How Does Cycling Fight Cancer? Dave Linn & Ethan Zohn on the Power of Cycle for Survival

Dr. Diane Reidy-Lagunes:

Anyone touched by cancer – oncologists like me included – are often surrounded by sadness and even despair. But sometimes, these can be the moments to drive you to say, "I must do something. I have to do something." As clinician scientists, these moments motivate us to push and to think creatively about our treatment arsenal and in the lab for our patients. Today, I have the privilege to talk to two incredible men who had turned their soul crushing moments into a powerful fundraising phenomenon – we're talking hundreds of millions of dollars that translate directly into lives saved – and I can't wait. Hello, I'm Dr. Diane Reidy-Lagunes from Memorial Sloan Kettering Cancer Center and welcome to Cancer Straight Talk. We're bringing together national experts and patients fighting these diseases to have evidence-based conversations. Our mission is to educate and empower you and your family members to make the right decisions and live happier and healthier lives. For more information on the topics discussed here, or to send us your questions, please visit us at mskcc.org/podcasts. Before I introduce my guests, I have a personal story to tell. It's about a 21-year-old college student named Drew who had an adrenal cancer. After he had surgery, I had treated him with the tools I had at the time to give him the best shot at cure. But one day at a follow up visit, there on his CT scan, the disease was everywhere. It had returned. I sat in my office with the door closed and it took every ounce of my strength I had to walk into that room and share the news with his family. Six months later, we lost Drew, just shy of his college graduation. It was a heartbreaking loss for me and I was determined not to have another story end like that. Meanwhile, MSK's fundraising group, Cycle for Survival, was raising money for research into rare cancers, actually like the one that Drew had had. Within two years, some of that funding went into a clinical trial and I enrolled my first patient named Grace. Grace was also a college student with stage four adrenal cancer, which had spread to her lungs and her lymph nodes. Now, thanks to that trial, Grace is free of disease for three years. 25% of the patients on that trial had results like Grace. That's how pedaling helps save lives. Today, I am over the moon excited to introduce my dear friend and co-founder of Cycle for Survival, Dave Linn. Also joining us is Ethan Zohn, cancer crusher, avid supporter of Cycle for Survival, and the winner of TV's "Survivor: Africa". Seven years after winning "Survivor," Ethan was diagnosed with a brutal type of lymphoma requiring two stem cell transplants. He is now cured of his disease, the ultimate survivor. Welcome to the show, both of you.

Dave Linn:

Thank you so much, Diane. Fired up to be here and it's so great to hear stories like your patient Grace. It's awesome.

Ethan Zohn:

Excited to be here. Thanks so much for having me.

Dr. Diane Reidy-Lagunes:

Dave, Cycle for Survival has raised nearly $300 million in 15 years. It's an ongoing smash in the fundraising world. Let's describe what exactly Cycle for Survival is.

Dave Linn:

Yeah, of course. Cycle for Survival is the movement to beat rare cancers. So we have these incredible events – a lot of people call them dance parties on bikes, because they're these stationary bikes. And it's not like a triathlon that you have to train for because, since the bike's not moving, we always say that you can either pedal hard or you can hardly pedal. So everybody forms teams and between your team, you share a four-hour ride, relay style. So if we were on a team, I might ride to that for that first hour. Diane, I'd turn it over to you. You would maybe ride for two hours. Then maybe we turn over to Ethan. Ethan would maybe ride for about five minutes. And then we turn it over to one of our other teammates to finish off that four hours. And we'd reach out to all of our friends and family for donations to support our rides, and every single penny that gets raised, a hundred percent of those funds, go directly into research to find better treatments for rare cancers.

Dr. Diane Reidy-Lagunes:

Jen actually had the idea – your late wife – of doing it in a spin class, I believe. Could you tell us how – is that in fact, the case? And how that happened?

