Patient Testimonial from Acral Melanoma Thriver: Eric Niles

Guest blog post by acral melanoma thriver, Eric Niles:

“We may not be able to cure you, but we may be able to heal you,” said the professional staff at Commonweal’s California retreat for cancer patients and their caregivers. I found myself there with a diagnosis of Stage IV acral melanoma with a tumor in my liver and cancer in my bones. I was terrified of dying and overcoming that fear feeling was the healing I needed. But let me take you back to the start of this journey. 

About three years ago, a “routine” visit to a podiatrist for a bloody toenail led to a diagnosis of NRAS-mutant acral melanoma. Subsequent tests to stage the disease discovered a grape-sized melanoma tumor in my liver.  Overnight, I went from a very healthy fifty-six-year-old, to a Stage IV cancer diagnosis and an amputated big toe. A door closed on the life I had known and opened to the cancer journey ahead.

The first thing I did was engage my support network. My wife Margaret, an interfaith minister, was at my side for every step of this journey. I needed them in the room at my doctor’s appointments to be my eyes and ears (it is incredible what you hear or don’t hear in those first few months) and to support me at home during the darkest hours. My closest friends and grown children rallied around as well.

I was started on the only FDA-approved treatment for NRAS-mutant melanoma; a course of the immunotherapies Opdivo and Yervoy. The side effects of the immunotherapy included arthritis-like symptoms in my shoulders and legs. Four months and four infusions later and it was time to be scanned again. I was hopeful that the immunotherapy had worked (as it has for so many), but it wasn’t to be. The tumor in my liver was now the size of a grapefruit and new metastasis had formed in my ribs and on my sternum. There were no additional FDA-approved treatments for me to try so I began to quickly look for promising clinical trials. As luck would have it, the most relevant trial was being conducted at UCSF, a hospital a short distance from my Bay Area home.  

At our first visit, Margaret had the bravery that I lacked to ask our doctor, Adil Daud, if I was going to live. He got very quiet, made soft eye contact with us, and said, “I don’t know. Fifteen years ago, I would have said you have about a year to live. However, today I have too many tools to try to say such a thing. Can you give me a few months and I will give you a more definitive answer?” We said we could do that. In Dr. Daud I had found a caregiver in whom I could have complete trust.  

I started on the clinical trial medications, a combination of Trametinib (FDA approved) and Naporafenib (trial medication). These are two therapies aimed at targeting that NRAS and other mutations in my cancer. The side effects were not inconsequential. I had a bad rash on my face and across my body. I had muscle weakness and, ultimately, a bout of pneumonia that led to a dose reduction.  

But it was worth it. With these two drugs in my system my cancer just melted away. The tumor on my sternum disappeared within two weeks and the tumor in my liver quickly began to shrink. Six months later, when I had surgery to remove what remained of my liver tumor, it was discovered that the tumor had “died” and that no cancer cells could be found. I was declared No Evidence of Disease (NED) and have remained so for the last 26 months. Scans every two months have confirmed that result.  

In early October, I spoke as a patient advocate at a Melanoma Research Foundation conference on NRAS-mutant melanoma. This gave me a chance to be with the doctors and researchers that saved my life and to thank them for that gift. It also gave me a chance to describe my journey after being declared NED, one that was exceptionally hard but now finds me in a new and more grounded place. That door that closed behind me has opened to a new world where I am less afraid to die, more appreciative of life, and more wanting to make a difference for other melanoma patients. As the folks at Commonweal had promised, I had been healed.

Click here to watch Eric’s video testimonial, produced by ERASCA.