Story of Hope by a Determined Lung Cancer Survivor - Jill Feldman

From Family History to Personal Lung Cancer Diagnosis Hello everyone I am Rahul Gosain. And I'm Rohit Gosain, and we are oncology brothers. Over the last year with this platform of oncology brothers, we've shared a lot of data around what is practice changing or reiterating the crunch standard of care so that we can bridge the gap between the community and the academia. But today, we're focusing on the most important aspect of any of these conversations, the center of attention, not just precision medicine, but personalized medicine. And that is the patient that is sitting in front of you. We're so honored to have Jill Feldman, a patient advocate and a person with a cancer diagnosis herself, to share her story, Remind us all the importance of patient centered care and the importance of research that brings hope and new treatment options. Jill, thank you so much for joining us today. Speaker 3 Thank you for having me. I'm honored to be here today and to share my story. Speaker 2 Thank you so much, Jill. Unfortunately, you've had the front seat for this Horror Story starting at an early age with family history of cancer and then being diagnosed yourself after that. If it is OK with you, can you please share a little background of your family history and your personal diagnosis? Speaker 3 Yes, I, you know, my story is different than most people and it's because I lost my dad and two grandparents to lung cancer when I was 13. And then when I was in my 20s, both my mom and my aunt Didi died of lung cancer and. In the 14 years between my dad and my mom dying, there wasn't a single advancement in lung cancer treatment, despite it being the number one cancer killer. In fact, you know, back in 2000. There wasn't a any lung cancer organizations, there weren't support groups, there weren't events, there was no lung cancer community at all. So around the time, that's around the time that I fell into advocacy. I say coincidence or fate, though the first organization in the country dedicated to lung Cancer Research was founded in my community. And I got involved and quickly joined the board. And back then we it was blood, sweat and tears just trying to get someone to care about lung cancer. I mean, it was a part of it was stigma, but a lot of it also was that patients didn't live long enough to become advocates. So you know you had. Two things going against you and the other control I had was to be my own advocate. I knew there was not a coincidence that there were two generations on both sides of my family diagnosed with lung cancer. So I started getting periodic scans. I actually how I got my first scan was I went into my primary care physician and. Said I had a cough and this cough wouldn't go away and that was the only way I could get a scan covered. But anyway, I had a scan, my first scan of 27 and then. I had another scan three years later at 30 and then I had a third scan when I was 35 and at that point they found a small brown glass nodule on my scan. And we decided to watch him wait. Now I had been involved in advocacy, so I knew a lot about lung cancer, and I felt comfortable watching and waiting. And so 3 1/2 years later, that nodule took a nasty turn. And I was diagnosed with lung cancer, each of our positive lung cancer in 2009. I was 39 years old. My kids were 6810 and 12. Their only association with the disease was death. So they were scared and my worst fear became reality. I was following in my, you know, family's. Footsteps. And there still wasn't any research that convinced me my path would be different. But in the past 14 years, I have had a front row seat to the evolution of biomarker testing, which has really, you know, translated into this revolution of lung cancer treatment and so as an advocate. I I've always been a lung cancer advocate. I first and foremost advocate for all kinds of lung cancer, but it's been interesting to watch the growth of the community. So right around the time I was diagnosed, maybe a little bit before social media became began to boom, so. Patients and care partners and loved ones from all over the world were finding each other online, and that became a real powerful way for people to connect and to hopefully provoke change. Understanding Patient Goals Beyond Clinical Data Wow. There's so much to unpack here. And honestly, I cannot even imagine the emotional roller coaster that you have to go through every single time you talk about this. And I cannot thank you enough for so graciously sharing all this. And this does not even capture the toll that this devastating disease takes not only on you, but on the family as a whole. So again, thank you. Thank. Speaker 3 You thank you for recognizing that because. It it's like I say to my kids, it's you're vulnerable when you open up and you share your experiences. But if it can make a difference in one person's life that it's worth it to me. I mean, my mom used to say it takes 1 candle to light a dark room. So. So you know, to me there's two parts of the story. There is the data. And then there is the patient and each patient is unique, each patient's cancer is unique, each patient's situation is unique. So there is not a one-size-fits-all approach to treating people. And so I think, and that's difficult as well. But really what I try to advocate for is. You know, saying I say that yes, it's really exciting to go to these conferences where numbers and curves get a spotlight and tell a critical story of hazard ratios and averages that may or may not be practice changing. But what it doesn't tell you is another important