As part of our “Together We Will” series, Coolibar had the opportunity to talk to Steven Silverstein about his journey from a shocking stage-4 diagnosis to today. Here is Steven Silverstein’s remarkable story in his own words.
“I always went to a derm. My sister is a derm. Even with that, I still had stage 4 melanoma that was misdiagnosed by my dermatologist and a plastic surgeon,” said Steven Silverstein as the conversation started. “I had something on my face that had been removed and it didn’t go to a lab, labs weren’t standard back then,” he said. “Sometime later, I had swelling on my neck and got a needle biopsy.” By then the cancer was in his liver and the doctors told him not to bother having surgery. “Why go thru that?” they said. They wrote him off. But they didn’t really know Steven Silverstein.
“Here’s the thing, my daughters were 13 and 16 when I was diagnosed. I wasn’t going to give up without a fight. I wanted to get as much of the tumor burden out, tumor out, so I decided to have the neck dissection.” Steven told us that there were no clinical trials at that time, so after his surgery, he did a “chemo cocktail”, which did not work, then direct chemoembolization to his liver.
“What I wanted was a systemic approach, a protocol,” said Steven, sounding frustrated and impatient. After his chemo, he started researching options. Interleukin-2 (IL2) was available but its reputation was brutal. “I was told it had a 6% survival rate for someone in my situation,” Steven pauses, the memory hangs in the air. The regimen was brutal. “I would go to the hospital for a week, get IL2 every 8 hours for seven days, then go recover for three weeks before starting another cycle. My hospital time was spent in the intensive care unit for 4 cycles, over 4 months, and I had lots of challenging side effects.”
With limited options left, Steven was forced to sell his family business to protect his family and other interests. After all that, Steven asked his doctors if there was anything proactive he could do. He did GM-CSF, a drug used to fast-track the recovery of white blood cells following chemotherapy, for two years. But, once again, there was no protocol. The use of clinical protocols allows doctors to offer appropriate treatments and care. In typical Steven fashion, he turned a dead-end into a turning point. “I was curious about how drugs get to the doctor’s practice. Why were there medications that sounded so promising, yet weren’t tested and approved for melanoma?” He had found his mission.
Today, Steven Silverstein is a 15-year survivor of stage 4 melanoma. He’s also the Melanoma Research Foundation’s Chairman of the Board and his story underscores the MRF ’s mission to “transform melanoma from one of the deadliest cancers to one of the most treatable through research, education and advocacy.”
Steven is determined to see that the MRF funds grants with leading scientists. After all, “research” is their middle name. He has gotten to know many the doctors and scientists working to treat and cure melanoma. He is dedicated to making connections for people, to get them the kind of care he had to unrelentingly fight for himself.
Steven tells us he got involved with MRF because they’re patient-centric and grassroots. “It resonated. I like the buddy program, meeting people and working with them 1-1. The local events keep it real and it’s very gratifying to help other people.” In fact, MRF has a community fund-raising toolkit for smaller markets to do events, inspired by a personal story. “I spoke with a woman in a remote area who had lost her son. She apologized for only being able to raise a small amount. She does a pizza party once a year, educating 20 or so people about melanoma prevention. Well, I couldn’t accept her apology. Because, within a few years, she had educated her entire community about sun safety and melanoma! So, the money was really secondary!” He continues, “THIS is MRF. It’s not just about the fund-raising, it’s about education, dollars raised AND people touched.”
In addition to the MRF’s science grants, education materials and symposiums, the organization promotes advocacy. In 2009, MRF started a program through the Department of Defense, including 4-5 cancer groups sharing 4-million dollars. Today, through their continued advocacy efforts and the help of the great team at the Melanoma Research Alliance, that number has grown to $80 million to be shared between 17 cancer groups. Steven proudly notes, “Out of $250M of research funding to 2017, melanoma got $50M. MRF also funds $1-1.5M per year themselves.”
Steven Silverstein, MRF Chairman of the Board, is a volunteer. He tells us that 60% of their board members are stage-4 survivors. They are patients from various trials over time. They are all volunteers. They are all warriors.
Steven started this journey when his daughters were teenagers. He has now lived to attend both of his girl’s weddings and hold his first grandchild.
