Rare-cancer expert's patients have impressive survival rate
Published: Sunday, January 6, 2013 at 6:01 a.m.
Last Modified: Saturday, January 5, 2013 at 5:30 p.m.
For Jennifer Willette, New Year's Day is a bittersweet holiday.
“Everyone else is making New Year's resolutions, and I just pray I'm going to be alive,” said the 37-year-old from Orange Springs, who for the past 8½ years has been battling multiple myeloma, a rare cancer of the white blood cells.
She was just shy of 29 and seven months into her third pregnancy when the left side of her face went numb. “They said it was maybe the baby laying on a nerve,” she recalled on Thursday, as she was about to get chemo at the bone marrow transplant unit at the Shands Cancer Hospital.
But a week after her 29th birthday, she was eating a piece of bacon when her jaw snapped in half.
Willette's doctors feared exposing the fetus to an X-ray and told her she had TMJ, a common condition characterized by chronic jaw pain. But after a week went by and Willette couldn't talk or eat, her mother insisted on taking her to Shands.
“The first thing they asked me was ‘Who hit you?' My heart sank because I knew it was something a lot worse than I had thought,” Willette said.
But Willette now considers her journey to Shands a blessing after she came under the care of Dr. Jan Moreb, a hematologist and the director of the hematological malignancies stem cell transplantation program at Shands.
Moreb is an expert in treating multiple myeloma, and 70 percent of his patients are still alive four years after diagnosis, compared with a national average of 49.2 percent. As well, the average life expectancy of his patients is seven years, compared with four years nationally.
Moreb is one of two myeloma experts in the South (the other is Dr. Bart Barlogie at the University of Arkansas for Medical Sciences in Little Rock) and one of 10 nationally highlighted for high survival rates on the website www.myelomasurvival.com. Its editor, Gary Petersen, himself a myeloma survivor based in Jacksonville, scouts the country and world for experts.
“It's a very complex disease, so you have to find an expert to keep you alive,” Petersen said.
Moreb sees about 120 new patients each year — many from Georgia and Alabama as well as Florida and elsewhere in the U.S. He is known for a more conservative approach to treating patients by using chemotherapy drugs sequentially instead of all at once.
“Since cancer cells typically become resistant to chemotherapy, by exposing them to drugs one by one, instead of all at once, there is a greater likelihood that the effects of the drugs will last longer,” Moreb said.
Some specialty centers around the country employ the drugs all at once, but Moreb said that not only increases patients' drug resistance in the case of relapse, which is typical in myeloma patients, it also heightens patients' exposure to the toxic side-effects of the drugs, which can be fatal.
Multiple myeloma patients also typically undergo one stem cell transplant — in which healthy bone marrow stem cells are extracted from the patient's bloodstream and re-injected or transfused back into the bloodstream — after the chemotherapy has killed as many of the cancerous cells as possible.
At some centers, patients automatically undergo two transplants, just a few months apart. Moreb collects enough stem cells for two transplants but freezes the cells intended for a second transplant, which is performed only if the patient relapses, he said. This more moderate approach saves patients from experiencing too much too soon, he said.
Since chemotherapy — given before and after the stem cell harvesting — generally wipes out a patient's immune system, it's only after the healthy stem cells begin circulating in the bloodstream a few days after the transplant that patients begin to bounce back, Moreb said.
A rare disease
Multiple myeloma, which makes up about 1 percent of all cancers and 10 percent of blood cancers, used to be a rapidly fatal condition.
“It was miserable. Patients would just break bones, lie down in bed and die quickly. They became immobile and developed bed sores or pneumonia,” said Moreb, a soft-spoken, unassuming physician with a shock of Einstein-like hair.
“I used to hate taking care of these patients,” Moreb said. “It's completely different now.”
A few drugs — namely Velcade, Thalomid and Revlimid — have emerged in the past decade and generally cause fewer side effects, Moreb said. And peripheral blood stem cell transplants — in which patients essentially have their blood drawn for hours at a time — are far less complicated and painful than the needle bone marrow transplants that once were used.
The symptoms of multiple myeloma are still, however, relatively benign: broken bones. And most doctors — even specialists such as oncologists and hematologists — might see only one or two myeloma patients in their lifetime, Petersen said.
Years ago, Betty Cato of Gainesville went to pick up her grandchildren and fell out of the car and fractured her right femur. Many doctor referrals later, an MRI picked up the disease.
“It was scary to learn that you have a disease that you have never heard of,” Cato said, adding, “Dr. Moreb and his staff were very thorough in educating me about the disease and how to be ready to beat it.”
Throw them a lifeline
Margo Chase-Dobrian is a nurse at Shands' bone marrow transplant unit.
“Patients have a lot of questions and fear, and the first thing we do is give them something to hold onto,” said Chase-Dobrian. “My job is to throw them a lifeline.”
For Chase-Dobrian, that lifeline includes sharing her own experience as a cancer survivor when the odds were stacked against her.
In 1990, she was diagnosed with breast cancer that had progressed to the lymph nodes, which then was considered a terminal condition. At least, that's what her first oncologist told her.
“I'll never forget what it was like to be reaching out to someone who thought I was going to die,” she said, adding that because of that experience, she treats every patient like a potential survivor.
She also encourages patients to stay in the present.
“After the transplant, I'll ask them what they are doing for the rest of the day,” Chase-Dobrian said. “I tell the family members to have the same arguments. It's all about living now.”
Willette certainly has followed that motto. Just a month after being diagnosed with multiple myeloma, she gave birth to her son — a month early but without any complications. She went through chemo and a stem cell transplant, which she thought had induced early menopause.
But then, to everyone's amazement, she found herself pregnant again. She said she was aware the medications could cause her to have a miscarriage but took them anyway and delivered another healthy son — this time five weeks early.
“You have different feelings of elation and devastation,” said Chase-Dobrian, whose cancer came back shortly after her son was born. “They said, ‘You probably won't live to see him walk.' ”
That was five years ago — and another stem cell transplant and many medications later.
“I fight daily because my goal is to raise my kids to be self-sufficient,” said Willette, who is a mother of four. Her own mother comes with her to every appointment. “This is kind of like our girls' day out,” Willette said.
She credits Moreb for coming up with drug combinations that have kept her alive.
For his part, Moreb said he often combines old drugs with newer ones and sometimes can recycle drugs that patients have been on previously.
“If patients want to fight, we can get something done to help them survive longer,” he said.
Contact Kristine Crane at 338-3119 or email@example.com.
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