There was one time in Michael Profic’s life that he was so emaciated that he joked that his oncologists could just hold him up — he stands at 6 foot 5 — and shine a fluorescent light and see right through his body.
That was right after surgeons hung a bag of donor bone marrow cells over his hospital bed at the Mayo Clinic in Arizona. That was right after the donor cells took up residence in his body and his immune system was running amok. That was when he wasn’t sure if he would survive leukemia.
That was seven years ago, and every day he is aware of the hundreds of thousands of others living with leukemia and those who did not make it.
“I am alive today because of a great medical science story,” said Profic, who just celebrated his 51st birthday.
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Not the news they wanted
Profic can remember everything about the two decades of his life that were consumed by blood. Today, he helps others heading down the same path and raises money for the Leukemia and Lymphoma Society, whose funding had let researchers test the experimental drug that brought him through one long leg of his journey.
Profic paid little attention to the stuff in blood until he was diagnosed with adult-onset Type I diabetes. He had just turned 30, and for the first time in his life he had to pay attention to measures of blood glucose. That would require constant monitoring of his blood.
Then, a few years later, a routine blood test picked up an abnormally high white blood cell count, which ultimately led to a diagnosis of myeloproliferative syndrome. It turned out that all of his blood factors were off the charts.
Myeloproliferative diseases do put patients at higher risk of developing acute leukemia, but for the most part Profic just saw this new chronic condition as a “shifty little incurable blood disorder.” He and his wife were just beginning their family and it was not clear whether his exhaustion was due to his blood disease or life with a newborn and toddler. They had him on a new medicine that helped control his blood count. St. Luke’s Mountain State Tumor Institute oncologist Paul Montgomery and nurse practitioner Mallori Hooker were monitoring his care.
His kids were making their way out of elementary school, and the tiredness continued. Monthly blood tests were getting worrisome. It was becoming apparent that the medicine was no longer working as well to keep the factors in his blood within normal levels.
By 2006, eight years after the diagnosis of myeloproliferative disease, Montgomery began talking to his patient about the possibility of a bone marrow transplant. Profic was put on a medication called Revlimed that had just been approved a few years earlier. It had been shown to extend life in patients with multiple myeloma, a blood cell cancer. But it was also proving its mettle in patients with chronic blood disorders.
They were trying to avoid a transplant, or push it out a few years.
By the summer of 2009, his blood platelet count took a nosedive and his spleen had enlarged to the size of a large grapefruit. (Normally, the spleen would rest comfortably in a fist.)
He had no new symptoms so Montgomery and Hooker waited out his numbers. Four months went by. In October, Montgomery called him after the results of that month’s blood tests sounded an alarm.
“I knew what he was getting at and he knew that I knew,” said Profic.
The oncologist said they needed more testing. A week later, he’s rolling up his sleeve to fill more vials of blood. Three hours later, Profic receives a call from Montgomery’s nurse. “Michael, it’s acute myeloid leukemia,” she said.
Now, his only hope of surviving was a bone marrow transplant.
Waiting for that straight-A score
There is no bone marrow transplant program in Idaho. Montgomery has worked with transplant centers all over the West and recommended the Mayo Clinic in Scottsdale, Ariz.
Hooker explained that there are different types of transplants. An autologous transplant means that hematopoietic stem cells are removed from the patient’s own blood supply and treated with high-dose chemotherapy agents and infused back into the patient. The other method is an allogeneic bone marrow transplant; this requires hematopoietic stem cells from a donor. Profic would need an allogeneic transplant.
His new team at the Mayo Clinic worked closely with Montgomery and Hooker. Within days of testing at Mayo, Profic’s name was placed on an international registry. Before a donor’s cells are even collected, patients undergoing a transplant must take 10 days of so-called inductive chemotherapy to try to wipe out the circulating leukemic cells in the body. It worked. Within two weeks, his leukemia was in remission while they waited for a donor.
Two weeks later, on Jan. 4, 2010, they found a match — a person with healthy marrow and the same blood type in a small town in Germany. Abensburg is in the lower Bavarian district and is home to around 13,000 people. Profic’s donor is a man a few years younger who has a perfectly matched antigen profile. On the day of the scheduled transplant, this man would go into a nearby hospital in Germany and they would use an apheresis machine to remove his blood and separate out his stem cells, pack them in ice and send them by plane that same day.
When the bag of treated donor bone marrow cells arrived at the Mayo Clinic, it was immediately brought into Profic’s hospital room and attached to an IV pole and infused into his body. And that was it. A few hours later, the bag was emptied and it would take anywhere from 10 to 14 days for the donor stem cells to take up shop in a new body and begin making a healthy population of blood cells.
Next comes the waiting. Every transplant patient does this. People are waiting to see whether the new stem cells are recognized as a foreign entity and the patient’s body wages an immune response against them. It’s called graft-versus-host and it would show up like a thief on the fourth post-transplant night. A skin rash spread throughout his body like fire. There were liver issues. And he was having the worst gastrointestinal issues that he’d ever experience, which is why he would soon drop down to 167 pounds.
He made it through the graft versus host. The next few milestones would bring good news. On day 28, 30 percent of the bone marrow cells in Profic’s body belonged to the donor; by day 56, it was 100 percent and the final test of whether the transplant was working arrived on day 84. A straight-A score of 100 percent.
“That is what we were all looking for,” said Profic.
‘Relationship is everything’
Today, he stands tall (and thankfully, heavier) as a cancer survivor. “It is like night and day between how I felt at 40 and how I feel today,” he added. “I feel great.”
He learned a lot about cancer, and about the importance of relationships. Not just with his family but with his medical team.
“We all work together,” said Profic.
He remains close to his oncologist and nurse practitioner. They are still monitoring his health. And it’s not a one-way street at all.
“Relationship is everything. If physicians don’t establish a relationship with their patients, they burn out. Patients become your friends,” Montgomery said.
Hooker added: “If a relationship is not established right away, patients can suffer, and they will suffer in silence. Constant dialogue is essential to get through the diagnosis and the treatment.”
Profic is active in the Idaho/Montana branch of the Leukemia and Lymphoma Society. He raises money because he knows that the experimental treatments that helped save his life were developed because of research funds donated from the nonprofit organization.
“I would not be here today, I am sure of that,” he said. “I am so thankful.”
Jamie Talan is a science writer and editor-in-chief at an art and literary journal at the Hofstra Northwell School of Medicine in New York, where she is a clinical assistant professor of science education. She lives in Boise.
For more information on leukemia, visit the national organization’s website at http://www.lls.org.