Dan Engel will be the first to tell you he’s pretty much incapable of self-pity. “It’s not part of my genetic makeup,” he says. “I just don’t have ‘quit’ in me.”
And it’s a good thing too, as that attitude helped get him through what has been, by any measure, a grueling fight against melanoma. After his initial diagnosis in 1998, Engel experienced five recurrences and underwent 10 operations, plus radiation and treatment in six clinical trials, often with drug combinations with horrendous side effects.
Twenty-one years later, at age 57, he is considered cured. He is also a very different person. He’s glad about that.
A Spot on His Scalp
As with many cancer stories, it all started on what promised to be an ordinary day. It was November 1998. Engel was playing with his 1-year-old daughter at his home in Southern California. He’d just gotten a short haircut, and his wife noticed a spot on his scalp. He made an appointment with his dermatologist, who biopsied the lesion and called two days later. “You know when the doctor calls you himself, the news is not good,” says Engel.
He left the office that day with a diagnosis of Stage II melanoma and a referral to the John Wayne Cancer Institute (JWCI) in Santa Monica. His first surgery—removal of the lesion and two lymph nodes, then a skin graft—lasted six hours. The post-surgery pathology report revealed cancer had spread to more lymph nodes; more surgery. His cancer was now Stage III and carried a 50% percent chance of recurring within five years.
Let the Trials Begin
The next step was to enroll in a clinical trial at JWCI for the experimental vaccine CancerVax. Engel got regular injections over nearly five years. In 2004, at the end of the trial, his final scans showed no evidence of disease (NED). Says Engel, “As far as I was concerned, I was cancer-free.” But around six months later, he felt a lump on his neck while adjusting his iPod earbuds. Tests confirmed new tumors, including in a salivary (parotid) gland and in more lymph nodes. His cancer was now Stage IV. Back to surgery (five hours), radiation (several rounds) and a new clinical trial for a multipeptide vaccine. Even that didn’t discourage the cancer.
In 2005, Dan entered a biochemotherapy trial. It combined three types of chemotherapy with two drugs (interleukin-2, or IL-2, and interferon alfa-2b) that utilized a then-new approach, immunotherapy, to help the immune system fight cancer. The side effects were nearly intolerable. “My body blew up like a balloon, my skin turned lobster red and I had nonstop diarrhea,” says Engel.
Still, the tumors remained. His doctor told him, for the first time, that he faced a terminal prognosis. “It was emotionally devastating, a huge punch in the gut,” Engel recalls. But he told the doctor he didn’t want to quit.
After several more recurrences—including one in which he could actually feel the tumors pushing against the skin—and more surgeries, Engel entered yet another clinical trial, this time involving IL-2 and another immunotherapy called GM-CSF. The cancer came back, so he enrolled in his fifth trial, for carboplatin/paclitaxel along with Nexavar (sorafenib), a targeted therapy approved to treat kidney and liver cancer. Three months later, a scan found eight tumors.
Next up was a trial for an experimental immunotherapy drug called ipilimumab. Four rounds of “ipi,” as he calls it, dissolved the tumors, but they returned just a few months later. Now the cancer had metastasized to his brain. He underwent gamma-knife surgery, a highly targeted form of radiation, to shrink the brain tumor.
Finally, things started to look up. Engel resumed the ipi trial; after the first two doses, scans showed no evidence of disease. It was 2007. For the next six and a half years, he received quarterly maintenance infusions. In 2014, his doctor told him he no longer needed scans. “I asked him if I was cured,” recalls Engel. “He looked me in the eye and said ‘Yes.’” He’s been NED ever since. That drug, ipilimumab, approved by the Food and Drug Administration under the brand name Yervoy in 2011, was the first new treatment for advanced melanoma in 13 years. Now, there are a dozen (see “A Revolution in Melanoma Treatment,” below). In the year 2000, the one-year survival rate for people with Stage IV melanoma was 25%. Now it’s 75%.
After a Cure, a Shift in Values
“A self-important investment banker.” That’s Engel’s description of who he was before his initial diagnosis. He still works in finance, but his values and priorities are very different now.
One light bulb moment occurred in 2004, when he and his wife watched a TV segment about The Miracle League—a baseball league made up of children and adults with mental and physical challenges. He became actively involved and eventually started a chapter in San Diego. Opening day was in 2007, two weeks after Engel was declared NED after the second ipi trial. He still devotes between two and 10 hours a week to the league. “I’m so passionate about it, I will do it until I die,” says Engel. “It gave me meaning during my treatments, and I believe it was part of what saved me.”
Engel also considers himself blessed to have met his current wife, Robin. Unfortunately, his first marriage did not survive the strain of his illness on their relationship—which is not uncommon—and the pair separated in 2012. In 2013, Engel met Robin on an online dating site. The two married in 2016.
Engel is driven to help others struggling with cancer. He knows how lonely it can be. “When I was diagnosed and faced my first clinical trial, I desperately wanted to speak to someone who’d been through it,” he says. “I wanted to know about side effects, life during treatment, state of mind, everything.”
In 2018, he launched Patient True Talk (PatientTrueTalk.com), a free online platform that matches people living with cancer to people who have survived the same, or a similar, diagnosis and lets them connect privately and securely. His mission: to help fill the void he felt for the next generation of people fighting cancer.
Between his devotion to The Miracle League and his investment in Patient True Talk, Engel is not shy about saying he feels he was meant to change the world. As he puts it, “You don’t get six chances at life unless it’s for a good reason.”
A Revolution in Melanoma Treatment
In its early stages, melanoma is usually treated with surgery, sometimes followed by radiation. For later-stage disease, major advances have been made over the last decade.
Immunotherapy. Checkpoint inhibitor drugs work by boosting immune cell activity. They include Keytruda (pembrolizumab), Opdivo (nivolumab) and Yervoy (ipilimumab). Interferon-alfa, interleukin-2 and the Imlygic (T-VEC) cancer vaccine may also be used.
Targeted therapies. About half of all melanomas have a mutation in the BRAF gene, which makes them susceptible to targeted therapy drugs. Oral BRAF inhibitors include Braftovi (encorafenib), Tafinlar (dabrafenib) and Zelboraf (vemurafenib). Other drugs, including Cotellic (cobimetinib), Mekinist (trametenib) and Mektovi (binimetininb), target MEK, a protein involved in cancer cell growth. BRAF and MEK inhibitors are usually used in combination. Also, a few melanomas have changes in the KIT gene and may be candidates for treatment with Gleevec (imatinib) and Tasigna (nilotinib), or they may have NTRK fusions susceptible to Vitrakvi (larotrectinib).
While chemotherapy can help some people with advanced melanoma, other treatments are usually tried first. Dacarbazine and temozolomide are the chemotherapy drugs used most often, either by themselves or combined with other medications. Some doctors may recommend biochemotherapy, a combination of chemotherapy and interleukin-2 or interferon.
Dan Engel’s Words of Wisdom
Being a cancer patient on and off for so many years taught Engel how to look out for himself. His advice:
- Try to be the first surgery patient scheduled for the day. The surgeon will be fresh, and you’ll avoid the anxiety of waiting.
- No matter how frustrated you get, be kind to all the staff. They, in turn, will be kind to you.
- Keep copies of all pathology reports, scans, blood work, clinical trial consent forms and documents related to your health history, and make sure your doctor can access them easily.
- Be a strong advocate for yourself. Don’t accept a doctor’s opinions if your gut tells you that you need more tests or that something is wrong. You know your body best.
To learn more about melanoma, click here.
To read the Melanoma Research Alliance blog, click here.