In late May, the Cancer Messed With Team traveled to Chicago for the 2019 ASCO Annual Meeting. The ASCO (American Society of Clinical Oncology) Conference is one of the, if not the, premier conference for those in the oncology field.
We took our message of Cancer Messed With and introduced ourselves to doctors, advocates, consultants, researchers, and other professionals in the oncology field. At the conference, in addition to oncology professionals, there were survivors and advocates in attendance. We were fortunate to meet some amazing people who were willing to tell us their stories. One of those people we met was a man from California with an engaging personality and a mischievous smile.
Dan Engel’s story with cancer began in 1998 when he was diagnosed with melanoma. Over the course of the next 21 years, Dan faced five recurrences and underwent 10 operations, plus radiation and participated in six clinical trials. When he was 57, Dan finally heard the phrase “you’re cured” from his doctors.
We were so moved by Dan’s story that we asked him if we could interview him and share his story on our blog.
Meet Dan Engel
Before my diagnosis, I was a typical yuppie investment banker living in Manhattan Beach, California. In 1998 when I was diagnosed, I was married with two kids – a four-year-old son and a one and half-year-old daughter. We lived well, traveled, and spent a lot of time in the sun.
In November 1998, when I was 36 years old, I was diagnosed with melanoma. The diagnosis based on the original biopsy was stage two, but after full excision and sentinel node mapping, I was re-diagnosed as stage three with a 50% chance of recurrence within the next five years.
CMW: How did you feel supported during your fight?
I had an incredible network of friends who were extremely supportive. The level of support necessary changed over the years. After the initial diagnosis and subsequent surgeries, I decided to enroll in a clinical trial for an experimental vaccine (CancerVax) that was intended to prevent a recurrence (what’s called an adjuvant setting, where there is no evidence of disease). The clinical trial was double-blind, where I wouldn’t know whether I was receiving the vaccine plus an immunotherapy agent or a placebo plus an immunotherapy agent. My boss and mentor went as far as having a well-known individuals attempt to influence the randomness of the selection process and ensure I received the vaccine. The cancer center ignored that attempted influence, of course, but as it turned out, I did receive the vaccine.
We also decided to move from Manhattan Beach to San Diego to be near my wife’s family. We thought that in the event of a recurrence, she should have a close support network. For the five years of the trial, I was in great health and traveled to Los Angeles every three months (more the first year) for scans and treatment. To make the trips to L.A. palatable, I established a routine of boys’ nights out with my closest friends, as my wife didn’t accompany me on these trips.
CMW: Tell us about your mantra, if you had one, during your fight. What kept you going?
The ringtone on my cellphone is “Don’t Worry Be Happy” by Bobby McFerrin and that truly was and is my mantra. My journey changed dramatically in 2005 with my first recurrence, which was about one year after my clinical trial ended. During the next two years I did virtually nothing but battle recurrence after recurrence. When my melanoma was restaged to stage 4 in 2005, the odds of five-year survival were less than 5%.
In total, I endured eight more surgeries (after the first two in 1998), radiation, gamma knife surgery on a brain metastasis, and enrolled in five more clinical trials. What kept me going was always the same and it’s a very simple answer to me: I wanted to live. I wanted to see my children grow up. I wanted to be alive for my son’s bar mitzvah. I then wanted to be alive for my daughter’s bat mitzvah.
My network of friends really came through during these years, often accompanying me on clinic visits to L.A., going on walks with me during recuperation periods, taking me to lunch, etc.
During this time, I also began forming the Miracle League of San Diego, a non-profit organization that provides children with special needs the opportunity to play baseball in an organized league. I formed the entity, received tax-exempt status from the IRS, formed a partnership with the San Diego Padres, secured almost $1 million in funding from the County and raised over $300,000 from friends, family and colleagues to build a rubberized field that accommodates wheelchairs, walkers and the sight-impaired.
Our field opened for play in May 2007 two weeks after I received my first clean scans in over two years. We are now in our thirteenth year of operations and serve over 270 children each season at our (now) two fields.
CMW: Tell us about your remission journey.
This is a complicated point and tough to define. You could say my first remission was right after the initial two surgeries in 1998 before starting my clinical trial. The term the doctors would use was “NED”, or no evidence of disease. I would achieve NED status several other times after surgeries but before the next recurrence. My first meaningful remission post-stage four status was in May 2007. The clinical trial that saved my life, Ipilimumab, was pivotal in the drug’s approval by the FDA (the drug’s name was eventually branded as “Yervoy”). Moreover, it had a maintenance phase attached to it where I received quarterly infusions for another seven and a half years. In fact, I’ve probably received more immunotherapy than almost anyone in the world.
A year after the maintenance ended, at a semi-annual check-up, my oncologist said I was done and I didn’t need to get scans anymore. I asked, “are you saying I’m cured?” He looked at me and answered “yes.” Those were the words I never thought I’d hear.
CMW: How has your life changed since your diagnosis and remission?
My life has changed in too many ways to count. Most importantly, I came to believe that I had a higher purpose in life than just making money and supporting my family. I truly believe I was meant to change the world. I know that I changed San Diego with the Miracle League.
I’m trying to change the cancer world with Patient True Talk. I believe that one of the most pressing issues a cancer patient and/or caregiver faces is the need to speak with someone who has been through exactly what they are about to go through themselves. Unfortunately, the existing system does not do a good job of facilitating those connections. I built Patient True Talk to make creating connections easier. We want this to become the most robust resource available for patients and caregivers.
CMW: What else do you want to say about cancer and your journey with cancer?
My journey with cancer is just that, my journey. Everyone’s journey is their own and will undoubtedly be different. However, no matter what an individual might face, someone else has experienced that before, as well. I tried to capture my experiences and lessons learned in my book, Thriving Through Cancer. I’d like to think there is something in there for everyone.
Patients need to be their own advocates and they must do so relentlessly. But it’s hard to be your own advocate all the time, so it’s vital to find one or two close family/friends that can be with you on your journey and be supportive at all times.
CMW: What did you think when you first heard the phrase "Cancer Messed With"? What do you think now after some time has passed since learning about it?
When I first head the phrase “Cancer Messed With” I thought of myself. Cancer messed with the wrong dude, guy, badass mofo who wouldn’t ever give up. But it reflects an attitude that I think is essential in fighting. I know that everyone handles cancer differently, but you have to want to live. If you do, cancer messed with the wrong person.
When I think of the phrase now, I think of the wonderful people who started the (Cancer Messed With) company and raise money for pediatric cancer research. I think they are like me and believe they have a higher purpose and are changing the world. I think of all the other people that cancer messed with, and hope that they kick cancer’s ass and move on in life. I hope that someday everybody that cancer messes with is the wrong person.
Dan was recently featured in Cancer Health magazine as their cover feature.