. And I’ve been doing it now—21 years ago, I was diagnosed with leukemia. I’ve met so many people. Many, I’ve met only virtually, and then, boy, if I’ve ever met them in person, it’s like we know each other, and I’ve heard about their kids, and we’ve heard about their journey. We all have that Purple Heart of having gone through cancer care, and so we can relate to that. Speak up. Don’t keep it all bottled up. Sandra, would you agree with that?

Sandra Manley-Eichler: 

Absolutely. And I think that a lot of people feel voiceless when they get diagnosed, but it’s not the case. Your voice just becomes stronger as a result of your diagnosis.

Andrew Schorr:

Well, I want to thank all of you, and I want to thank you, Sandra, for joining us from the Lurie Cancer Center at Northwestern, Chicago.

And Katie, thank you for joining us from Rapid City. I hope it’s not a harsh winter there.

Katie Michelson:

We really haven’t had a winter yet.

Andrew Schorr:

Well, good. Maybe it won’t be that. And there’s your Uncle Matt down in Florida, in the sun, enjoying his health, but enjoying every day, Matt. Matt, thank you so much for all you do from SURVIVEiT, and thank you for some sage advice today. Thanks for being with us.

Matt Ellefson:   

A pleasure to be here, Andrew. Thank you for everything you do.

Andrew Schorr:

Okay, well, thank you. It is a pleasure. I want to thank everybody. We went a little bit long, but hopefully, if you were taking notes, there are some resources along the way that you had. And remember, it was really—just have—really just celebrate every day, is what I do. And I know that’s what Matt does. And then draw on others to help you.

The resources are there. I want to thank you sponsors for supporting this program—CelGene, Nelson, Novartis, and Genentech. And thank you so much to the Patient Empowerment Network for allowing us to work with you to put on these programs.

And thanks to your group, Matt, SURVIVEiT, and also the Lung Cancer Awareness Month Coalition. And I hope that this month, but every day, we can continue to raise awareness and hope for cures. In Carlsbad, California, I’m Andrew Schorr. Remember, knowledge can be the best medicine of all.

How Do I Stay Strong During Lung Cancer Treatment?

How Do I Stay Strong During Lung Cancer Treatment? from Patient Empowerment Network on Vimeo.

How can I stay strong during lung cancer treatment? Can I tackle fatigue, nausea and anxiety through lifestyle changes? Two noted experts, Dr. Christine Lovly, Assistant Professor of Medicine in the Division of Hematology-Oncology at Vanderbilt-Ingram Cancer Center and Dr. Ishwaria M. Subbiah, Assistant Professor of Palliative, Rehabilitation & Integrative Medicine at The University of Texas MD Anderson Cancer Center both discuss how they work with lung cancer patients and their families daily to address effective evidence-based interventions that can be used to help patients stay strong during treatment.

ASCO 2017 Roundtable: Progress in Lung Cancer on Multiple Fronts

At the recent American Society of Clinical Oncology meeting (ASCO), Dr. David Carbone, Director of the James Thoracic Center, James Cancer Hospital and Solove Research Institute at Ohio State University Comprehensive Cancer Center and Dr. George Simon, Professor in the Department of Thoracic/Head and Neck Oncology at The University of Texas MD Anderson Cancer Center, share highlights from the meeting including what they call “progress on multiple fronts in lung cancer.” Dr. Carbone discusses how patients should demand a genetic workup on their tumor and his free genetic testing initiative at Ohio State. Dr. Simon shares how some immunotherapy and chemotherapy combinations are showing promise and how small cell lung cancer patients could potentially also benefit. Watch the video below to hear from two lung cancer experts.

ASCO 2017 Roundtable: Progress in Lung Cancer on Multiple Fronts from Patient Empowerment Network on Vimeo.

Who Is Eligible and How Can I Learn More About Clinical Trials?

From the Lung Cancer Town Meeting in September 2016, Janet Freeman-Daily interviews a panel of lung cancer experts about who is eligible for clinical trials and how you can learn more about them. The panel includes the following experts:

  • Nisha Monhindra, MD Assistant Professor of Medicine, Hematology/Oncology Division, Feinberg School of Medicine Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • D. Ross Camidge, MD, PhD, Director Thoracic Oncology Clinical and Clinical Research Programs University of Colorado Denver
  • David D. Odell, MD, MMSc, Assistant Professor, Thoracic Surgery Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • Timothy J. Kruser, MD, Assistant Professor, Radiation Oncology Robert H. Lurie Comprehensive Cancer Center of Northwestern University

Check out the full video below to hear all of the lung cancer experts advice.

Who is Eligible and How Can I Learn More About Clinical Trials? from Patient Empowerment Network on Vimeo.

Getting A Second Opinion From A Rural Location?

From a Town Meeting in September 2016, Janet Freeman-Daily interviews a panel of cancer experts about how patients in rural or remote locations can get second or multidisciplinary opinions from larger facilities or academic institutes. The panel includes the following experts:

  • Nisha Monhindra, MD Assistant Professor of Medicine, Hematology/Oncology Division, Feinberg School of Medicine Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • D. Ross Camidge, MD, PhD, Director Thoracic Oncology Clinical and Clinical Research Programs University of Colorado Denver
  • David D. Odell, MD, MMSc, Assistant Professor, Thoracic Surgery Robert H. Lurie Comprehensive Cancer Center of Northwestern University
  • Timothy J. Kruser, MD, Assistant Professor, Radiation Oncology Robert H. Lurie Comprehensive Cancer Center of Northwestern University

Check out the full video below to hear all the experts advice.

 

Getting A Second Opinion From A Rural Location? from Patient Empowerment Network on Vimeo.

How Can Cancer Patients Contribute to Science?

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

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

 

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

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