Educated Patient® Webinar: Meet the 2021 Lung Cancer Heroes®

Ryan McDonald: Hello everyone and welcome to today’s live broadcast, the CURE Educated Patient Webinar: Meet the 2021 Lung Cancer Heroes. I am Ryan McDonald, Associate Editorial Director of CURE. We are pleased to bring you this webcast presented by CURE, sponsored by Takeda Oncology. Through CURE’s Lung Cancer Heroes award ceremony, which was held on Thursday, October 28, CURE, Takeda, and the advocacy community brought together the lung cancer community to end the stigma, inform, connect, and empower anyone who has been impacted by lung cancer. Together as one community, we can raise awareness of lung cancer, and most importantly, we were able to recognize and celebrate the esteemed individuals contributing to improving the lives of patients with lung cancer. There are a few important announcements before we begin. We encourage you to ask questions during the event which you can submit by typing them in the Q&A box on your screen. You will be receiving a survey via email tomorrow. As a thank you for watching the full webinar and completing the survey, you will be entered to win a Visa Gift Card. And now I would like to introduce this year’s lung cancer heroes. Dr. Hossein Borghaei, Chief of the Division of Thoracic Medical Oncology, a professor in the Department of Hematology/Oncology and co-director of the Immune Monitoring Facility at Fox Chase Cancer Center. Heidi Nafman-Onda, a lung cancer survivor and advocate and founder of The White Ribbon Project along with her husband Pierre. And Dr. Kenneth Rosenzweig, a professor and system chair of radiation/oncology in the Mount Sinai Health System. Before we began I would like to congratulate our heroes and thanks them for all they have done for the lung cancer community. Now, to start, we will open the conversation talking about early detection in lung cancer. I would like to start with you Heidi. As a survivor and lung cancer advocate, why do you think early detection is key for patients?

Heidi L. Nafman-Onda: I am also a health educator and a lifelong health enthusiast, so I didn’t even know that I could be susceptible to lung cancer and didn’t qualify for any screening. In all other cancers, prevention is equal to screening and early detection and in lung cancer it’s only been equated with don’t smoke and this doesn’t happen to you. So, lung cancer has been I think lagging behind in even getting people who are eligible screened and we need to get the word out. We need more awareness, so we could have a better chance of catching things early when there is a higher likelihood of being cured and having a really good outcome.

Ryan McDonald: And also to Heidi, you mentioned – you didn’t even necessarily know that you could get lung cancer, so as someone who has had it and gone through treatment and everything, how would you advise patients to act upon any site or experience of any type of symptoms. Maybe they want to brush it off but how would you advise them [00:03:00] to act upon that?

Heidi L. Nafman-Onda: In my particular situation, I didn’t have any symptoms. Mine was an accidental catch but listen to your body. If something doesn’t feel right, you’re normally in shape and you suddenly feel short of breath or you have a cough, really-really push and advocate for yourself. Listen to your body, get in touch with her doctor.

Ryan McDonald: Pierre, from a caregiver perspective, what advice would you give to others who may be trying to encourage their significant others to get screened? I know Heidi’s situation was different in that it was accidental diagnosis but for someone out there who maybe wanting their significant other to get screened, what are some suggestions you would have for them?

Pierre: I would definitely encourage them to seek advice from their doctors and ask them whether or not they currently qualify for lung cancer screening. There are national guidelines that are available and certainly if you have a history of smoking you definitely need to ask your doctor whether or not you qualify but there are other risk factors. And even if you don’t currently meet the current guidelines, I think you should have a discussion with your primary care physician about how to mitigate any other risks.

Ryan McDonald: In terms of detecting lung cancer, Dr. Borghaei, where are we in terms of detecting it at earlier stages?

Dr. Hossein Borghaei: First of all, good evening everybody and thank you for having us on to talk about this really important issue. As you heard from Heidi, at this point we do not have a general population type approach to lung cancer screening. What we do have is lung cancer screening with what we call a low dose CAT scan, I can explain that little bit more, for a patient population or a subject population I should say whom we think are at a higher risk of developing lung cancer and that includes patients in a certain age group, 50 to 80 years of age who have had either a prior history of heavy smoking or have quit within the last 10 to 15 years. And if they meet these certain criteria plus a couple of other additional criteria, these individuals can actually qualify to be screened with a low dose CAT scan once a year for three years. We would consider this to be a patient population who is at risk of developing lung cancer based on one or two actually more than that [00:06:00] but a couple of really large randomized trials that look that the utility of a CAT scan for detecting lung cancer. If you are thinking about lung cancer detection and are general patient population at this point we really don’t have a legitimate approach to this. Unfortunately, as you heard, many of our patients now are not really in a high risk category by the traditional definition for this disease and therefore we are struggling with how else or what other methodology can be used for this early detection which again I keep going back to what Heidi said in the beginning, it’s really important because we can have the biggest impact on the disease course if we find it early on. That is where our CURE rates are higher, that is where we can have a lot more impact and therefore it is a question that I think the community in general is trying to deal with, what else can we do which will have a more applicable screening test, if you will, for everybody who might be at risk.

Ryan McDonald: As a follow-up to that, you mentioned we are all wondering what else can we do. In your opinion, what are some things that could be done or are needed in this space to get the ball rolling so to speak?

