ImmunoAdvocates Mary Elizabeth Williams Melanoma Mary Elizabeth’s Story For Mary Elizabeth Williams, a New York-based writer and mother of two, the hardest part of having stage 4 melanoma was imagining what her family would do without her. Her spouse, and her daughters, then age 7 and 11—how would they cope with the loss? In late 2011, that thought loomed in Mary Elizabeth’s mind as she prepared to begin conventional treatment for what all medical sources told her was a terminal illness. Then, at the last minute, she learned she was eligible for clinical trial of a promising new immunotherapy being conducted by Jedd Wolchok, M.D., Ph.D., at Memorial Sloan Kettering Cancer Center in New York City. The trial was a study of two checkpoint inhibitor drugs, ipilimumab and nivolumab (made by Bristol Myers-Squibb), for patients with metastatic melanoma. Both drugs are antibodies directed at specific “braking” molecules, called checkpoints, on immune cells. By “taking the brakes off” the immune response, the drugs enable a more powerful anti-cancer response. Mary Elizabeth began treatment with the two immunotherapy drugs in November 2011. By January 2012, she knew the treatment was working. As a staff writer for Salon.com, she chronicled her cancer journey in series of articles. UPDATE, September 2019: Mary Elizabeth Williams remains cancer-free and spoke at the CRI Immunotherapy Patient Summit in New York City on September 7, 2019. Questions and Answers How and when did you first learn you had cancer? In the summer of 2010, I discovered that I had a little scab on the top of my head and I didn’t think much of it for a while. I just assumed it was a scrape or a reaction to my shampoo or something. I went to my dermatologist and she said, “That looks like skin cancer.” Even then I still wasn’t concerned. I thought, well, skin cancer, that’s not so bad. That’s not like real cancer! Then a few days later I was sitting at my desk, getting ready to file a story, and the phone rang. And my doctor said, “I’m very sorry. It’s malignant.” The next day, I went to Sloan Kettering and I met my brand new oncologist. I had surgery. I told my family. I told my friends. I went through it, I went through the recovery. I was told the margins were clean. Everything seemed great. People started calling me a survivor. And then about a year later on a CAT scan there were some spots on my lungs. I went in for some more testing and I had a surgical biopsy and they told me that it was malignant again. The cancer had broken off, it had metastasized into my lungs. That’s when I was told I was stage 4. How did you learn about immunotherapy and why did you decide to do it? When my doctor first told me about the option of a clinical trial, I was incredibly skeptical. I didn’t know anything about clinical trials, but I knew I didn’t like the sound of them. I thought it sounded very risky and very scary. I thought, well, they’re not going to give me real drugs. And if they do give me the real drugs, these are drugs that haven’t worked anyway, and so it’s probably not going to work. But I also knew this was really my one chance. So I went in and met with Dr. Wolchok who explained to me what was really going to happen in this trial and what we were going to do together as a team. And that changed everything. Once I had that conversation and I got more information about my particular trial, and about immunotherapy, I started to get hopeful. For the first time. What was treatment like? Did you have any side effects? I started treatment a couple weeks after my diagnosis at stage 4. First, I had to do a lot of testing to get into the trial, they had to do a lot of blood work. When you’re in a trial, they ask something of you in return, which is mostly blood and tissue. And then I started the treatment and it’s a combination of two drugs. So when I go in, it almost looks like traditional chemo in the sense that I go and I sit in the chemo chair and I get the IV and I’m there for several hours. But what was exciting about it was: it wasn’t painful, it wasn’t scary, it didn’t hurt. I signed off on a long list of possible side effects and held my breath and went home and waited to see what was going to happen, and not a whole lot did. But what was really exciting was when I went back one week later. My doctor looked at my tumor and it had started getting smaller. What would you want another patient to know about immunotherapy or about participating in a clinical trial? There’s no question in my mind that immunotherapy saved my life. I had stage 4, my cancer was galloping through my body at a rapid clip and the trial that I was on stopped it and reversed the course in three months. When I tell people about that, their minds are blown. My mind is still blown by what happened with me. I had a friend in my support group say to me, “My doctor said there’s nothing they can do.” And I said to him, “Please make some phone calls and see if you can get yourself in a trial.” And he made some calls and he got into a trial and now his tumors are shrinking. That’s what you get when you talk to people. That’s what you find out. What I tell everyone is: don’t Google “worst case scenarios” because you’re not going to get good news. And be really careful of the information you let yourself get. Be sure that you advocate for yourself and don’t just necessarily take the first bit of information you get from the doctor down at your hospital. Find out what’s out there.