Spreading the Cure
Bone Marrow & Stem Cell Transplant Program Celebrates 25 Years
When Russel Iwan began experiencing pain in his upper leg he didn’t think much of it – until that was all he could think about.
Russel had been building a new garage for his lake house cabin, so initially he thought he had pulled a muscle. But when the pain persisted, he decided to see his family practitioner who prescribed a prescription pain killer. The pain subsided, however, several weeks later, it returned with even more persistence and intensity. The throbbing was coupled with extreme fatigue and a yellowing of his skin. This time he was admitted to Methodist Hospital where he was diagnosed with severe anemia and received a blood transfusion. Additional tests were inconclusive. Russel was feeling better, so he was sent home.
His reprieve was short-lived.
Just two weeks later, Russel was back at the hospital to have tests performed on a nodule found on his testicles. X-rays also discovered a huge lesion on his upper leg. Additional tests confirmed the diagnosis and the source of his leg pain. Russel had non-Hodgkin’s lymphoma, a cancer of the lymphatic system that originates in the white blood cells. The cancer had ruthlessly chewed a hole through the upper section of his femur, or thigh bone.
But still Russel’s misfortunes continued.
Before a treatment plan was even started, Russel began seeing double. His doctors performed an MRI on his brain that revealed cancer had also spread along the lining of his brain. At this point, Russel and wife, Renee, decided to get a second opinion. They had heard about the internationally-renowned Bone Marrow and Stem Cell Transplant Program at The Nebraska Medical Center and made an appointment to see Julie Vose, MD, hematologist/oncologist, one of the country's leading experts on lymphoma. Dr. Vose is chief of Hematology/Oncology at the University of Nebraska Medical Center (UNMC) department of Internal Medicine. She has been conducting research into the disease for 18 years and is the principal investigator for numerous clinical research trials.
Russel was in good hands. Not only had he found one of the top lymphoma programs in the nation, but it was one backed by an armory of some of the top physicians and researchers in the country. This year, the Bone Marrow and Stem Cell Transplant Program at The Nebraska Medical Center, known for its innovation and success in stem cell transplantation, is celebrating its 25-year anniversary.
The program was founded in 1983 by James Armitage, MD, hematologist/oncologist and Shapiro Professor of Medicine, world renowned for his clinical research in lymphoma and bone and stem cell transplantation. Drawing patients from across the country and around the world, the Bone Marrow and Stem Cell Transplant Program is ranked as one of the busiest adult lymphoma and pediatric programs in the country. The program averages 150 transplants a year and has performed more than 4,000 transplants since its founding.
Under Dr. Vose’s care, Russel says he felt completely confident that he was in the right hands. “She knew everything and could answer every question,” recalls Russel. “I never could have made it without her expertise.”
“She never gave us a gloom and doom outlook,” agrees Russel’s wife, Renee. “She always told us the facts and she always had a plan whether things went well or not.”
Today Russel walks with a limp, but that’s the least of his worries. In some ways he looks at it as a positive handicap because it provides a daily reminder of how fortunate he feels to be here today.
Russel describes the events that transpired in early 2000 after his diagnosis of non-Hodgkin’s lymphoma, as one of the most difficult and frightening roller coaster rides of his life. Even before Russel began treatment, misfortune struck again. Climbing into his car on the way to his first chemotherapy treatment, Russel twisted and heard a loud snap followed by excruciating pain. He had broken his upper thigh bone. The cancer had caused his bones to become extremely weak and brittle. Renee rushed him to The Nebraska Medical Center where his leg was reset and a rod was inserted into his leg from the hip to the knee.
Russel’s treatment under Dr. Vose began with 12 treatments of chemotherapy twice a week, injected directly into the spinal fluid surrounding the brain, which caused Russel to become deathly ill. A series of standard chemotherapy treatments followed for the next four months to kill any remaining cancer that may have spread to other parts of his body. Radiation therapy was then delivered to his leg and left arm, which also showed possible traces of cancer.
By early December, Russel’s fatigued body was ready for the stem cell transplant. Several bone marrow biopsies showed no signs of remaining cancer, so stem cells from his own blood were collected through an aphaeresis process in which blood is withdrawn from the body through a catheter. The stem cells are separated and the rest of the blood is then returned through the catheter. This was followed by six days of high dose chemotherapy to ensure all cancer cells were destroyed. In a procedure called an autogolous transplant, Russel’s own stem cells were then injected back into his bloodstream to grow and multiply. Within 20 days, Russel’s white blood cell count had reached levels that allowed him to return home, a significant sign that the stem cells were working.
But it was merely time for round two.
In January, Russel went back to work part-time. His energy was returning and he was starting to feel like himself again. He was hopeful that his ordeal was over.
