Testing is an ever-present part of the journey for lung cancer, helping identify stage, treatment options, progress, and potential recurrence. Testing can also introduce a whole new vocabulary into your life. Don’t let jargon overwhelm you or undermine your grasp of test options and results.
We can help you evolve into an informed lung cancer advocate who understands results and how to use testing as a conduit to the most personalized care.
In this podcast, lung cancer experts Dr. Erin Schenk and Dr. Tejas Patil discuss the role of genetic testing results in lung cancer care—including treatment decisions—and share important advice for self-advocacy.
About the Guests:
Dr. Tejas Patil is an academic thoracic oncologist at the University of Colorado Cancer Center focused on targeted therapies and novel biomarkers in lung cancer. Learn more about Dr. Patil, here: https://www.cudoctors.com/Find_A_Doctor/Profile/24489.
https://powerfulpatients.org/pen/wp-content/uploads/Genetic-Testing_-How-Could-Results-Impact-Lung-Cancer-Care_.png30003000Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2021-01-27 11:19:342021-04-07 11:35:51Genetic Testing: How Could Results Impact Lung Cancer Care?
So, genetic testing – and in this case the testing of the tumor, not the germline, not the individual – has been very, very crucial. If you go back about 20 years ago, there was a family of drugs called epidermal growth factor receptor inhibitors or EGFR inhibitors.
And the basic science at the time made it look like these would be best combined with chemotherapy in squamous cell carcinoma. And as it turned out, combined with chemotherapy they weren’t very useful. But as single agents, there were these occasional very dramatic results.
So, that came at a time when we were able to evaluate tumor DNA, sequence it with some degree of ease at a reasonable cost. So, there was a discovery of specific mutations, which were targeted by these drugs. So, it was sort of interesting in that it was the clinical observation that led to the discoveries in biology, not really the other way around.
But then that in turn resulted in looking for other mutations, which were found, and then the development of other drugs – in some cases, the repurposing of other drugs for those. And now we have about a half a dozen very validated targets, each one of which in a small slice of the population – between say 1 percent and 5 percent – 10 percent of the lung cancer population – but these – if the patient has within their cancer that particular mutation, these are drugs that are 80 percent-plus effective and frequently can be administered with relatively little toxicity.
And usually they’ll give them benefit for one-plus years or more. So, that’s been an example of progress there.
https://powerfulpatients.org/pen/wp-content/uploads/How-Genetic-Testing-Has-Revolutionized-Lung-Cancer-Treatment-1.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-12-12 15:27:552020-04-07 14:28:37How Genetic Testing Has Revolutionized Lung Cancer Treatment
Let’s start with an overview of lung cancer’s research. Can you tell us a little bit about the field right now?
So, I think the field has been remarkable over the last few years. There’s been more progress, more drugs, more things that have happened in the last five years than probably the prior 50. It’s been an amazing time both for developments in microbiology as well as in immunotherapy of the disease, which is exciting for all concerned.
For patient’s, of course – really a promise of longer, better lives, even cures where we previously did not see any in advanced disease. For the scientists – an amazing amount of new information. And for clinicians and clinical investigators – just almost too many questions for us to answer.
It sounds like the field is really advancing quickly. What do you attribute that to?
Well, you know, I think there are a number of things. Everybody always talks about breakthroughs, but breakthroughs really happen after decades of other work. And what’s happening now is really a result of many, many years of different types of work. There were our colleagues in immunology who built this area of cancer immunology for many years – I have to say with much skepticism from many, myself included.
The advances in molecular biology – our abilities to do things with tumors to determine genetics at a rate and a pace and a cost that was previously unimaginable. All of these things have developed in the last few years but really are a result of the decades of work before that. If you look at immunotherapy – probably one of our biggest areas of progress – the roots of that are a century old. So, nothing’s really new. It’s just now we have the technology and the ability to really use it. And then I would also say that we’ve created the infrastructure that lets us test this – the people who have done the studies, the endpoints for the studies, the expertise in doing clinical trials – that also was there for decades, and we frequently were kind of ridiculed at times.
