Over the past two decades, tens of thousands of women in the United States suffering from breast cancer have received some form of docetaxel, often in the form of Taxotere. As these women get older, recover from their disease, and move forward with their lives, they often begin to realize that they will be permanently reminded of their trauma through the disfigurement of hair loss. Some people, who have not had this experience, may think that this response is an overreaction and that cancer patients should just be “happy to be alive.”
Survivors, however, who were never told about the possibility of permanent alopecia, may feel betrayed, angry, and isolated in their experience. Doctors may not take their concerns seriously if they continue to be in good physical health, while the people in their life may try to sympathize but fail to provide the comfort these women seek. The advent of the internet has allowed these women, in many cases, to come together and share their stories with others who are struggling to accept their new personal reality and find comfort in the journeys of others. Some women, like Shirley Ledlie, have even become spokeswomen for this group of people and gone on multiple news outlets to talk about their experience and the thousands of women who suffer from the unintended side effect every day. Additionally, stories of women who have chosen to stand up and speak out about their condition and the injustice of uninformed consent to toxic drugs may inspire women to come forward and file lawsuits against those responsible.
Oklahoma Woman Forced to Undergo Taxotere
One Oklahoma woman, now in her sixties, was treated with Taxotere at the age of 55, in 2007. She says that she was given no choice in chemotherapy and was not made aware that an alternative to the drug existed. She was also repeatedly reassured by her doctors that her hair would begin to grow back three to six weeks after her treatment.
“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.” She says her head is now covered with a fine layer of peach fuzz, and she wears a wig to try and make her less self-conscious about her altered appearance.
She says that since the chemotherapy treatment, her life has drastically changed. Her romantic life is “in tatters” and she is prone to extreme embarrassment. For example, she shares how, on a windy day, her wig blew off in a Wal-Mart parking lot. She was too embarrassed to retrieve it, so she left it in the parking lot and returned to her home, where she stayed inside for three straight days. She rhetorically asks, “Why wasn't I given a choice?”
One of the First Women to Report Taxotere Hair Loss
MacGregor, from Montreal in Canada, was one of the first people to report the undisclosed side effect of permanent alopecia from Taxotere to Health Canada, a federal organization committed to consumer safety similar to the FDA in the United States.
Cynthia Macgregor suffers from an extreme version of the side effect, writing, “I had a normal head of hair and I am now completely bald.” Additionally, she has absolutely no hair on her entire body including her eyebrows, eyelashes, and scalp. She says that this causes people to stare at her in public and reminds her every day of her battle with cancer. “It's devastating,” she added. “With no hair, there is no going back to normal.”
Woman Sues After Learning of Taxotere Alternative
Another woman in Oklahoma filed a lawsuit against Sanofi-Aventis, Inc. when she realized there was an alternative to Taxotere that functioned nearly identically but did not cause permanent hair loss. Connie Shatswell was diagnosed with breast cancer in 2010 and underwent a chemotherapy treatment that included Taxotere. Although she has now been cancer-free for six years, her thick brown hair, which fell out during the treatment, never returned.
Speaking to an Oklahoma news station, Shatswell confided, "I never was a girly girl. My hair was the one thing I knew could make me look more like a girl." Perhaps even more difficult for Shatswell, now, is the way people view her after the hair loss: "People look and they have a sympathy look," she said. "I look like I have cancer." This sentiment is echoed on chat rooms about permanent hair loss. Survivors often feel that people will always see them as a cancer patient first, and treat them differently because of it.
Shatswell was never told about the possibility of this condition by her doctor, likely because they did not know about it when they prescribed it because the information was not disseminated by Sanofi-Aventis Pharmaceuticals. She found out about the alternative to Taxotere and the pending lawsuits against the company through social media and filed a lawsuit soon after. To those who think her concerns are petty, she asks, “Can you imagine looking in the mirror and not seeing you? The you, you know?"
Founder of Taxotere Support Group
Shirley Ledlie helped to found the influential website aheadofourtime.org, an online support, education, and advocacy group for women who have lost their hair during chemotherapy and have no hope of regrowing it. Ledlie lived in France when she was diagnosed with breast cancer in 2005 and treated with Taxotere, thinking her long auburn hair would grow back soon after chemotherapy was completed. She was never informed of the risk of permanent hair loss, and her doctor reassured her that hair loss was completely normal and temporary.