Just 40 days after his transplant, Russel found another nodule in his groin area. It was recurrent lymphoma. Russel returned to The Nebraska Medical Center to prepare for a second bone marrow transplant. This time it was decided to perform an allogenaic transplant – one which involves using cells from a donor. The oldest of his three sisters was found to be a match. Russel underwent even more intense chemotherapy and full-body radiation regimen to clear his body of cancer before the actual transplant. When his body had regenerated enough white blood cells to return home, Russel left the hospital weaker and more fatigued than the first time. Over the next few months, he struggled to regain his strength. He lost his appetite and dropped 30 pounds.
“There were days that I didn’t think I was going to make it,” he recalls. “I’d look at myself in the mirror and holler at myself to be strong and pull it together. I’ve got a wife and children to live for.”
Russel did pull it together and today, more than six years later, he is so determined to share his story of courage and hope, that he is writing a book about his experience. “Since my cancer diagnosis, so many other doors have opened up for me,” he says. “It has had a positive impact on my life by inspiring me to get involved in so many things that I never would have done before.” Russel is a cancer support advocate for the American Cancer Society; he has spoken at a number of cancer conferences and reaches out to others through a variety of volunteer organizations.
Despite the many challenges that plagued his struggle with cancer, Russel says there were several constants that helped provide him the strength to keep fighting. The first of these is his wife and family who stayed by his side and never allowed him to lose faith. The second is the expertise and compassionate care provided by the cancer team at The Nebraska Medical Center.
“The care and support provided by the caregivers was absolutely tremendous,” says Russel, who says he developed a very close relationship with his case manager Kathy Byar, MSN, APRN, BC. Case managers are assigned to each transplant patient to assist in coordination of all the services involved in transplant and to provide education and emotional support throughout the pre-transplant, transplant and recovery process. “She has been both an amazing care provider as well as a friend.”
“Russel is a wonderful role model for other patients,” says Byar, who explains that the case manager follows a patient throughout his or her entire life. “The bond that forms is one that is lifelong,” she says. “He has a gift of being able to share his experience with other patients. This experience has given him a whole new perspective on life. He and his wife, Renee, will always have a very special place in my heart.”
There are many reasons why people come from all over the country and around the world to receive care from the transplant program at The Nebraska Medical Center. Since its founding 25 years ago, physicians and researchers at The Nebraska Medical Center program have been pioneers in the field and are recognized internationally for a number of ground-breaking advancements. These advancements have helped improve success rates and have made bone marrow and stem cell transplants a more viable and promising option for a growing number of patients. This includes those with malignancies that include primarily lymphomas, leukemias, multiple myeloma as well as some blood disorders.
The first of these revolutionary achievements was the study and introduction of autogolous transplantation by Dr. Armitage and his colleagues at The Nebraska Medical Center, which served as the starting point and foundation for the program’s success.
“At the time, bone marrow transplants were still a very new thing,” explains Dr. Armitage. “Allogeneic transplants, in which stem cells are harvested from a donor, were increasingly being done, but they were quite dangerous and risky. We wanted to find a way to help people who had otherwise incurable lymphoma. So we developed a hypothesis and began testing autogolous transplants as another option for these people.”
Autogolous transplants involve using the patient’s own stem cells, which reduces the complexity of the procedure and eliminates rejection issues such as graft versus host disease. This condition, which occurs in more than half of all allogenaic transplants, says Dr. Armitage, occurs when the new immune cells recognize that they are not in the right body and attack the other cells in the body. Today, autogolous transplants are the preferred form of transplantation for more than three-quarters of lymphoma patients, says Dr. Armitage.
Another milestone in the field of bone marrow and stem cell transplantation was the development of stem cell transplantation, which was introduced in 1984 by Margaret Kessinger, MD, hematologist/oncologist at The Nebraska Medical Center. The use of peripheral blood-derived stem cells, as opposed to bone marrow-derived stem cells, has become the standard of care for transplantation. This has helped improve outcomes for autogolous transplant patients, contributed to much quicker recovery times and decreased infection rates. Peripheral blood-derived stem cell transplant is similar to bone marrow transplant except the cells are collected from those circulating in the blood rather than bone marrow. Bone marrow is the spongy tissue found inside of bones. It produces the body’s blood cells and cells of the immune system. The blood cells of the bone marrow, white blood cells, red blood cells, platelets and others, all come from one type of cell called the stem cell.
The process for removing stem cells is much easier, quicker and more comfortable for the patient, notes Dr. Vose. For instance, bone marrow removal required general anesthesia and was performed by using numerous needles to inject the patient until enough marrow had been withdrawn. In comparison, stem cells are removed in a two- to three-hour process in which a catheter is placed into the chest and inserted into a large blood vessel. The blood is circulated through a special machine that separates out the stem cells from the rest of the blood. The stem cells are then frozen and stored until they are ready to be re-infused back into the patient.
