Episode Transcript
[00:00:08] Jillian: Hello and welcome to Beyond the Diagnosis, the podcast where we dive into patient stories of change and innovation that truly impact lives. I'm Jillian Tygh, your host and Chief Marketing Officer at Inspire, where we're passionate about fostering online communities and providing education for patients and caregivers. Today, I'm thrilled to have Terri Conneran with us. Terry is not only a lung cancer patient and survivor, but also the founder of KRASkickers, an advocacy group aimed at increasing awareness and understanding of how biomarkers can guide your personalized cancer therapies. Terri, it's great to have you here. Can you share with us your journey and what inspired you to start KRASkickers?
[00:00:46] Terri: Hi. Thanks for having me. You know, it's a privilege to be able to say that I'm an 8 year lung cancer survivor, because when I was diagnosed, that's not what the statistics look like. But let me kind of walk you through what happened.
January 2017, I was diagnosed with stage three lung cancer. Like anybody else, that wasn't the plan. That's not what I was looking for. I didn't qualify for any sort of like pre screening or scanning or anything. And being a child of, shall we say, the 80s, there might have been a little bit of smoking going on back in my history, but it didn't qualify me for any sort of a scan. Needless to say, I was diagnosed with stage three lung cancer and went through chemo and surgery and kind of thought, well, now I'm going to get my life back.
It's a call to action. You get a diagnosis, it's a call to action for next steps. So I got involved with some exercise classes and cancer group and started hearing about different things and different options that patients have for, like, resources that I wasn't aware of. So. So it gave me enough information to ask. But it became really clear that lung cancer patients have different availability and different issues than, say, breast cancer or prostate cancers or something. And so I got involved with a lung cancer group. And at the lung cancer group, that's really where I started hearing about biomarkers and mutations. And to be honest with you, the first time I walked into that room and it was a room full of people that looked like you and me. I mean, they looked like normal human beings, which was first a relief. But secondly, I noticed that they kind of broke up into different groups of people with like, names and they sounded like Star wars things like EGFR and ALK and tkis and all these things. I didn't know what they were, well, you know, I'm a need to know sort of person. And so I started asking my doctor, what is this and what's this mean? She says, well, those are the biomarkers. And we did biomarker testing, and you don't have any of those biomarkers. Well, that wasn't quite accurate. What was accurate is they did biomarker testing. What was inaccurate was I had biomarkers, and it was on my first test. I just didn't know enough to get a copy of the actual report showing the genetic and genomic makeup of my cancer. I didn't find that out until a second opinion two years later. And when I found out two years later, after two sad recurrences, happy to say, I was able to get back to no evidence of disease underlying how important it is to be vigilant about going and following up, getting continued scans after treatment. But after the second recurrence, I went out for a second opinion. It was a second opinion doctor that gave me a full report and said that I had krasnoar.
Completely expecting to see an existing group out there like there were for these others. I just went online, started looking around, and there wasn't a group. Well, retired PTA moms need to know, how do I connect? What do I sign up for? And how can I get connected with somebody that's like me? So I didn't no group. I started Facebook group. So this was January 2020, right before COVID started happening, and we started a Facebook group called kraskickers because all I wanted to do was understand kras and kick. Cancer's crass, or however you say it. So the Facebook group started, and the Facebook group subsequently has turned into a nonprofit that's been going for close to five years now. And as a nonprofit, we've reached out beyond just lung cancer. We do all sorts of kras biomarkers. I'd love to tell you more about that. Yes.
[00:04:45] Jillian: That was going to be my next question. Take a step back and listen.
[00:04:48] Terri: Yeah, yeah.
[00:04:49] Jillian: What a biomarker is and why it's important for these patients to know which biomarker they have and which which types of cancer does cares typically impact.
[00:04:59] Terri: Okay. You know, all right.
Research has changed. Okay. Research has changed. Okay.
Since things have happened in science, what they found is that not just do you have DNA in your body, but different cancer tumors have a different type of fingerprint, a DNA, or they call it a biomarker. That biomarker is often what drives the cancer. It's kind of Used interchangeably with the term mutation. Sometimes you'll see like a fusion, but it's all a driving factor behind the cancer. It's not necessarily inherited, but it's within the cancer that's driving the cancer tumor, typically in lung cancer, and typically quite across many different cancers. You'll see alk, which is a fusion. You'll see EGFR, you'll see ROS1, you'll see KRAS. You'll see a number of different ones. Even see her too. And within different types of cancers are different similarities that have different biomarkers within it. KRAs, for example, which is the one I'm most familiar with. KRAS is across the three deadliest cancers, and it's the most common of the oncogenes. It's most common biomarker across all cancer types.
