October 15, 2019
After a lifetime of construction work, Don Connet, 70, needed a new knee. Before surgery, he had to pass a physical at his local hospital in Manhattan, Kansas. But the lab results revealed a low white blood cell count.
He was told a virus can reduce the number of white blood cells produced inside the bone marrow. But, if the problem persisted, it could be a sign of a more serious illness.
When Don’s numbers were still low at a check 2 weeks later, he was referred to hematologist/oncologist Eric Carlson, MD, at the Cancer Center of Kansas, also in Manhattan.
“We reviewed his complete blood count and then performed a bone marrow biopsy and aspiration,” explains Dr. Carlson. “We diagnosed acute myeloid leukemia.”
Dr. Carlson quickly contacted The University of Kansas Cancer Center in Kansas City, Kansas. Physicians who call the 24/7 leukemia hotline gain immediate access to a leukemia specialist and, if needed, a rapid patient transfer.
After the phone consultation, Dr. Carlson urged Don and his wife, Gayle, to make the trip to Kansas City that night. “He told us to grab what we would need for 30 days and get on the road,” says Don.
Advanced leukemia care
Physicians in the Kansas City area and throughout the region often refer patients to The University of Kansas Cancer Center. It is 1 of just 71 cancer centers in the nation recognized as a National Cancer Institute-designated cancer center.
“At the Cancer Center of Kansas, we are able to care for and treat all types of cancer and are proud to have an accredited blood and marrow transplant program,” says Dr. Carlson. “But we are limited to transplants with related donors, so when the patient needs a transplant with an unrelated donor, we know the patient needs to be seen by our colleagues at The University of Kansas Cancer Center.”
Acute myeloid leukemia (AML) is an aggressive cancer of the blood. The most effective treatment is a bone marrow transplant. Community hospitals do not have the specialty focus and resources to perform and manage this complex procedure and patient population. The dedicated blood and marrow transplant team at The University of Kansas Cancer Center – including physicians, nurse practitioners, nurse navigators, pre- and post-transplant nurses, dietitians, social workers, financial counselors and more – has completed more than 3,700 transplants since the program’s inception, now performing more than 300 transplant procedures each year.
“With a diagnosis of leukemia, it’s urgent for the patient to be seen and treated promptly at a cancer care with a leading BMT program and experienced BMT team,” says transplant specialist Sunil Abhyankar, MD. “When we received the hotline call, our team hustled to make sure the patient could get in the same day or the next.”
Just 4 hours after learning Don had leukemia, the Connets arrived at The University of Kansas Cancer Center. Don was admitted immediately. It was February 5, 2018.
Gayle couldn’t believe what was happening. “Don has always been healthy,” she says. “I was shocked and scared. He had no symptoms.”
The right specialist
The next day, Don met with Dr. Abhyankar and several members of the cancer care team. They performed tests to determine the chromosomal makeup of his unique leukemia.
Don listened to the details and then said exactly what was on his mind. “Doc, I just want to know one thing. Is this going to kill me?”
Dr. Abhyankar said Don’s chances of survival were only 5-10% without a stem cell transplant. With an allogeneic transplant – with cells taken from a healthy donor – his odds were better, around 50-60%.
To be eligible for a transplant, Don needed high-dose, systemic chemotherapy to kill the diseased cells in his blood and make way for new cells. He received this treatment during a 30-day hospital stay.
During that time, Don kept the nurses laughing with his dry sense of humor. He kept himself smiling listening to music – mostly of British Invasion bands from the mid-1960s.
Gayle stayed positive, too. “Don was in the Marines for 3 years,” she says. “He earned a purple heart in Vietnam. He’s a fighter.”
Searching for a bone marrow match
As soon as Don started chemotherapy, Dr. Abhyankar and his team began a search for a bone marrow donor. Don’s 3 adult sons and other family members were tested first, but no ideal match was found. The team turned to unrelated donors through the international Be The Match® registry operated by the National Marrow Donor Program®.
Halfway around the world, a 22-year-old male from northeastern Europe was a perfect match.
“We’ve heard there is more awareness about donating stem cells in other countries,” says Gayle. “We’re really curious about our donor’s story.”
“We would like to at least be able to thank him someday,” adds Don.
Bone marrow transplant treatment
On April 19, 2018, with his leukemia in remission, Don received his transplant.
“It was no big deal for me,” he says. “It was like a blood transfusion. No sedation.”
For 100 days after transplant, the Connets stayed at the American Cancer Society’s Hope Lodge in Kansas City, Missouri. The risk of infection is high during this time, and it’s crucial to take precautions to guard against exposure. It didn’t hurt that Gayle had graduated from the University of Kansas School of Nursing 45 years earlier. She cooked and cared for Don the entire time.
“I can’t even describe how important Gayle was to my recovery,” Don says. “Without her, I might not even have gone through the transplant process. It really helped being married to a nurse. With her there, I just did what I was told.”
“Don’s story exemplifies how things should work for someone who has been diagnosed with AML,” says Dr. Abhyankar. “He was admitted right after diagnosis. He received chemo immediately. He was matched with a young, male donor quickly. He went into remission and received the bone marrow transplant. It went like clockwork.”
Leukemia treatment leads to remission
Don’s bone marrow test 6 months posttransplant showed his leukemia remained in remission.
“Of course, he’s not out of the woods yet,” says Dr. Abhyankar. “With leukemia, the risk for relapse continues for a couple years after transplant. After 5 years, the risk for relapse is very low.” Don will be closely followed by a team specializing in leukemia care to monitor for any subtle signs of relapse.
Don later developed a common complication of allogeneic transplant called graft-versus-host disease (GVHD). This happens when the donor’s immune cells (graft) attack the patient’s cells (host).
“He has a mild rash and is being treated with medications in an outpatient setting,” says Dr. Abhyankar. “Once the GVHD is well-controlled, he will require fewer visits to our BMT clinic. Soon, his original oncologist, Dr. Carlson, will take over completely.”
Back in Manhattan, Dr. Carlson stays up to date on the case with clinical notes from The University of Kansas Cancer Center team. “They’ve become good partners in treatment,” he says.
The next steps
Today, Don feels good, albeit tired. He still tries to walk up to 3 miles a day with Gayle. They’re looking forward to the upcoming 1-year anniversary of his transplant.
Don feels lucky he developed leukemia at a time when so many advances in treatment are available – and so close to home. And he’s glad he was referred to The University of Kansas Cancer Center.
“These people are great. I can’t say enough about the hospital and BMT clinic – including the satellite offices,” says Don. “The whole organization is great.”