Wendy Lerman knows it’s a miracle she’s still alive.
The life-long Malden resident describes herself as “just your average single mother of two” whose life has been complicated by four cancer diagnoses. She bravely battled two melanomas and then aggressive breast cancer in 2000 when she was only 32 years old.
That’s more than enough for anyone to bear. But in 2003, she had an odd feeling that something just “wasn’t right” with her healthy breast.
After a series of tests and many months of being told it was just glandular tissue, she persisted, had a biopsy performed and pathology revealed she suffers from angiosarcoma (AS), a rare cancer for which there is no cure and a dismal prognosis—a five-year overall survival rate of 30 percent.
“My world came to a crashing halt,” said Lerman. “I was alone. I truly had to fend for myself and find a way to survive.”
Type of Cancer has Few Treatment Options
With angiosarcoma being so unusual, there was no data to support any decisions Lerman might make about how to approach treatment.
“That made this the most difficult challenge I ever had to face,” she said. “I had no choice but to choose and I decided I was not leaving my children and that was that.”
Lerman took the leap. She had chemotherapy, surgery to remove both breasts and, so far, the angiosarcoma has not come back.
“I got lucky and I was spared,” she said.
Angiosarcoma is a rare cancer that begins in the lining of the blood vessels and can originate anywhere in the body but is well known to arise in skin, soft tissue, liver, breast, spleen, bone, lung and heart.
It tends to be aggressive, recur locally and spread widely.
Treatment options are minimal—primarily surgery or chemotherapy—and many who suffer from the disease do not respond well to those forms of therapy.
“No significant focus on research geared to the development of a cure or prevention is being conducted for the fact that this rare disease does not affect enough of the population,” said Lerman. “Focus on cancer research goes to common types of cancer. I can understand why: they have the numbers.”
Nevertheless, there’s hope.
Angiosarcoma Awareness, Inc.
In their own quiet way, 506 people are funding research that is not only tackling a cure for AS but all other cancers as well.
Two years ago, New York resident Lauren Ryan, a mother of three who was diagnosed with the disease in April 2008, started a support group on Facebook called Angiosarcoma Cancer for patients, families and caregivers facing angiosarcoma. A year ago, Ryan founded the non-profit corporation Angiosarcoma Awareness, Inc. that has a mission not only to provide support for anyone who needs it but also to identify laboratories that are currently conducting research on angiosarcoma and raise funds to support and augment their work.
“After communicating online and by phone, a few women decided they wanted to meet in person for a nice social evening to include the kind of support you can only get from someone who has walked, or is walking, in your shoes,” said Lerman, who is a member of the board of Angiosarcoma Awareness Inc. “The expectations of that evening were not only met but shifted into something much bigger.”
These women decided that if they wanted to live and to help others, then they would have to take matters into their own hands and create the way.
Donations Lead to New Research
Board member Corrie Painter, who is in graduate school studying biomedical sciences, said thousands of people have donated to the non-profit group.
“We raised $80,000 through Angiosarcoma Awareness and worked with Cycle for Survival to raise an additional $350,000 that is earmarked for our two-year Angiosarcoma project,” she said, referring to securing a laboratory at Memorial Sloan-Kettering, obtaining research scientists, and the money that will fund the first year of the research project.
Painter said an upcoming drug trial to be conducted at the University of Minnesota will focus on a new therapy called a bi-specific targeted toxin.
What that means, she explained, is a drug that only recognizes tumors and carries with it a toxic substance that will kill the cancer cells.
“This work will be done in a canine model of Angiosarcoma cancer,” Painter said. She pointed out dogs get the same disease and veterinarians believe that doing a clinical trial in dogs will do two things: show if the drug can work to kill this cancer in a living organism, and determine if it can be developed into a new therapy for dogs and people alike.
“We are at the beginning stages of designing the trial, so a timeline is not yet available, but it's safe to say that the development phase has begun,” she said. “The implications of this research are the possibility of a cure not only for Angiosarcoma, but for other cancers as well.”
The drug was developed to fight gliomas, a highly aggressive vascular and brain tumor, and in mice, injection of this drug into those tumors caused long-term survivors.
“If we fund this research and find that it is effective in dogs and then people, it will likely be tested for effectiveness in other cancers as well,” Painter said.
How to Help
“We talk about everything and support each other for everything,” said Ryan, president of Angiosarcoma Awareness, Inc. “We have topics of discussions about our treatments and help new members to get to places where there are
Ryan describes the group as “upbeat” and said members remain positive through all
“All members continue to say how happy they are to have found the group now that they know they are not alone in the battle with AS,” she said.
But they need help spreading the word and continuing research efforts. The group has identified May as its Angiosarcoma Awareness month.
Members will be holding a 5K race in Oxford on Sunday, May 15 at 9 a.m. Anyone who doesn’t want to actually run can register and receive a tee shirt. In addition, the group has Rosalia’s Zumba Away fundraiser on May 15. For additional information, visit https://www.signmeup.com/site/online-event-registration/73041
Everyone who works for Angiosarcoma Awareness, Inc. does so as a volunteer, said Ryan. She pointed out all donations go right to research.
“We have reason to believe that our research has high potential to reveal or unlock the door for not only AS, but many solid tumors as well,” said Lerman. “Please take a moment to consider what I am saying and take a leap of faith. By helping us, you may very well be helping yourself or those you hold dear.
For further information on Angiosarcoma Awareness, Inc., visit www.cureasc.org.