Andrea Rosengarden cherishes the recent memories of her daughter’s wedding and of both of her children’s college graduations last year—events she didn’t expect to live to see.
“I remember sitting in my internist’s office and him telling me there was no cure, just treatment,” she recalls.
In 2008, Andrea, of Highland Park, Illinois, was diagnosed with multiple myeloma, the second most common blood cancer that starts in the plasma cells in bone marrow. Rather than produce helpful antibodies, the cancer cells generate abnormal proteins that can cause kidney problems.
Kidney problems, however, were just the start for Andrea, who up until that point had led a life free of major health complications.
To treat the disease, Andrea underwent a stem cell transplant in 2009 with her medical team in Highland Park, followed by chemotherapy and a series of oral medications, which led to remission. But two years later, that all changed when her cancer returned with a vengeance.
“I thought the end was near,” said Andrea, as she fought back tears. “I had no hope and no fix; nothing.”
Unexpected Encounter with Myeloma Expert
Participants at the 2011 Multiple Myeloma Research Foundation (MMRF) Race for Research in Chicago’s Lincoln Park neighborhood, the Rosengardens met internationally renowned University of Chicago Medicine myeloma expert Andrzej Jakubowiak, MD, PhD, professor of medicine and director of the University’s myeloma program, who spoke at the event.
Dr. Jakubowiak had just joined the faculty, and that initial meeting and a recommendation from the MMRF resulted in Andrea switching her care to the University of Chicago Medicine.
That switch, says Andrea, would later save her life.
During a scheduled appointment, doctors noticed her kidneys were beginning to fail right then and there.
“The next thing we know, they’ve got her sitting in a bed and they’re wheeling her off to a room. We remained in the hospital for the next six weeks,” said Michael.
“We couldn’t reverse the course of the disease nor the declining renal function, which remained poor,” said Dr. Jakubowiak. “The only good aspect was that her urine output remained decent, which is generally a good indicator of the ability to improve kidney function.”
But current treatments were not proving successful.
A few years ago, Dr. Jakubowiak attended a meeting in Europe where he learned about a renal dialysis filter, called a Theralite filter, which sifts out blood proteins that cause kidney failure.
After consulting with colleagues Dr. Nicole Stankus and Dr. Jay Koyner, the decision was made to pursue the filters.
But getting these Theralite filters to Chicago would prove to be a challenge, requiring collaboration from the entire renal team. Additionally, these filters—approved in Europe—were not yet approved in the U.S.
After consent for the use of the filters by the Institutional Review Board - a committee established to review and approve applications for research projects involving humans - a number of forms had to be submitted to the company that produces the filters, followed by a request to the Food and Drug Administration for a single-patient use approval, and then the daunting task of quick shipment of the filters to the U.S.
“To make a long story short, we were able to get the filters in an extraordinarily quick time, slightly exceeding one week from the moment we initiated the process until we received the filters,” said Jakubowiak.
Andrea received treatment using the filters along with the drug carfilzomib (renamed Kyprolis®).
“We’ve achieved exceedingly long remission with no evidence of residual disease, which is extraordinary by any circumstances in patients who relapse,” said Dr. Jakubowiak. “It was an extraordinary achievement for her to not only have had a great response to treatment, but to have also returned to normal kidney function with no dialysis so that she can enjoy her life as much as she can. We had tried everything else so there was really nothing more we could have done at that time for her.”
Supporting Myeloma Research
Grateful for the care she received, Andrea and Michael made a generous donation to fund a multiple myeloma research coordinator, who will help Jakubowiak accelerate the program’s research initiatives.
“I had unbelievable care,” said Andrea. “I can’t tell you how fabulous these people are, from the nurses who took care of me, to the doctors. I mean, they’re saints.”
As the lead investigator of several multi-center clinical trials, Jakubowiak said that in 2013, more than 1,100 patients enrolled in 362 clinical trials at the University of Chicago Medicine Comprehensive Cancer Center, one of the nation’s premier cancer treatment centers. Clinical trials shed new light on innovative therapies, devices, and vaccines. For multiple myeloma patients, clinical trials have significant potential to help medical professionals throughout the country and the world establish new, more effective treatments.
“We are absolutely grateful to them for their gift, which will give us an opportunity to have our team better supported,” said Jakubowiak.
For Michael, whose uncle died from multiple myeloma, it’s important to support the University of Chicago’s myeloma program to ensure that others have a chance at a similar outcome as Andrea. “When my uncle was diagnosed, he was told to go home and get his affairs in order. He was given three years to live and that was it.”
That could have been the outcome for Andrea had it not been for the superb care she received, he added.
“They weren’t going to give up,” said Michael. “That was a big deal. Even when there were people in other hospitals saying, “’We can’t help,’” we had the good fortune of stumbling on a group of people who weren’t going to give up.”
Award-Winning Myeloma Program
Last year, the University of Chicago’s myeloma program was awarded the Accelerator Award by the Multiple Myeloma Research Foundation. Presented annually to the top myeloma program in the country, the University of Chicago shared the award with Emory University.
One of the cornerstones of the University of Chicago Medicine’s cancer program has been its work in hematological malignancies, cancers affecting blood-forming cells such as multiple myeloma, lymphoma, and leukemia.
The University of Chicago’s multiple myeloma program works alongside the MMRF to increase its understanding of the basis of multiple myeloma so that it can bring promising new treatments to both newly diagnosed and relapsed patients.
Through its relationship with the Multiple Myeloma Research Consortium, the National Cancer Institute, and pharmaceutical companies, researchers in the University of Chicago’s multiple myeloma program are also investigating new drug combinations with carfilzomib, in which they’ve already seen positive results.
Of the 53 patients enrolled in the clinical trial with carfilzomib, four out of five patients demonstrated small or no traces of cancer after 12 cycles or more of treatment.
“The University of Chicago can be proud of where our myeloma program is in terms of its national and international recognition for our contributions,” said Jakubowiak.
But that recognition was no surprise to Michael, who credits Andrea’s medical team for saving her life.
“People talk about the science and art of medicine. When Andrea was diagnosed with myeloma, she was treated with the science of medicine,” said Michael. “But when things got difficult, she moved into what I think is the art of medicine; somebody who could figure out something beyond just standard care. We needed to find other answers and solutions, and that’s what Dr. Jakubowiak was able to do.”