Breast-cancer blogger gets drugs closer to patients
A Seattle blogger and assertive cancer patient who has taken on drug companies, the FDA and anyone she considers a quack has helped bring an experimental breast-cancer drug closer to the homes of patients who need it most.
Seattle Times health reporter
Jeanne Sather's blog:
Jeanne Sather is training her dog, Constant, a rambunctious 6-year-old, because she wants him at her bedside — behaving himself — when she dies.
Several times since she was first diagnosed with breast cancer nearly 13 years ago, she expected that time was nearing. Her cancer, an aggressive type, has spread to her bones and to her brain.
But Sather didn't name her blog, "The Assertive Cancer Patient," for someone else. Navigating doctors and drugs and procedures, she always found ways to survive.
Her latest fight was a desperate one. "My life depends on it," she told the Food and Drug Administration (FDA) in one of many missives that hammer home her point.
Sather last year managed to enroll in a California-based study of an investigational drug that halted her cancer. But having to travel from her home in the Ravenna neighborhood to Southern California every three weeks to obtain the drug was wiping her out physically and financially.
Now, in part because of her efforts, the study has been expanded to Seattle — and also is moving into sites closer to the homes of other advanced-cancer patients enrolled in the study from across the country.
Sather, able for the first time to obtain the drug only miles from her home, savored her victory last week at Seattle Cancer Care Alliance.
Dr. Julie Gralow, a breast-cancer researcher at Seattle Cancer Care Alliance, who is in charge of the trial here, calls Sather "a great example of an educated and informed patient advocate."
Sather, 56, is a tough-minded patient — and often a pain to those she sees as less-than-cooperative. Her blog, subtitled "Living with cancer — and an attitude," is a compendium of the criticism she's directed over the years at drug companies, the FDA, "quacks," and even the breast-cancer awareness color. "I hate pink," she says.
Always, even when she barely could walk, or when the cancer drugs made her deathly ill, she has actively resisted pity or sympathy.
When she was first diagnosed, she was a freelance writer and single mother of two boys, ages 8 and 13. Weeks after a mastectomy, she took a job writing a column for a health website, making sure her chemo was on Friday so she could be ready to work Monday.
When her hair fell out, she shrank from the clucking and hugging unleashed by strangers. Next time, she got a bold henna tattoo on her shaved head, and strangers kept their distance.
When she needed help forcing the health-care system to work for her, she mobilized friends and readers.
"I use evidence, logic and, yes, emotion to make my points," Sather said. "I get ahold of the right people, the ones who can make a difference, and I don't let go." Friends and readers wrote letters — even 11-year-old friend Martha.
"These readers care about me, and it shows in their letters."
A drug that works
Sather's latest quest began last year, after the last of many drugs stopped working in the spring.
Very ill and feeling like she was out of options, she brought her family together, contacted hospice and firmed up plans to die.
She then heard about a new, as-yet-unapproved drug called T-DM1, made by California-based Genentech.
Soon, she was pushing, pulling and lobbying her way into a small study in California for patients with HER2-positive cancer, a type that makes up about 20 to 25 percent of cases.
The drug stopped her late-stage breast cancer in its tracks. The kicker: She had to travel to California every three weeks — expensive, exhausting trips, mostly funded by friends and donations. Many times, she was so sick she needed a wheelchair and a traveling companion to get through the airports.
And because those drugs couldn't reach the tumors in her brain, she also needed radiation treatments. After a second round of radiation this spring, she came to a turning point. Too tired and too broke to keep up the travel schedule, she decided she was done. Really done.
She again began making plans to die. Then she changed her mind. She had one more fight left in her after all.
She enlisted her doctor, friends and readers, and began hammering officials at Genentech and the FDA, urging them to expand the study to Seattle and other sites.
T-DM1, an investigational therapy, goes directly to the problem in her cells, delivering a sort of chemotherapy grenade. Although not without potential side effects — some serious — it's much less toxic than traditional chemotherapy, and it's been the one drug that stopped Sather's cancer.
She is one of about 100 U.S. patients enrolled in the study, which made the drug — a combination of Herceptin and a chemotherapy agent — available to those with no other access. Now, that study will be available in roughly double the current 14 sites, and many patients will be able to get the drug closer to home, Genentech spokeswoman Krysta Pellegrino says.
Pellegrino says the company always planned to expand the number of sites. But that stalled last year after the FDA, instead of approving the drug quickly as the company had expected, required randomized studies to compare the drug with others, she says.
Gralow, at Seattle Cancer Care Alliance, just says the access issue is complex and controversial. Genentech's first obligation, she says, is to enroll patients in randomized trials needed for drug approval.
At the same time, Gralow says, "How are we going to get good drugs tested sooner and to patients sooner when they have cancer and don't have a lot of choices?"
Living with cancer
In many ways, Sather is the face of today's U.S. breast-cancer patient: Not cured, so not technically a survivor. But not dead, either.
Rather, they are living with their cancer.
Recent statistics suggest more and more American women are in that place, having benefited from better screening and therapies that have helped keep some with metastasized cancer alive for a decade or more.
In addition to Sather's study, Gralow recently began a randomized trial of T-DM1 for patients with previously untreated HER2-type cancer.
"Patients and oncologists who take care of them are very excited about T-DM1," Gralow said. A tiny chemotherapeutic agent hooked to a big antibody, it's "the ultimate magic bullet."
Sather's cancer is now officially in remission. She still has small tumors in her brain. While they've been zapped, her brain has sustained damage.
She still occasionally needs to use a cane — a very cool one that her readers helped her buy — and she is still fighting to keep the bank from foreclosing on her house, where she surrounds herself with life: her dog, three foster kittens, neighbor children and frequent visits from her sons.
Sather knows her health still is precarious and can change day to day.
"I'm never out of the woods," she said. Yet, her first T-DM1 treatment in Seattle buoyed her with energy last week. "I'm in remission on this drug, the first time in years," she said. "I'm in this bubble of happiness."
Carol M. Ostrom: 206-464-2249
Carol M. Ostrom: 206-464-2249
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