Physicians and researchers at The Nebraska Medical Center have also been extensively involved in the study and use of colony stimulating factors, also called growth factors. Growth factors are drugs that are used to stimulate the growth of cells before the collection of stem cells and are used during and after transplant. “By being able to stimulate and increase the growth of stem cells after transplant, today we are seeing decreased infections, lower death rates, fewer transfusions and reduced recovery time in the hospital,” says Dr. Vose.
Other important treatment advancements that have had a significant impact in improving the outcomes for patients, says Dr. Vose, include improvements in supportive care techniques, anti-rejection medications and the ability to prevent and treat complications, especially infections. “Twenty years ago, 30 to 40 percent of adult patients died from complications of an autogolous transplant,” says Dr. Vose. “Today, that number is down to 1 to 2 percent.”
In addition, adult transplant candidates used to be limited to those younger than 60 years of age. Today, transplants are performed on individuals as old as 75 years old. Survival rates average 50 to 60 percent, depending on the type of malignancy, compared to approximately 20 to 40 percent 10 years ago.
According to Theresa Franco, executive director of the Cancer program, one of the primary factors that makes the program at The Nebraska Medical Center so successful, is the total commitment and expertise of the physicians and a multi-disciplinary team of healthcare professionals. “Our physicians have an international reputation not only for their research but for their clinical successes in stem cell transplantation,” says Franco. “You get this type of reputation not only from the quality of care delivered, but it is also because you can offer therapies and treatment opportunities that other programs don’t have the ability or scope to offer.”
“Research is critical,” says Dr. Armitage. “As leaders in research, we are able to offer our patients new and promising therapies before anyone else. You can either watch others do it or you can be the ones doing it, and we are definitely leaders in this area.”
The Nebraska Medical Center program is also part of the National Institutes of Health/National Cancer Institute Bone Marrow Transplant Clinical Trials Network. This is a consortium of 16 transplant centers across the country that collaborate on clinical trials in order to derive data from a larger population of patients and to allow for greater sharing of information between centers. Through this network, doctors can study and refine their techniques to diagnose, treat and follow patients to provide them with optimal care. “Our doctors have put themselves in a position to be immediate creators and receivers of new information and research,” says Franco. “We are constantly looking for new ways to improve care and to make the entire transplant experience easier and more comfortable for the patient.”
Physicians at The Nebraska Medical Center also specialize in disease-specific areas and follow their patients throughout the entire pre-transplant, transplant and recovery process. This provides better continuity of care, as opposed to having separate transplant doctors assume care during transplant as is the case at many centers, notes Dr. Vose.
Still another element that makes the Bone Marrow and Stem Cell Transplant Program unique is the availability of cooperative care. Throughout the transplant process, patients can stay in The Lied Transplant Center and participate in cooperative care when they are ambulatory, or able to move around. Cooperative care is a revolutionary approach that allows patients and their care partners to play an active role in the treatment plan and recovery process following transplantation, cancer care and treatment of other illnesses. Care partners, usually a family member or friend, assist in all aspects of the recovery process, including administering medications, monitoring health changes, attending informational classes and more. The cooperative care environment also allows patients and care partners to learn the skills they will need when they return home.
Pediatric transplants are another component of the Bone Marrow and Stem Cell Transplant Program. Started by Peter Coccia, MD, hematologist/oncologist at The Nebraska Medical Center, in 1987, the program has performed more than 335 transplants. Transplants in the pediatric population are normally reserved for patients with more aggressive disease and is far less common than adult transplants. The majority of pediatric transplants are performed on patients with acute lymphoblastic leukemia. More than 80 percent of these patients will be cured with conventional chemotherapy, says Al Grovas, MD, hematologist/oncologist and clinical director for the Pediatric Bone Marrow and Stem Cell Transplant Program, leaving about 20 percent of patients who will need a stem cell transplant. “The knowledge curve has risen steadily since the first pediatric transplant in 1987,” says Dr. Grovas. “And with that, improved success rates have followed suit.”
“The Nebraska Medical Center program is unique in that it shares the same transplant unit as the adult program,” notes Dr. Grovas. “This provides us the advantage of sharing all of the same resources and the expertise of our experienced nursing staff and other healthcare professionals.”
There’s no program like ours in the region, notes Franco. “We have experienced physicians focused around specific diseases, an investigational mentality and pioneering treatments. We have built this program on total commitment, total expertise and total engagement of our patients and families.”
Dr. Armitage says that his ultimate hope is that the Bone Marrow and Stem Cell Transplant program will some day go out of business. “Because that would mean that we had learned enough about treating these cancers that patients would no longer need transplants,” he says. And you can be sure that Dr. Armitage and researchers at The Nebraska Medical Center will have played a major role in that scenario should it some day come to fruition.