When she was first told that she would likely never grow hair again, she was devastated: “What was supposed to be a temporary side-effect was actually going to be a permanent disfiguring feature in my life. I left the clinic that day in total denial and devoid of any femininity.” Ledlie, at first, refused to believe the news and spent hundreds of dollars on treatments, aromatherapies, and creams to try to prove her doctors wrong. Eventually, she began to accept her fate.
“It took me seven years to grieve for my former flame-haired self. For so long, I'd go to sleep in floods of tears and wake up feeling like a freak. Given the choice, I would rather have lost my breasts than my hair.” She says that women who share stories on the website A Head of Our Time speak about depression, changes in personality, and even marriages that have ended due to these conditions. She has also written two books on her personal experience with Taxotere and the health care system entitled The Unexpected Pilgrim and Naked In The Wind: Chemo, Hairloss, and Deceit.
Doctors' Responses to Taxotere Hair Loss
Although these stories make the trauma of hair loss, especially permanent hair loss, abundantly clear, doctors' responses vary. There is a persistent idea in the pharmaceutical industry that survival, no matter what the cost, is the only measure of a drug's success. For example, the vice president of medical affairs for Sanofi-Aventis, the company that produces Taxotere, in Canada, commented that the side effect of permanent alopecia only occurs in 3% of patients and has been listed on the drug label in Canada since 2006. In the United States, such labeling did not occur until December of 2015, and multiple studies have placed the rate of incidence at a number much higher than 3%, with research indicating up to 15%.
The vice president, Dr. Laurent-Didier Jacobs, continues in a statement made on behalf of the company: “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.” If Dr. Jacobs' inconsideration of a patient's emotional well-being were not clear enough, he adds, “Taking into account the benefit brought by this type of therapy, we think things should be put in perspective.” Dr. Jacobs' basically tells cancer patients that they have no right to voice concerns over the toxicity of a product because they are still alive and that should be good enough. This rather condescending statement shows how out of touch doctors working in the pharmaceutical field can be with the patients who actually receive the drugs.
Doctors who work with cancer patients, especially women with breast cancer who have a good chance of recovery and long lives after their disease has subsided, have a completely different view of the matter. A Canadian hematologist-oncologist who works with breast cancer patients, Dr. Julie Lemieux, says that health care providers, who do not have personal interactions with patients, do not realize the impact that certain side effects, such as permanent hair loss, can have on women. She reveals that “when you tell women they are going to lose their hair, sometimes they don't want chemo because of that. It affects women more than we think. Some will refuse chemotherapy because of it.”
Another oncologist who works in the treatment of breast cancer at Mayo Clinic in the United States, Dr. Kathryn Ruddy, adds that “Most cancer centers recognize that this is a major psychological issue and we need to do as much as we can to support patients.” Because of the reluctance of some women to accept drugs which can cause such a drastic and sudden change in appearance, it is important for doctors to be able to reassure their patients that their hair will grow back. In thousands of cases involving Taxotere, however, doctors repeatedly told women that their hair would come back, though perhaps not with the same texture or color, and regrowth never occurred.
Taking the Next Step After Taxotere Hair Loss
It may be tempting to blame the doctors for failing to inform women of the risk of permanent hair loss that Taxotere poses; however, in many cases, doctors themselves were unaware of these risks because they were not advertised by Sanofi-Aventis. In addition, many doctors believed Taxotere's marketing which told them that Taxotere was superior to the taxane alternatives available on the market. Even if they knew of Taxotere's capacity to cause permanent hair loss, they may have prescribed Taxotere anyway due to their belief that it performed better. Patients themselves may have chosen the drug in spite of the risk of hair loss if they thought it gave them a better chance of survival.
Multiple studies make it clear that there is no discernible difference in survival outcomes between Taxotere and Taxol. Multidistrict litigation currently making its way through the courts alleges that Sanofi-Aventis made unsubstantiated claims about the superiority of their drug in order to make a profit off of vulnerable patients. Furthermore, they allege that the pharmaceutical purposefully hid the frequency of toxic side effects, failing to report them to the FDA or take patients' and doctors' concerns seriously. To add your voice to the growing number of women fighting for acknowledgment and just compensation, contact us today.