Taking Multiple Myeloma Care to ‘Another Level’
Mark Pentecost was on top of the world one Friday night in March 2016. The founder of wellness company It Works! was playing in a company fundraiser football game with celebrity quarterback Tim Tebow. He felt good — strong, athletic and healthy.
That all changed Monday morning when his doctor called him with the results of some routine tests. Pentecost had multiple myeloma, a type of blood cancer involving plasma cells. The disease was aggressive and he needed treatment immediately.
“I went from, ‘I am still athletic and pretty good’ to Monday, when I am like, ‘What?’ ” said Pentecost. “Three of my four grandparents lived to their mid-90s, so that was the plan I thought I was on.”
The news sent immediate shockwaves through Pentecost’s family, especially his wife, Cindy, who has watched multiple family members and close friends die from cancer.
“My concern was here we go again,” she said.
The call had come just minutes before stepping onto a plane to travel to an It Works! event, giving the couple little time to process the news and decide how to tell their three children. At the event, Mark Pentecost spoke in front of hundreds of his sales force, trying to give the keynote motivational speech, while in the back of his mind knowing he had to face the lifechanging news he just received.
He didn’t know what his next steps would be. But he knew not beating cancer wasn’t an option.
Looking for a Cure
Multiple myeloma is a relatively uncommon cancer, making up about 1% of all cancer diagnoses. While the disease can be successfully managed in some patients for years, there is no cure.
Dr. Kenneth Shain, medical oncologist and scientific director of the Moffitt Myeloma Working Group
“Multiple myeloma is very heterogeneous, meaning it’s very different from patient to patient,” said Kenneth Shain, MD, PhD, a medical oncologist and scientific director of the Moffitt Myeloma Working Group. “And even with a given patient the disease can change over time and those changes lead to treatment resistance.”
This has caused hematologists to look at multiple myeloma differently than other cancers that are treated with curative intent. Instead, multiple myeloma can be considered more of a chronic disease, where patients often face an unending cycle of successful treatments followed by relapse.
“Eventually, myeloma wins,” said Shain. “But if we have more options and better options, that means more ways we can keep our patients chronically controlled over many, many years.”
Decades ago, the average survival rate for multiple myeloma was two to three years. However, recent treatment advances such as stem cell transplants, antibody therapies and CAR T therapy have increased survival rates to about seven to 10 years and likely even better with contemporary treatment strategies.
“Despite these improvements, there is still a lot of work to be done,” said Rachid Baz, MD, section head of Myeloma in Moffitt’s Department of Malignant Hematology. “We want to be able to think of treatment as curative in the future.”
With that cure in mind, Moffitt’s Myeloma Working Group was established to find new, personalized treatment options for patients that can prevent future disease relapse.
When Mark Pentecost learned he had been diagnosed with a cancer that had no cure, he and his family refused to believe it.
“We are aware there isn’t a cure, but baloney,” said Cindy Pentecost. “We never believed that and we wanted everyone else to get to the point where they realized, too.”
Mark Pentecost started chemotherapy at Moffitt and began traveling around the country seeking multiple medical opinions. He went through the grueling process of a stem cell transplant, losing all his hair and muscle tone.
“I’d see myself in the mirror and be like, ‘Who is that?’ and then ‘Oh, that’s me,’ ” he said.
After his transplant, he realized he felt most at home at Moffitt Cancer Center and chose to continue his treatment under Baz’s care. He started a maintenance program, which he continues today, taking a chemotherapy pill three weeks out of each month. His disease has remained stable for six years, and the special relationship he has built with the Multiple Myeloma Program inspired him to start giving back.
The Pentecost family donated $3 million to the program in 2018, resulting in the creation of Moffitt’s Ex Vivo Mathematical Myeloma Advisor, or EMMA. The tool can test a cancer patient’s sensitivity to dozens of drugs at one time to determine the best treatment.
Drs. Kenneth Shain, left, and Rachid Baz are seeing major developments with the Moffitt Myeloma Working Group thanks to donations from Mark Pentecost and his family.
“At the core of what we are doing is to try and figure out what is different about patient Y versus patient X, and can we give the right therapy at the right time for the right patient?” said Shain. “EMMA helps us find the best path.”
“I find it a shame that people get cancer and they have to guess which treatment they are going to take, and it may or may not work,” said Cindy Pentecost. “I would like to get to the point where they take your blood and say, ‘OK, this one is going to work for you. At least if you have a chance, this is the one.’ ”
Since its creation, more than 700 patient samples have been analyzed by EMMA and tested with more than 200 different drugs. Not only does this help predict best treatment options for those patients, but now physicians can use the data to try to identify new treatment biomarkers and determine the best way to sequence therapy.
Dream Bigger
At It Works! team members are often told to reach for “a whole ’notha level.” Whether it’s adding another story to the corporate headquarters building or finding new ways to elevate ideas, Mark Pentecost motivates his team to always dream bigger.
Last year, Mark Pentecost’s team at Moffitt asked him to do the same. Was he willing to go up “a whole ’notha level?”
“And I said, ‘How can I not support that when they use my own language against me?’ ” he said. “That’s when they said they want to find a cure and that got us really excited. For me, I always wanted to know there’s a cure. I wanted to have something to fight for, an end to the race.”
The Pentecost family and the Multiple Myeloma Program are now dreaming bigger than ever, thanks to a second donation of $10 million to establish the Pentecost Family Myeloma Research Center at Moffitt. The goal is to leverage existing expertise from across the cancer center to find a cure for multiple myeloma within the next 10 years.
“We want to try and develop therapies that are not just the cookie-cutter approach,” said Baz. “We want to develop new therapies that are a bit more personalized and aim at curing the disease.”
The research center will tackle myeloma from multiple levels, including finding better ways to predict which patients with precursor diseases, like monoclonal gammopathy of undetermined significance, are at highest risk for developing multiple myeloma. It also will utilize clinical trials to continue work in determining which treatments work best for certain patients at certain times, help accelerate drug discovery, boost translational research and promote community education outreach.
“Multiple myeloma is a tough disease to say we are going to cure tomorrow, but if we continue to drive change, we hope that this will translate to increased numbers of patients in whom we actually are invoking curative intent therapy, meaning we never have to treat them again or we develop enough ways to maintain their disease long enough that multiple myeloma doesn’t take them from us,” said Shain.
A Marathon, Not a Sprint
If his cancer journey has taught Mark Pentecost anything, it’s patience.
“I had to be patient and literally a patient,” he said. “I realized I couldn’t just sprint to the finish line. It’s not just go to the doctor, get some medicine and get well. I had to go through the entire process.”
Going through that process reminded him how important his spirituality and relationships are and how much he leans on his wife and kids. He may not know where his finish line is and when he will get there, but he knows with new funding and resources, Moffitt will continue to be at the forefront of advances in myeloma.
“Selfishly, I want to see a cure for multiple myeloma, but I am excited to see how this plays out because if we can get people to use the ‘cure’ word and we are eventually finding cures, that is amazing,” he said.