Dave Linn:

I've gotta take you back a little bit. Jen and I met in business school at Harvard and we fell in love. We got married. Everything was great in the world. And about a year after we got married, she started having these fevers and night sweats. And we went to doctor after doctor after doctor, and I remember them sitting us down and saying, "Jen, you have this rare type of cancer." And of course we were scared. We didn't know what the future would hold, but we made a really specific decision to kind of do whatever we could to put those fears to the side and do everything we could to help Jen and to help other cancer patients. Even during her toughest chemotherapy, she would still wake up for her 6:00 or 7:00 AM indoor cycling or spinning class at Equinox. And when we were starting to think about a fundraiser, we said, "Oh, this is perfect. Anybody can get on the stationary bike and ride." We got a few friends together and few family members, and that was the start of Cycle for Survival.

Dr. Diane Reidy-Lagunes:

Awesome. Ethan, you were a professional soccer player, even though you can only go on a bike for five minutes.

Dave Linn:

He was a goal keeper.

Ethan Zohn:

We're not known for our endurance. Just put it that way.

Dr. Diane Reidy-Lagunes:

And then you were the winner on CBS's show "Survivor," which is just absolutely extraordinary. But how did you guys meet?

Ethan Zohn:

Well, Dave and I and Jen, we all met actually on a bus at the 2002 World Cup. So Dave and I are huge soccer fans, soccer players, and I was doing some reporting right after I won "Survivor" in 2002. And over there in Korea and Japan, I met those guys there.

Dr. Diane Reidy-Lagunes:

Amazing. And so you were involved in Cycle for Survival at that time, or you were just meeting them at the time?

Ethan Zohn:

We were just soccer fans hanging out. That bonded us forever. But when I was first diagnosed in 2009 at the age of 35, Jen reached out to me – and that's just the type of woman she was – just to offer support and comfort and community as a friend.

Dr. Diane Reidy-Lagunes:

And then what role did Cycle for Survival play in your life?

Ethan Zohn:

Well, I got involved with Cycle for Survival because of Jen and because of Dave and my first year was 2009, so just two years after it started. It was a fairly big event at that time – I think mostly just in New York City – and being treated at Memorial Sloan Kettering and, you know, knowing Jen and Dave, they invited me to participate in Cycle for Survival. So I showed up there, bald with chemo. I think that first year I didn't even ride, I just wanted be part of the event and support Jen and Dave and their endeavors, and obviously for rare cancer research at Memorial Sloan Kettering.

Dr. Diane Reidy-Lagunes:

Why do you think it was so successful? Either one of you on this one. Cause there is absolutely a magic that takes place. You get on that bike and the world is just yours to take. What's the secret sauce, Dave? What do you think?

Dave Linn:

Part of it is tough to explain. There's just some magic that has developed. But I think when a friend or family member gets diagnosed with cancer, it's a helpless feeling because we all want to help, but we don't know what to do. And Cycle for Survival provides an easy way for people to fight back and to show their love for their friend or family member going through treatment. You can go on CycleForSurvival.org and see the incredible progress, see how every dollar is being spent to make a difference and to find new treatment options. And actually a funny story: people you would send us gifts when Jen was going through treatment, and Jen used to say, "Hey, I don't need anymore pajamas. I've got enough. I got enough pajamas. What I need is more money into research." So get involved, raise money. Let's see if we can't help develop better treatments. And I don't know, Ethan, if you feel similarly.

Ethan Zohn:

I do. I mean, from a patient's perspective, walking into that room, you know, the type of cancer I had was a rare cancer. I had CD20 positive Hodgkins lymphoma. Right? No one's ever heard of it, including me. So for me to walk into that room and see hundreds of people, all riding a bike, sacrificing their time and energy and sweat to raise money for cancer research that funded a drug that saved my life – to me, that's inspiring. That's why people show up. And nothing creates comfort and confidence more than knowing you're not alone when fighting a disease like cancer. And so for me, for most of my adult life, I've been on the giving end of charity, philanthropy. But then when I got diagnosed, it just totally flipped and all of a sudden I became on the receiving end of charity, philanthropy and community support, and Cycle for Survival was that community support for me and the cancer research. So it was just a one-stop shop for all things cancer-crushing. It's the best.

