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Cancer itself can be devastating, but it is not uncommon to hear that the side effects from chemotherapy can be more physically and emotionally distressing. Total hair loss (including hair on the scalp, arms, legs, pubic hair, eyebrows and eyelashes) is called alopecia, and it is, regrettably, associated in the United States with cancer and sickness. Taxotere causes significant hair loss of this sort in almost all patients who take the drug. This public display of baldness can be very painful because of the social stigma surrounding cancer and sickness. Patients suffering from alopecia often lament how they are viewed in public first and foremost as a cancer patient, and only secondarily as an individual with skills, goals, and a unique personality.
The hair loss associated with Taxotere is of special concern because it can be permanent. Unlike most other cancer drugs, between 3 and 15% of people who take Taxotere will experience some level of permanent hair loss. This can range from complete baldness to patchy and inconsistent hair growth.
Why Chemotherapy Causes Hair Loss
Most chemotherapy drugs function by attacking cell division within the body. Tumors are masses of cancerous cells which grow and divide uncontrollably. Their naturally programmed cell death has been shut off. In order to combat this proliferation, chemotherapy drugs target cell division or DNA replication (the first step in cell division).
Unfortunately, chemotherapy drugs do not just target cancer cells. There is no way for the active compounds within the drug to distinguish between healthy cells and aggressive cells which are making a cancer patient sick. Because of this, all the cells that divide quickly within the body are particularly affected by chemotherapy treatments like Taxotere. Hair follicle cells are some of the fastest growing in the body and are therefore attacked by the chemotherapy treatment. Usually, hair follicles are able to repair themselves after the chemotherapy treatment stops and return to normal growth, but sometimes Taxotere can permanently damage the follicles so that regrowth will never occur.
Psychological Effects of Hair Loss
For better or for worse, in our society, hair is part of the way that many people identify and value themselves, especially women. We recognize people by their hair, and hundreds of thousands of products are manufactured and marketed to hone this particular physical attribute. Some patients and their loved ones, however, are surprised at the intense emotional effect that losing one’s hair can have.
Chemotherapy & Short Term Hair Loss
There have been a few studies that discuss and evaluate people’s emotional response to chemotherapy-induced hair loss. For many years, doctors and psychologists studied how surgery associated with cancer affects body image, but only recently have the psychological effects of hair loss been given the attention they merit. In 1997, one of the first quantitative studies to address this issue was published in Supportive Care in Cancer.
This study tracked 29 women who were in the process of chemotherapy treatment for ovarian cancer who all suffered the side effect of alopecia. They were not taking Taxotere, and, in every case, their hair began to grow back after their courses of chemotherapy were completed. The study had multiple components. Each woman was tested for problem-solving capabilities, general self-esteem, state of health, and physical fitness before they began the alopecia-inducing treatment and after their hair had begun to regrow. The researchers found that “73.3% of the patients did not feel as self-confident as before treatment and that for 46.6% alopecia was the most traumatic side effect of chemotherapy.” This study is particularly important because it shows that even when hair begins to regrow, the trauma of hair loss may have a permanent effect on a patient’s self-esteem. When hair never regrows, this damage may likely be even more severe.
Another study which can be helpful in understanding the emotional effects of hair loss was published in 2007 in the European Journal of Oncology Nursing. This group of researchers focused on the way female patients prepare themselves for hair loss during chemotherapy treatments for breast cancer. They interviewed 19 women who were about to undergo treatment to discuss how they were viewing their hair loss. The responses varied, yet there were clear threads of fear and dread associated with this particular side effect. Some women dreaded feeling “alien” to themselves or unattractive, while others were frustrated that people in their lives saw them as vain for mourning the loss of their hair. Many were concerned that the “hair loss would make them visibly identifiable as a person-with-cancer and that they would subsequently lose their privacy” when they were out in public.
Support Groups for Long Term Hair Loss
Women who have experienced permanent hair loss from Taxotere often come together online to share stories and support each other. Many feel frustrated that they were never informed of this possibility while others feel that lawyers and doctors do not take their suffering and anger seriously. Threads on sites like the American Cancer Society and breastcancer.org display conversations between cancer patients, friends, and loved ones dealing with the disappointment and sometimes depression that can accompany this particular side effect. The site A Head of Our Time posts pictures of women with chemotherapy-induced alopecia and provides resources to those looking for answers.
Trauma of Long Term Hair Loss
There have been, as yet, no long-term studies on the psychological and emotional effects of permanent hair loss caused by the administration of the chemotherapy drug Taxotere. It is easy, however, to extrapolate from both anecdotal data on chat rooms and forums associated with permanent hair loss and studies on short-term hair loss. If losing your hair for a few months or a year can have serious long-term emotional consequences, permanent hair loss, especially when patients are told that their hair will regrow, can be devastating. One of the ways in which patients manage to cope with short-term hair loss is by discussing it with their doctors, friends, and family before it occurs. They can also prepare themselves mentally by reading about the process and physically by purchasing wigs, hats, or specialized scarves for comfort and privacy. When patients are deprived of this outlet, and the possible effect of long-term hair loss is hidden from them, the side effect can be exponentially more damaging.
