Women who took chemo drug say they were not warned of permanent hair loss
Maker of Taxotere says risk is low and not life threatening, but women angered by a lack of choice
March 2010
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 Hair Loss 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.”
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