When I wrote my last post about hair, I wasn’t completely clear about my hair situation because it would have made the post too long: When I said my hair post chemo was growing back wavy instead of straight, I should have said about 20 percent of my hair is growing back that way.
I didn’t lose all of my hair during chemo.
That’s not because of luck. It’s not because the drugs I was given don’t cause hair loss. It’s because I was fortunate enough to be part of a feasibility study at University of California-San Francisco (UCSF) that aims to help breast cancer patients keep their hair.
Each time I went in for a chemo infusion, they hooked me up to a high-tech machine from Sweden that pumped coolant into a neoprene cap, cooling my scalp to approximately 40 degrees Fahrenheit.
Called the DigniCap machine, it made me feel like I was sticking my head in an Alpine lake for several hours. It made me look like a Russian cosmonaut, as you can see by the pictures that accompany this post on my personal blog.
When I was going through it, the comment threads could be critical: Some people said it was vain to want to keep your hair during chemo. Some asked, why focus on something trivial like hair when you’re fighting cancer? Some said it wouldn’t work, and that I was risking getting cancer in my scalp.
Medicine can be a very conservative field—new treatments are experimenting with people’s lives after all—and many doctors remain skeptical of scalp cooling because studies done a few decades ago failed. Some doctors won’t consider anything that’s not been approved by the Food and Drug Administration.
Yet the national health services in Britain and France cover scalp cooling to prevent chemo-related hair loss. Various scalp cooling systems are being distributed in Europe, the Middle East, and many other countries.
Another system, Paxman scalp cooling, developed by a company that originally made beer coolers, has become widely available in Britain. Paxman has recently expanded into Canada, Turkey, and the Middle East.
My UCSF doctor, Dr. Hope Rugo is a world-renowned oncologist. She said that scalp cooling systems have improved. Dr. Rugo also told me she and her colleagues did a review of 83 scalp-cooling studies around the world, and they found that scalp metastasis after scalp cooling is incredibly rare. It occurs in less than 1 percent of patients.
Scalp cooling works by cutting off blood flow to hair follicles during chemotherapy infusions. The drugs go into your system and circulate throughout your body, throwing monkey wrenches into the systems that help cells divide. If cells can’t divide, they die. It may take a week for these monkey-wrenches to result in cancer cell death. But the drugs quickly shunt to your bladder, usually within an hour or two. If you can keep the chemo away from your hair follicles for that short time, you can avoid losing your hair.
Unfortunately, saving your hair during chemo remains rare in America. I was one of only 20 American patients who tried the DigniCap ™ machine last year. The official results haven’t been released yet, but I know many of the other patients in the trial and most of us kept our hair. The team plans a Phase I clinical trial with about 100 patients.
“Great,” you’re probably thinking. “What good does this do me now, if I don’t have breast cancer and I’m not part of this tiny clinical trial?”
You—in fact any patient who’s undergoing a treatment that causes hair loss—can use a system called Penguin Cold Caps right now. Approximately 50,000 cancer patients worldwide have used the Penguin Cold Caps to save their hair. At least two dozen U.S. medical centers have installed freezers for the caps, including leading cancer centers like UCSF and Weill Cornell Medical Center in Manhattan.
The Penguin Cold Cap system uses patented gel-filled caps instead of a fancy computerized refrigerating machine. The caps must be changed every 30 minutes.
Penguin Caps demand logistical effort: You need dry ice and a couple of coolers to hold the caps. You need to invest about $100 in a fancy infrared thermometer to check temperatures. You need a friend or two to help you get the caps on and off quickly. It costs $1,500 for three months, and $75 a month after that. But it works. I saw it work on other patients at UCSF.
Obviously, you need to get your oncologist’s OK before using the Penguin Cap system. Penguin Caps aren’t right for everyone: The shape of your head and the thickness of your hair seem to play a role in success. Cooling does not prevent hair loss with all chemo drugs—anthracylines and taxanes seem resistant to cold therapy. Cold caps cannot be used in patients suffering from leukemia or lymphoma because of the fear of mestastasis in those non-solid cancers.
Hair loss isn’t trivial. What are the first things other people notice? They notice your face and your hair. The prospect of going bald was the first thing that reduced me to tears after my diagnosis.
Hold onto your hats. You won’t necessarily need them.