With Cutting-Edge Immunotherapy, Amy Boles Defies The Odds of Advanced Melanoma
Amy Boles sat on a stool next to the doctor she credits with saving her life as she shared her experience with a deadly form of skin cancer that spread and nearly consumed her entire liver.
“I still really struggle to believe this is true for me,” Boles said.
She was sharing her story as part of a Q&A 'Appetizers & Advocacy' event presented by the Massey Alliance in Richmond. Andrew Poklepovic, M.D., her hematologist-oncologist at VCU Massey Cancer Center, joined her to discuss the cutting-edge immunotherapy treatments that saved her from advanced melanoma and the medical breakthroughs in cancer therapies that are helping to turn the tide against cancer.
IT STARTED WITH A LUMP
Boles was living the good life just before she received her cancer diagnosis.
Chasing a fondness for the West Coast, Boles moved to Portland, Oregon, in April 2015. She traveled cross-country with her father and moved into a two-bedroom apartment with her friend living upstairs as her landlord. Weeks after moving in, she received a phone call from her previous employer, a mortgage company, with an inviting new job offer.
That September, she was enticed by her friends with free airplane mileage to return to the east coast for a vacation at Smith Mountain Lake in Virginia.
“Everything made sense in my life,” Boles said.
But on Sunday morning at the lake, she noticed a lump on her left ribcage.
“It didn’t hurt and it wasn’t a weird color, and I had no idea how long it had been there,” she said, attributing that trip to the lake as a moment that saved her life because she is not one to routinely inspect herself. “I wasn’t dating anyone. I don’t take baths. Showers are just business. What I’m saying is, I wasn’t around my body a lot.”
She returned to Portland, continued to work and did not mention the lump on her ribcage. Eventually, she told a friend who convinced her to see a doctor.
Boles, whose sense of humor was outwardly present as she reflected on her experience, said she scheduled an appointment at a “a hippie version of urgent care.” She was told that the lump was of no concern and to come back for another visit if it became painful.
The following week she began experiencing flu-like symptoms.
“I was run-down, really tired and didn’t have an appetite. I drank fluids, ate crackers and got a bunch of rest,” Boles said.
On October 30, she wasn’t feeling any pain, but she found it nearly impossible to stay awake. She had some blood work done, and by the time her results were in, she was so dehydrated and exhausted that she could barely walk the length of her driveway.
She experienced a fever and noticed severe pain when her doctor pressed on the right side of her stomach, so she was admitted to a hospital.
Under the impression that she was undergoing extreme dehydration, Boles was completely blindsided when a group of doctors entered her room and informed her that the lump was a cancerous cyst—it was stage 4 melanoma and she had 11 masses in her liver.
Melanoma is the deadliest form of skin cancer, more likely to spread to surrounding tissue and organs than other types of skin cancer. In 2017, it is estimated that there will be more than 87,000 new cases of melanoma and more than 9,700 deaths related to the disease, according to the National Cancer Institute.
Following her diagnosis, Boles said she was comforted by something one of her doctors said to her.
“She told me, ‘Amy, this is nothing that you did and nothing you didn’t do.’ It was really beautiful. I needed that,” Boles said.
Accompanied by her relatives and a nursing friend, Boles visited an oncologist for the first time to discuss treatment options and get a prescription for dabrafenib and trametinib – targeted chemotherapy drugs for certain types of mutations in melanoma.
The oncologist then asked Boles if she would like to see her PET scan, at which point she began to cry.
“He said, ‘Why don’t you look at it after some chemo and you can look at them side-by-side? You can see how far you have come.’ It got quiet in the room, and I asked him if I was in bad shape medically. He got really still and his face turned red. He said, ‘Yes.’ When I left his office, I said ‘Nice to meet you, but not really.’ We both laughed, but I meant it,” Boles said.
AN IMMUNE SYSTEM UNLEASHED
She followed her pill regimen from November through March 2016, and she moved back to Virginia to be closer to her family and a larger group of friends. It was at this time that she scheduled an appointment with Poklepovic at Massey.
