CLL Heroes Honored by CURE

Chuck Pagano doesn’t get emotional when he looks back on his diagnosis with the rare blood cancer acute promyelocytic leukemia (APL), or when he explains how sick the chemotherapy made him.

But that changes when the NFL football coach remembers the support he got from the team he was leading at the time. Pagano was in his first season as head coach of the Indianapolis Colts when he received his diagnosis and had to stop working for a while to undergo treatment. No one on the team knew him very well, but two dozen players and two cheerleaders shaved their heads as a show of solidarity, calling the effort ChuckStrong.

Pagano was incredibly moved by the gesture, and it helped fuel his stamina as he faced fear and a host of side effects. So, the coach understands how people with a different blood cancer, chronic lymphocytic leukemia (CLL), feel about the doctor and three patient advocates CURE honored Dec. 2 at its inaugural CLL Heroes celebration. Pagano spoke to a crowd of about 100 at a dinner recognizing the four heroes for their efforts to improve the quality of life for people with CLL. The disease is a bone marrow cancer in which B lymphocytes, a type of white blood cell, are not able to fully mature into healthy cells that effectively fight infection.

Honored at the event — which coincided with the annual conference of the American Society of Hematology — were John C. Byrd, M.D., a researcher and clinical specialist at the Ohio State University Comprehensive Cancer Center-James Cancer Hospital and Solove Research Institute who has helped develop novel drugs to treat CLL; Christopher Dwyer, host of the Facebook group Bad to the Bone — Living With CLL and founder of the CLL Canada informational website; Brian Koffman, M.D.C.M., a family doctor who has been diagnosed with CLL, runs a blog for patients and is co-founder of the CLL Society; and Lisa Minkove, honored posthumously for creating and running an international Facebook support group for women with CLL, small lymphocytic leukemia and non-Hodgkin lymphoma.

“I want to congratulate all the heroes,” Pagano said. “What you do, and what the people who support you do, makes the biggest difference in the world.”

Erik Lohrmann, vice president of CURE Media Group, also praised the heroes.

“These four individuals are remarkable and selfless people, the embodiment of what it means to be a hero,” he said. “What you have accomplished is impressive and inspiring. You have touched the lives of patients and their families in your own unique way. Your dedication and desire to help those with CLL is the reason you’re being recognized, and rightfully so.”

Lessons from the Football Field

Pagano told the audience about being diagnosed with APL shortly after getting his dream job with the Colts, his first position as head coach. The job was 28 years in the making, following a series of college and NFL jobs that had required his family to move 12 times.

Pagano was diagnosed after feeling fatigue, which he blamed on 18-hour days — until he started noticing bruising all over his body.

Instead of asking “Why me?” Pagano decided to apply football philosophy to his treatment and recovery. “There are no pity parties in life or football,” he said. “So, I asked the doctor about my cure rate odds, our game plan and what I would have to do to kick this thing’s ass.”

Pagano was treated with the chemotherapy Idamycin (idarubicin) and all-trans retinoic acid (ATRA), a high-dose form of vitamin A. Through therapy whose side effects had their own side effects, requiring more medications, he focused on the reasons he needed to persevere: to “be around for a long time for my wife and family, and get back to my football team.”

He also had faith in the expertise and help of the people around him, both in his personal life and at IU Simon Cancer Center at Indiana University — and in the tools they had at their disposal, including the drug regimen that has helped increase the APL cure rate from 50 percent or less to above 90 percent.

Since his recovery, Pagano and the Colts have turned the ChuckStrong movement into an annual NFL fundraiser that has brought in $6 million for cancer research at IU Simon. “I’m blessed to be here to give back,” he said.

In tribute to the heroes, Pagano told the story of U.S. Navy jet pilot Charles Plumb, who parachuted out of his plane when it was hit by a missile during the Vietnam War. Plumb ended up a prisoner of war but was eventually freed.

According to the story, Plumb later met a man in a restaurant whom he didn’t remember, but who seemed to know all about him. It turned out the man had put together Plumb’s parachute, saving his life.

The story highlights the importance of recognizing unsung heroes, Pagano said.

“I think about why we do events like this, why we get together, sacrifice, serve and give back,” he said. “All we’re doing is packing parachutes. I’m grateful for what you’re doing for everybody.”

Honoring the Heroes

During the event, each nomination essay was read and the heroes or their representatives were given awards.

Byrd was nominated by a patient, Delrina M. Clarin, who was unable to attend. In her place, high school student Joseph Lucas read the essay. He’s the son of Margaret Lucas, a physician assistant who works with Byrd and helps care for Clarin.

Byrd is a distinguished professor of medicine and medicinal chemistry who holds the D. Warren Brown chair in leukemia research in the division of hematology at his institution. Byrd has helped identify novel drugs that are effective against CLL and move them from the lab to the clinic, including Rituxan (rituximab), Lemtrada (alemtuzumab), Zydelig (idelalisib), Imbruvica (ibrutinib) and recently Calquence (acalabrutinib). He is also passionate about treating patients. He’s won many awards for his achievements, including the 2015 William Dameshek prize. He credited his team, including those in the audience, for helping him bring medicines to the CLL community.

“With a disease of this nature, patient anxiety is naturally elevated. Dr. Byrd’s compassionate understanding of the person is comforting,” Clarin wrote in her nomination essay. “When Dr. Byrd enters the examining room, the patient is the center of his focus and attention. He greets his patients as friends, as human beings first, extending to the patient dignity and respect, then he proceeds to look at the person’s illness or medical concerns. Dr. Byrd’s demeanor is one of genuine concern for the person, not just the disease.”