Dave Linn:

I mean, the one thing I would add: So from Ethan and I, those are sort of the personal reasons why we feel that it's been successful. I can give you business school answer as well. They did a case study on Cycle for Survival at the Harvard business school, and I happened to be there when the professor was teaching it. And he started speaking in the class and said, "Why was this so successful?" He basically said that it wasn't that there was some great strategy, but it was that all the small decisions along the way were correct. Jen and I started it on our own, but very quickly we realized that we couldn't do this on our own, and letting Memorial Sloan Kettering come in and own and operate Cycle for Survival was a very smart decision in terms of the growth. Bringing in Equinox as the founding partner, making it team-based instead of individual-based, all of these sort of smaller decisions along the way were what he said led to the ultimate success.

Dr. Diane Reidy-Lagunes:

Yeah, but I will say it's also super fun. As a movement, I mean, everybody wants to go back again because you get in there and you just feel like you get this injection of energy and pride and passion to be part of it, and it's a community I think that we're all very, very honored to be part of. I know for myself, it's sort of my day just charge the batteries and get back to the clinic the next day and really kind of think again creatively about what we can do to make sure that those dollars are going to good use.

Ethan Zohn:

And I think it's important to understand that the flow of money, just in the general sense, when a doctor or an oncologist or researchers are looking for funding to kind of do their work, you know, there's a lot of red tape that happens. With Cycle for Survival, the money's raised and that money gets filtered directly to the doctors that need it most, that are doing the most innovative research. And that flow right there is huge because it's instant and they really get to work and do what they need to do in the quickest way possible.

Dr. Diane Reidy-Lagunes:

Yeah, I know. You nailed it. And Dave, you and Jen had this vision at the time, which is still true today, which is to say it's these rare diseases that are so underfunded. So can you talk to us a little bit about that?

Dave Linn:

Yeah. We were pretty surprised at how limited the treatment options were for what Jen had. But then we started to look at other types of cancer and they were similarly needing more funding. And we started to add up these so-called rare cancers. And when you add them up, 50% of all people that are diagnosed with cancer are facing a rare type of the disease. And these are cancer types we've all heard of that are technically considered rare cancers. So brain cancers, pancreatic cancers, ovarian cancer, the various types of leukemia and lymphoma, all pediatric cancers, if you add 'em up, makes up 50% of all cancer cases.

Dr. Diane Reidy-Lagunes:

And Dave, why is this level of fundraising so important? Is it like seed money that we're trying to invest to allow the discovery to take place? Or what have you learned through the journey?

Dave Linn:

What I've come to understand is that getting funding particularly in rare cancers, and for any ideas that are bold or creative, can be very difficult because traditional funding sources tend to follow ideas that are likely to have some success or likely to have the biggest markets. But what Cycle for Survival is able to do is with that seed funding. If you can provide the initial funding for a bold idea or in a rare cancer and show some promise, then all of a sudden, more money comes into those areas because it has a higher likelihood of success. So the funding that we're actually providing has this multiplier effect that really leads to a huge impact.

Dr. Diane Reidy-Lagunes:

Speaking of impact, one of the biggest impacts, as you know, is the development of what we call MSK-Impact here, and so much of the funds really started from Cycle for Survival, as you know. It's 505 genes that essentially almost all of our patients that come into Memorial Sloan Kettering have the opportunity to be tested for. And the idea is that we can test for these 505 genes in the patient's tumor, figure out if there could there be a possible mutation or alteration, to actually go right to that alteration to treat it. And so I can't overemphasize how important that – what we call next-generation sequencing – and that type of technology has done to truly redefine the way that we're caring for our patients. And then there was a drug called larotrectinib, and essentially that went after what we call a gene fusion, and it was the first FDA drug really pioneered – and moved forward I should say, at MSK – to allow us that any patient with that gene re-fusion, irrespective of their cancer type, had a home run hit in terms of how well it responded. Cause I think that we really want to tell people that the money that they're raising is put to good use.