Dr. Hossein Borghaei: Clearly identifying markers that can be detected with a simple test, perhaps a blood test or a urine test or something to that affect that is cheap, that is available easily across the country and to everyone which obviously brings in a lot of regulatory insurance coverage and all of that with it. But the first step in this process is to be able to identify a biologic protein or a screening test or something to that affect that can be proven to be effective in this setting. I think we have to keep in mind that every time we mention a detection test whether it is PSA for men with prostate, whether it is mammography for women with breast cancer, that comes with a certain amount of anxiety for the person who is undergoing that screening test. It is also very important to keep in mind that if we’re thinking about a population based screening we need to have access to something that is available to everyone. We have heard about all the disparities that exist, therefore, having a task that has been proven in large studies to be affective in predicting early disease and it is accurate is really-really important because the last thing I want to do is to order a test for a patient inducing anxiety, getting back something that is not interpretable or we don’t know what to do with it, therefore, this really is a huge task that we’re asking our [00:09:00] scientists and clinicians and other people who works in this field to come up with. I think there are very important efforts on the way to have a blood based assay that perhaps hopefully soon we’ll know and going to be able to detect various cancers including lung cancer but this is actually quite an important project, quite an important step to be undertaken. I think there is lot that rides with this kind of detection methodology. I think it’s just going to take time and we have to be cognizant of all of these issues that is associated with it but the work is ongoing. At least I am really hopeful that fairly soon we will have access to something that can be applied to a general population in terms of screening and that time frame of course is not immediate, it’s not like tomorrow, it’s not next week but I think the work has started and everybody realizes the importance of it.

Ryan McDonald: Dr. Rosenzweig, part of your clinical focus is on mesothelioma. We know this disease is quite rare but, in your opinion, as we talk about early detection and screening and making sure patients are perhaps aware of the risks, what should patients be aware of so that this disease can be caught early?

Dr. Kenneth Rosenzweig: Thank you and also thank you for allowing me to participate in this webinar. As you said mesothelioma is a very rare tumor, so much less prevalent than lung cancer. It makes it a little bit more challenging to find. It’s a little bit more of a needle in haystack. Of course, with mesothelioma we know that there is a huge risk factor to developing mesothelioma and that exposure to asbestos, so obviously there are some professions which have a lot more asbestos exposure than others. And a lot of those groups either they are trade group or they are union or just even a loose group does do some screening and some monitoring for mesothelioma. But clearly anyone who has a history of asbestos exposure who develops shortness of breath should not let it - see what happens and if there is ever any fluid around the lung – that can be a challenging situation for some physicians who aren’t used to seeing that. I would advocate that person get into a center that does have some expertise in mesothelioma. It’s not that doctors aren’t smart or don’t know what they are doing but they are so few cases in this country that even some of the most experienced lung cancer physicians out there and some of the greatest minds just never really [00:12:00] see that many patients who suffer from this disease. So, getting to a center that has some expertise which can cut through some of the stats and get a diagnosis earlier and talk about some treatment options I think is very important for this disease. But still there is a lot of mesothelioma in patients who don’t have a known history of asbestos exposure. They might have been exposed to it but just not aware of it at an earlier age and there is a long latency between when you were first exposed and until the disease shows up. There is not a whole lot to do and you really can’t do screening exams and just like Dr. Borghaei was talking about I think the anxiety and the expense that that would cause to catch so few cases just doesn’t make any social sense. There is a high likelihood you might hurt more people than help if you screen too many because it’s such a rare disease. Really, just I think mostly for people who have known exposure pattern who are in some profession that might have a high risk to it. There is a weird subgroup of people where mesothelioma might run in the family, so if there is a family history of mesothelioma or another type of cancer melanoma of the eye, again these are very rare conditions but if this is something you have heard in your family it might be worth getting some genetic counseling to see if you have this gene that might predispose you to mesothelioma. Again, that’s going to be a very small subset of people in this country but might be worthwhile if you’ve heard that in your family history.

Ryan McDonald: We just had a question coming from the audience that I like to open this up to both Dr. Rosenzweig and Dr. Borghaei is, looking at lung scars or lung damage how likely are these to cause lung cancer and if so how should these patients be monitored and screened.

Dr. Hossein Borghaei: Ken, do you want to take that?

Dr. Kenneth Rosenzweig: Yes, thank you Dr. Borghaei. It’s very challenging. When there are abnormalities on the lung, it can be very difficult and again like we were talking, you always want to have the correct threshold because you don’t want to call everything an abnormality and send everyone for a biopsy and people can be hurt from biopsies. It’s not a completely procedure free of side effects, lung collapse, chest tubes, things like that. Very unlikely to have a lethal side effect to it but still you don’t want people sticking needles in you unless you need to. I think the best way is [00:15:00] just following people over time and see if there are any changes from every six months, every year, and clearly if something is growing and looking more suspicious then that needs to be evaluated but sometimes that’s difficult too. The analogy I sometimes I use, it’s like watching your children grow, day-to-day it doesn’t look like your child has changed at all but clearly over a year or over two years it could be a big difference. If you get scans too frequently you might not be able to appreciate a small sub mm difference but over time you go back a few years you might be able to see something happening.

Dr. Hossein Borghaei: I agree and it also depends on how the scar is formed. Is it from an infection, prior surgery, prior radiation. There are number of different reasons why something like this could happen and I would agree with Dr. Rosenzweig that actually following these abnormalities on CT at regular intervals is probably the best way to do it. If things don’t change over a period of time perhaps reducing the amount of CT scan for evaluation would not be inappropriate, however, if there are changes then by all means other steps should be taken to investigate them.

Ryan McDonald: Just a reminder to everyone who is out there listening. If you have a question, please submit it on the Q&A box on your screen and we will be sure to try and get to as many of those as we possibly can. Moving on quickly here, talking more about biomarker testing and making personalized treatment decisions. Dr. Borghaei, you touched on it a little bit earlier about biomarker testing. Can you expand a little bit more about what it is and explain and describe it and also why patients should just be advocating for themselves to be tested?

