As much as any procedure in medicine, a stem cell transplant can be a test of a patient's resilience, of the stamina to handle a potent therapy and a lengthy recovery. It is almost equally a challenge to the caregiver — the partner, family member, or friend who will be an aide, morale booster, confidant, and coach during the time leading up to and following the transplant.
For the organization that performs the transplant, the procedure requires a level of coordination and planning worthy of a NASA space mission. At Dana-Farber/Brigham and Women's Cancer Center (DF/BWCC), the site of more than 500 stem cell transplants a year, dozens of departments and scores of staff members play a role. Some of these, patients will get to know well: the doctors and nurses who collect their cells; the clinical coordinators who schedule their appointments; the specialists who deal with insurance companies; the social workers who help with emotional issues; the resource specialists who help find lodging in Boston, or assist in matters as mundane (but crucial) as parking. Others, just as vital, are behind the scenes, processing the collected cells for purity, tracking each step of treatment to ensure it's performed safely and correctly, gathering data to benefit future transplant patients.
"For all its complexity, a stem cell transplant is never only a medical event," says Joseph Antin, MD, chief of the Adult Stem Cell Transplantation Program at DF/BWCC. "As a team, our responsibility is not only to see patients safely through the transplant itself, but also to assist them with some of the other burdens associated with the procedure, whether those be logistical, financial, or personal."
Stem cell transplants are used in the treatment of a variety of diseases, most often cancers such as leukemia, lymphoma, and multiple myeloma, which originate in the bone marrow. Some patients are treated with high doses of chemotherapy, killing cancer cells but also wiping out the delicate tissue of the bone marrow, where blood cells are born. Patients then receive a transplant of blood producing stem cells — either their own or a compatible donor's — which have a homing instinct for the bones, where they reconstitute the body's blood-making system.
Autologous transplants, which involve a patient's own stem cells, allow patients to receive increased doses of chemotherapy; the eradication of bone marrow is primarily a side effect of the treatment. Allogeneic, or donor, transplants, by contrast, use chemotherapy with the intent of destroying diseased marrow. The transplanted donor cells spur a reinvigorated immune system attack on the cancer. For many people, transplants offer the best hope of a cure or long-term remission.
The multiple moving parts of the transplant process can be seen through the lens of a single person's experience. Allogeneic transplants are considerably more complex than autologous procedures and constitute two-thirds of the transplants performed at DF/BWCC, but autologous transplants convey a sense of the teamwork involved. Here is the story of one such patient, Norman Donchin of Billerica, Mass., who had an autologous transplant earlier this year.
An engineer by training — "Ask me what time it is and I'll tell you how to make a watch," he says — Donchin had seen his doctor for problems with fatigue and mentioned offhandedly a lump he'd found under his right arm. The fatigue turned out to be the result of restricted blood flow to his heart; the lump turned out to be a sign of mantle cell lymphoma.
Today, Donchin meets for the first time with his DF/BWCC oncologist, Caron Jacobson, MD. She explains that his lymphoma is slow-moving and can be tackled once his coronary artery problem is under control. At that time, the treatment plan will involve chemotherapy to push the disease into remission and a stem cell transplant to lengthen the remission time.
On a warm morning, Donchin pulls into the parking garage and heads to the 8th floor of Dana-Farber's Yawkey Center for Cancer Care for the first of what will be six cycles of chemotherapy infusions over the next 18 weeks. He'll experience the "ups and downs" of the treatment – occasional nausea, hair loss, and mild fatigue – none of them extreme.
Five days after his last infusion, Donchin returns to have his cancer "re-staged" — to have his blood tested to determine whether his disease is now in remission. It is, so Jacobson gives the go-ahead for a pre-transplant work-up — a battery of tests that assess his body's ability to withstand the rigors of transplant.
"The most successful transplants involve patients who are in a 'window' of stable remission," Jacobson explains. "When that condition is achieved, we're ready to move forward."
Transplant Program Nurse Kathleen McDermott, RN, meets with Donchin and his wife, Sandra, to review information and give them a guide to stem cell transplants. She explains what to expect in the weeks and months ahead and creates a calendar detailing each step of the process. The calendar, sent to members of the transplant team, becomes the master plan for all that is to follow. Clinical coordinator Pam Kostaras begins scheduling the numerous medical appointments Donchin will ultimately require.
The Donchins also meet with ambulatory clinical social worker Tammy Weitzman, MSW, LICSW, who does an in-depth assessment of their family life, financial situation, emotional well-being, support system, and experience with earlier illnesses or adversity. Weitzman will provide counsel and guidance to the family, as well as identify potential problem areas that need to be referred to other team members for follow-up. The Donchins will also have the opportunity to meet with an inpatient oncology social worker after admission to Brigham and Women's Hospital (BWH).
In an office across the Dana-Farber campus, ambulatory nurse care coordinator Cinda Gaumer, RN, BSN, and financial counselor Denyzes Williams delve into the pharmacy provisions of Donchin's health insurance. If a patient's coverage has significant gaps, which can pose a financial strain, they work to identify alternatives. In some cases, policies that cover the cost of the transplant itself provide little or no coverage for medications needed afterwards, which can cost thousands of dollars. In those circumstances, Darlene Holland, LSW, a senior pharmacy resource specialist, works to connect patients with organizations that provide assistance.