Oh, you’re just testing this drug against that drug, but the reality is is it was those incremental advances. It was the ability to know the endpoints, to refine the populations, to develop the infrastructure that allowed for all of this to happen.
Dr. Edelman, as a researcher in the field, tell us why you’re hopeful about lung cancer research.
Well, I think that we have gone from trials with very small incremental improvements and frequently a very slow degree of progress where if we had a positive study every two or three years, we were thrilled – to the point where we’ve had an avalanche of positive studies. I don’t think my younger colleagues know what a negative trial looks like anymore. Even our negative trials are pretty impressive. We’ve had studies where an immunotherapy agent was compared with chemotherapy. And it was designed to show that the drug would be better.
And it was just as good, and that was a negative study. That’s the correct interpretation, but still I would point out that that’s quite remarkable because these other drugs had taken us 25-30 years to develop. And now we have another drug with a very different mechanism of action that’s as good potentially. That’s impressive. I think we’ve just had an amazing degree of progress in the last few years. We have far more drugs. We understand far more about the disease – the technology at every point from diagnosis to assessment of response to the ability to evaluate better what we’re not doing well. So, our studies now frequently have biopsies before, during, and after treatment in a way of trying to figure out why is stuff working or not working.
Back in 2006 or so, I proposed a study. We ended up doing it, but it took two or three years because we were requiring a biopsy result – actually, not even a new biopsy but just an archived specimen from the original biopsy to determine eligibility, and there was strong pushback that we would never be able to do that. And now, we routinely are getting biopsies and re-biopsying, and that’s over a brief period of time.
So, we’re getting to get better understanding of the disease, and why stuff works and doesn’t work. And I think that that’s why our progress will accelerate. And I would again emphasize progress only happens – real progress – only through clinical trials. We’ve cured a lot of mice for many decades. A mouse is not a person. You actually have to do the studies patient by patient, and I think we are making substantial progress. We almost have too many things to test right now.
https://powerfulpatients.org/pen/wp-content/uploads/Could-Advances-in-Lung-Cancer-Research-Benefit-You_-1.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-12-12 15:20:142020-02-10 10:03:14Could Advances in Lung Cancer Research Benefit You?
As patients, we normally rely on our doctors to tell us which tests and medications to take for the betterment of our health. Rarely do we question them since they know a whole lot more than most of us when it comes to medical ailments and overall health. However, that doesn’t mean you can’t find out more about the various suggestions doctors make.
If you have an ailment in the body and your doctor finds it hard to determine exactly what it is, they will likely ask you to get either a CT scan or MRI done. The tests are used to provide a detailed view of your internal body to help determine the ailment. We breakdown the two for your better understanding:
CT scans provide imaging using x-rays at different angles. This scan is more in-depth as compared to an x-ray. X-ray tests use a beam of radiation from a set angle and display the image. Since a CT scan uses a series of radiation beams at different angles, it slices the same image up, giving a 3D view so doctors can understand the ailment better. With the help of a computer, an image is produced. CT scans can help determine ailments such as cancer, bone injuries, and chest and lung ailments.
Magnetic resonance imaging (MRI) uses a magnetic field instead of radiation and provides a more detailed image of the body which also includes soft tissues along with the internal body. It is used to help diagnose the following:
Damaged blood vessels
Spinal cord injury
It can also be used to ensure that various organs are healthy.
Both methods are noninvasive and rely on heavy technology. But when it comes to CT scans, more and more hospitals are opting for mobile CT scanners, which make it easier for them to manage.
Getting Ready for the Test
Preparing for CT Scan and MRI is slightly different. With CT scans, your doctor may recommend you take a contest dye. The dye helps highlight the scanned region more and is generally consumed when scanning the abdomen. It is important to notify your doctor if you have any allergies because you may react to the dye. If you’ve previously had reactions to prednisone (a steroid), iodine, or seafood then the doctor should be immediately notified. Other than that, the doctor may ask you not to drink or eat several hours before the test.
