In Their Own Words: Dan Engel
The following blog was posted at JimmyV.org on April 19, 2018.
The V Foundation is successful thanks to the contributions of many: donors, corporate partners, our incredible Board and Scientific Advisory Committee and the amazing researchers to whom we award grants. With “In Their Own Words,” we sit down with key members of our team to learn more about their commitment to the V Foundation and their personal desire to put an end to cancer. In this edition, we chat with Dan Engel, a cancer survivor and founder of Patient True Talk, a patient-to-patient registry where cancer patients can connect with others who have had similar diagnosis or treatments.
The V Foundation: You are a cancer survivor. Can you walk us through your cancer journey, from diagnosis to treatment to now?
Dan Engel: I was originally diagnosed with stage 3 melanoma in November 1998. The original lesion was on my scalp and we only noticed it after a short haircut when I was sitting under a skylight. One year after I completed a five-year clinical trial for a vaccine to prevent recurrence, the cancer returned, and I was restaged to stage 4 metastatic melanoma. Collectively, I have endured ten operations, gamma knife surgery on a brain metastasis, radiation treatment and six clinical trials (seven if you include reinduction and maintenance). In December 2014, I heard the words I never thought I’d hear – “you’re cancer-free.”
TVF: What was the most difficult thing you had to deal with and also, what advice would you give someone who has been diagnosed with cancer?
DE: Four rounds of biochemotherapy was the most brutal treatment that took a heavy toll on me and my body. I was living in San Diego at the time but spent five days straight in the hospital in Los Angeles receiving five highly toxic chemicals, plus all the drugs needed to manage the side effects. I then spent another night in Los Angeles to receive an IV infusion the following day. I then received four to five days of IV infusion at home while building up the strength to begin again. Each cycle was 21 days and I was told that very few patients made it through four rounds, let alone two.
I have lots of advice for someone newly diagnosed and have written a book entitled Thriving Through Cancer that includes many specific recommendations. The two most indispensable pieces of advice are as follows. First, if you can afford it, find your way to a center of excellence in your particular cancer. Travel if necessary. Second, always have an advocate with you at your appointments, and if possible, keep that person consistent. It’s so easy to not hear what the doctors and nurses are saying.
TVF: When did you come up with the idea for Patient True Talk? Tell us about how it originated.
DE: As a survivor who has endured so much, I was thrilled when President Obama called on Vice President Biden to lead the Cancer Moonshot in 2016. I followed the progress closely and maintained friendships with some of the major researchers involved. I conceived of Patient True Talk after participating on a panel discussion at a satellite meeting of the Cancer Moonshot Summit held at the Sanford Burnham Prebys Medical Discovery Institute in San Diego. On the panel prior to mine, I heard a statistic that less than 5% of adult cancer patients are treated in clinical trials. Coincidentally, the topic of my presentation was how important it was to convince more patients to enroll in clinical trials if we were to reach the Vice President’s goal of dramatically accelerating efforts to prevent, diagnose and treat cancer. During the Q&A session after, some of the pharmaceutical industry representatives asked me questions but left me longing for a better process.
My premise, founded from having participated in six clinical trials, is that a major barrier to enrollment is that patients are not readily given the opportunity to speak with other patients who have experienced what they are about to experience. I longed to speak to someone who went before me, and commonly spoke with other patients during my many years sitting in the infusion room receiving my treatment.
I believe that there are thousands and thousands of survivors like myself who provide informal advocacy on an ad-hoc basis all the time, and that would love to be part of a more organized effort to help fellow patients and their families. The only thing missing is the technology platform to aggregate those survivors. PatientTrueTalk.com fills that void.
TVF: What do you hope people gain when they join Patient True Talk?
DE: A friend. When I was diagnosed and faced my first clinical trial, and again each time I faced another form of treatment, I desperately wanted to speak to someone who went before me. Among other things, I wanted to know about side effects, life during treatment, state of mind, pain, etc., or basically everything I read about in the informed consent form. I wanted to know what to really expect from a patient’s perspective, not that of a nurse or doctor. I understood that by definition my experience would be different, but relished that opportunity to speak with a fellow patient.
PatientTrueTalk.com is the only patient-to-patient registry where patients and/or their caregivers can create profiles with as much information as they feel comfortable sharing, and find matching profiles based on algorithms created by some of the country’s top clinical oncologists. Patients/caregivers can also search along their diagnosis/treatment parameters, refining their search based on the results provided. They can then send secure messages directly to those who they believe represent the closest match. Once a connection is made, the two parties can speak off-line and hopefully form a friendship. My profile is the first “patient advocate” included on the site. I am working hard to recruit a critical mass of survivors/patient advocates to make the site a useful resource.
TVF: What does a Victory Over Cancer® look like to you?
DE: Victory means everybody has access to the highest quality of care whether they can afford it or not. Victory means nobody is discriminated against because of a prior or chronic condition. Victory means collaboration between scientists, clinicians and pharma to deliver precise treatments that work.