When I was getting ready for chemotherapy, I was told that, with the chemicals I would be getting, Taxotere and Cytoxan, I would lose my hair, but that it would grow back, no problem. I had heard rumors about methods to preserve hair involving hypothermia (cold), but the various oncologists I had asked either didn’t know anything about them or else they told me that those methods did not work. Their point of view seemed to be that worrying about hair loss was vain and trivial and they preferred to focus on the goal of chemotherapy, which was saving lives. I resented their paternalistic attitude. Of course breast cancer patients consider their lives more important than their hair, but I knew from my support group that hair loss is no small thing. For one thing, the loss of privacy can be a big deal. Other people notice wigs and scarves and many feel free to ask about them. Some even offer to pray for you. Many cancer patients would rather choose the people with whom they want to share their health information. Also, making it obvious to employers, clients, and co-workers that you have cancer can have repercussions on your career or business. And having Mom’s hair fall out frightens their children, even adult children. Hair is one more item in a long list of losses that cancer patients suffer, and grieving is completely appropriate.
As usual, I turned to other cancer patients for information. Unfortunately, everyone in my breast cancer support group had been told the same thing by their doctors, and they didn’t know anything more than I did. However, when I consulted the online discussions on breastcancer.org I found a trove of information:
First, many women felt heartbroken and betrayed by their doctors because their hair loss was permanent, not temporary as they had all been promised. I went online and found a 2010 report by CBS News.1 It said that after small studies suggested that as many as 6.3 percent of patients lose all their hair forever from taking Taxotere, (I would be taking Taxotere!) its manufacturer, Sanofi-Aventis, said it was “unable” to disclose how many women are rendered permanently bald by its breast cancer drug.2The European Medicines Agency (EMEA) said such data “are not routinely collected.” From what I could glean from various sources, the overall rate of permanent baldness is around 6%, but it goes up with age, so that my chance of permanent baldness was around 17%. Way too high. Although some cancer patients don’t care very much about hair loss, I think they might care a lot more if they knew it could be permanent. It certainly increased my incentive to look for a way to keep my hair.
Second, many women were using cold caps and, depending on the types of chemicals they were getting, they were succeeding in saving their hair. I looked on the websites of the American Cancer Society and the City of Hope and found nothing. However, eventually I found the following in the Annals of Oncology:
Scalp cooling has become an increasingly effective method to prevent hair loss, especially when anthracyclines or taxanes are used. Unfortunately, many studies were small and badly designed and are therefore difficult to compare. There is a considerable variation in the success rates in the various studies. This remains unexplained, but the cooling time, the chemotherapy used and the temperature seem to be influential. Scalp cooling should not be used if chemotherapy is given with a curative intent in patients with generalised haematogenic metastases. The majority of patients tolerate cooling very well.3
This, along with the testimonials of the women on the discussion boards, sounded pretty good to me.
I started investigating methods of scalp cooling. Apparently, although there has not been much interest in the United States, scalp cooling has been in use for some time in Europe, where national health insurance often pays for it. Some types of health insurance in the US will pay for “cranial prostheses” (wigs) and I have heard of one case in which insurance paid for the cold caps as a substitute for the cranial prosthesis. Medicare pays neither for wigs nor for cold caps, so I was on my own in that respect.
I found several methods of scalp cooling. However, the most easily usable were considered medical devices and were not approved by the FDA for use in the United States. One of them, the DigniCap, was undergoing clinical trials at the University of California San Francisco.4 It was made by a Swedish company (www.dignitana.com), and the machine more or less resembles the old-fashioned hair salon dryer. You put a cap on your head which is connected to a machine that keeps it cold. It is easy to use: you simply plug in the machine, put the cap on, and take it off when you are done. I found some of the people on the discussion boards from outside the US who were using it, and I ” even found one who had participated in the clinical trials in UCSF. They all reported excellent results.5 There was a similar type of cooling cap made in the UK, called the Paxman Orbis Scalp Cooler that had the same problem with the FDA, although it has been widely used in the UK and subsequently expanded into Canada, Turkey, and the Middle East.6 The only caps that I could find approved for use here in the USA were Penguin Cold Caps. Because they are not attached to a machine, they are not considered medical devices. However, they are cumbersome. Since there is no machine to keep them cold, they must be kept in a freezer and changed every 30 minutes. Because of the FDA restriction, these were the only caps that that the women in USA were using, and they were the ones recommended by The Rapunzel Project.7 The Rapunzel Project is a nonprofit organization formed by two breast cancer survivors for the purpose of making cold caps accessible to a wider range of cancer patients. The biggest obstacle to using the caps is that special freezers must be used because regular freezers are not cold enough. The alternative is to use dry ice, which can be even more unwieldy. The founders of The Rapunzel Project started fundraising and donating freezers to chemotherapy centers across the country. Even though the freezers are free of charge, many chemo centers decline to use them. Patients who use cold caps represent more hassle for chemotherapy centers. Because the start of the infusion must be coordinated with the amount of time the cap has been on the patient’s head, chemotherapy nurses cannot administer infusions at their leisure. The center must also find room to accommodate the freezers. Another consideration is that patients usually request to stay at the center to complete the additional four hours of cold cap therapy that is required after the completion of the chemotherapy infusion.