Linking Taxotere to Hair Loss
When Taxotere first appeared on the market in the United States, the Food and Drug Administration (FDA) made no mention of the possible side effect of permanent hair loss. Multiple lawsuits allege that the risks were known much earlier, and in both Europe and in Canada, the drug manufacturer Sanofi-Aventis made doctors and patients aware of these risks. In December of 2015, the FDA added a statement to the safety labeling on Taxotere which reads “Cases of permanent alopecia have been reported.” On Sanofi-Aventis’ website, they list the product information for Taxotere, including the side effect of hair loss. They state that “in most cases, normal hair growth should return. In some cases (frequency not known) permanent hair loss has been observed.”
Although the packaging officially includes these warnings now, victims of undisclosed hair loss around the country have struggled to be recognized and taken seriously for decades. Studies and personal stories have given ample evidence that Taxotere can cause permanent hair loss for many years, yet many doctors and patients were unaware of the possibility when the drug was prescribed because the official list of side effects did not include permanent hair loss. Even now, permanent hair loss is not listed as a common side effect, regardless of the fact that the definition of a “common side effect” is that it occurs in 1-10% of patients, and 3-15% of patients experience some degree of permanent hair loss after taking Taxotere.
As part of the process of FDA approval, the pharmaceutical company Sanofi-Aventis sponsored clinical trials of the drug. The last phase of the trial included 1,060 women with breast cancer and began in the mid-1990s. The ten-year follow-up to the trial indicated that 9.2% of women were struggling with permanent hair loss associated with the treatment regimen of Taxotere, Adriamycin, and cyclophosphamide, known as TAC treatment. Yet another study associated with this phase of the trial encompassing 744 women taking TAC found that 3.9% of women were experiencing alopecia 8 years after the completion of their chemotherapy schedule. These side effects were not publicized by the company, nor did they take the opportunity to educate doctors about this new information.
The first major study that focused specifically on the link between Taxotere and permanent hair loss was performed by Dr. Scot Sedlacek in 2006 at the Rocky Mountain Cancer Centers in Denver, Colorado. He surveyed almost 500 patients that he had personally treated between 1994 and 2004 with different regimens of chemotherapy, some of which included Taxotere. He found that 6.3% of patients who were treated with Taxotere experienced hair growth that was less than 50% of the rate they had prior to chemotherapy treatment up to 7 years after their treatment was completed. In contrast, none of the women in the groups receiving chemotherapy that did not include Taxotere developed persistent alopecia. In the conclusion of his study, he advised, “Such an emotionally devastating long-term toxicity… must be taken into account when deciding on adjuvant chemotherapy programs in women who likely will be cured of their breast cancer.”
Since this initial study, many other researchers have found evidence of the link between Taxotere and permanent or long-term hair loss. At the National Cancer Research Institute’s 2014 Cancer Conference, a group of scientists in the United Kingdom presented a paper which put the risk of hair loss even higher than previous studies. Of 134 completed questionnaires that the researchers sent out, 21 or 15.8% of patients reported persistent scalp hair loss 3 years after they had completed their treatments of docetaxel (the compound marketed as Taxotere). Not only were patients having difficulty regrowing hair on their scalp, “5 patients reported no regrowth of eyebrows, 2 patients reported no eyelash regrowth, 6 no regrowth of nostril hair and 14 no regrowth to other parts such as legs.”
In 2012, yet another study highlighted the connection between the chemotherapy drug and permanent hair loss. A study published in the Annals of Oncology reviewed 24 women suffering from alopecia induced by Taxotere. The researchers ruled out other causes of the hair loss, such as vitamin and mineral deficiency. They concluded that the women showed very similar patterns of hair loss, characterized often by loss of eyebrows, eyelashes, and thinning of the hair all over their scalps. Thus, in 2012, they found that “permanent and severe alopecia is a newly reported complication” of the drug regimen including Taxotere.
Treatment for Permanent Hair Loss
There is no cure for permanent hair loss because the hair follicles are no longer active. To prevent hair loss as much as possible, some cancer treatment centers will give patients cold caps to wear during the administration of chemotherapy to reduce blood flow to the head while the drug is injected. This works in some cases, and to a certain degree, but it is far from a solution, and the effectiveness of this technique decreases as the dosage of Taxotere increases. For those experiencing persistent hair loss, some dermatologists suggest topical applications of minoxidil (the active ingredient in Rogaine). While this compound can help in some cases, it must be applied twice a day for the rest of a patient’s life or the hair will fall out. Even with this schedule, minoxidil will not work for the majority of patients, and the compound can have its own toxic side effects.
Of course, even if the possibility of permanent hair loss caused by Taxotere was advertised, it is likely that many women would still elect to take the drug if there was no other alternative. Regardless, patients have the right to informed consent about the drugs to which they are submitting their body, and alternatives to Taxotere do exist. Pharmaceutical companies should never be permitted to conceal unfavorable information, even if it is not life-threatening because it violates a patient’s right to information and prevents them from participating in their own treatment and making the best decisions for themselves. In addition, some patients may have chosen a different chemotherapy regimen if the threat of permanent hair loss were disclosed appropriately.