Christopher Dwyer, of Ottawa, Ontario, Canada, was nominated by patient Tess Bernacki. He’s a patient advocate who has spent years offering hope, encouragement and strength to others who, like him, are living with CLL. Because he was unable to attend the event, his daughter, Tara Mann, accepted the award on his behalf.

Dwyer launched the Facebook group Bad to the Bone — Living with CLL and is a top contributor to numerous online chat groups, including the Association of Cancer Online Resources CLL list and the CLL support group on the HealthUnlocked site. In addition, he founded the CLL Canada informational website. He volunteered at a board level for the CLL Patient Advocacy Group in Canada and was instrumental in launching CLL Live, an international, three-day, patient-focused conference. His work has inspired many patients to become advocates themselves. An avid photographer, Dwyer often includes images of flowers with his communications, a reminder of the beauty in life that persists despite the challenges of CLL.

“Chris has extensive knowledge of the disease and is always available to offer advice to fellow patients desperate for answers,” Bernacki wrote. “With his optimism, Chris gives fellow patients hope and the strength to continue on. Chris is dedicated to helping other fellow patients and gives so much of his time to ease their mental pain.”

Koffman, of Claremont, California, was nominated by patient Mark Hoffman.

Koffman is a Canadian-born, McGill University-educated family doctor, educator and clinical professor who received a CLL diagnosis in 2005. Since then, he has dedicated himself to teaching and helping the CLL community, informing patients and doctors alike. He has done this initially through his blog and later by co-founding and serving as chief medical officer and executive vice president of CLL Society Inc., which provides patients and caregivers with education, support, advocacy and research. Koffman also offers some support groups for patients.

“In addition to his blog, he has also been an outspoken member of the CLL community and has been active in outreach work in the community,” Hoffman wrote. “His CLL nonprofit has benefited thousands of people to this day. However, where he was most helpful for me personally, and had changed my life the most, is when he gave me guidance on how to proceed for my own personal treatments for CLL.”

Koffman thanked his team, including his wife, Patty, with whom he runs the CLL Society. “If I didn’t have a loving family behind me, there would be no CLL Society and there would be no Brian Koffman still here,” he said.

Honored posthumously was Lisa Minkove, of Issaquah, Washington, a patient advocate nominated by Joanne Cafiero, a patient from Connecticut.

Minkove was diagnosed with CLL and renal cell carcinoma in 2010, when she was 54. In 2005 she had been treated for, and recovered from, thyroid cancer. She found support and strength by helping other patients and, in 2013, she established an international Facebook support group for women with CLL, small lymphocytic leukemia and non-Hodgkin lymphoma. In sharing her own experiences and up-to-date information about the diseases and their treatments, she had a talent for being frank about the difficulties of life with blood cancer yet weaving hope and humor into discussions. Today, there are more than 1,000 members of Minkove’s group.

“A little over a week before Lisa died, I found myself struggling with not wanting to start treatment: Giving up seemed like a good option,” Cafiero wrote. “Lisa literally talked me off the proverbial cliff with a nonchalant, humorous quip: ‘Take the drug, already…’ When Lisa died, I learned that there were many, many other members who received one-on-one support from Lisa, through personal phone calls and face-to-face and impromptu lunches and coffees when she intuitively knew they needed it. How she managed to minister to so many is still a mystery!”

Minkove’s daughter, Hera Minkove, had been scheduled to accept the award on her behalf, but was unable to attend due to illness. Instead, three members of the audience who felt strongly about the importance of her work jumped in to do the honors. Deborah Sims, Jennifer Kreager and Pat Kennedy are all patients with CLL.

“When I was diagnosed in 2003, Chris Dwyer was one of the first to reach out to me, and then Brian Koffman,” Kennedy said. “They have been enormous supporters. Lisa was the next generation — she picked up the torch and passed it on to those of us that are still here. I hope the three of us and many of you in the audience will pick up the torches of those who passed, because that work is important to patients and must go on.”

Making Recognition Possible

The evening’s program was led by Kathy LaTour, a breast cancer survivor, CURE’s co-founder and a writer for the magazine, its sister publication HEAL and its website, curetoday.com.

The heroes were chosen by a panel of judges that included LaTour; Raye Murphy, a volunteer patient educator with the CLL Society; and Susan M. O’Brien, M.D., medical director of the Sue and Ralph Stern Center for Cancer Clinical Trials and Research and a professor at the University of California, Irvine Health.

CLL Heroes was made possible with support from Janssen Biotech, a Johnson & Johnson company, and Pharmacyclics, an AbbVie company. The two have collaborated on development and sales of Imbruvica (ibrutinib), a targeted drug used to treat CLL.

Erik von Borcke, president of Pharmacyclics, spoke on behalf of his company and Janssen.

“We are honored to say thank you and congratulations,” he said, praising Byrd for “pushing science to new horizons with (drugs that provide) multiple modes of action (against CLL). It’s nothing but spectacular what you have done with your teams.”

He praised the three patient advocates for helping spread information about CLL. “You’re taking on your personal fate and transforming this into a service against the disease, investing your own time and energy to help others to understand the disease and much more,” von Borcke said. “You are an inspiration.”