part of the story, and that is the patient and how. It's going to impact them and their family. And so I it's you know you really can't understand what is right for each patient until you get to know each patient. So one of the things I always say is the most important conversations that oncologists and nurses have with patients are not the data-driven ones. They're the relation relational ones. They're asking what are your goals of care? What are your goals in life? What's meaningful and important to you besides living longer? What tradeoffs are you willing to make? So not only do you get to know the patient, it builds trust. And then you can take that incomplete or conflicting data and apply it in the context of that patient in that family. I'm not saying it's easy. I recognize it's not easy at all. But that's where patient advocates I think can help. Speaker 1 And actually I think that in the community that is one thing that we all take a lot of pride in, where I happen to know my team and my patients a lot more intimately, right? Bridging Community Care with Cutting-Edge Research I have a core group of nurses that I know inside out. They are all local. We're trying to serve the local community. And I know as a community oncologist, it is tough to stay up to date with all that's happening, but it also gives us a chance to be that intimate and build that relationship with each and every patient. And there's this continuity even when they walk across the room to go to infusion side of things because now a friend or a family member is getting treated there, so. Speaker 3 Yeah, definitely. Yeah. And a lot of people, they're comfortable in the community. So you know if there are certain treatments or clinical trials. At the a large institution, they don't want to go to that large institution. You want to be treated where you feel comfortable, where you feel cared about. Because you patients and families want to know that the doctor caring for them also cares about them. Speaker 2 And just to stress the importance, 2 points here that we only got this far because of the amount of research that has gone in. And when given the opportunity, patients and clinicians should not shy away from enrolling into clinical trial. And that's how we can offer cutting edge treatment options to our patients and their family and again applying that data. In a hole is extremely important on the other hand as well, so we have to take both of these situations hand in hand. Speaker 3 Yeah. And when it comes to clinical trials, you know, sometimes it's the only treatment, but a lot of times right now in, you know, the era of personalized and precision medicine, sometimes it's the best treatment. But for patients and family, clinical trials provide that fundamental, you know, need that fundamental hope that patients and families need. And hope represents the chance. And every patient deserves the chance. Overcoming Barriers in Lung Cancer Diagnosis and Care Focusing on lung cancer, you mentioned that you were diagnosed at an earlier stage and that's where anyone would hope to get diagnosed as opposed to advanced stage. As a result, that ties into our current guidelines with USPSDF that is based on tobacco exposure rather than family history, though we have. Screening guidelines for colon cancer, breast cancer, prostate cancer. However, we do lack that in lung cancer space and other cancers, but we are getting farther with some genetic testing or germline testing and looking for certain mutations where if found positive, we can at least look for high risk cancers. Speaker 3 There is the stigma involved in lung cancer and I think they've done a great job of. You know the smoking cessation and the anti tobacco campaigns, they work but there is an unintended consequence and it has been the fact that, you know, it's created barriers to everywhere from diagnosis to quality care, but it's also, you know, prevented more research into other risk factors for lung cancer, so. We really are trying to move the needle on that, and I was originally diagnosed stage one I you know, the cancer did keep coming back, but a oncologist at Colorado, Ross Cammage, said to me years ago, he's in a very upbeat tone. He told me that I was lucky that my stage 4A cancer was caught early. And I thought that was an oxymoron and it ends up on probably Stage 3B, but with the, you know, the staging changes. But the reality is it's true. I have been lucky. I was lucky that it was caught on the earlier end because I've been able to take treatment holidays and we've been able to manage it. For you know, 14 years and we were able to manage it through local therapy radiation until 2019, no 18 and thankfully there was another treatment option for me which is what the targeted therapy I've been on since then and been stable. So it really is. Speaker 1 Important, It really can make a difference in a person's experience, you know, absolutely. The Importance of NGS in Early Lung Cancer I think coming back to what Roy you started off with a screening either at germline testing mutation level or Jill to what you've said high risk patients with environmental exposure. I think that's one part that we need to do better with screening. And then the other conversation to what you just said, Jill, the conversation around somatic mutation, which is equally important and these are the mutations that are present in the cancer cells that are driving the cancer itself. And that is critical because now we have targeted therapies and lung cancer has been the poster child for this, right. And we've seen so many approvals based on actionable