Consumer Involvement
Ken Billett
MRP Consumer Reviewer
Ken Billett
Like most advanced melanoma patients, Ken Billett’s cancer journey has been full of ups and downs, along with several twists and turns. Ken’s journey began long before his first skin cancer diagnosis in 1995. Ken grew up near the Gulf Coast beaches of Florida in the 1960s and 1970s. A time when sun protection consisted of a floppy hat, a white t-shirt, and suntan lotion. Many trips to the beach ended with red, raw shoulders and a burned nose. With light-brown hair, blue eyes, and a seemingly infinite number of freckles, moles, and skin blemishes, Ken was at high risk for skin cancer.
The first major twist in Ken’s journey occurred in 2011, when a previously biopsied lesion tested malignant, and Ken underwent surgery to remove a Stage IIC tumor along with a tennis ball-sized area of surrounding tissue from his upper back. The surgery included an extensive skin graft that causes stiffness and limited range of motion to this day.
Ken and his wife, Vicki
On July 24, 2013, a major turn in Ken’s journey occurred when a PET scan revealed melanoma in his lungs. Metastases were likely from the malignant tumor removed in 2011. His oncologist believed that a tiny bit of melanoma had escaped from the primary site via his bloodstream.
An additional twist to his 2013 diagnosis was based on simple genetics. Ken’s metastatic melanoma was somewhat atypical. Two separate laboratories confirmed that Ken’s melanoma had a c-Kit mutation, which is found in less than 7 percent of all melanoma patients. This rare mutation, however, responds well to a specific oral chemotherapy drug. Once Ken started taking this medication, some of his tumors significantly shrank.
Ken Billett
For the next 6 years, Ken’s metastases remained relatively small and stable. In that time, he actively advocated for skin cancer prevention and more research on melanoma treatment options. He volunteered with several national melanoma organizations, including the Melanoma Research Foundation (MRF), and shared his journey story with several online publications.
In 2019, Ken was nominated by the MRF to be a consumer reviewer for the Melanoma Research Program. For Ken, his nomination and subsequent selection was both humbling and eye-opening. In his words, “To be part of a process that’s so much bigger than yourself, that has the potential to impact so many lives, is truly inspirational.”
Ken was most impressed with the dedication and caring shown by members of the scientific review panel. According to Ken, each research application was carefully scrutinized, and the benefits to the consumer community (i.e., the military community and the general public) were weighed against the potential scientific innovations.
Ken and his wife, Vicki
In 2020, Ken’s journey took another significant twist when melanoma spread to his right adrenal gland. He is now on an immunotherapy drug, and his slow-growing tumors have so far positively responded to this new treatment regimen. Ken continues his advocacy work as a Community Advocate for Skincancer.net, as well as a mentor to other patients with late-stage melanoma and a patient spokesperson on pharmaceutical company focus groups.
A former schoolteacher and corporate benefits manager, Ken is now a freelance writer and an up-and-coming author. He enjoys gardening and listening to blues music. When not writing or tending to his flowers, Ken and his wife, Vicki, travel extensively.
Last updated Friday, December 13, 2024