Dr. Hossein Borghaei: If I go a little long-winded on this please stop me. I don’t want to take up all the time. This is a topic that has been discussed at various meetings and programs over the past decade or so. Basically, the concept of biomarker testing is looking for specific changes, alterations, mutations, things that we describe with the scientific sounding names like translocation within the tumor itself. I think we have to emphasize that these are not necessarily genetic changes that we’re talking about being hereditary genetic alteration passing from one person to another, although I have to say for lung cancer there is a lot that we don’t know regarding the hereditary nature of the disease or anything. But these are actual changes that we can detect within the DNA of a particular tumor. For the most part these are applicable [00:18:00] to tumors that we classify as being adenocarcinoma or non-squamous which fall under the broad category of non-small cell lung cancer. These are essentially markers that allow the physicians to choose very specific what we label as targeted therapy for patients that have these alterations. It’s called targeted therapy simply because we can identify the target in DNA of the tumor and we have very specific medications that are designed to attack that particular target. Therefore, we think this is the best way of personalizing the delivery of care instead of using chemotherapy that can hit everything that is growing. These drugs are designed to go specifically to the particular tumor that has that particular alteration. Therefore, the treatment can be more effective and also the side effects can be far lower than the traditional chemotherapy or other non-specific treatments that we tend to use in the past. Therefore, finding these can have significant implications for the treatment decision making process. You go with the targeted therapy. You can for the most part be treated with specific oral agent, it does not require IV administration, does not have to come to the cancer center or the doctor’s office every two or three weeks or whatever the duration of the chemo is. And also as I said because it’s more directed, the side effect profile is less. Unfortunately, we haven’t been able to come up with an anticancer drug that doesn’t have any side effect. They all unfortunately have adverse events associated with them but these side effects are a lot easier to manage for the most part than traditional chemotherapy or other anticancer treatments. To me finding a biomarker for treatment or molecular testing as we call it is as important as knowing what the stage of the cancer is because without knowing the right stage, it’s hard to coming up with the treatment option for the patients that we see. I think it’s the same thing with these biomarkers. If we don’t know it we are guessing. At the end of the day, that might not be the best treatment option. Therefore, I think it’s imperative that when you’re meeting with a physician or physician group, ask what is the biomarker status and if it is applicable to [INAUDIBLE] your physician will go over how it is done, why we do it, and how to obtain it. I actually think this is one of the more important questions that patients should ask an oncologist when they have a diagnosis of advanced lung cancer. The other thing is that I did say I was going to be long-winded, I am sorry. The other important thing is that even though we started in the advance and metastatic setting with these targeted therapies, we are beginning to have evidence that even an early stage disease, some [00:21:00] of these can be very relevant and able to control the disease and prevent recurrences so that becomes a little bit more of a technical discussion but the evidence is beginning to accumulate that maybe even at an early stage disease, some of these drugs can be highly effective.

Ryan McDonald: OK, thank you for that. Heidi, on the patient side of things was we talk about biomarkers and biomarker testing. Were you aware of biomarker testing when you first diagnosed and if so how did you learn more about this process?

Heidi L. Nafman-Onda: Well first of all, my head was spinning that I was told I had lung cancer, and I didn't know really anything about lung cancer other than what I said and my husband's a primary care physician. Pretty much don't smoke, this doesn't happen. My husband reached out to his colleagues to find out what do we need to do next and I'll let you take it from there.

Pierre: Well by colleagues it was colleagues or acquaintances that I knew were subject matter experts in lung cancer, so we sought opinions from thoracic oncologists who then notified us about the importance of biomarker testing. But then, as Heidi will tell you, at the time this was three years ago I think we still needed to advocate for ourselves to understand which biomarkers were going to be drawn, were they going to go the lab, there were some difficulties in that sense. But I can't stress enough seeking the opinion of experts in the field I think particularly in lung cancer it's appropriate, if possible, to get the second opinions particularly from thoracic oncologists.

Heidi L. Nafman-Onda: As a patient I was just terrified and I just wanted to get started right away. What I'd learned is you need to find out this information, like you were saying Doctor Borghaei, for being able to target something that might be there and you don't want to rush into the wrong treatment. So that's an agonizing wait those extra weeks but it's very important to know you're getting off to the right start. In my case though we were told where specifically to send the tissue and it didn't happen. I mean it went just for basic testing based on what there were FDA approved targeted treatments for already. So I didn't get the whole comprehensive next generation sequencing done. I had no PD-L1 and I was inoperable stage three so I had chemoradiation and a year of immunotherapy and I've been no evidence of disease for it'll be two years in January since [00:24:00] I finished treatment but I still feel like there's this unknown about do I have some sort of targetable mutation and it just feels like unfinished business. And it always will. I mean, having cancer there's always this lurking around and when will it show up is the question. So education about biomarker testing is so important and to get to those patients and some sort of readable language for laypeople to be able to understand I think would be very helpful.

Dr. Kenneth Rosenzweig: Ryan if I could just-

Ryan McDonald: Yes go ahead.

Dr. Kenneth Rosenzweig: So just another point is the therapies are changing all the time so if a patient is told they have a certain biomarker years ago, the doctor might not remember that because a lot of that is discussed at the initial consultation. Doctors are obviously very well-meaning but might not remember that detail four or five years later. It might have significant implications, actually obviously Doctor Borghaei is more of an expert on this but a patient who might have had a specific mutation called a KRAS mutation six years ago would have been told oh there's no therapy for that and now there's a certain subset of KRAS where there might be effective therapies. I think a patient should be an advocate for themselves if there's a treatment decision being made, oh can you look back at my biomarkers or if hopefully this doesn't happen or if there's a new decision can we get a biopsy of it so we know what's going on it and maybe there's something that can be attacked because the state of the art in 2021 is much different than 2016 and worlds different from 2011. Things are changing that quickly.

