Sharon and Marilyn Alexander are identical twins with a big difference.
“She’s bionic,” Sharon teased her sister.
Marilyn has a metal rod where her left thighbone once was, just one reminder of multiple myeloma, an incurable blood cancer that destroys the bones. When she was diagnosed, the prognosis was grim: two or three years.
That was 25 years ago.
Earlier this month, the twins, now 69, sat in the living room of Sharon’s comfy but elegant condominium in Mount Laurel to talk about the disease that changed both of their lives.
They have benefited from an explosion in myeloma research and treatment, starting with Marilyn’s bone-marrow transplant at the University of Pennsylvania in 1993, its first myeloma transplant involving identical twins.
But the sisters are also benefactors. The organization they founded, the Philadelphia Multiple Myeloma Networking Group, has provided “education, companionship, and compassion” to thousands of patients, while donating more than $1 million to research. The group’s annual fund-raiser, Miles for Myeloma 5K run/walk, will set off for the 10th time on April 28.
“I always felt we needed to do something,” said Marilyn, who lives in Levittown. “We can’t just sit back and be patient and wait for others to make something happen.”
She smiled, giving no hint that the right side of her jawbone is mostly gone. “When people are diagnosed and they think their life is over,” she said, “I want to give them hope.”
An ultra-rare solution
Marilyn and Sharon grew up with two other siblings in Northeast Philadelphia, but like many twins, they are especially close. They even had a double wedding. (The first ceremony, anyway. After divorces, both went back to their maiden name, which Sharon kept when she remarried.)
Sharon has two sons. Marilyn has twin daughters – one of whom also has twin girls.
Marilyn was 44, an administrator at a retirement community, when a routine check-up detected an abnormal antibody, called monoclonal protein, in her urine. It’s made by plasma cells, the infection-fighting blood cells that turn malignant in multiple myeloma.
At the time, she was in a precancerous stage. The chance of progressing to full-blown myeloma over 20 years was only 20 percent.
But a year later, in 1993, intense pain in her ribs led to the diagnosis of multiple myeloma.
Myeloma isn’t exactly rare – about 30,000 cases will be diagnosed in the United States this year, mostly in people over 60. Still, the twins recall sharing the bad news and getting puzzled looks. “You mean the skin cancer, melanoma?” friends would ask.
Sharon took charge, consulting specialists with her sister, scouring medical journals, and surfing the internet, then in its early days. There, she stumbled on a “godsend” — the International Myeloma Foundation, practically the only existing patient resource.
What Sharon learned was shattering. Out-of-control plasma cells simultaneously crowd out healthy blood cells and produce destructive proteins. Along with bone damage and fractures, this could cause kidney failure, deadly infections, anemia, clotting problems — not to mention fatigue, weight loss, numbness, mental confusion.
Only 5 percent of patients had a complete remission after the standard treatment – namely, a steroid and melphalan, an old chemotherapy derived from nitrogen mustard, used in chemical warfare. The few patients who responded soon relapsed.
“Twenty-five years ago, the prognosis for myeloma was devastating,” said Edward A. Stadtmauer, who treated Marilyn at Penn and is now chief of the blood cancer section.
Penn was among centers testing whether bone-marrow transplantation (now called stem-cell transplantation) could improve survival, as it had in leukemia and lymphoma. It involves destroying the diseased bone marrow with high-dose chemotherapy, then restoring the blood system using stem cells removed from the patient or a donor.
Even with careful tissue matching, donor cells often were rejected by the patient – or lethally attacked the patient. But using the patient’s own stem cells was also risky because they might be contaminated with myeloma cells.
The Alexander twins’ transplant, called syngeneic, offered an ultra-rare solution. Because they were, in effect, clones, Sharon’s stem cells could be used to rebuild Marilyn’s blood system without the risks of rejection, attack, or reintroducing cancer.
Nonetheless, Penn doctors had to wrangle with Marilyn’s health insurer, which initially refused to cover the $200,000 treatment, deeming it “experimental.”
After the stem cells were infused, Sharon stayed by her sister’s side for 18 days, monitoring her care, boosting her morale, and lighting an electric menorah to celebrate Hanukkah, the holiday they were missing.
On New Year’s Eve, the Jewish Exponent newspaper reported on the “miracle on 34th Street” — an allusion to the hospital’s West Philadelphia location: “It typically takes seven to 21 days for the bone marrow to begin regenerating white blood cells. But by the third day, the marrow was already ‘engrafting.’”
Fighting for others
The next month, Sharon went to Virginia for an International Myeloma Foundation seminar about raising money for research and patient support. Soon, the twins and their hand-lettered “You Can Make a Difference” sign were sitting in front of a Bucks County supermarket, soliciting donations that netted $2,400 for the foundation.
Not long after that, they launched the Philadelphia Multiple Myeloma Networking Group, starting with six people around a kitchen table. Now, it has about 300 members, many of whom gather monthly at the Ralston Center in West Philly to bond and learn from experts.
Susie Novis Durie, who founded the International Myeloma Foundation with her husband in 1990, two years before he died of myeloma, called the twins “dynamic, selfless women.”
“A lot of people go into a bubble when they’re diagnosed,” Novis Durie said. “Then there are those who say ‘I’m going to fight this, but also fight for other people.’”
Miles for Myeloma now raises about $100,000 a year, which goes to the foundation to support research.
Sharon is among the heavy lifters who organize the event. Marilyn is the helper and inspirational figure, a reminder that recurrence is not doom.
“I had four years in complete remission after the transplant,” she said. “Then I developed a plasmacytoma [cancerous mass] that had to be treated with radiation.”
As scary as that was, it coincided with a transformative period for myeloma. Sixteen novel treatments have been approved in the last 13 years, including seven in 2015 alone. Unlike chemotherapy and radiation, which kill healthy as well as diseased cells, the new drugs work in a variety of ways, including breaking down abnormal proteins, inducing cancer cells to die, and boosting immune responses.
Median survival is now approaching 10 years, and for many patients, the disease is chronic but manageable, said Penn oncologist-hematologist Dan Vogl.
“They live long enough to get the next new treatment,” said Vogl. “And these drugs are generally well-tolerated, so quality of life is good.”
Marilyn, who had a lengthy remission with Revlimid, is now on Velcade, which targets the abnormal monoclonal protein.
She has also weathered setbacks. In 2012, her nadir, she had the surgery to replace her left thighbone. Then she had two bouts of jaw osteonecrosis – basically, jawbone death – that were complications of taking a bone-building drug. She has had heart problems that may be related to a part of the transplant procedure that is no longer used: whole-body radiation.
Then again, she has not had kidney damage or serious infections.
The sisters have no plans to slow down their advocacy work.
“Being in the support group has been very rewarding, but also very upsetting, because we’ve seen a lot of people pass away,” Sharon said. “That’s why it’s so important for us to do this race. We have limited powers, but that’s the way we can help.”