Elisa Moncarz, a Miami resident, was always a very healthy person who rarely went to doctors. But in April 2013, she visited a dermatologist because she had a strange rash on her leg. Unbeknownst to her — and the dermatologist — it would later prove to be a rare form of skin cancer.
The dermatologist gave me a cream to use, but the rash continued. And worse than the rash, my leg was totally swollen. Another doctor said it was probably a circulatory problem, and that’s all. I was traveling a lot at that time, so I attributed the problem with the leg to the flights.
But by December 2013 that leg was about two times the size of the other leg. It was awful. I went to a heart specialist, because I’d thought the trouble with my leg had something to do with the heart. An ultrasound found a blood clot in the leg. They sent me to the ER.
The next day, a doctor came over and said, “You need an oncologist.”
I said, “I need an oncologist? For what?”
My mother and sister died of cancer very young. And my husband was diagnosed with cancer eight years ago. So, I knew what cancer was.
When I saw the oncologist, he said that most likely it was lymphoma, and we needed to do a bone marrow test.
The next time I saw him it was Dec. 24. He couldn’t even look in my eyes. He said, “I have good news and bad news. The good news is we don’t need the bone marrow test. But the bad news is this is much worse than that.”
Elisa was diagnosed with stage 4 Merkel cell carcinoma, a rare and highly lethal form of skin cancer.
He kept talking, and I couldn’t understand what he was saying. He said, “This is really bad.” He said I had a few months to live. “We’re going to start chemo today,” he said, “and hopefully, you’ll get a little bit longer, but it’s very unlikely it will get to a year.”
It was the most shocking experience, because I had no expectation of that.
Elisa got her first dose of chemo that day. On Jan. 6, based on a personal recommendation, Elisa, her husband and two of her three sons flew from Miami to Seattle to see Dr. Paul Nghiem, a Merkel cell carcinoma expert at Fred Hutchinson Cancer Research Center and the University of Washington. Nghiem confirmed Elisa’s diagnosis, and recommended proceeding with her second cycle of chemo followed by a scan to see the chemo’s effects on the cancer.
I didn’t think the chemo was that terrible, and I was even traveling and going places in the weeks between each round. But in the meantime, what I was doing was getting ready for the inevitable. I wrote a letter to my husband, each of my sons and grandkids and a few other people, and I even wrote my own eulogy.
I wasn’t falling apart at all, which was very surprising to me. I was going on with life as much as I could. When things got really bad, one of my cousins from California started calling me every night and we’d talk for hours. We weren’t talking about my situation; we were talking about different things, sometimes politics, sometimes something from our childhood. That distraction helped a lot.
I had a grandchild who was going to be born in the summer. It was February or March, and I remember asking Dr. Nghiem, “Can I make it in good shape to the summer to see her and attend her naming ceremony in Miami?” He said I had a 50 percent chance.
My cancer had some response to the chemo, but it was not expected to last. In the meantime, I continued taking it one day at a time. Not thinking so much what would happen a week or two or three later. I met my granddaughter in June 2014.
Then, a few days after my granddaughter’s naming, there was a recurrence. The cancer became active, the lymph nodes started growing even more.
[At our first meeting,] Dr. Nghiem had mentioned to me that they were going to open a clinical trial of a new anti-PD-L1 [immunotherapy] drug by Merck, now called avelumab. He’d said that I should try to get in, that that would be the goal, because there was a possibility that I would respond to it.
For me, a clinical trial was, you get something, and someone else doesn’t get it, and you don’t know if you’re the one getting the drug or not. Some of my friends and relatives told me, “You have to be careful, because you can’t afford to get nothing.” But after I got some more information, I realized this type of clinical trial was completely different.
Our middle son had become a member of the Merkel cell support group and learned that the anti–PD-L1 clinical trial’s first site had opened in New Jersey in July 2014. He obtained all the trial information and made the necessary arrangements for him, our youngest son, my husband and I to visit the Cancer Institute of New Jersey on Sept. 4, 2014.
Under the care of study leader Dr. Howard Kaufman of the Rutgers Cancer Institute of New Jersey, Elisa received her first infusion of the experimental drug in October 2014 as one of the trial’s first participants. (As she had learned, in this trial, all participants received the drug.)
It was a very difficult time, but somehow, I continued doing it. I live in Miami, and this is New Jersey, over 1,000 miles away. I had to take a flight every two weeks, back and forth, including in the winter with the snow. In November 2014, I requested a wheelchair to go to the plane, which I’d never done before — that leg was in terrible pain. The doctor said that was a side effect of the immunotherapy. But it got better.
In May 2015, Dr. Kaufman told me that he was almost sure I was a complete responder [meaning that all signs of the cancer had disappeared]. So, he said, let’s continue to monitor. And, finally, in October 2015, he told me that I’d be finished with the treatment phase of the trial. Everything appeared to be OK. My scans the last few times indicate no evidence of cancer.
During the last four years, at the beginning, I would not make plans for more than a week or two. Eventually it was three to four weeks. Right now, even though things are OK, I feel that I cannot make plans for next year. I’m not ready for that.
Before this happened to me, I didn’t realize how strong a person I am. In my case, that strength comes from when I was extremely young and I had to deal with my mother’s and my sister’s deaths within a two-year period, at a time when I was a new immigrant to this country from Cuba and going to college. I had no choice but to become strong because of that, and that is helping a lot now. At the same time, the support and encouragement of my family as well as having world experts in Merkel cell and immunotherapy (Drs. Kaufman and Nghiem) at my side gave me confidence and helped me tremendously during my difficult journey.
My youngest son got married in November 2016, and they’re expecting a baby now. I never expected to go to that wedding. Before their wedding, they asked me to say a few words at the welcome dinner. At the dinner, I said that I was overwhelmed with emotion because it was a true miracle that I was there that night. Everybody knew exactly what I meant.