department of medicine

fox chase temple bone marrow transplant program

Patient Testimonials

Going for the Cure with a Donor Stem Cell Transplant

Bone marrow and stem cell transplants are relatively new medical procedures that can be confusing. There's very little in the local news about how it might actually save your life. There are probably not that many people in your family, or neighborhood, who have had the procedure done. You don't know anyone to ask what it feels like. You don't know if it's scary, or if it's worth the time and effort. You feel alone.

You're not alone. The Fox Chase-Temple Bone Marrow Transplant Program is here with you. We answer every one of your questions. We provide the support you will need to make it through. We are one of the country's most advanced programs for stem cell transplants using a matched donor or a self-donation, and we think of that responsibility as a privilege.

We treat leukemia, aplastic anemia, myeloma, Hodgkin's and non-Hodgkin's lymphoma, solid tumors and more. And we do it with the patient in mind. That means we fight for you. Sure, we are aggressive in fighting your cancer. But we treat our patients completely. That means we don't just attack your cancer, but see to your well-being, talk to your family, help you with the financial burden, house you comfortably, and answer every single question you can come up with.

“They thought it was Bronchitis”

Dawn Urso was only 28 when she was diagnosed with Stage II-A Hodgkin’s Lymphoma in August of 1995. She was living in Long Island, NY, working full time as an accounts payable clerk and was engaged to a great guy named Matt. Dawn’s social life was in full swing. She loved spending time at the beach, swimming and going out dancing. Not even in her 30s, “cancer” was one of the last things she ever expected to hear come out of a doctor’s mouth.

Before being diagnosed, Dawn went to visit her general practitioner in East Rockaway, NY because of a persistent cough. “They thought it was bronchitis and gave me an antibiotic,” she says. A week later, with the antibiotics having done nothing to ease her cough, Dawn was sent for a chest x-ray. That’s when she discovered she had Hodgkin’s disease.

Hodgkin's disease, sometimes called Hodgkin's lymphoma, is a cancer that starts in lymphatic tissue. Lymphatic tissue includes the lymph nodes and related organs that are part of the body's immune and blood-forming systems. The lymph nodes are small, bean-shaped organs found underneath the skin in the neck, underarm, and groin. They are also found in many other places in the body such as inside the chest, abdomen, and pelvis. There is no benign (non-cancerous) form of Hodgkin's disease. For Dawn, her lymphoma or “mass” was in her chest. Doctors reassured her that this particular type of cancer had a very high cure rate.

Hodgkin’s disease can occur in both children and adults. It is more common, though, in two age groups: early adulthood (ages 15 to 40, usually 25 to 30) and late adulthood (after age 55). “Being 28, doctors told me I definitely fit in the age range where the highest incidences of the disease occur,” she says.

“You just learn how to deal with it”

Dawn received chemotherapy for six months, which left her exhausted and often unable to go to work. Her life soon became saturated with treatment procedures and doctor’s visits. Amidst all the uncertainty, Dawn married the love of her life on October 19, 1996 during a remission period. “I am extremely lucky to have such an amazing husband. He is always there for me,” she says. “He was supportive from the moment I met him and would take off work to go to doctor’s appointments, treatments, anything.”

Less than six months after Dawn’s wedding, the cancer came back in the spring of 1997. “I was losing weight and having night sweats,” says Dawn. “I knew something was wrong.” This time doctors added radiation therapy to Dawn’s chemotherapy in order to fight the cancer more aggressively. It was an uphill battle. Dawn’s doctors made sure she understood she was likely to have many recurrences. They were right. She suffered a third recurrence in 1999. This time, she was treated with an autologous, or self-donating, stem cell transplant. Her stem cells were collected before being weakened by another high dose of cancer-fighting chemotherapy.

Despite trying different treatment methods, Dawn’s cancer continued to attack, coming back for a fourth time in 2001. “It’s frustrating and it clutters your life, yet you begin to know what to expect,” says Dawn. “When you hear you have cancer for the third or fourth time it doesn’t come as a big surprise. You just learn how to deal with it.”

Deciding Upon Fox Chase-Temple BMT

Dawn was still seeing her doctor in Long Island when her husband’s job moved them to Philadelphia at the end of 2000. Her latest bout in 2001 forced Dawn and her doctors to realize that a bigger step needed to be taken to fight this unrelenting disease. Dawn also realized that she needed some outside support to prepare her for this fourth battle. She found comfort, support and healing at the Wellness Community of Philadelphia, an organization that provides support to cancer patients and their loved ones. The Fox Chase-Temple BMT Program works cooperatively with many support groups in the region.

Dawn, now a Philadelphian, needed more than support. She needed a new treatment center. Her doctor gave her his top recommendations for BMT specialists in the region.

She visited all of the recommended hospitals, but discovered she connected best with the staff at Fox Chase-Temple and was impressed the most with Dr. Kenneth Mangan, chief and founder of the BMT Program. “Dr. Mangan is someone who stands by what works yet he knows everything about the new research being done in the field. Other places seemed to have qualified doctors but I just felt like another number there,” she says. “At Fox Chase-Temple everyone was so helpful and I really felt at home. I truly believe that any hospital can have state-of-the-art technology and the best accommodations. But it takes an even better hospital to include a caring staff like Fox Chase-Temple BMT. From the reception and billing, to the social work, transplant and nursing staff, everyone was there to help me.”

The members of the Fox Chase-Temple BMT understand that when you come to their campus, you’ve already been treated. You’re tired. You’re sick. You don’t remember what life was like before this happened to you. You want someone to answer your questions, to tell you why the treatment you had before didn’t offer the relief you were hoping for.

