James had advanced melanoma and dwindling treatment options when his doctors enrolled him in a clinical trial of ipilimumab, an innovative immunotherapy developed at Memorial Sloan Kettering. “I am one of the very lucky ones,” he says. “Ipilimumab doesn't work for everybody — but it worked for me.”
When a mole about the size of a pencil eraser appeared over the ribs on my right side in 1999, my wife, Jane, said, “Let’s get that checked.” But moles run in my family, and I was sure it was nothing. I was 51 and still very busy with my family and my job as a foreign exchange trader with Morgan Guaranty in Manhattan.
So it wasn’t until eight months later that I finally went to a dermatologist near our home in New Jersey to have the mole assessed. Two days later he called asking me to come to the office. He told me the mole was melanoma, the most serious form of skin cancer, and that I needed to see a surgical oncologist. After undergoing surgery around and below the site of the mole, a biopsy of the sentinel lymph node under my right arm showed that the melanoma had spread and was malignant.
Since that day I think I have had every emotion a person can experience: fear, sadness, frustration, relief, hope. But I’ve also felt amazement at the good fortune I’ve had.
A Bumpy Road
The doctor explained that most people with stage III melanoma have a 50-50 chance of the tumor returning — even if they have the cancer surgically removed and follow the standard treatment. At the time this consisted of infusions of interferon (an immune system protein) to help stop the cancer cells from growing and spreading.
Jane and I talked it over, and I decided instead to be monitored with regular CT and PET imaging scans. For about three years, I was just fine. We were both working hard, visiting with our two grown sons when we could, and raising a third son who was in high school.
Then I was sitting at work one day and stretched, just raised my arm. I felt a lump where I knew it shouldn’t be. A biopsy showed that it was melanoma that had spread to the base of the pectoral muscle in my chest.
That’s when, based on a recommendation from my surgical oncologist at NYU Medical Center, I went to Memorial Sloan Kettering and met [medical oncologist] Jedd Wolchok. After listening to my story and examining me, he suggested that I see his colleague [medical oncologist] James Young, who had openings in a clinical trial of a novel vaccine for melanoma. The experimental agent consisted in part of powerful immune system cells called dendritic cells.
The regimen worked for about three years, until a routine PET scan showed a melanoma growth on my right adrenal gland. Surgeons removed it and Dr. Wolchok put me on a drug (temozolomide, or Temodar®) licensed for treating certain types of brain tumors – and used “off label” for melanoma.
And then, unexpectedly, another type of cancer came barging into our lives. Jane was diagnosed with renal cell carcinoma, a type of kidney cancer. I was retired at that point and we had moved to Manasquan, New Jersey.
I was there with Jane through her illness. She died at the end of 2007, two and a half years after being diagnosed.
During 2006, tumors reappeared three different times. Twice they were single tumors on the side of my neck. I received an immune system stimulator (sargramostim) and high-dose radiation. In late December, I felt a pickle-shaped lump in my love handle [the oblique muscle on the side of the waist], and I was filled with dread. A CT scan showed that melanoma was in fact all over my body — in my kidneys, liver, and lungs.
Surgery wouldn’t work for me anymore. But this is also when I got very, very lucky.
Dr. Wolchok told me about another clinical trial at Memorial Sloan Kettering — of an experimental agent called ipilimumab (now known as YervoyTM ). It was based on a molecule that his colleague James Allison [Chair of the Sloan Kettering Institute’s Immunology Program] had discovered in the 1990s.
Called CTLA-4, the molecule prevents the immune system from attacking its own tissues. With a team of scientists and a biotechnology company backing, Dr. Allison had produced an antibody-based drug that could temporarily block CTLA-4 and allow the immune system to attack cancer cells. Dr. Wolchok was leading the clinical research that brought this drug to patients. They were finishing up enrollment and with two weeks left on the trial, I just squeaked in.
Path to a Cure — for Me
During the first three months, the drug didn’t seem to work. The tumors didn’t shrink; they actually grew. And all over! The cancer in my pectoral muscle and my liver blossomed. The clinical trial had been designed to evaluate the efficacy of different doses of ipilimumab, and it turns out I had been started on a low dose. Amazingly, when I was switched to the higher dose, the melanomas started melting away.
I had just made it in to the clinical trial for the first drug to ever show an ability to help patients with melanoma live longer. The US Food and Drug Administration approved ipilimumab for the treatment of advanced melanoma in March 2011.
As time goes on, the experts are learning that everyone reacts differently to ipilimumab. It may take one person six weeks to muster a T cell army to fight the cancer cells, while another person might not have an immune response for months. I am one of the very lucky ones. Ipilimumab doesn’t work for everybody — but it worked for me.
For several years, I received a maintenance dose every three months. I had a mild rash and itching as side effects, but otherwise I could pretty much carry on with my normal life.
Today I am still technically in the trial and closely monitored, but I don’t take the drug anymore and I have no evidence of cancer. Meanwhile, the doctors have been studying my blood to try to learn what makes the drug so effective for me.
And I have now started down a whole new path in my life. After all that I have experienced — both with my own cancer and Jane’s — I am training to be a registered nurse. It’s tough to go back to school at my age, but I hope it works out. I have been on the other side, and I think I could really help others.