For an MRI, the one thing you need to make sure is that you are not wearing anything that can be detected by magnets. This means, no jewelry, watches, hearing aids, glasses, and other items that may have a metal can be worn during the test. In some cases, a gadolinium dye may be recommended which is injected into the hand or arm. The dye highlights certain details in the imaging and rarely results in any type of reaction. The test can be lengthy for some as it takes anywhere from 30-45 minutes, so if you are claustrophobic, you may want to discuss that with your doctor since you are required to stay in a closed space for that period.
CT Scan: You will be asked to put on a robe and remove jewelry and other metal objects so they don’t have any impact on the image produced. The scanner itself is a doughnut-shaped machine and you lie on a flat table in the middle. The table starts to move back and forth and x-ray tubes fitted into the scanner send out beams and different angles. They pass through your body to the other end of the scanner. The test is painless but make sure you are comfortable because you will be asked to stay still as the scan is going on.
MRI: The MRI machine is a long narrow tube that is open at both ends. Like in a CT scan, you lie down on a flat movable table that slides into the tube. As you slide in, the table stops at the specific part of the body being examined and a magnetic field is created and radio waves are directed to the body. The machine does make tapping and thumping noises, so the technician will likely offer earplugs to block it out.
Understanding the Test Result
After getting either a CT scan or MRI done, you will need to consult your doctor. Unless you are a trained doctor, the images will make little to no sense to you. You will need to consult a radiologist that can explain the results to you. In case of an ailment, they will usually recommend you consult a specialist, depending on the ailment, that can assist you further.
As a patient, it is important for you to understand the tests and treatment doctors recommend. Most of the time, you can consult your doctor and they will be more than willing to give you the information you need. Knowing makes it easier for you to undergo the tests and treatments with a little more ease.
Scott has been working in the radiology field for over 30 years. He finds the biological phenomenons found in humankind fascinating and appreciates the incredible use that diagnostic imagery has to save lives. Other than acting as the President for Catalina Imaging, Scott enjoys spreading the word on new insights and breakthroughs in the radiology field, specifically the impact that mobile imaging has for patient care.
https://powerfulpatients.org/pen/wp-content/uploads/What-Patients-Should-Know-About-CT-Scans-and-MRIs.png600600Scott Ronkhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngScott Ronk2019-10-28 13:18:052019-10-28 13:18:05What Patients Should Know About CT Scans and MRIs
A lobectomy is a surgical procedure where an entire lobe of your lung is removed for a variety of reasons that may include a lung cancer diagnosis, infection, COPD or benign tumors.
Lung Function Tests
Lung function tests (or pulmonary function tests) include a variety of tests that check how well the lungs work.
Lung transplantation is a treatment option for some lung disease patients. A lung transplant is a very serious procedure and it is important to learn as much as you can about the process if you think it might be right for you.
Lung Volume Reduction Surgery
Lung volume reduction surgery (LVRS) is a procedure designed to help you breathe easier when your lungs have been damaged by severe COPD.
Methacholine Challenge Test
Methacholine challenge test (also known as bronchoprovocation test) is performed to evaluate how “reactive” or “responsive” your lungs are to things in the environment.
Minimally Invasive Thoracic Surgery
Minimally invasive thoracic surgery is a way of performing surgery in the chest through small incisions, without making large cuts or incisions in the body, and does not require spreading apart of the ribs.
Oxygen therapy is a treatment that provides you with supplemental oxygen.
Supporting Someone on Oxygen
It can be a big adjustment for someone to start using oxygen therapy. The support of a friend or loved one can make the transition much easier. Read what real patients and caregivers have to say about supporting someone on oxygen.
Traveling with Oxygen
It may take more planning, but many people successfully travel while using oxygen therapy. Learn some key points to consider before you travel with oxygen.
Using Oxygen at Home
It is easy to get started using oxygen therapy at home. Make sure you read the instructions from your oxygen company and then follow these steps to get started.
Using Oxygen Safely
Oxygen therapy can be an important part of treatment for people living with lung disease. It is important to learn how to use oxygen therapy safely so you can protect yourself and those around you from harm.
The pulse oximeter, or Pulse Ox, is an electronic device that measures the saturation of oxygen carried in your red blood cells.
The Basics of Pulmonary Rehabilitation
Pulmonary rehabilitation (PR/Rehab) can help people with chronic lung disease improve lung function, reduce symptoms and improve quality of life through exercise and education.