Ryan McDonald: OK so kind of as a follow up as you mentioned that with things changing so quickly and things are different in 2011 than they are today. Say you had that biomarker test a few years ago, does it make sense to get another test or like you said do you just ask you physician hey can we look back at my results to see if there's something targetable now?

Dr. Kenneth Rosenzweig: Hos, I think that's for you.

Dr. Hossein Borghaei: OK so I am personally in favor of always repeating the test and making sure nothing has changed but for a lot of these genetic alterations to be honest with you, there's very little evidence that over time with treatment or anything like that, the genetic alterations are going to go away. So if the KRAS or the particular KRAS mutation that we're talking about was present three or four years ago regardless of what has happened in between as far as I know, there's very [00:27:00] little to tell us that that's going to disappear all of a sudden. However the importance of all of this is that just as the practices changed and KRAS wasn't targetable before but now a subset is, molecular testing has also changed. Now the more comprehensive testing that we do can give us a little bit more information about the cancer and its genomic alterations and some of these could be important for clinical trial participation or other drug selection. So in my view if somebody has some testing done three or four years ago and now we are unfortunately dealing with recurrent disease I would like to have confirmation and perhaps repeat the molecular testing with a more modern and more comprehensive panels that we use now to make sure that we're covering all the bases. For instance maybe four or five years we wouldn't look for an in track alteration, it's very rare but now we have drugs for it. So if I don't have that information before I kind of want to have it now. So just relying on something that was done several years ago sometimes is not the best option so in my view and in my practice if it's been several years since the last testing and if I know that testing wasn't quite up to what we do now I would like to get the confirmation and repeat everything.

Ryan McDonald: OK thank you and one question Heidi, someone may have joined the discussion a little late. Can you reiterate or remind the audience some people have been asking what diagnosis or stage you were diagnosed with.

Heidi L. Nafman-Onda: So I was diagnosed with stage IIIA adenocarcinoma of the lung, inoperable because of lymph nodes in my mediastinum. I had one in one station and the other one in another station so that took me off the surgical candidate list. I then had chemoradiation, three cycles of Cisplatin and pemetrexed or Alimta is also another name for it and then I had 30 radiation treatments at the same time and after that was complete I had a year of immunotherapy every other week for a year.

Ryan McDonald: OK thank you and to remind everyone out there again to use that opportunity. There is the Q and A box on your screen so please continue to filter those in. We're going through those and making sure we can get to as many as possible. Now kind of moving ahead as we've been talking about biomarker testing and using that kind of as personalized treatment decisions, there's this topic of precision medicine. So Doctor Borghaei using some examples can you kind of explain to the audience what precision medicine is and how it works to treat lung cancer?

Dr. Hossein Borghaei: Sure I'd be happy to. By the way I did get a sneak peek of one question that came out and I think we should address this. The question was, is tumor [00:30:00]tissue the only way to define marker testing and the answer is no. Liquid biopsy panels have become very popular and very accurate and we are incorporating those into our evaluation more and more. So no, tissue is not the only way to get the molecular testing so blood-based assays can work. So in my view precision medicine is exactly what we were talking about. It's a way of personalizing delivery of care. So to some extent precision medicine is what we said; let's find out a little bit more about the cancer, let's figure out what it is that this tumor is telling us and let's see if there are specific ways that we can address the cancer itself and a lot of that is done through some of the mechanisms that we've talked about, the molecular testing, finding these genetic alterations and finding the best appropriate therapy for that particular genetic alteration. So the concept to me in my mind, precision medicine is very much similar to this personalized medicine. So why do we call it precision is because again as I described it's a target that goes specifically towards the cancers expressing and therefore it's a more precise way and is a more accurate way of trying to address the tumor. I think to me the concept is very much hand in hand with what we have been just talking about for the past 10, 15 minutes.

Ryan McDonald: So kind of Doctor Rosenzweig one of your focuses is radiation oncology so as we talk about precision medicine and the development of it, how has the way radiation therapy been developed to patients? How has that changed over time as we've focused more on precision medicine?

Dr. Kenneth Rosenzweig: When radiation oncologists talk precision, we kind of mean it literally. We want to precisely aim at the tumor not as much of the sophisticated work that Doctor Borghaei and his colleagues do. So I'm making a little bit of a joke there, but in reality, radiation's still a little bit blunt force. We see a tumor, we give it radiation and then we try not to damage the normal tissue around it but that being said our big challenge is how do we integrate with the amazing things that are happening in medical oncology and systemic therapy. So the successes that we've seen from the new generation of precision medicines, targeted therapies, immunotherapies, has really created a whole new type of patient that we're seeing where they have minimal disease, where someone's doing very well for a long period of time despite the tumor having spread and we have to tailor our radiation around the systemic therapy to try to help out, add to the quality of patients' lives and add to their outcomes without causing an side [00:33:00] effects. So even though we're not directly involved in what we typically talk about as precision therapy has had a drastic effect on our day to day practice. And even this is the concept of let's say what we call, it's kind of a complex word, oligoprogressive disease just for example. That's where Doctor Borghaei might be treating someone and there's one spot that just doesn't seem to be responding but other spots seem to be doing well. Well that's the situation now where very frequently we'll give some very spot radiation just to that area because it's resistant to treatment and take care of that one spot and then send the patient back to continue on systemic therapy. The joke we sometimes use is called whack-a-mole if something ops up we just kind of knock it down like the arcade game and that's been a very successful strategy to use and that's something that's only been possible because of precision therapy and precision medicine.

