Sun & Skin News

A New Frontier: What It’s Like to Experience Immunotherapy Treatment for Merkel Cell Carcinoma

By Ali Venosa • October 31, 2019
Luis C

When Luis Carrazana, 57, received a phone call from a nurse at Memorial Sloan Kettering Cancer Center in New York City, he had a feeling it would be bad news. He had previously been treated for Merkel cell carcinoma (MCC), a very dangerous form of skin cancer, at the hospital, and it had been more than a year since he had developed any new tumors. His gut feeling was right: The nurse he spoke with told him his cancer was back, and its location made the tumor inoperable.

Luis asked what he could do, and the nurse urged him to go in and speak with Sandra P. D’Angelo, MD, a medical oncologist at MSKCC. Luis didn’t see how this could help — he had already undergone surgery and radiation to treat his MCC, and Dr. D’Angelo had previously said chemotherapy wasn’t an option due to the nature of the cancer and his existing health conditions. Luis went in to see her anyway, and she explained that there was one more thing to try: a clinical trial with a new immunotherapy drug. Dr. D’Angelo explained the new medication, how it would work, the possible side effects and the chances it could help Luis.

“Initially I was very reticent,” he says. “For the rest of my life, every two weeks I would have to go in and get an IV attached to my arm and be treated. I didn’t know if I wanted that.” But Dr. D’Angelo strongly encouraged Luis to try.

“I will never, ever forget what she told me,” Luis recalls. “She said, ‘I’m trying to save your life. We can do this or not do this, but I think we should try it for a little while.’ She told me to go home and think about it.” Instead, Luis put his head down right there and thought about it. He knew how aggressive MCC could be. He remembered the first time he looked the disease up online and read that it had a very high mortality rate. Above all, Luis trusted Dr. D’Angelo, who he had come to know as intelligent and caring throughout his treatment process. She believed the immunotherapy could help.

Luis decided he didn’t need any more time to consider. “I signed the paperwork right then, and I began the treatment a couple weeks later.” He would start treatment with avelumab, one of two FDA-approved immunotherapy drugs for MCC. (The other is pembrolizumab.)

“You can think of these two medications like Pepsi and Coke,” says Kelly Paulson, MD, a senior hematology/oncology fellow in Fred Hutchinson Cancer Research Center’s Clinical Research Division. “They work very similarly and have similar side effect profiles. They’re both given intravenously every two to three weeks.”

At first, Luis thought the treatment would be much more involved. “I thought maybe the IV treatment would be like dialysis, what I imagine is like being tied to a machine, and your whole life centers around that. This is very different. It’s almost like taking a vitamin shot every two weeks.”

Luis says that his medical team was careful to monitor him every step of the way. “The process and the amount of care was almost overboard in terms of making sure that everything was OK,” Luis says. “When I first felt it going through my veins, it was a tickling feeling. I worried about that and thought it might be the beginning of an adverse reaction. It wasn’t, but all kinds of things go through your mind, and it’s really reassuring to have a team that asks you those questions: ‘What’s going on? Anything new? Any rashes? Are you feeling sick?’”

Luckily, Luis didn’t experience any serious side effects from his treatment. According to Dr. Paulson, between one in three and one in five patients will. “The most common side effects are fatigue and flu-like symptoms because you’re activating your immune system to fight the cancer, so you feel kind of like you have a virus,” she explains. “You might be a little tired, a little achy, maybe have a bit of a fever. Usually those get better pretty quickly after people get started.”

Some patients deal with tougher side effects that often seem like those experienced by people going through chemotherapy, including nausea and hair loss. But Dr. Paulson says the difference is when people get chemotherapy, they expect to feel bad for a few days or weeks after the treatments, then they feel better. With immunotherapy, the serious side effects can start weeks or even months after the treatment.

Other side effects are an overreaction of the immune system — people can have rashes, diarrhea that resembles inflammatory bowel disease, colitis, trouble breathing, inflammation of the lungs called pneumonitis and other autoimmune diseases. These can range from thyroid disease to diabetes to lupus. “Most people don’t actually get these serious side effects, but they’re something we watch very closely for during treatment,” says Dr. Paulson. “We have no good predictors for who is at a higher risk of these serious side effects.”

Despite the potential downsides, for most patients the potential benefits of immunotherapy outweigh the risks. Physicians can’t tell before they begin which patients will have a favorable response to the treatment, but for those who do, the results can be more than they hoped for. Luis recalls sitting in the waiting room with his family a few weeks after he began treatment, waiting for the results of a CT scan to determine if the immunotherapy had affected his tumors at all. “Five minutes went by, then 10, then over half an hour,” Luis says. “I was thinking, This is not good news. If it’s taking this long, it’s really not good news.

Luis was happily mistaken — the results showed that his tumors had been reduced by 42 percent. “I hit the ceiling,” he says. “We were laughing, crying, hugging.”

Luis was initially told he had an estimated year and a half to live. That was four years ago. “In the very beginning, I thought MCC was a death sentence. I’m still here, and I didn’t expect to be,” he says. “But now I expect to be here for a while. I feel like the future is bright for me and other people [diagnosed with the disease]. The advances are coming, and all of the credit goes to the people who wake up every day and make it their goal to help people like me get well.”

Though Luis credits doctors like Dr. D’Angelo for working tirelessly to bring effective treatments to MCC patients, he says it is his own family that got him through his ordeal. “Having a strong support group, people who care about you, is invaluable,” he says. “It gave me the strength to go through anything that I had to go through. I knew I wanted to live, but receiving that call sunk me into this reality where I felt defeated in a way. It takes people to bring you back out again. They gave me so much strength.”


This post is part of a patient education series made possible through a grant from EMD Serono and Pfizer. Learn more at EMDSerono.com.

Also part of the series:

Wife, Advocate, Motivator: When Someone You Love Is Diagnosed with Merkel Cell Carcinoma

What is Immunotherapy? Understanding the Newest, Most Promising Merkel Cell Carcinoma Treatment

Living with Merkel Cell Carcinoma: A Survivor Insures His Own Future