Cold Cap is the New Bald

A new frontier for hair loss prevention for breast cancer chemo patients.

Last chemo round on March 16, 2017 (the day before my 43rd birthday). Plenty of hair under that cap!

“Why did you decide not to do the whole cancer warrior thing and go bald?” This is the question a friend asked me a few days after I finished my fourth round of chemotherapy for stage 2 breast cancer. My answer was simple: “Why would I choose to lose my hair when there is something out there that prevents that?” What I was referring to is the cold cap. Something that’s been around for several decades in Europe but only recently came on the scene in the U.S.

The name is self-explanatory. Literally a cold — ok freezing (-26 to -36 degree Celsius) — hat that is worn prior to, during and after the chemotherapy infusion. The premise is that by freezing your head with cold caps during infusions of hair-destroying chemo, the drug itself is prevented from reaching and attacking the hair follicles. Yes, you might “shed” hair in between infusion cycles but, if properly frozen, most women retain at least 50% of their hair. Anecdotally, that percentage might be higher. Recent studies show that cold caps are particularly effective for patients undergoing most types of chemotherapy for breast cancer.

For me, that was absolutely the case. After 12 weeks of four rounds of Taxotere and Cytoxan, I still have my hair. Probably 60 to 70% of it. Sure, I have a few areas of stubble and patchiness where more hair fell out than elsewhere on my head, but I suspect that no one other than my family and closest friends would even notice. Turns out most of us have anywhere from 100,000 to 150,000 strands of hair on our heads so, even if considerably depleted, there is still plenty of scalp coverage.

There is no question the cold cap can work for many breast cancer patients. So, why is it not commonplace in infusion centers across this country? The answer is three-fold.

First, like anything new to the marketplace, it takes time to be adopted by patients and medical institutions. With only two cold cap systems having been cleared by the FDA since 2015 (Dignicap and Paxman), patients are still just learning about this tool and are just starting to ask their oncologists about its efficacy, risks and availability. The flurry of press (NPR, NYT, CNN, etc.) around the cold cap this past February undoubtedly awakened the medical and patient communities to the cold cap’s existence. We are in the awareness-building phase in the life of cold caps.

Second, patients that are aware have to overcome access, administration and affordability hurdles. These are significant barriers to broader usage of cold caps. Right now, Dignitana (a Swedish company) only offers its plug-in cooling system in about 100 infusion centers in the U.S., including 17 systems at Sloan Kettering. Paxman, a British company, also has a plug-in system that just received FDA clearance and will be launching this year at various partner institutions in this country. In the meantime, patients aware of the cold cap and interested in using it are left to their own devices.

Assuming their oncologist and/or treating institution will allow its use, patients can rent or buy portable caps. Companies like Penguin and Arctic rent a package of non-FDA cleared caps for a monthly fee (approx. $500 per month) while Elastogel sells caps on sites like Amazon (approx. $100 each). In either case, a patient will typically need four caps during the course of each infusion as those caps have to be frozen and rotated on the head every 20 minutes. Along with the caps, patients need a veritable kitchen sink of items to ensure the cold caps work as they should. This includes up to 55 pounds of dry ice per infusion that the patient needs to source and keep cold — think huge Igloo cooler on wheels. Most infusions centers don’t have bio-medical freezers or, if they do, can’t or are unwilling to give space to cold caps.

With all of these things to manage, a patient certainly cannot go it alone. To pull off cold capping, a patient needs another set of hands and that’s yet another challenge. How many patients have a friend or family member who is able to commit to multiple days away from work or other obligations? Administering the cold cap is an all-day back-breaking job — from wheeling in a cooler or two full of dry ice, to switching out the cold cap every 20 minutes (for a nearly 7 to 8-hour period all told) to closely monitoring that the cold cap is touching all the parts of a patient’s head that it should.

This can really add up both logistically and financially. It cost me nearly $2,000 to save my hair using the Penguin caps. That money was out of my own pocket since insurers have yet to acknowledge the cold cap as a legitimate and effective alternative to wigs. I think that will change soon. When you take together the cost and challenges of administering the cold cap, it can be daunting for the average or under-resourced patient. I was just lucky to be able to afford it and have a wonderful husband who missed four days of work to be my “cold capper” (grueling work).

Third, I suspect that many breast cancer chemotherapy patients do know about the cold cap but have accepted that hair loss is part of the cancer experience. Or, they worry that if they keep their hair, the chemotherapy will somehow be less effective in killing any loose rogue cancer cells in their body; on this point, research shows there is no higher incidence of scalp metastasis in patients that do use the cold cap than in those that don’t.

Going back to my friend’s question. There is no question that saving your hair while battling cancer changes the whole dynamic around your treatment. People associate baldness with cancer. The two are inexorably intertwined. While the “bald is beautiful” saying is widely-embraced, the truth is that when you’re bald, you do look sicker than when you have hair. When you’re bald, people automatically know that you are sick and battling a deadly disease. There is a concern, pity and awareness that automatically comes to cancer patients with no hair. That is not the case when you have prevented hair loss using the cold cap. You continue to look like yourself, other than having some of the other physical tells of chemotherapy like missing eyelashes and eyebrows, a swollen face from steroids or under-eye bags from sleepless nights. On the outside, you look normal. Yet, on the inside, you are in no less pain. You experience no less fatigue. You are no less devastated by the prospect that cancer might kill you. When you prevent hair loss using the cold cap your battle becomes a private, silent and inscrutable one. There are pros and cons to that.

As the cold cap becomes an integrated part of the standard of care for chemotherapy patients, especially breast cancer patients, I can only hope the narrative of the cancer fight will no longer be defined by being bald. Rather, it will be defined by the courage it takes for every chemotherapy patient to fight for their life with the chance to look like themselves while doing it! When that happens, friends won’t ask you why you chose not to go bald. Instead, they will tell you that you look strong and healthy. They will tell you that you are a warrior!