'Leisha's Girls' come together

fifth of six chapters Breast cancer patients want more information than doctor can provide

October 16, 2008|By Articles by Stephanie Desmon | Articles by Stephanie Desmon,stephanie.desmon@baltsun.com and chiaki.kawajiri@baltsun.com

Anita is dead.

The news, in the first week of August, jolts this loose-knit community of women participating in a trial of an experimental breast cancer vaccine. Just a year ago their friend had triumphantly shared that she was cancer-free, practically shouting it across a crowded waiting room. Now she is the first of their group to die.

Susan Marangi and Anita entered the Johns Hopkins trial together and became fast friends. They had a feeling of invincibility, feeling lucky to be part of a trial they were sure would produce a cure. They chatted about how they would spend their days growing old. Strong and independent, Anita couldn't stand to be around negativity, refusing to listen to anyone who reminded her that remission can be fleeting.

But now, Anita's friends in the trial are forced to confront their own mortality, plunged into grief and filled with panic about what her death means for their own chances of survival.

"If this thing isn't working, tell me so I can go out and find something else," says Marangi. "I won't get angry, but I need to find something else that will."

These eight or nine women aren't just drawn together for support but also by an overwhelming need to know more about the vaccine than they get through official channels. They want to know if it is working, how others are faring. At the very least they need validation that the time, energy and blood they have donated is pushing the scientific process forward.

Many say they don't get enough of that from Dr. Leisha Emens, the Hopkins oncologist who enrolled them in her two small studies. As much as the women admire Emens, the paucity of information that she offers, that she can offer, frustrates them, deepening the tension they sometimes feel between their needs and those of science.

Defining success

Though bound together by hope, Emens and the women she has recruited since the study began in 2004 part company in defining success. For Emens, the success of her two trials will be measured by the degree to which the drug produces a measurable immune response in the women, not by the number who stay alive.

Her horizon extends well into the future, encompassing women who don't yet have cancer. Emens is one of the growing number of scientists testing vaccines as a means of training the immune system to attack cancer cells. The pace of scientific discovery is agonizingly slow. Emens thinks she could have a vaccine perfected in eight to 10 years, if all goes well. She is already anticipating the next stage of her research and planning to recruit a new group of women.

But for the women who have already received the vaccine, survival is the goal. Only a miracle will do, though no one has promised one. There's no time for more experiments. As Marangi says, they are the "almost dead." For all the women whose breast cancer is halted by surgery and current therapies, 40,000 die each year because it has spread through their bodies. On average, patients live just one to two years - and not necessarily healthy ones - after they are diagnosed with Stage IV of this disease.

From the time Marangi got her first shots, in December 2006, she wanted to know more about the 18 women who had taken the leap before her. Emens told her very little about them or those who came next. Emens must stay true to her research. Sometimes that is tough, especially when she has grown close to her patients. "I'm actually not allowed to answer," Emens says.

Paucity of information

Clinical trials are by their nature secretive. Researchers may require years to track patients and even then may not fully understand how a drug worked. And health privacy laws are so strict Emens can't introduce participants to each other, let alone share information about them. She can't even tell individual patients whether they have had an immune response, afraid they could take the information even she doesn't fully understand yet and use it to make a bad treatment decision.

Marangi was determined to break through the barriers. Every time she went to Hopkins - and there were weeks when she drove the 16-mile round trip from her Parkville home every day - she would look out for others in the study. It might be a woman getting blood drawn at the same time, or a woman speaking to the study's research nurse. Then she'd sidle up and ask, "Are you in Dr. Leisha's study?"

The study participants she met found others. Her list grew to about nine e-mail addresses, nine of the only people on the planet who could understand her situation and give her those hints about how things were going.

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