Ryan McDonald: OK now Heidi kind of getting your perspective on this; you mentioned you were diagnosed a little more than three years ago so in your opinion as a patient, survivor and advocate, how far do you think we've come with treatments that fit under this umbrella?

Heidi L. Nafman-Onda: Well it is amazing to see what's happened just even six months after I was diagnosed that there's just more and more coming out which is so exiting and hopeful. Originally, I was told by a pulmonologist over the phone I have really bad news for you, you have a very grim prognosis, getting your affairs in order would be a good idea and I thought wow I don't even feel sick. I didn't have any symptoms. How could this be happening? Then I found out I was inoperable. I had one treatment option, one, I mean that was it. There was no decisions to make. It was chemoradiation and hopefully do well to qualify for the immunotherapy and get it and lucky for me it worked really well. I had an IMRT radiation it was very precise at the same time and we literally watched seven days so at the seventh radiation treatment my radiation oncologist wanted to show me the image and it was a third smaller. It was just amazing to watch this melt away through the course of the 30 treatments that I had and then to see what's happened post-immunotherapy as well. So I was scanned every three months and then they wanted to stretch it out to six and we compromised and went to four and then to five and now I'm on the six month schedule. There's no evidence of disease at this point and again I'm cautiously optimistic and I'm very hopeful and I also know that if this failed now there are other things [00:36:00]. There's also more extensive testing that however a patient can make sure their tumor goes to the right lab and get more extensive testing and blood biopsy. I mean three years ago they were saying well we're getting close with that and now it seems to be a more reliable and accessible alternative or in addition to, if people need.

Ryan McDonald: OK and Pierre kind of on your side of things as a trained primary care physician seeing what Heidi went through in the past couple years, what's your opinion on the treatment landscape or at least precision medicine over the past couple years in lung cancer?

Pierre: I mean one of my goals is to make sure that primary care physicians, there are a couple myths that have to be dispelled and that is therapeutic nihilism about lung cancer treatment. We are seeing people with advanced stages even incurable stage or stage four that are living for years and so I think the first thing to do is to ensure that if they have any patients who were diagnosed with lung cancer, that they ensure that those patients get to centers and oncologists that are familiar with the disease that have at least seen the volume of the disease and just be more hopeful about it. As Heidi said we are optimistic we have hope but we're realists. Lung cancer is obviously a very lethal disease, it's severe, but there are treatments, there are new developments and the physicians on this call and attest to, there are more in the pipeline. So the point is get to people who know how to treat this disease and retain some hope that there's things that can be done at any stage.

Heidi L. Nafman-Onda: I was told four to six months and here I am three years later so there is hope.

Ryan McDonald: Yes as you mentioned there have been people asking kind of about that throughout the Q and A and asking you Heidi about your journey so thank you for updating them. And everyone watching keep filtering your question in. We will do our best to get to as many as possible. Now as we kind of get into the second half of this conversation, one thing that we'd like to talk about is advocacy and the role that advocacy plays in lung cancer. We talked a little but about it earlier about being your own advocate. So Heidi you founded the White Ribbon Project a little more than a year ago. So can you talk about why you decided to start the project and what being a patient advocate has meant for your journey?

Heidi L. Nafman-Onda: Sure I never decided to start a project it just kind of happened. It was a reaction to just [00:39:00] feeling so frustrated by approaching cancer centers, not only me but other advocates across the country, and asking them what do you plan to do for lung cancer awareness month in November. This was months ahead of time and we were either ignored or dismissed until the final straw for me was just pure humiliation with references to doctors wearing white coats and they're being white lights in parking lots and I just had a meltdown. I was very upset and I asked Pierre to please make me a big white ribbon and I asked it to be in wood because I knew that he could woodcraft and I also knew, it's kind of morbid, it could last longer than me and that could stay on the door and he could still continue to advocate and educate and raise awareness for lung cancer. What started out as one white ribbon I took a picture of that and I put it on a private Facebook page for advocates here in Colorado to say look we can do something. We can start at home we're not powerless. We can start educating our own community. Look at the tree that I tied a ribbon around and my mailbox and what I got back was well what's on the door, that's really cool. It was screaming lung cancer awareness on it. Pierre said, well I'm happy to make some more. We would leave them on our front porch and people would come and pick them up because of Covid and we were all afraid to meet in person. What I saw happening then was just amazing. People were doing what they wanted to do with the ribbon, take pictures put them on social media and no one looked ashamed in those pictures. I thought wow could this be what we need to help crack the stigma. People are now ready to stand up, tell their stories and humanize this disease and demand care. I mean this is the number one cancer killer. Why does it have the least amount of awareness it there? We can change that. It was changed in the breast cancer community and the HIV/AIDS community, people stood up, told their stories, humanized this and when people understood that anybody could get these diseases they wanted these diseases to be funded and curable. This is the same model and I feel like I have a rowing army around me of people all over the country and now global. We're in 26 countries now with the help of the industry helping us get them there. I think it's very hopeful. We just need to talk. We need to talk about this disease. The time is now.

Ryan McDonald: Pierre, as Heidi alluded to, you created that original white ribbon. So as you've been alongside Heidi with her journey, how would you advise other caregivers or loved ones to become an advocate alongside that person who is going through cancer treatment, diagnosis, and reassure them that it's important to be there.

