“I felt fine, but scared. I was slowly becoming conscious that something was very wrong,” she said.
Her blood work pointed to leukemia, but Dr. Anand Jillella ordered more tests to determine what type. Jillella, associate cancer center director for clinical affairs and chief of hematology/oncology and bone marrow transplant, suspected correctly that McIndoe had APL.
Jillella had been studying the rare and aggressive form of leukemia for several years. He treated her with a new protocol that he and fellow researchers had developed.
APL is a chromosome mutation that causes cancer cells to grow stronger and multiply quickly over the normal red and white blood cells and platelets that should be produced.
“It disrupts the normal clotting system and patients can hemorrhage,” he said. “The disease hits very hard and very fast.”
Although McIndoe’s blood work in May was normal, by July 1 she was in the advanced stages of the disease.
“Because it’s rare, doctors may see only three cases a year, or they may never see one, so they may not recognize it immediately or treat it appropriately. A single mistake can cause a patient’s demise,” Jillella said.
About one in three patients die within a month of an APL diagnosis.
“Out of 100 patients, about 30 won’t survive the first 30 days, but out of the 70 who do, 65 will be cured,” Jillella said. “This is a very curable cancer, but we had not recognized that the first 30 days was a major hurdle until a few years ago.”
Between 2005 and 2008, the center treated 19 APL patients, seven of whom died. “That was simply not acceptable,” he said.
After discovering that other doctors had similar outcomes, Jillella wanted to know why. Georgia Regents University Cancer Center officials called in an outside consultant and began looking closely at their cases. They found three causes of death: bleeding, complications from medications and infection.
“The solution was simple, but has proved very effective,” Jillella said. “Rather than waiting for those things to happen, we would prevent them. We could give transfusions for the bleeding, take precautions to prevent treatment complications and give antibiotics to prevent infection.”
Jillella’s team took a 15-page international protocol on how to treat APL and condensed it to one page. In a pilot trial, the center has treated or supervised the treatment of 15 patients in the last 18 months. All of them have survived.
Nurses 'were my rock’
But McIndoe spent a rocky July in the bone marrow transplant unit.
“Because of my MS, they had to get creative with treatments. The first round of chemo pretty nearly killed me,” she said. “There were constant transfusions and treatments, but the worst night was when my throat started closing up because of mouth sores. That really scared me.
“Dr. Jillella is passionate about what he does and he’s there for patients. I don’t think I’d be here without him, but during that month, the nurses were the key to my sanity. They were my rock.”
A nurse for 35 years, Kim Cheely manages the nursing services for the three in-patient units at GRU Cancer Center.
“Acute leukemia patients are the most complicated and challenging patients we treat,” said Cheely, RN, BSN, MHSA.
APL patients are considered an oncological emergency. Patients may come from anywhere in the region and the first step is to expedite their transfer.
“Nurses must be prepared to start chemotherapy treatment 365 days a year,” she said. “It’s especially important to have adequate and specialty-trained nurses. When the doctor leaves at night, he’s depending on the nurses to know what to look for and what to do.”
Nurses deliver medications, monitor for blood and fluid levels and look for signs of infection. They read lab charts and visit patients frequently to look for anything unusual, such as signs of differentiation syndrome, a complication that can cause heart failure.
At the same time, they must calm the fears of patients who are often in shock from the diagnosis.
“I think about what I would feel like if I were diagnosed suddenly with this disease. My mother died from leukemia and that makes me even more passionate about wanting to help these patients,” Cheely said. “It does throw patients for a loop, but I’m always amazed at the human spirit.”
After the initial shock, most patients accept the diagnosis and do what they must do, Cheely said.
“Sick as they are, we must help them hold on to those good things that are happening,” she said. “You look for things to celebrate when you work in this field.
“Oncology nurses know quickly whether they want to be here or not. It’s extremely hard work in an extremely regulated environment. We see difficult situations and sometimes multiple deaths, but if you’re called to it, you don’t want to be anywhere else. It’s very rewarding.”
Seeing patients walk out the door and go on with their lives is the best result, so Cheely is excited by the positive outcomes with the new protocol.
Jillella is excited by a $1.67 million grant from the Leukemia & Lymphoma Society that will help spread the word to others. GRU Cancer Center has teamed with project partners at Emory University and Northside Hospital in Atlanta; the Medical University of South Carolina; and Upstate Oncology Associates in Greenville, S.C., to educate hematologists and oncologists in Georgia and South Carolina. They will serve as on-call experts to oncology practices and can make the new protocol instantly available to those who need it.
“Sometimes the simplest things that are right there staring you in the face are the best things to do, and that’s the case here,” Jillella said. “There is no reason for these patients to die. It is not acceptable and we want to take this protocol global.”