Dawn came to the Fox Chase-Temple BMT Program in 2001 and by April she was being prepared for treatment with a full intake session conducted by Dr. Mangan and Dr. Thomas Klump. In July, Dawn attended a two-hour orientation on the facilities, treatments and support services available to her. “I was happy and relieved to know that I would have help from social workers for anything I may need,” she says.

The staff of the Fox Chase-Temple BMT program know that coming to a new doctor, meeting a new nurse, and starting a new treatment can sometimes be the most anxiety-inducing and frustrating part of cancer care. That’s why when you come to Fox Chase-Temple, you hear all about the process, from start to finish.

“Dr. Mangan told me and my family about the pros and cons of treatment. They told me my options, explained that the treatment may not be a good idea for someone in my condition because of the intensity of the process,” says Dawn. “It was a gamble, but I asked myself, ‘What do I have to lose?’ I think anyone would do the same thing if they were in my position. So I chose Fox Chase-Temple. I had every confidence in the staff, their commitment, care and ability to handle a challenge. I was comfortable with the knowledge that at every turn, with each question, doctor bill, test to be scheduled and anything else I may need it would be addressed with a smile and talent beyond words.”

The Treatment

On August 20, 2001, Dawn started the stem cell treatment. The BMT team began with something called “conditioning therapy,” a single, high dose of chemotherapy that clobbers the cancer one last time, while reducing blood cell counts in the patient. This is done so that the marrow or stem cells a patient is about to receive aren’t attacked by your body’s weakened, but still quite aggressive, immune system. “Basically, they bring your white blood count down to zero,” Dawn says. “It’s almost like dying and being brought back to life.”

Of course, there are many different options for treatment. The Fox Chase-Temple BMT Program has developed treatment options that use much lower doses of chemotherapy for the “conditioning therapy” required prior to transplant. These are called “mini” transplants and help make transplant an option for older patients who historically have not tolerated this kind of therapy.

With Dawn properly prepared both physically and mentally by the Temple staff, the next step was to let Drs. Mangan and Klump find her a suitable donor. Dawn’s brother and friends were tested immediately, only to be horribly disappointed that they were not exact matches. “Unlike some programs, Temple goes for a ten-out-of-ten match,” says Dawn. What she means is that traditionally bone marrow was “typed” by looking very closely at the cells. Relatives, obviously, were often most closely linked to the patient and became their donors.

But at Fox Chase-Temple BMT, advanced matching is used in all cases, where bone marrow is studied at the genetic level. Temple physicians look at five pairs of genes within the cell to determine the donor who is most genetically like the patient. Often, that person is not related to the patient at all. In Dawn’s case, she was forced to rely on the kindness of strangers. With the help of the National Marrow Donor Program, Dawn found that kind stranger. Stem and bone marrow cells were drawn from the donor’s blood using an aphaeresis machine. Somewhere in America, or maybe overseas, the cells were couriered onto a plane, a train, or hustled into a car for transport to Temple.

On August 29, 2001, Dawn was injected with an anonymous donor’s stem cells.

After the Treatment

Dawn stayed in Jeanes Hospital for 33 days during her treatment, where the Fox Chase-Temple BMT Program has recently expanded to fill an entire, 18-bed wing of the hospital. For the first 100 days following a bone marrow transplant, patients have to be very careful to stay away from infection and not get sick. “It’s almost like being a newborn since you have all this new marrow growing inside of you. Special care has to be taken when in public and when you’re around anyone who is sick,” explains Dawn.

Not surprisingly, being a patient requires a great deal of patience and cautiousness. “Just being inside for that long takes a toll on you psychologically. It was the people at Fox Chase-Temple who made the difference,” she says. “They would do anything to make you feel comfortable.

According to Dawn, staff would sit down and tell her about their day. “That helped to distract me from my treatment and overall situation,” says Dawn. “They totally knew how to make me feel better, physically and mentally.”

Happy Ending

Today, at 39, Dawn Urso is fully enjoying life without cancer treatments. She has spent a quarter of her life battling cancer. Now for five straight years her CT scans have revealed no significant evidence of lymphoma anywhere in her body. She is able to work full time in the human resources department for GMH Communities Trust in her hometown of Newtown Square and has the energy to get back to doing the things she loves.

“I’ve gone through some big changes in my life and I don’t know where I would be without Fox Chase-Temple BMT,” says Dawn. “The bone marrow transplant was really my last chance—and it saved my life. It was truly a joint effort between my donor, family, friends, technology and the incredible staff. I am so truly thankful to everyone who was involved in my recovery and am lucky to have found them.”

Dawn returns to Fox Chase-Temple BMT at Jeanes Hospital once every two months for check-ups and every six months for routine PET and CT scans.

“Before the transplant, I never lasted longer than a year and a half without cancer. Now here I am at almost five years, says Dawn.” August 29, 2006 will mark five years without any cancer treatments for Dawn. To celebrate the incredible milestone, Dawn plans to visit the BMT patients at Jeanes Hospital on her five-year mark, offering them hope and encouragement by sharing her story.

Contact Information:

Fox Chase-Temple BMT Program

Friends Hall Physicians Building

7604 Central Avenue, Lower Level

Phila., PA 19111-2442

Kenneth F. Mangan, MD, FACP, Director

Appointments:

215-214-4191 or

215-214-4199

Transplant Coordinator:

Chris Miller

MillerCH@tuhs.temple.edu