Pierre: Right, well I think my primary [00:42:00] goal initially was just to find a way that I could support Heidi. The irony was that I'm a physician but I was a primary care physician, so I certainly couldn't treat Heidi, I didn't have the skill set, so I had to find a way. I simply asked her, "What can I do to help you?" She had different coping skills - mechanism than I did, so frankly, that's what she told me. She said, "You can support me by making these white ribbons and supporting me as I become an advocate." So for me, advocacy came initially as I desire to support her. But I've found that now, it's a way for me to somehow participate as a caregiver. I don't have lung cancer but what can I do to help the community? And again, that doesn't mean that everybody has to be an advocate. It just means for me that is something that I choose that helps me, helps my wife and hopefully helps others. And I look at my own skill set, I want to try to reach primary care physicians low hanging free to screening. I believe the doctors can confirm screening rates for lung cancer for eligible patients is below 10% nationally. I think some states are 1%, other states higher, and it's clearly disease that if caught early, it's curable. Stage I has, I believe, at least non-small cell, above 90% cure rates. So, that's my goal.

Ryan McDonald: OK.

Heidi Nafman-Onda: And I want people to understand there's a range of advocacy. You don't have to do what we've done and jump in with both feet. You can put the ribbon on the door and if someone comes to the door, start a conversation. Or you can go to Capitol Hill, anything, talking about the disease is advocacy.

Ryan McDonald: OK. And Dr. Rosenzweig, when the essay in which you were nominated in, it highlighted you, yourself, various ones of community service that you participated in. So looking at that aspect of things, why do you think it's important for a healthcare providers out there or as kind of Pierre, too, maybe some will not necessarily directly attached to lung cancer to become an advocate for others.

Kenneth Rosenzweig: So I think it's very important for physicians to get involved in their community and to try to become part of just the general conversation that's happening. And I took it a little bit further than most people do. I'm serving as a councilman in my town, and obviously, that's not for everyone and it's admittedly a little bit whacky on my part, but I enjoy it. But, we've seen, just even in the past two years, just when there are conversations about science, even though [00:45:00] I'm not the physician for my town, actually, we have someone in that role, but just there are issues of science and statistics that we have to discuss, and it's good to have someone part of the conversation who's used to dealing with that all day, even if it's a little bit outside of their field knowing what things that are statistically significant, what makes sense, what doesn't make sense. Now, of course, we're going to be working with public health experts and your municipal experts and as such, but just - it's never bad to have well rounded people as part of the discussion going on. And also, to much more general humanistic level, the physician-patient relationship is a very hierarchical one. I think it's good for physicians to get out in the community and be more on eye-to-eye with people or even kneading other people's health, as it just gives us different perspective that we can take back into the clinic. I think my - the work that I've done in my community and working with rotary in other organizations has made me a better physician. And I'd like to think that has helped in my growth and in my clinical practice.

Ryan McDonald: OK. And Dr. Borghaei, as we talk about advocacy, we can't forget about cancer research. So, can you speak to how important it is for advocacy to advance cancer research and what is being studied currently?

Hossein Borghaei: Sure, I'd be happy to, but I can't let this one go without a comment. Dr. Rosenzweig, you're my hero. I - this is wonderful how involved you are in your community. I don't think there's anything whacky about being a councilman for your town, I don't think I would ever have the courage to run for something like that, but I'm glad to see that there are physicians would get this involved in the community. And I'm frankly, I have to take some tips from you, I think, about how I can be a little more involved in my community. So thank you for bringing that up, I think that's just a beautiful thing that you're doing, so -

Kenneth Rosenzweig: Thank you, to have you say that means so much, because you've helped so many people throughout the world, so thank you, thank you.

Hossein Borghaei: I mean that, it really is. I think we have to be able to get into our communities and talk about this really important issue. So I'm going to make some changes based on what you said. So let's go to research. So why is advocacy important? Just as Heidi said, if we don't talk about the disease, if we don't go out and say, "Hey, there are people who are suffering from this. And this is the number one killer of men and women, when it comes to cancer mortality." And if we don't do these, [00:48:00] then the idea of finding a cure for this disease or better treatment options for this disease is never going to be advanced. The best example we have is our colleagues in the breast cancer world, how the advocacy really made this an important component of a national dialogue that we have about cancer and cancer care. And along with that came research funding, not just from the NCI and the US government, which has a fantastic job of trying to fund as much research as possible. But also, bring in foundations, individuals, people outside of the government to actually put effort behind raising money to find a better treatment option for a cancer that had very bad outcomes for the most part. Luckily, we made a lot of progress, but in the world of lung cancer, we never did that. I don't think we really ever had an effect, that advocacy voice, in lung cancer up until recently. And that's because of people like Heidi who get involved because they realized that what we had five or 10 years ago was just inadequate. And there are many people who are suffering from this, and therefore, better treatment options are needed. So advocacy, fund raising, supporting research, contacting your congressmen, your senator, and saying you need more funding for this disease to be able to improve the cure rate is of paramount significance. And without it, I don't really think we would have made as much progress as we have made so far. And you can tell very easily by everything that you see that we still have a lot of work to do. So I think the importance of advocacy is even more apparent now than it was just a few years ago. So all of these funds that are raised through various mechanism's going to research and I think it's through a research that we have a better understanding of the disease. And that better understanding translates into better treatment options.

Heidi Nafman-Onda: Can I just have a quick shout out to thank both of you -

Ryan McDonald: Yes.

