Women who took a drug to fight breast cancer say they were never warned of a side effect – permanent hair loss – that left them looking sick long after they were treated for the disease.
"I had a normal head of hair and I am now completely bald," said Cynthia MacGregor, 50, of Montreal, who has been diagnosed with alopecia universalis, a loss of all body hair.
Another sufferer, Shirley Ledlie, 51, of Brittany, France, said: "It's like having 'I am a cancer sufferer' tattooed on your forehead. … I look like an 80-year-old, ugly old man."
This lasting side effect of the chemotherapy drug Taxotere, in combination with other drugs, came to light when cancer patients began living longer. These women are now finding that survival comes at a cost.
Balding women from Canada, the United States, the United Kingdom and France are calling themselves the Taxotears. They include one Taxoterrorist, the nickname for Ms. Ledlie, who posted pictures of her balding head on the Facebook page of the pharmaceutical company.
"We want every woman who's been offered Taxotere to know it is a possibility, so it is her choice whether to take the risk or not," Ms. Ledlie said.
In Canada, about 10,000 patients, including an estimated 6,500 with breast cancer, were treated with Taxotere last year, according to Claudette Baltayan, manager of product communications for Sanofi-Aventis Canada Inc., the drug's manufacturer.
And Canadian hospitals and drug stores spent $70.4-million on it in 2009, according to figures from IMS Health Canada, a private company that tracks prescription-drug sales. Taxotere is also used to treat prostate and lung cancer.
Medical oncologist Hugues Bourgeois, who presented research on 82 patients with persistent alopecia at the San Antonio Breast Cancer symposium this winter, said not all cancer doctors warn patients about this possible side effect.
"Some women look bad, they look ill, they look like they are fighting cancer," said Dr. Bourgeois, of Le Mans, France. "It has an important impact on quality of life."
That's why Dr. Bourgeois gives his patients a choice: They can undergo 12 cycles of Taxol, with a very tiny risk of permanent hair loss, or four cycles of Taxotere, where the risk of hair loss is higher. Most choose Taxol, which he says works just as well on breast cancer. As a generic drug, it also happens to cost less.
The bottom line, he said, is that "patients have to be informed of the risks."
The side effect of persistent alopecia is suffered by about 3 per cent of patients who take Taxotere with other chemotherapy drugs, according to the manufacturer's own studies. It has been clearly listed on the product monograph since December, 2006, says Laurent-Didier Jacobs, vice-president of medical affairs for Sanofi-aventis Canada. (A different study suggests the incidence of persistent alopecia could be as high as 6 per cent.)
"We fully understand that persistent alopecia may be a burden for patients, but still we consider it's certainly something which is not life-threatening or is not something which impairs the likelihood of survival," Dr. Jacobs said. "Taking into account the benefit brought by this type of therapy, we think things should be put in perspective."
Julie Lemieux, hematologist-oncologist at Centre hospitalier affilié universitaire de Québec, Laval University, said health-care providers underestimate the impact even temporary hair loss can have on cancer patients. "When you tell women they are going to lose their hair, sometimes they don't want chemo because of that," she said. "It affects women more than we think. Some will refuse chemotherapy because of it."
Dr. Lemieux is planning to conduct a study this fall to determine whether cooling the scalp while receiving chemotherapy – so that less of the drug reaches hair follicles – can help prevent baldness without compromising outcome.
Pamela Kirby, 58, of McAlester, Okla., was treated with the drug in 2007 and wishes she had been given a choice. It has left her with fine peach fuzz all over her head – but no real hair.
"They absolutely told me my hair will grow back," Ms. Kirby said. "I will never be well of breast cancer because of this. My life is not over, but my life is drastically changed."
Hair loss has left her romantic life in tatters and made her painfully self-conscious. One windy day, her wig blew off in a Wal-Mart parking lot. She left it there and stayed home for three days, horrified by embarrassment.
"I don't even remember the cancer," Ms. Kirby said. "Why wasn't I given a choice?"
That's what Ms. MacGregor of Montreal wonders as well. She is one of the three people who reported a case of alopecia to Health Canada. She hasn't a single hair on her body, not even eyebrows or eyelashes. When she goes out, people stare.
"It's devastating," she said. "With no hair, there is no going back to normal."