A new year means new programs! We’d like to introduce to A Conversation With, which is a collection of conversations with healthcare leaders, including patient advocates and various healthcare professionals, to take a closer look at the topics and issues important to empowered patients, care givers, and their families.
In our first segment of A Conversation With, we spoke with Dr. Jo-Anne Vergilio the Senior Director in Pathology; Senior Associate Medical Director in Laboratory Operations, and Senior Hematopathologist at Foundation Medicine, Inc. Dr. Vergilio discusses what patients should know about biomarker testing and answers the following questions:
How does biomarker testing work?
How does biomarker testing help a cancer patient’s doctor with determining next steps in treatment?
When in a patient’s course of treatment would they want to get biomarker testing?
What is the difference between different kinds of biomarker tests?
Single marker vs. comprehensive
Tumor vs. liquid
What does it mean for a biomarker test to be FDA-approved?
If a doctor isn’t offering biomarker testing, what are some things that patients might say to their doctor?
https://powerfulpatients.org/pen/wp-content/uploads/A-conversation-with.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2019-01-28 17:16:022019-09-02 12:32:04A Conversation With Dr. Jo-Anne Vergilio
“Every three to four months I get a wake-up call that my life has taken an unexpected turn. Believe me, there are daily reminders of how different I am now; but scan time is big time scary time, mentally. It takes living with cancer to yet another level of heighten sense of mortality and anxiety. So MANY thoughts and what ifs course through my brain. SO hard to shut it off.” – Katie Edick, METASTATIC AND MAKARIOS.
It may not be officially part of the medical lexicon yet, but “scanxiety” is no less real for those of us who have experienced a diagnosis of cancer. Pamela Katz Ressler, RN, MS, HNB-BC, founder of Stress Resources, describes scanxiety as “the anxiety, worry and fear that accompanies the waiting period before and after a medical test.” She says it is a common side effect of modern medicine. “As our medical system has become more technologically adept at measuring indicators of disease so too has our anxiety” she says. “Scanxiety is an unintended consequence of medical testing, yet it is one that is rarely discussed by medical professionals with patients.”
Writing in Time magazine in 2011, lung cancer survivor, Bruce Feiler, characterized scans as “my regular date with my digital destiny. Scanxiety, he wrote, arises from the feeling of “emotional roulette wheels that spin us around for a few days and spit us out the other side. Land on red, we’re in for another trip to Cancerland; land on black, we have a few more months of freedom.”
One of the most common emotional and psychological responses to the experience of cancer is anxiety. Cancer is a stressful experience and normal anxiety reactions present at different points along the cancer journey. Did you know that the word anxiety comes from the Latin word anxius, which means worry of an unknown event? Worry, in turn comes from the Anglo-Saxon word “to strangle” or “to choke” – which may very well convey the feeling we have right before a scan, or whilst waiting for its results.
Anxiety is a natural human response that serves a biological purpose – the body’s physical “fight or flight” (also known as the stress response) reaction to a perceived threat. Symptoms vary for each person. You may experience a racing or pounding heart, tightness in the chest, shortness of breath, dizziness, headaches, upset tummy, sweating or tense muscles. Alongside these physical manifestations, you may feel irritable, angry or apprehensive and constantly on the alert for signs of danger. All of these signs indicate that sympathetic arousal of our nervous system has been activated, preparing us to stand our ground and fight or take flight and run away from danger.
Scanxiety, points out Katz Ressler, can be intense and may mimic symptoms of Post-traumatic stress disorder (PTSD). PTSD is an extreme anxiety disorder that can occur in the aftermath of a traumatic or life-threatening event. Symptoms of PTSD include re-experiencing the trauma through intrusive distressing recollections of the event, flashbacks, and nightmares. As Susan Zager, founder of the non-profit organization, Advocates for Breast Cancer (A4BC), points out “MRIs are very noisy – and because my recurrence was found through an MRI biopsy, I have many memories of scary results from that test.”