In addition to the cold caps for the head, some people were using cold bands to preserve their eyebrows and ice mittens and footies to preserve their nails.
Eventually I did find a local chemotherapy center that had the freezers, and it seemed to be better than other local chemotherapy centers in several other ways as well. I found an oncologist there who would take my case, and I asked her about a rumor I had heard that scalp cooling might prevent the chemo from reaching the brain and thus increase the chances of brain cancer. She said that chemo does not cross the blood-brain barrier anyway, so scalp cooling would make no difference. My chance of scalp cancer might be elevated, but since scalp cancer is very rare she did not think I would need to worry about it.
Encouraged, I went to Penguin Cold Cap’s website.8 There was an instructional video on the site, which explaieds how to use the caps. There was a lot to do: the caps must be kept at a certain temperature and changed and fitted properly every 30 minutes, and this must happen during each infusion. It would be nearly impossible for a patient to do it alone. Although my daughter volunteered to help, I felt discouraged and decided that using the caps would be too hard. The number of hours required would not be compatible with my daughter’s work schedule, and I thought it would be too much to ask of any of my friends. At that point, theinventor of the caps who lives in London, called me in response to an email I had sent requesting information. He gave me the contact information for Cindy, whose profession it is to help people with their caps, and who lives not too far from me.9 I emailed Cindy, and she was available. She would be with me during each infusion, change the caps every 30 minutes, and guide me through the whole process.
I contacted the inventor to ask how to care for my hair during chemo. He sent me a booklet and also suggested I contact past users. He asked me to keep in touch with him during chemo about the condition of my hair, so we could make decisions based on how the hair was holding up. I had already sent him a photo of my hair in its pre-chemo condition. He told me that I should take 10 drops of silica (after checking with my doctor of course) every day and drink a pint of water every half hour during each infusion, to reduce side effects. I may not wash my hair for two days preceding chemo and for two days after, but I must wash it (very gently) on the third day post-infusion, and once a week between infusions. Chemo hair is dryer and more delicate than normal hair and requires special treatment. Most shampoos are too damaging. I must use a Ph-neutral, low-detergent shampoo, dilutedwith water. He would not recommend any particular brand of shampoo. I contacted the Rapunzel Project and other cold cap users to see which hair products they would recommend. I ended up buying the one recommended by the Rapunzel Project: Kenra shampoo, conditioner, and hair spray. I was told that it is all right to blow-dry using cold air but not hot air. This special treatment should continue for at least six months after chemo, because it takes the hair that long to get rid of the chemicals, and the hair follicles will be very fragile during that time. It is all right to color the hair after three months, but only with vegetable dye.
Since I have routinely dyed my hair for decades, I bleached it very blond before starting chemo, so the white roots growing out made a minimal contrast and didn’t look too bad. I should note that the inventor instructs that hair must not be bleached or colored for two months prior to chemotherapy, but I did it anyway.
I got the available dates from the chemotherapy center and coordinated with the dates Cindy would be available to help with the cold caps. There would be four infusions exactly 3 weeks apart, always on a Tuesday at 10 AM.
I rented 14 Penguin cold caps and eight bands, which would be shipped from Michigan. Cindy told me to put them in my freezer as soon as they arrived. Fortunately, I had an extra side-by-side refrigerator/freezer in my garage, and the caps filled the freezer side. She said I should try to get the caps to the chemo center to put in their freezer by Thursday if possible, Friday at the latest (before the weekend), because they require at least two days to cool down before each Tuesday infusion. We should try to meet around 9AM on Tuesday so that the caps would be on my head 30 minutes before the infusion began at 10AM. I would have to stay about 4 hours after it ended, to keep using the cold caps. I was told to bring an electric throw blanket for heat, and moleskin, and a painkiller such as Tylenol, to take before the first cap. The first cap would hurt because it is so cold, but after that the scalp is numb.
I bought the silica drops, the shampoo and conditioner, the electric throw blanket, and the moleskin that Cindy asked me to get.
To save my nails, I was planning to use oven mitts with gel packs on my fingers and toes during the Taxotere portion of the infusion (the oncology nurse told me that Cytoxan does not damage nails). People on breastcancer.org also recommended using NutraNail, so I bought that too.
On the day of chemo, I gathered my electric throw blanket, the moleskin Cindy requested, painkillers, warm socks, and my foot roller. I brought a pint measure to make sure I drank a pint every half hour, and I brought a friend.