Heidi Nafman-Onda: Very, very much for advocating, because that is the key, that's the recipe that we have in the breast cancer community. The doctors started advocating too. When we stand up and tell our stories and make it human, and we say that anyone with lungs can get lung cancer, and then you validate that, that we're not just angry people trying to scare people. It's no, this is a fact. Anyone with lungs can get lung cancer if they had a smoking history. Anyone with lungs can get lung cancer if they didn't have a smoking history. And to know that this is the number one cancer killer and there's no public health messaging, nothing. There's nothing, a national campaign, there's nothing about the other risk factors. I didn't know about radon until I got diagnosed and my son who's an environmental engineer asked me, "What's the radon level in the house?" And I was like, "What are you talking [00:51:00] about?" And then, we took those steps and found it, maybe that's what caused this, I don't know, maybe secondhand smoke. I grew up, I'm 58 years old, my father smoked, smoked in the house, he smoked in the car, smoked in the airplane. And 18 years of inhaling secondhand smoke does not qualify me to get screened, but 20 years of smoking a packet. There's just so much wrong out there that we can right. And as a team, I think of the survivors and caregivers and the medical community coming together, we can become like other cancers and be well funded and do the right thing.

Ryan McDonald: OK.

Heidi Nafman-Onda: So thank you.

Ryan McDonald: Yes, thank you, thank you. And as we kind of get close to wrapping up here, we'll open it to the audience for more questions. So if you have another question or you want something answered, please put it in the Q and A box on your screen. And I'll kind of start first, and Heidi, you did a good transition to it, but you mentioned exposure to secondhand smoke, radon. Doctors, Borghaei and Rosenzweig, how does lung cancer screening work in those individuals? Because it doesn't seem like there's a tried and true approach. Can those individuals get screened or how does that work?

Hossein Borghaei: Unfortunately, right now, the answer is no. The guidelines do not allow that. If you want to follow the national guidelines and go based on the evidence as we generated, those are individuals who are not included in the lung cancer screening program or studies that we did in the US. And therefore, the guidelines do not include radon exposure and secondhand smoking as pre-requisites for a lung cancer screening. That doesn't mean that it can't change, we live in a world that having evidence and generating the evidence would be important to change people's minds, especially the regulators. And therefore, concentrating on getting these kinds of studies done, I think, would be important. It's not an easy task identifying what radon level is important, how many years of exposure's needed, how to establish those kinds of benchmarks, it's going to be a little bit more difficult. I'm not the appropriate person honestly to talk a lot about this. You need an epidemiologist with the expertise in this area to answer these more detailed questions. I don't really feel adequate to respond to all of these. But the bottom line is that if you want to have an official screening recommendation, we need to generate evidence that. And everybody that we're thinking about at being at high risk, we need to be able to show that the intervention, which, right now, [00:54:00] again, it's a simple CAT scan can, in fact, lead to an early detection. And that evidence doesn't exist right now in a wider population. So, we have to put our efforts into conducting those trials, and proving that it can be effective, but as it stands right now, we just don't have that option.

Kenneth Rosenzweig: Yeah, and you can imagine just how challenging it is to quantify secondhand smoke just in the population. And so just another degree of separation between what we're seeing and what's out there. And also, I would - I'd also just wanted people to get a CAT scan for screening. There's almost - there's an abnormality in probably over half of the screening CAT scans that are obtained but only a very, very, very small fraction of those are actually cancer, they just - little blebs in the lung or little - almost like a pimple on the skin. So you have to be very careful because you can get led down a road where it's a lot of anxiety, a lot of tests, and it's really not for any clinical significance.

Pierre: Yeah, I'll jump in. Just given my experience as a primary care physician. If you go on the CDC site of the EPA, and you're told, "Look, if you have high radon levels, definitely get mitigated. Or if you have these other risk factors and you're concerned about lung cancer, go talk to your primary care physician." That's the answer. And so these people do come, these people who don't qualify for current screening guidelines. They come and they say, "I'm supposed to come to you. What am I supposed to do?" And my position as a primary care physician, I'm not, again, I'm not offering medical advice, I'm just telling you. My job was to go through a shared decision making process with the patient. My job was to tell them, "Correct, you don't currently qualify for lung cancer screening. But yes, you have these other risk factors. That, we have." The guidelines definitely - you will not get reimbursed, these patients cannot get the screening CT scan paid as a screening test. But, they don't prohibit a discussion with a primary care physician or another physician about, "OK, yeah, we're not dealing with a population. We're dealing with an individual." And that's the same thing with, I think, mesothelioma risk with asbestos exposure or you're a first responder, firefighter, many of these people are either being studied in trials or they have their own advocacy groups to sort of look at perhaps, what I would say, tailored approach to how to manage these risks, to deal with them. [00:57:00] So if you have these other risks, my advice to you is talk to your primary care physician and just explain to them what your concerns are, understand that, yes, you probably don't qualify for the standard screening, but you can at least begin the conversation.

Ryan McDonald: Now, Heidi, I want to ask you a question. It was a little earlier during the discussion. Someone mentioned they were also a non-smoker adenocarcinoma stage I, they had an operation, removed part of the lobe. But ever since they've had some alarming CT scans, but then the next one is fine. Did you ever find yourself with this back and forth? And if so, how did you kind of go about dealing with that?

Heidi Nafman-Onda: Yeah, not so much with me, fortunately. But last October, I had an image come back that looked a little denser. And so my physicians ordered a PET scan and nothing really lit up. And so, then they followed it again, and now have put me on six months. But yeah, dealing with the anxiety of what could it be now? And is it back? And is it back in the same exact place? Is that even common? Would it more likely be somewhere else? You go through all of those emotions, but it was important that I have that followed up and that's what we did. And knew that if there was something new, we were going to, again, have more advanced biomarker test and done.