It’s been over ten years since I was diagnosed with breast cancer and while my scans are less frequent these days, the anxiety never fully goes away. As blogger and patient advocate, Stacey Tinianov writes, “This is reality even after almost five years with no evidence of disease. I’m not a worrier or a hypochondriac. I’m just a woman whose body once betrayed her by growing a mass of rouge cells that, if left unchecked, have the potential to bring down the house.”
If you are facing an upcoming scan and feeling anxious about it, you may find the following tips helpful. Based on my own experience and the experience of others in the cancer community, these tips are some of the ways in which we have learned to cope with scanxiety.
1. Identify your body’s stress response
How we experience stress is individual to each of us. Learning to tune into what happens in your body when you perceive a stressful situation is the first step in understanding your individual stress response. Does your jaw clench? Is your breath shallow? Are your muscles tense? When you become more aware of your physical response to stress, it will help regulate the tension when it does occur.
2. Pay attention to your breathing
When we are stressed we tend to breathe more shallowly. Shallow breathing, which does not allow enough oxygen to enter our bodies, can make us even more anxious. When you feel stressed, practise taking some slow deep abdominal breaths. Deep abdominal breathing slows the heart down and lowers blood pressure. The advantage of focussing on the breath is that it is always there with us. We can turn to it anytime we are feeling anxious.
3. Stay focussed on the present
Focussing on the past or future can increase your anxiety. Katz Ressler recommends staying focused on the present moment as a way to quieten anxious thoughts. “Methods that have proved successful for scanxiety focus on tools of resilience, often based on mindfulness strategies,” she says. “Key in these methods is to focus on the present moment and not on the outcome of a test or scan.” Focusing on each and every breath is an excellent way to begin to increase your awareness of the present moment. If you would like to try some short mindfulness meditations to increase resilience and help decrease anxiety, you will find some on Katz Ressler’s website.
4. Use visualization
By enhancing your relaxation skills, you are can lower the fight or flight response that is often triggered during times of increased anxiety. Visualization involves using mental imagery to achieve a more relaxed state of mind. Similar to daydreaming, visualization is accomplished through the use of your imagination. Karin Sieger who has recently received a diagnosis of cancer for the second time, shares this advice, “I certainly keep my eyes shut when inside the machine; focus on my breathing; remind myself this has a start and finish; and then generally try and go in my mind to a calm meadow and have a snooze. Because for once there is nothing else I can or should do for the next minutes.”
5. Practical coping tips
Karin also points to the claustrophobic feeling of being enclosed in a scanning machine as a contributor to anxiety. Stage IV breast cancer patient, Julia Barnickle recommends an NLP (Neuro Linguistic Programming) process, called the “Fast Phobia Cure” which worked for her. “I still don’t like enclosed spaces,” she says, “but I certainly don’t panic like I used to.” Blogger Margaret Fleming also recommends asking the attendants for any items that can make you more comfortable, such as ear-plugs or a blanket.
6. Break the worry habit
Worry can be a habit and like all habits can be broken. As soon as that worry voice starts in your head, examine it before it takes hold. Ask yourself, will worrying about this help me in any way? Julia writes, “For me, worrying is a choice – as is happiness. In the same way that I choose to be happy, regardless of what happens around me or in my own life, I also choose not to worry about – or fear – what might happen in the future. I tend to believe that things will work out for the best. And besides… what will happen will happen, regardless of whether or not I worry about it – so I don’t see the point of spoiling my enjoyment in the meantime. I prefer to get on with my life.” Jo Taylor, who is living with secondary breast cancer agrees. “I have taken the view that nothing will change the outcome, therefore there’s no point in worrying,” she says.
7. Create an anxiety worry period
Many patients speak about the most anxious period of time being the time you are waiting for scan results. As stage IV blogger and patient advocate, Susan Rahn, writes, “Waiting for the results of any scan that will tell you if the cancer is active and taking up residence in new parts of your body is just as anxiety inducing, if not worse, as the time leading up to and the day of the actual scan.”
You won’t be able to break the worry habit entirely and ignoring anxious thoughts and feelings can sometimes make them worse. It’s still important that you acknowledge your worry but not let it control your life. One tip is to designate one or two 10-minute “worry periods” each day, time to fully focus on your anxiety. The rest of the day is to be designated free of anxiety. When anxious thoughts come into your head during the day, write them down and “postpone” them to your worry period.
