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The first signs of trouble appeared when Rhys Jones, DDS, found himself stopping every five minutes just to catch his breath on a neighborhood run.
For some 53-year-old men, the fatigue would have been understandable.
But Jones, an adjunct University of Iowa professor who directs St. Luke’s Dental Health Center in Cedar Rapids, was an accomplished runner who had competed in marathons across the U.S. Something had to be wrong.
While initial physical evaluations were negative for respiratory and heart problems, Jones postponed other tests while he and his wife, Valeri Chittick, anxiously awaited the birth of twin children, a boy and a girl. All went well and the babies were born in May 2001.
Meanwhile, Jones’ problem worsened. In June, a blood workup was done by Rod Zeitler, MD. Zeitler referred him for a more comprehensive workup at Cancer Care of Iowa City, a cancer clinic partnership between UI Hospitals and Clinics and Mercy Hospital, Iowa City.
The results were startling: Jones had a sub-clinical form of myeloma, a cancer of the blood and immune system. While potentially life-threatening, the condition was treatable. In this case, because the myeloma was still sub-clinical, no treatment was needed. If conditions worsened, a bone marrow transplant would be a future possibility.
However, being sub-clinical also meant the disease should have been too early in its course to notice. Jones shouldn’t have felt the fatigue that precipitated testing in the first place. Yet by spring 2002, he couldn’t even mow the lawn or take out the trash.
This circumstance was troubling for the physician team, which included Roger Gingrich, MD, PhD, director of the UI Adult Blood and Bone Marrow Transplant Program. Suspicions grew that his condition might be complicated by the presence of amyloid, a sticky protein given off by abnormal plasma cells that might develop in patients with myeloma. Amyloid can damage organs like the heart or kidneys.
A risky but medically necessary heart biopsy confirmed the team’s worst fears. Jones had a rare and dangerous complication called cardiac amyloidosis. His very survival rested on the success of an autologous stem cell transplant.
During the procedure, performed by Gingrich and colleagues in August 2002, his own healthy stem cells were removed and returned to his body after high-dose chemotherapy had wiped out the diseased blood cells. While hospitalized in isolation for 22 days, Jones drew inspiration from the fact he could look out the window and see his wife and 15-month-old children on the playground below.
The procedure went well and Jones returned home to begin a determined quest to regain his ardent lifestyle (in retrospect, this same lifestyle led to an early diagnosis, which in itself was a huge factor in his successful outcome).
“Dr. Gingrich predicted I would run again but I didn’t think it was possible,” he says. Through sheer determination and hard work, however, Jones was pushing his children in a jogging stroller by February 2003, grateful that Gingrich’s forecast had come true.
“Now I can wrestle with my 4-year-olds and do all the things I want to do,” Jones says. “As for running, my knees keep me from doing too much but I still love to run when I can.”
Jones thoroughly appreciates the physicians, physician assistants, nurses, and staff involved in his care. “They make you feel like you’re the only patient they have,” he says.
About Amyloidosis
The term amyloidosis was first coined over a century ago, but cases were described over 300 years ago. Only in recent years, however, have physicians understood the specific make-up and structure of amyloid proteins. Although amyloidosis is not generally regarded as a cancer, it is disabling and even life-threatening. Growing awareness of the condition is generating new research and treatment alternatives.
For more information about the Adult Blood and Marrow Transplant Program:
For consultation or referral, physicians should call UI Consult.
--Michael Sondergard |