Dave Linn:

Yeah. I mean, there's still a long way to go but when I think about it, if Jen were diagnosed today, the way she would be treated would be completely different just a short number of years later. We're making progress, we're getting there, and we need to keep going after it.

Ethan Zohn:

And I was the recipient of one of these experimental new targeted therapies. So when I was diagnosed at 35 – multiple rounds of chemotherapy, 22 plates of radiation – I had an autologous stem cell transplant, which is great, the doctors were psyched, they felt they got the disease into remission for a while. It returned 20 months later. And, you know, getting news that the cancer returned was completely deflating, exponentially more difficult than the first time around. I was running out of options, I was scared, I was pissed off, I didn't want to die. And as a patient, that's when you pray. You know, like you pray for the silver lining, the glimmer of light, the ray of hope, and do you know what hope looks like to cancer patients? It looks like successful research and new drugs. And lucky for me, at that exact moment in time, just when I needed it the most, this new smart targeted therapy emerged on the market and was available for select group of people in my exact situation. Like some person was in a lab someplace in the world studying this delivery mechanism. All I needed was a drug to get me into remission so I could go on to get my second stem cell transplant, which I did. And so these types of research – anyone listening, if you're wondering where your money is going – like it's inside me. It's swimming around inside my body. It's in thousands of people's bodies. And the work that these doctors are doing, it's saving the lives of real people like me. It's incredible.

Dr. Diane Reidy-Lagunes:

You are our inspiration and many, many others out there, Ethan. And you're a champion, you're a survivor, but your story of the Ethan Zohn you are today is pretty amazing. How'd you get here?

Ethan Zohn:

Well, I mean, I think my cancer journey started when I was a young kid. When I was 14 years old, cancer came into my home, took my father away from me. So growing up, my only connection to cancer was through my dad. If my dad was diagnosed today – stage two colorectal cancer – he'd be fine. But science and technology just wasn't there yet in 1989, and research and science wasn't able to save my dad. But it was able to save me. And so just moving on throughout my life, I just was inspired to use whatever circumstance in my life to help other people. And I was really fortunate to go on this television show "Survivor," which kind of put me in a position where, you know, I had a little bit of a platform. And so when I was diagnosed with cancer myself, it was an easy decision for me to kind of be public with that story, with that journey, because the details of my life can help other people out there.

Dr. Diane Reidy-Lagunes:

As you said, you went through some brutal treatments with two transplants, and many of our listeners right now are going through a lot. They're terrified. Anything that you would share with them to sort of help and adjust when you get such a life changing diagnosis?

Ethan Zohn:

I always say nothing's more empowering than the truth. You know, often the thoughts and feelings that a cancer patient is having is the same as the caregivers: fear, anxiety, loneliness, helplessness, heaviness, like we're all feeling that. But if you're not talking about it, then you really can't necessarily help each other in the best way possible. So I always just say, be transparent with the ones you love. Be transparent with the people around you: your doctors, your caregivers, everyone. Opening up that conversation will really help eliminate some of the barriers and get you through the most difficult times in your life.

Dr. Diane Reidy-Lagunes:

Yeah, absolutely. And Dave, you were one of those caregivers. Anything that you can share in how you got through your time, with those that are listening?

Dave Linn:

Yeah. I mean, it's not easy. I'm not going to sugarcoat it. But remember one of the early conversations we had with one of the doctors and we were asking about the future and he said, "Remember: year by year, it's all unclear. But day by day, we find our way." And that kind of stuck with Jen and I. And really the second thing that helped us is, we have these little fears, these worries – "What if something doesn't go well at work? What if my boss doesn't like this? What if my son or daughter doesn't do well on their exam or getting to college?" – all these little fears and worries, and they don't help us. And they particularly don't help us if you're facing a health challenge. So one of the things that Jen and I were able to do was to take those fears, put them to the side. And actually she often said that getting cancer was one of the best things that ever happened to her because putting those worries and fears to the side allowed her to live the life that she wanted to live, and live life to the fullest. So that's what I'd say. And Ethan, I know you have something similar in terms of what to do with those fears and worries as they pop up.

