The Myeloma Institute is judged by numbers: survival statistics. Behind the numbers, however, are human beings, like those who gathered at Little Rock’s Peabody Hotel on the night of Dec. 1, 2007. The Institute held a tribute dinner for patients who had survived myeloma for 10 years or more. Thirty-seven patients and their families attended. Annie Mae was among them. She had survived 13 years. She had seen son Earnest marry at the family home, with Echol Sr. officiating as minister. Pam had deployed to Iraq with the Air Force, and Echol Jr. had finished his PhD (Doctor of Philosophy) at Boston University.
Barlogie spoke at the dinner, as did some of the survivors. Each patient had a picture taken with Barlogie, and the group of 37 survivors gathered for a photo. One of the survivors, Barbara Nero of Louisiana, called the evening a “brilliant celebration” of what the Institute had accomplished in its then 18-year history. But even more impressive is what is missing from the group photo—the more than 350 other 10-year survivors around the world who did not attend the event.
It had been a revolutionary era in myeloma treatment. Thanks to Barlogie and other researchers, new drugs and techniques had multiplied the options available, improving patient outcomes. But a controversial split had developed over how to approach the disease. Should practitioners think in terms of control, or had the time come to consider myeloma curable?
Barlogie and the Institute had become the leading force on the “cure” side of the debate. True to the Total Therapy philosophy, this approach front-loads treatment, hitting the cancer with multiple high-dose drugs usually followed by marrow transplantation, in the hopes of delivering a decisive blow to the cancer. In baseball terms, Total Therapy is a swing for the fences.
Asked whether myeloma is curable, Barlogie points to data showing Institute patients who have survived a dozen years and more without a relapse. He says the idea of curability is gaining more acceptance, thanks in large part to the Institute’s survival data.
The competing approach to curing myeloma, led by people like James Berenson at the Institute for Myeloma and Bone Cancer Research in southern California, focuses on controlling the disease. Where Total Therapy swings for the fences, the control approach plays small ball. Berenson views myeloma as a chronic condition, and aims to give patients the longest life span with the best quality of life possible. That can mean using only a couple of drugs up front, holding others in reserve to deal with future relapses. Highly intense, toxic regimens may be avoided for fear of complications down the road. And while Berenson does not believe myeloma is curable today, he does believe advances are bringing that day closer.
“My goal is to keep people in the game long enough to get to a cure,” he says.
Trials have not established whether the cure or control approach is best. Passionate—and sometimes angry—debate echoes from the lecture halls of medical conferences, down to the lowest comment threads of myeloma blogs. There are physicians on both sides of the debate, including both Barlogie and Berenson, who are producing exceptional survival data. Ultimately, however, until more is learned, patients and their doctors have to decide which approach seems best for them.
Waking up in bed in April 2008, Echol Sr. heard a popping sound, then Annie Mae’s cry. Her collarbone had broken as she rolled over. Soon the family would learn the worst. The cancer was back.
Annie Mae returned to Little Rock. Three more rounds of chemo, more stem cell collection and two additional marrow transplants drove the disease back into whatever recesses it hid in during remissions. But, as happens in many cases of myeloma, Annie Mae’s remissions were becoming shorter-lived. In the spring of 2010, she was in Little Rock yet again. Dr. Barlogie gave her an experimental drug in hopes of breaking the relapse cycle.
Over the years she had grown close to Institute staff, not to mention people like Tommy Lee with Pilots for Christ. His young son, who rode along on that first flight in 1995, was now a young man studying in seminary. All of these people formed a sort of extended family for Annie Mae, though not as important as the one back home. It was only a matter of weeks until Keturah, who was only 6 when Annie Mae was diagnosed, would graduate from Tuskegee University. As the date approached, Annie Mae was still in Little Rock. She became adamant about one thing.
“I’m going to my daughter’s graduation,” she said.
She managed to get approval to return home the weekend before the ceremony. Though not in full remission, Annie Mae wanted to make the celebration a special time for everyone. She bought platters of food and decorated the family home in Montgomery.
That weekend, watching Keturah walk across the stage, Annie Mae saw her youngest child stride symbolically into adulthood. The dinner at the Nix home after the graduation ceremony doubled as a Mother’s Day celebration. Annie Mae took the opportunity to make a surprising announcement. She had decided not to continue treatment. It had become too hard, she said.
At first, the family figured it was just one of those times they had seen before, when Annie Mae got down, when the strength had drained out of even her. “Come on,” they countered, “don’t say that.”
“This is my body. After 16 years, I’m tired,” was Annie Mae’s response.
Barlogie, upon hearing the news, wanted Annie Mae to come back to Little Rock to continue treatment, as most of the family did. Finally, Annie Mae compromised by agreeing to take medication, but only by mouth and nothing experimental. And—she was staying in Montgomery.
By this time, Pam, still in the Air Force, had returned from Iraq and started nursing school in Mobile. Echol Jr. was in South Carolina, a professor at Furman University. Earnest was raising a family in Montgomery. Keturah was set to begin graduate school in the fall at Purdue University. Annie Mae and Echol Jr. made a trip to Indiana with Keturah that summer to find an apartment.
When Annie Mae returned to Montgomery she stayed at home until Oct. 10, when she could no longer walk and had to be taken to the hospital.
One day in November, still in the hospital, she had hardly spoken or moved all day. It was on that day that Keturah, sitting on the floor of her apartment in Indiana, heard the phone ring. It was her father, saying her mother wanted to talk to her.
“Hey, Mama’s baby,” Annie Mae said. Her voice sounded clear and strong, almost like she wasn’t sick. Keturah decided to ask one more time, did she want to go to Little Rock?
“I love you.”
“I love you, too.”
Annie Mae seemed at peace, which helped Keturah feel at peace. Not long after that conversation, Annie Mae became unresponsive. She died in the hospital on Dec. 11, 2010, Echol Sr. in the room with her.
There has been talk of Barlogie stepping down as the Myeloma Institute’s director. It is hard to imagine the Institute without him. But on this blustery, overcast day, in his leather jacket and red scarf, he looks like he might be ready to do it—pull the helmet on and ride into the sunset. When asked, however, he says there is only more research in his future—trying to better understand the mechanisms of success and failure in curing myeloma—the puzzle that has occupied so much of his life.
When he does leave, the Institute he has nurtured and grown in Little Rock will continue to build on what he began. The Institute’s survival statistics are among the best in the world. Five-year survival of newly diagnosed myeloma patients is 43 percent for the entire U.S. At the Institute it is 74 percent. The median survival time for patients of the Institute is 8 1/2 years. But the people behind such numbers are the real story of the Institute’s work.
One of these people, Annie Mae Nix, roughly doubled the survival figure above. For her, it was time enough to ensure that all her children grew up with a mother.
In Sept. 2008, Annie Mae’s sixth grandchild was born—Echol Jr.’s daughter, McKenzie. Annie Mae had held the baby in her arms.
“Junior,” she whispered. “Make sure you tell McKenzie about me.”
This year, McKenzie Nix will turn 6 years old. She can tell you all kinds of things about Annie Mae.