Ryan McDonald: OK. Now, there's - also, I'm looking here, there's been several questions kind of about this transition from non-small cell to small cell lung cancer and people having questions about that. So Dr. Borghaei or Rosenzweig, is there anything you can kind of address about that and how common that is? And if it changes, does it affect treatment?

Hossein Borghaei: Sure, so there is at least one group of patients I've been watching a little bit more carefully, those with EGFR mutations. There are reports, especially when we were using sort of earlier targeted therapies for this patient population, what we call 'first and second generation targeted drugs'. There were several reports and then institutional confirmation of various cancer centers around the country that a certain portion of patients with these EGFR mutated lung cancer's on active treatment with targeted therapies can, in fact, have evidence of what has been labeled as transformation into small cell lung cancer. The biology is not really all that clear to me. There are labs, again, investigating this, trying to understand how this transformation can happen. But it has been reported. [01:00:00] I think, luckily, with the more modern third generation oral agents that we're using for this disease, the percentage of patients who can be identified as having this transformation is less. Nonetheless, this is one process, one disease where, at least in my clinic, if I have someone with an EGFR mutated lung cancer with evidence of some disease progression on a CAT scan, I would like to have tissue confirmation that this is not a small cell transformation, because unfortunately, that's really the only way to right now to physically look at the tissue under the microscope and say if it is small cell or not. So the biology is, again, unknown to me at this point, but once the diagnosis is made, we tend to follow the common protocols that we have for management of patients with small cell lung cancer, that involves not so much targeted therapy but the more chemotherapy, maybe some radiation or combination of chemotherapy and immunotherapy.

Ryan McDonald: OK. Now, unfortunately, we're pretty much out of time, but I'd like to kind of take this opportunity to go around one more time to the panelists for their last parting shots or anything they'd like to mention that we didn't perhaps get a chance to discuss. So Dr. Rosenzweig, I'll start things off with you.

Kenneth Rosenzweig: Yeah, again, thank you for the opportunity to participate in this, and another chance to be with Heidi and Hossein, who I admired so much. I think the time has gone very quickly talking about this, I still feel we have - we could go another three, four hours and still not hit everything. So I hope this is a continuation of increased advocacy, increased discussion about this. There's still so many questions, so much information that we have to get out there. And we just got to continue.

Ryan McDonald: OK. I think he may have frozen, Doctor.

Kenneth Rosenzweig: In all aspects, and thank you very much again for having me.

Ryan McDonald: OK, thank you. Dr. Borghaei?

Hossein Borghaei: Sure, again, thanks a lot for having us together. And I agree that we could've gone another couple hours talking about all this issue, but we appreciate having the opportunity to talk about all of this. Look, the message is simple. Advocacy's important, funding and improving research in this disease is significant. And we have to do everything that we can to make sure that the progress we've made over the last 10 years would still continue, we have the momentum, we don't want to lose this momentum. So you are out and advocating for yourself or fellow patients who have this diagnosis is really, really important. [01:03:00] And we're here with you as physicians trying to do everything that we can to make sure that the research has been so helpful in providing better quality of life and better treatment options that are continued. So this is a team effort, nobody can do this alone, and we rely on you as physicians to be there and we were there with you every step of the way. So I am hopeful that we will make even more progress in the coming decade or so. And again, I don't think this is going to happen as a one off. Everybody has to be involved and I'm glad to see that advocacy has become such a big part of this diagnosis, because we desperately need it.

Ryan McDonald: OK. Thank you, and lastly, Heidi and Pierre. Would you like to share some parting thoughts?

Heidi Nafman-Onda: Yeah, just to add to that. Yes, research matters. It absolutely matters. And it's all dependent on funding, which is all dependent on awareness. So being that we own the number one spot here, we have the highest prevalence in mortality rate combined here. We're the number one cancer killer. There needs to be much more awareness and gathering as a team here working together, supporting each other and talking about this disease. Again, I have a lot of hope. I saw this happened in breast cancer, I saw it happened in HIV/AIDS, I really don't even want to hear that, "Gosh, because there's the smoking stigma, we can't do this." Yes, we can. Yes, we can. And I'll let you have some parting words.

Pierre: Very, very fast. Just want to thank you for inviting us. Thank all the physicians, the healthcare workers that help treat this disease. And if you're a patient or happen to love someone who has lung cancer, make sure you seek advice and counsel from experts in the field. That's going to be your best resource as well as some national advocacy organizations.

Heidi Nafman-Onda: Yeah, and if we don't have the institutional messaging coming from national, our cancer centers are standing up and they're the subject matter experts. So they are helping us with messaging, so thank you, thank you, both Dr. Rosenzweig and Borghaei. I'm very grateful for your work and for you. Doing the outside advocacy on top of all of this. I know you're very, very busy and it's a hard balance. Your community is grateful to you.

Hossein Borghaei: We're grateful for you.

Kenneth Rosenzweig: Yeah, thank you.

Ryan McDonald: OK, unfortunately, we are out of time. But if you'd like to watch this webinar again, it will be available on the Webinars-On-Demand page of Curetoday.com within the coming days. I want to thank our team of panelists again and the audience for attending and participating today's event. I would also like to thank CURE and sponsor Takeda Oncology for making today’s educational webcast possible. Don’t forget to check your email tomorrow for the survey [01:03:00] to be entered to win a gift card. And if you want to relive the celebration for our lung cancer heroes, please visit the Awards-On-Demand page on Curetoday.com. Thank you to all for joining, as well as our panel, and we’ll see you next time.

Kenneth Rosenzweig: Good night.

Hossein Borghaei: Bye.