Ethan Zohn:

Yeah. You know, for me, I wasn't able to put those fears and worries aside all the time. So I definitely had to create a little bit of a system on how to manage the fear, the anxiety, the invisible scars, the dump trucks full of uncertainty. For me, going through cancer was – I'm not gonna say easy – but when a doctor tells you to do something or you'll die, you pretty much do it. Like there's no choice there. You know, there's no decision making. However, for me, post-cancer in my survivorship as a young adult, that's when stuff got scary for me. Like that's when those what-if scenarios, those fears, they piled up and it became debilitating. So what I would do, like you Dave, I'd take these fears, these what-if scenarios, I'd write the what-if scenario down on a piece of paper and then I would literally just map out a plan on how I wanted to address that what-if scenario. And then once it was out of my brain and on a piece of paper, every time that what-if scenario came in my head, I'd be like, "Oh, I know exactly what I'm gonna do. I already accepted it. I mapped it out and now I can move forward." And then I could kind of put the fears aside. And I literally have shoeboxes full, and Filofaxes full, of these what-if scenarios and sometimes I'll reference them and I'll say, "Oh alright, cool. I know exactly what I'll do."

Dr. Diane Reidy-Lagunes:

That's awesome. Alright Ethan, finally last but not least, how the heck did you win "Survivor: Africa"? Cause the public wants to know.

Ethan Zohn:

I'm just a really evil, manipulative, backstabbing type of guy.

Dr. Diane Reidy-Lagunes:

You are a leader for sure. Cause we've all watched. And we're mesmerized with how you handled that.

Ethan Zohn:

It gets back to what we were talking about today, a little bit about community. So when I was out there on "Survivor," my entire strategy was to make myself a crucial member of the community, crucial to everyone else's survival. So without me, if they voted me off, their life in the game would be a little bit more difficult. So "Survivor" is a game of relationships, and I just really worked really hard on developing these real, trustworthy, personal relationships in the middle of this kind of cut-throat, evil game of "Survivor". And I think that's what helped me get to the end.

Dr. Diane Reidy-Lagunes:

Some kindness. If people wanna get involved in Cycle for Survival, what should they do?

Dave Linn:

Yeah, I would encourage anybody who wants to get involved to go to CycleForSurvival.org and you can register a team to ride with us, you can donate to my team, Team Fearless, or any of the other teams, to Diane's team, to any of the other teams. We've got a couple out there. There's so many ways to get involved and make a difference, and one of the things that I think Ethan and I have both learned on this journey is that getting involved in something that's bigger than yourself is one of the best things that you can do to bring meaning and purpose to your life.

Ethan Zohn:

If it wasn't for the work of Cycle for Survival and all the doctors and nurses and everyone at MSK, I would not be alive today. And so I just wanna say thank you and obviously thank you for including us in Cancer Straight Talk. It's just been a pleasure to chat with everyone.

Dr. Diane Reidy-Lagunes:

Well, thank you both: David Linn, co-founder Cycle for Survival, and Ethan Zohn, cancer crusher, uber survivor and motivational speaker. You guys are the reason we do everything we do every single day, so thank you for joining me.

Ethan Zohn:

Thank you.

Dave Linn:

Thank you, Diane.

Dr. Diane Reidy-Lagunes:

Thank you for listening to Cancer Straight Talk from Memorial Sloan Kettering Cancer Center. For more information or to send us any questions you may have, please visit us at mskcc.org/podcast. Help others find this helpful resource by rating and reviewing this podcast at Apple Podcasts or wherever you listen to your podcasts. These episodes are for you, but are not intended to be a medical substitute. Please remember to consult your doctor with any questions you have regarding medical conditions. I'm Dr. Diane Reidy-Lagunes. Onward and upward.