8. Take Some Exercise
Exercise is one of the simplest and most effective ways to reduce stress and anxiety –providing a natural outlet for your body when you are exposed to too much adrenaline. Jo Taylor, who runs an Exercise Retreat To Recovery program in the UK, finds that staying physically active is helpful. “I am still very nervous in the time between scan and reporting, “she says, “but throwing myself into work or exercise or anything else I do is helpful.”
Virtually any form of exercise, from aerobics to yoga, can act as a stress reliever. The important thing is to get moving, even if that means just walking around the block. Movement with flow and rhythm can also help calm the body and mind. Katz Ressler recommends gentle yoga and walking meditation as proven ways to decrease the stress response and increase the body’s natural calming mechanism. “Finally, remember”, she says, “while you cannot control the outcome, you can work to control the experience and that starts with building resilience.”
I hope you will find these tips helpful and if you have any other coping tips please feel free to add your advice in the comments below.
A Stanford Medicine X e-Patient scholar, Marie Ennis O’Connor is an internationally recognized keynote speaker, writer, and consultant on global trends in patient engagement, digital health and participatory medicine. A board member of the Patient Empowerment Foundation, a network of people, foundations, organizations and medical institutions dedicated to empowering patients worldwide, Marie’s work is informed by her passion for embedding the patient voice at the heart of healthcare values. She writes about the experience of transitioning from breast cancer patient to advocate on her award-winning blog Journeying Beyond Breast Cancer.
https://powerfulpatients.org/pen/wp-content/uploads/Natural-Body-Scrub150ml-_-5.07oz.png600600Marie Ennis-O'Connorhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngMarie Ennis-O'Connor2018-07-24 16:35:312019-09-02 12:27:32Coping With Scanxiety: Practical Tips from Cancer Patients
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.
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.
Andrew, thank you. I’m glad to be here.
Dr. Kim, welcome to you.
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?
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.
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?
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.
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?
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.
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?
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.
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?
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.
Dr. Crawford, of course you’re doing research as well. Do you agree with this, where we are now and where we’re headed?
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.
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?
Well with, first, let me back up a second to say we’ve been talking mainly about advanced lung cancer.
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.
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?
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.
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.
Am I back?
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.
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.
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.
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?
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.
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?
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.
Okay. Dr. Crawford, any other comment you wanted to make about small cell?
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.
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?
I think you did. You’re a good student.
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.
You had to say that.
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.
Andrew, thank you so much and thanks to all the patients who are joining in today. It’s for you we do all that.
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.
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.
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.
https://powerfulpatients.org/pen/wp-content/uploads/ASCO-Lung-Cancer.png600600Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2018-06-22 17:37:452021-01-23 10:54:04ASCO 2018 Lung Cancer Roundtable
Panel Interview with Emma Shtivelman, PhD, Chief Scientist Cancer Commons, Mary Ellen Hand, RN, BSN, Nurse Coordinator Rush University Medical Center, and Stage 4 Lung Cancer Patient, Mary Williams.
Janet Freeman-Daily (@JFreemanDaily), patient advocate, metastatic lung cancer patient, and co-moderator of #LCSM chat hosts The Conversation about what patients and caregivers can do to get the right treatment and testing for lung cancer. The panel covers a wide variety of topics including the following:
Information needed to make decisions about treatment options
Molecular and genetic testing, and where to go to learn more about them
Targeted therapies, clinical trials, and liquid biopsies
Barriers to getting the right treatment at the right time
Seeking second opinions
What to ask your health care professionals
Check out the full conversation between lung cancer experts below.
https://powerfulpatients.org/pen/wp-content/uploads/2016/07/Screen-Shot-2016-07-04-at-9.51.33-PM.png271481Kara Rayburnhttps://www.powerfulpatients.org/pen/wp-content/uploads/New-Logo-300x126.pngKara Rayburn2016-07-05 02:46:402021-01-18 12:41:24The Conversation: Getting The Right Treatment & Testing For Lung Cancer