I arrived at the chemo center at 9AM and took a painkiller before the first cap, but it still hurt because it was so cold. After that the scalp was numb. My body felt very cold, but I brought warm clothes, and the electric throw blanket helped a lot. The nurse eventually found a vein. They did blood work first and then started the infusion, and I drank the liquids I had brought. We used the oven mitts with the cold gel packs on my fingers and toes during the Taxotere part of the infusion. The rest of the time I could wear warm socks. I relaxed in a lounge chair and was not really uncomfortable. Between my friend and Cindy, we had a lively conversation and a pretty good time. This was lucky because I could not read or do email. The cold caps covered my forehead and ears, and I could not get my glasses on. When I had to go to the bathroom, which was often with all I was drinking, I took the pole with the IV bag with me. The nurse finished around 2PM, and there were four hours extra for the cold caps.
The other three infusions followed the same pattern. In the end, I did shed some hair, but nobody but Cindy and I could tell, and there were no bald spots. Thanks to the cold caps, I still had hair on my head, but I lost most of my body hair. I still had a few pubic hairs, scanty eyebrows and eyelashes, and a couple of really annoying hairs on my upper lip. I did not need anything more than a little eyebrow pencil, but some patients lose their brows and lashes completely. I heard that Latisse, a prescription drug, accelerates regrowth, but some patients are leery of putting more chemicals on their bodies and opt to draw them on with eyebrow pencil instead. Supposedly, they grow back in about four months. My fingernails and toenails came through unscathed, and my body hair started coming back about two months after chemo ended.
After chemo, when I would go to my cancer group or to the doctor, they all seemed surprised to see hair. Apparently they never believed it would work.
All my life I had thin, fine, limp, scraggly hair. During chemo my hair got much drier, which gave it more body, and it actually looked a little better than usual. Soon after chemo finished, my hair went through another phase that I called “fuzz balls.” It looked somewhat damaged, but not really awful. About four or five months after that, my hair suddenly became gloriously thick and curly!! It required virtually no care—I would wash it and fluff it up with my fingers, and it looked great. Everyone said they noticed that I looked much more attractive. They didn’t know what it was, but I knew it was my hair. I have been told that this change in hair texture is common after chemotherapy, but that it usually doesn’t last more than a few months.
Because hair color usually contains suspected carcinogens, I asked around and eventually found an eco-salon that uses safe coloring products in a non-toxic environment. I found that the lighter hair color had been very liberating—I could go for quite a long time without my roots showing—so I kept it, and I got a good cut, and the whole thing was quite easy to maintain. However, eventually, the beautiful hair disappeared and my bedraggled hair returned. It was more depressing than ever, now that I had gotten used to having good hair, so I decided to get a perm. Normally eco-salons do not do perms because of the noxious chemicals, but my hairdresser took pity and looked around and found a safe perm for me. The perm makes my hair look a bit better, although nowhere close to my former crowning glory. If I had been able to keep it, I wouldn’t say it would have been worth having cancer, but it would have been a real silver lining.
- Edwards, Jim, writer. “Sanofi, European Regulators to Bald Breast-Cancer Patients: Drop Dead.” In CBS News. CBS. March 8, 2010.(Go back)
- In 2016, a Taxotere class action lawsuit investigation was opened into claims that the manufacturer, Sanofi-Aventis, knew that permanent hair loss from Taxotere side effects could occur but failed to disclose this risk. The failure to adequately warn women deprived them of their right to choose other breast cancer treatments that were just as effective but allowed hair growth after chemo to return. Now these women are left physically disfigured and emotionally scarred. There are lawsuits pending in the U.S., Canada, and elsewhere.(Go back)
- Grevelman, E. G. “Prevention of Chemotherapy-induced Hair Loss by Scalp Cooling.” Annals of Oncology 16, no. 3 (2005): 352-58. doi:10.1093/annonc/mdi088.(Go back)
- “Scalp Cooling System from Dignitana” Dignicap. Accessed July 11, 2016. https://www. dignicap.com. (Go back)
- Dignicap was approved by the FDA in 2015.(Go back)
- “Scalp Cooling – Paxman Scalp Cooling.” Paxman Scalp Cooling. Accessed July 11, 2016. http://paxmanscalpcooling.com/scalp-cooling. As of this writing, Paxman has been granted Investigational Device Exemption (IDE) approval by the FDA, so that trials can be conducted . You can find updates about scalp cooling technology at http://www.rapunzelproject.org (Go back)
- “What Is The Rapunzel Project?” The Rapunzel Project® Accessed July 11, 2016. http://www.rapunzelproject.org (Go back)
- “Chemotherapy Caps for Chemo Patients.” Penguin Cold Caps. Accessed July 11, 2016. https://penguincoldcaps.com (Go back)
- As of this writing, Cindy is still helping people in the Los Angeles, Orange County, and San Diego areas with cold caps, although she is working with a different brand, Elastogel. Unfortunately, she says the Dignicaps, which are easier to use, are less effective at preventing hair loss because they do not get cold enough. For more information, you can contact her at firstname.lastname@example.org (Go back)