By this time, the cancer had taken over more than three-quarters of Amy’s liver.
“It was really large. I knew that if we couldn’t get her cancer under control, there would really be a problem,” Poklepovic explained.
Poklepovic said that he decided to treat Boles with immunotherapy, a form of treatment that induces the body’s own immune system to recognize and kill cancer cells. Her specific regimen was a combination of nivolumab and ipilimumab. Nivolumab blocks proteins that inhibit immune response and activates T-cells (a type of white blood cell that is of key importance to the immune system) to attack tumor cells, and ipilimumab accelerates the immune defense by sending an increased volume of T-cells to kill those cancerous cells.
“Poklepovic knew I was scared, and that’s when he said, ‘These drugs are scary. But cancer is scarier,” Boles recounted.
After her first round of immunotherapy in May 2016, Boles began having headaches. Then she began to experience a flurry of additional symptoms, including a full-body rash, intense itchiness, low heat tolerance, exhaustion, sleeplessness, dehydration, and her eyelashes turned blonde, among others.
“I was just very good at side effects,” Boles said with a retrospective laugh.
To deal with her long list of side effects, Poklepovic prescribed Boles prednisone, an immunosuppressant drug, and the rash subsided shortly afterward.
Following her second round of treatment, Boles developed a rash again, at which point Poklepovic took her off the ipilimumab so as not to cause any more serious medical concerns.
After her third treatment – this time only nivolumab – Boles went in for another follow-up appointment. She felt better than she had in six weeks. Shortly after explaining to Poklepovic that she felt better, a nurse walked into the room to hand Poklepovic a sticky note. He looked at Boles and told her she had to be admitted to the hospital through the emergency room immediately because her potassium levels were alarmingly high.
“She was having a hard time breathing and she was having chest pain. The immune system can go after any part of the body. I was worried that it was actually inflaming her heart,” Poklepovic said.
Over the course of the next several months, Boles’ electrolyte and potassium levels continued to flip-flop to dangerous numbers, and Poklepovic was unsure why this was happening. The standard treatment with prednisone was not working.
After multiple consultations with kidney specialists, endocrine specialists and his wife, Tammy Spring, a rheumatologist who treats autoimmune diseases, Poklepovic eventually put Boles on CellCept, an immunosuppressant normally prescribed for patients who have had organ transplants to prevent them from rejecting the organ.
Within about a month, Boles stopped having to return to the hospital, and after two months she was able to taper off CellCept entirely.
In April 2017, Boles said she had an epiphany where she decided she was determined to overcome her malignancy. She went in for a CT scan the following week, and her nurse Alison Smith, N.P., entered the room and told her that she had “no evidence of disease, no active cancer.”
“I think she kept talking, but I didn’t really hear anything she said after that. I remember asking if we could have a minute. It felt like this really beautiful minute about this completely impossible thing, thanks to tons of nurses, doctors, my family, my friends and to you,” Boles said, tearing up and turning to hug Poklepovic.
Poklepovic said that if you compared her CT scan from November with her most recent one that you wouldn’t be able to tell they were from the same person.
“There is a leftover scar in her liver that is the width of my thumb from a disease that covered 80 percent of the entire organ,” he said.
DEFYING THE ODDS
Boles is working to return to a regular life, and on the Monday before sharing her story in public, she had achieved the goal set for her by Poklepovic to step foot again on a tennis court.
“This has been a crazy, bumpy ride, and I still long for it to not be true. Every day, even now, is its own thing. I am getting help from everywhere, and I need help from everywhere. The mind game is the hardest thing for me,” she said.
Boles had a follow-up appointment in June, and all of her results came back clear.
Poklepovic said that advancements in immunotherapy research are transforming cancer care every day and are allowing many cancer patients to be able to return to their former lives.
“We are really just lifting the lid on this box of possibilities. If we can start to harness patients’ immune systems and use drugs that really kill cancer, we can truly change the outcome for people living with cancer from here forward,” he said. “I can tell every single melanoma patient that walks through my door, no matter what their stage of disease, I am treating them for the long term. That is Massey’s goal.”