Repeat that. The most common biomarker across all cancer types, and it's in the three top deadliest cancers. The three deadliest top cancers, lung cancer, pancreatic cancer, and colorectal cancer.
Those are the most common places you'll see it. You'll also see it in appendiceal cancers, endometrial, other gynecological cancers as well. That's what our organization has become to represent. We've gone and we realized the importance of this biomarker being what's targetable, what impacts a patient's best journey for strategic decision making for treatment care.
We've gone and we've taken caress and we've turned it into an acronym of what we want, action on, what our importance is as patient, as a patient group, Knowledge, research, advocacy, and survivorship. And how we're doing that is by joining forces as a patient empowerment group, focusing very much on where you are right now, today, where you are in your journey as a patient, and what is you need to know about the research so you can advocate for your own survivorship.
[00:07:42] Jillian: Yeah, and I was, I was doing some research before this call, and I saw that, you know, 25% of lung cancer patients have that KRAS mutation. 90% of pancreatic patients have it, pancreatic cancer patients, and 40% colorectal. So it's not. This is not a small population. This is affecting a lot of people. So now my question to you is, you know, how do patients advocate for themselves to get that biomarker testing and to find out what biomarker they have?
[00:08:11] Terri: Those are great first steps. First step is, if you're diagnosed with cancer, you need to get the biomarker information. The bad news is it may Take about two to three weeks to actually get the information. And your doctor is a person that needs to do it. So you ask the doctor to do it or you ask if it's been done as a matter of accountability. Get a copy of the report, look at the report, ask about it, Understand the report. You don't need to be able to duplicate it and explain it, but ask about it. From the cancer diagnosis, from the cancer report, with the genomics of it, the biomarkers, you'll see NGS testing, you can connect with other people that have the same type of biomarker, same mutation, and that mutation is what can makes the difference. Let me. Let me keep going down just a little bit deeper, okay? Because. All right, bear with the hand puppets here. I've got fancier puppets, but. But I talk with my hands. The important thing is that there's not just krs and EGFR and ELK and these sorts of things. There's different subtypes within each. And so you're not just positive or negative for something. Okay. And so there's like a G12C KRAS. There's a G12D, D12A. There's many different subtypes. Okay. Myself, I'm G12D. G12D is the most common across all of the cancers. And one of the reasons why I was so fascinated and truthfully scared about pancreatic cancer, because it's most common in pancreatic cancers. It's also very most common in gynecological cancers. So the importance is knowing is it KRAS, but also what subtype of KRAS it is. Currently there's approved drug therapies on the FDA approved drug therapies for only G12C, not for the other ones.
That's the importance of it. So to recap, diagnosis, get that test result, looking at it, and identify which subtype of what type of mutation that you have, and then connect with other people around that.
[00:10:28] Jillian: When you say there's an approved drug for one of the subtypes, how has knowing your biomarker knowing about KRAs? And you've obviously done tremendous amount of research and you started this foundation and you're educating other patients, what more can a patient expect by way of treatment?
Knowing this biomarker and how does it affect their treatment?
[00:10:53] Terri: That's a great question. Okay. Because I'm like, well, if I'm not krasg12c and I don't have an approved therapy, so what. What it does mean is that strategically, as a patient, I need to be informed and My doctor obviously needs to be informed what I am or what I'm not. So we can make best informed decisions across the treatment. Pf. Okay. And so if there's not something that's already approved for me, or there's not something like working in the pipeline with a clinical trial or something. Right. Then those are not options for me or those are potential options for me. And so if in my case, a G12C drug is not appropriate for me, what does that mean? It means that because this is taken off as the decision is one decision I can't use, that means I'm only left with these choices. Right. And so that's really what it boils down to. And if you don't get it, stay informed and make those strategic choices up front, then you may be limiting yourself because sadly, if you start one treatment, it's not like, oh, well, I only did one or two of this or that. Sometimes it makes a difference, and it sometimes can make such a permanent change in your body that you'll be excluded from, say, a clinical trial or limiting other options.