mutations in lung cancer, including a Dora trial that was just presented at the plenary annual ASCO meeting. So biomarker and NGS testing is not only important in advanced disease, but now also in early disease. So I think that keeping all that in mind is so important. Speaker 3 Yeah, I mean, despite all of the advancements in lung cancer treatment for people diagnosed with the advanced disease, there was nothing in the early stage setting for a very long time and. You know, I I can tell you first hand the devastation being told you're cured only to learn that you aren't. And there's nothing anyone could do to lower risk of a recurrence. It's a horrible feeling. So I think as you know we're learning more and more about the different alterations and e.g. Fr positive lung cancer, you know was one of the first. So that's been studied for a very long time and to be able to use it in the early stage setting as adjuvant therapy is. It is you know, life changing for patients. I always say first you have to be tested. You know patients have to don't guess, test biomarker testing is critical. The one thing I do want to mention with that though is I think we have to be very cautious of, you know, patients having the NGS. But also making sure at the same time that they have access and can afford the treatment if there's a targetable mutation. Osimertinib's Impact on Survival and Brain Metastases Very, very true. And that's very, very important. Jill, when you saw the ADORA trial promising results, what were your first thoughts, especially when we're seeing more and more trials in early lung cancer settings? Speaker 3 I Unit my I. Was very excited to see the results actually in 2020 when they presented the preliminary at ASCO. I think, you know, when you look at the curves, I mean, as Lecia Sequis said, you could do a cartwheel in between those curves and that is a huge reason to celebrate because there are other cancers where. Adjutant therapy has proven beneficial, but their curves were not that separated and their hazard ratios were not that great. So you know it for me it was really exciting to see and to be able to offer patients something because if you look at the statistics. Diagnosed with early stage lung cancer compared to you know, in the 90s for breast and prostate and colorectal lung cancers, 65% early stage. If you look at the Serodata or 67, what if those were your odds, right? So now there's a way to address that. And we still have a lot to learn, but you know it's a big win for the lung cancer community. Speaker 1 Absolutely. One thing that I absolutely loved is what you said, don't gas, just test, I love that phrase. And coming back to Adora trial, right when we're looking at osamatenip, the drug used this outside chemotherapy is the one to show overall survival benefit. Before all this we had nothing but chemotherapy. You briefly mentioned that you were on something off label. Historically we've seen targeted therapies used in adjuvant trial but nothing really came out to show overall survival benefit. So now here with also martinib we have overall survival benefit. Speaker 3 Yes. And and keep in mind as well, I think one of the most important things is. Especially with e.g. Fr positive lung cancer or brain metastases And so osubmertnib controls brain metastases. Whether you have two or I've seen people with 24 that have completely dissolved. There's no reason to put a patient through a different you know, treatment locally for the brain and. That's for patients and our families. That is huge. That's life changing and and life saving. The Universal Need for Testing and Patient Advocacy The one thing I would always recommend is you to try and be proactive with side effects of the targeted therapy or like osumer nib because some people do still experience side effects and I know often we only look at the ones that require medical attention, but those lower grade toxicities can be bothersome. Speaker 1 I think given how fast this field is moving in the community, not only that we have to keep up with what's approved, but managing these toxicities, especially in adjuvant space when we're talking about quality of life. And keeping our patients going and again coming back to the patient centered care, what is important to that patient I think is so important. But just to reiterate a few things again, anyone can get lung cancer. I know there are some stigmas associated with this disease or stereotypes even about who can have actionable mutations. Targeted mutations are not exclusively seen in young patients or female or someone who has no tobacco exposure. I'll keep bringing this up, don't guess, just test. So again, the testing for this and keeping these options clinical trials for any state of cancer is so important. Speaker 3 Yes, yes, absolutely don't guess test and anybody can have a alteration of mutation, anybody. It doesn't matter how old or what risk factors they have. And so it is I think that is one of the most important things to remember that and as you mentioned as well that the patient and every patient is different and patients preferences and goals must be part of that decision, that treatment decision. Speaker 2 Joe, we cannot thank you enough for taking the time to join us today and for. Doing what you do as this has in fact given a voice to millions of our patients with cancer diagnosis. Thank you so much. Speaker 3 Thank you so much. If you have any other questions, let me know. If I can help in any way, let me know. That's, you know, that's my purpose. And so I really appreciate you bringing in the patient voice and the patient perspective.