Marguerite Sullivan’s Immunotherapy Story

I was in my office and bumped my leg hard on my desk. This was in 2012. Then a few days later it seemed like the area was inflamed. I went to my doctor because it was not getting better. She put me on an antibiotic. That did not work. Then they thought it was a blood clot, so they set me up with a surgeon. I had surgery immediately, and he did a beautiful job. But when I went back for the follow up, he said “Where’s your husband?” Why would my husband come for a follow up visit? Well, that’s when he informed me that I had stage 2 malignant metastatic melanoma. Hearing those three M’s…it was a tremendous shock. From there, I saw an oncologist. I was back in for surgery immediately. The good news is my lymph nodes were clear, but they did quite extensive surgery on my thigh. Then the oncologist set me up with interferon.

Six months later (after surgery and interferon), I had another scan and the news came back that it was in my thigh and my lungs. So in June 2013, I sent my documents to Sloan Kettering and they called me immediately. I was assigned to the chief of melanoma—at that time it was Dr. Gary Schwartz. He gave me the real background of what’s going on inside of me and what is or is not available. That was a really tough meeting. He said to me, “With your diagnosis now, we’re talking six to nine months with conventional therapy.” 

Dr. Schwartz explained to me all about PD-1, nivolumab, and how it works to “release the brakes” on the immune system. And he said, “We’ve got to get you into this trial.” But the day before I was supposed to start the trial, the cancer ended up in my brain. And that meant I couldn’t enter the trial. 

But Dr. Schwartz said, “Don’t you worry, we can take care of your brain.” So they gave me radiation for that and also started me on ipilimumab. I ended up having a tremendously quick response to the radiation treatment, so I was able to enroll in the PD-1 trial after all.

By this point, the cancer was on my leg, it was in my lungs, and it was growing quickly. Every test showed it getting bigger.

I started nivolumab on November 13, 2013, and in eight days, my tumor decreased in size. The tumor on my leg got so small that I was having trouble finding it. Can you imagine? 

I truly feel that I’m here because of immunotherapy. I’m truly blessed. On July 3, 2014, I received a call from Dr. Michael Postow, who took over my case when Dr. Schwartz left, and this is what he said to me, “Hi poster child. You have had a 100 percent response.”

I have to tell you, I don’t miss a day of work. The only time I miss work is every other Tuesday at 2:15 p.m. I swipe out, I get in the car with my husband, and we’re off to the city for our “date night”—which is what my husband calls the time we spend together going to my treatments. PD-1 immunotherapy does not interrupt my life.

Lord. Interferon was horrendous. If you had the opportunity to meet me, you’d know I’m a very optimistic person, I have a great outlook on things. But while on interferon, I actually felt what it meant to be depressed.

We’ve had discussions about how there is a good chance that previous treatment with ipilimumab and radiation supported the PD-1 therapy. You probably know that some people are having combined therapy with ipilimumab and nivolumab. Of course, I didn’t have that because that wasn’t the trial. But in a way, I sort of did.

There was a moment last summer when I was looking at an online shoe sale and saw a pair of sandals I liked and thought, “Next summer? I don’t know if I’m going to need those sandals.” I was having one of those days. Then I turned around and said to myself, “I’m ordering four pairs.” This summer, my precious fifteen month-old granddaughter and I have put those sandals to good use.