[00:12:15] Jillian: And it sounds like you're suggesting recommending patients take a very active role in their treatment plans beyond just kind of asking the doctor what they think, accepting it and moving on.
It sounds like you're suggesting, no, you should be together. You know, this is your life. This is your treatment. This is going to impact every day until you're cured or in remission. So how do you recommend patients learn about how to advocate for themselves in that situation?
[00:12:50] Terri: You're right. It's not just a matter. And there are people out there. Okay. And when I went through treatment, I just kind of followed along with whatever the doctor said.
Looking back, my husband was doing the research for me. My family members were doing the research for me. So although I wasn't the one actively making the decisions. Okay. And getting the information, that's who really was on my behalf, because I really was just too ill to go through doing that. And so how people do it is, I think, that you need to know the biomarker. Okay. And then you. How do you advocate for yourself? You get a second opinion. You go outside of the existing space that you're in. If you're listening to an echo chamber, that's all you're going to hear. Right. And as much as I love my Aunt Myrtle as anybody else, that doesn't mean she knows what's the latest and greatest and happening in my cancer space. There has been so many approved drugs, so much change over the past years. Okay. For example, from the first five years when I was first diagnosed till five years later, I'd gone from an 18% life expectancy to 25% life expect. Percent expectancy of life. Okay, that's massive. Science is happening so rapidly, but you're not going to be with it if you're not looking for it.
Did that answer it? Because it's really a matter of if you don't care, you don't care. But, but my doctor can't die for me. Don't let him live for you either. Make those choices and be informed about them. To be informed patient.
[00:14:31] Jillian: Yeah, and, and that's a great point. And I think that's what makes what you do so, so important. You know, like the community cares kickers community that you've built and the Inspire communities are valuable resources for all patients to do that research and become educated on their own and know what to ask their physicians about. So I think that the work you're doing is tremendously important.
And as your community grows, how do you see your role evolving in terms of patient education and advocating in oncology?
[00:15:03] Terri: In the oncology space, actually, I think there's so many great places you can get a list of top 10 questions to ask your doctor. Where we seem to focus in KRAS Kickers is very much what does that answer mean and is that a valid answer? If I say to you this is question number five on my list and you say, oh yeah, that's a great question. Blue.
How do I know if that's a legitimate answer and what that means to me, that's where we find ourselves very much involved in Kraskickers is very much around patient education, patient empowerment. That's how I like to call it because it's not just a minor role of I just show up and there is no options. There are options. And you're going to hear from other people that like you do in Inspire, you hear from other people that are walking through the journey right now. And then you can hear what are the other things that I need to know? What are the things I need to ask and what are the other options that are available for me? And how does that apply? There's nothing better than a little bit of hope. You share hope and you multiply it and the only place you're really legitimately going to get that is from somebody else who's walking the journey with you. And that's really ultimately what we're doing with Caress Kickers. We're sharing that current knowledge because the research is happening rapidly. And how do I need to know? What do I need to do? I'm not giving you advice. I'm giving you information so you can go back to your doctor and make an educated decision and you are comfortable with it and confident in what you're saying and making the best option that's available to yourself for your own survivorship.
[00:16:49] Jillian: Yeah, no, you're absolutely right. And I thank you so, so much for joining us today. Could you provide some information for our listeners on how to join kraskickers or if they're interested in learning more, where to go?
[00:17:02] Terri: Oh, absolutely.
I would be delighted to connect with anybody. Okay. Best place to actually go is onto our WE website.
We have a YouTube channel. We have a Facebook group. If you're really just kind of like, looking for, say, the clinical trials or just kind of the latest and greatest events that we've got is kraskickers.org K R A S like right over the shoulder. Kickers.org because we're here to walk along with you to get cancers crass.
[00:17:33] Jillian: I love your tagline.
[00:17:36] Terri: I'm sorry.
[00:17:38] Jillian: No, I love it. It's great. You know, I just think everything you're doing is wonderful. It is a great organization. I can't thank you enough for joining the podcast. And please Visit your the Kraskickers website as well as inspire.com to find your community. And thank you again so much for being here, Terry. I really appreciate it.
[00:17:58] Terri: Thanks so much.