Expecting a long day ahead of him, Donchin arrives at BWH for his pre-transplant evaluation. Over the next two days, he will have numerous exams: an electrocardiogram to check his heart activity; a bone marrow biopsy, the marrow withdrawn through a needle ("not as painful as I expected," he says); a PET/CT scan; a tuberculosis test; a pulmonary test; and an echocardiogram to let doctors see his heart pumping. He will have 18 test tubes-full of blood drawn for laboratory analysis.
A few weeks earlier, Donchin had been at BWH for a dental exam, and found he would need a root canal procedure. The destruction of his bone marrow — which incubates the body's immune system — will leave him without a functioning immune system following transplant. Any excess germs in his body — in Donchin's case, those remaining from a long-ago tooth extraction — have to be removed first. The root canal procedure is to take place January 11.
Based on his test results, Donchin gets the green light for transplant.
As a cold front drifts over New England, Donchin makes three consecutive daily trips to Lowell General Hospital for injections of a drug that herds blood-making stem cells out of the marrow and into the bloodstream, where they're easier to collect. The fourth, final dose of the medication is injected at Dana-Farber the following day.
After rising early for the 45-minute trip to Boston, Donchin enters the Kraft Family Blood Donor Center at Dana-Farber Cancer Institute and Brigham and Women's Hospital, where two catheters, inserted into his veins, will convey his blood through a leukapheresis machine. The machine spins to remove the precious CD34 stem cells that will be gathered, stored, and returned to him in the transplant procedure. (Because Donchin will be receiving his own cells, it's actually more of a replant than a transplant.) The salmon-colored solution will contain about 2 million stem cells when complete. Apheresis nurses ensure the procedure is done properly and keep Donchin at ease during the day-long collection process.
A technologist carries the cells, held in a sterile plastic container, to the Connell and O'Reilly Families Cell Manipulation Core Facility two flights above the Kraft Center. There, gowned technicians in specially monitored manufacturing clean rooms spin the stem cells to remove plasma (the liquid part of blood) and add a protective substance that allows the remaining cells to be safely frozen and stored at -150° Celsius. The number, sterility, and quality of the stem cells are analyzed by lab staff members to ensure the target number of cells will be ready when needed.
Then, Donchin goes home.
Anxious about what lies ahead but eager to get started, Donchin checks into the stem cell transplant unit at BWH, where he's assigned a room with a special ventilation system to keep the air germ-free. For three days, he receives high-dose chemotherapy, which has the dual effect of killing any lingering cancer cells and eradicating his bone marrow. "Kathleen [McDermott] told me to think of the bone marrow as the soil, the stem cells as seeds, and red and white blood cells as the flowers," Donchin recounts. It is the most physically grueling part of transplant, producing aches, pains, and a day of repeated vomiting. Peter Sullivan, his primary nurse, "was with me all the way," Donchin relates.
On February 4, transplant day, Donchin's stem cells are thawed by cell processing technologists and given to him over a few hours through an intravenous line. "As the cells were going in, my nurse, Laurie McCaffery, stood almost eyeball-to-eyeball with me, asking how I felt and whether I was doing OK," Donchin states. For the next two weeks, he will be in relative isolation, allowed only a few visitors (who must wear masks and gowns) to reduce the chance of infection while his immune system recovers.
With no fever, able to keep food and drink down, his blood-cell counts acceptable, and his home cleaned and disinfected, Donchin is cleared for discharge from the hospital. He meets with a nutritionist, nurse, and physician assistant to review foods to avoid (such as raw vegetables, bakery breads, salads, and certain kinds of cheeses), medicines to take, and precautions to follow as he continues to recover over the next few months.
The week of his release, Donchin returns twice for follow-up visits with Jacobson, where she checks his blood counts to be sure his white and red blood cells are generating in sufficient numbers, as well as his overall health. Further follow-up visits occur a month and then six weeks later. For the following year, he will return every two to three months.
Since the time of his first appointment with Jacobson, through the course of his treatment and long afterward — through what will hopefully be years of stable remission — information flows into his medical record: demographic data, health history, medications received, responses to treatment, side effects, and more. Data specialists led by Kimberly Phillips capture this detail, representing hundreds of thousands of data points for each patient, to meet legal reporting requirements and to better understand the treatment experience. Quality experts and researchers mine the data for trends that can be used to improve transplants for future patients.
Regulations govern the transplant process at every turn. Olive Sturtevant, MHP, MT (ASCP), director of Quality Assurance for Cell Therapies and her staff verify that the transplant center complies with these rules. It means reviewing the forms on which patients give their consent to be treated, and ensuring that vials of stem cells are collected, handled, and stored properly. It means monitoring how long transplanted cells require before they take root, or "engraft," in a patient, and examining how long it takes patients to schedule appointments and removing the causes of delays. It even means helping design the clinics where patients are treated.
The 100-day mark post-transplant has no special medical significance, but it's an important psychological milestone. White blood cell counts have often returned to near-normal levels at this point (although more time must pass before there is the right mix of white blood cell types). Patients generally feel stronger and more like themselves. "I thought I might get a New York-style pastrami sandwich the first chance I got," Donchin says. "Dr. Jacobson said, 'I'll bet your first meal at 100 days will be pizza, like everyone else.' Sure enough, it was pizza."
Paths of Progress Fall/Winter 2013 Table of Contents
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