Editor’s note: Heather Millar wrote this post about DigniCap after it was approved by the FDA in December of 2015. Another manufacturer, Paxman Cooling, recently completed research on their own version of the cold cap and is now seeking FDA approval. You can read more about their findings here.
I let out a loud “whoop!” of delight when I heard the news this week that the DigniCap cold cap has been approved by the Food & Drug Administration.
I suspect many of you are wondering: What the heck is a DigniCap cold cap? Why would it be such cause for joy?
Let me back up. When I was going through chemo 5 years ago, I was part of a feasibility study of the DigniCap. I was one of a small group of Stage I breast cancer patients who agreed to wear a goofy silicone cap with channels sewn all over it. An hour before each infusion, I got my hair wet and, with the help of a research coordinator who’s now a good friend, pulled the cap on. Then we pulled a neoprene cap on.
When we were ready, a computerized machine connected to the cap then started to push coolant through those channels. Gradually, the coolant stepped down from room temperature to just above freezing. The cold made the blood vessels in my scalp contract. When the chemo infusion started, the constricted blood vessels blocked the chemo drugs from reaching my hair follicles.
The block wasn’t absolute, so I did lose a little hair. But no one but me noticed. I kept my hair through 6 infusions.
About halfway through chemo, some neighbor kids came over to play with my daughter. The mom called me not long after they arrived to ask if I was okay having them visit. “I asked them to make sure it was okay because you’re sick,” the other mom explained. “But they said, ‘Heather’s not sick! She doesn’t look sick! She doesn’t act sick!”
Actually, I felt horrible through most of chemo. But I was so glad that it didn’t seem that way to the kids. I was glad to preserve that bit of normalcy for my daughter. I tend to be the queen of over-sharing. I was ridiculously public about my cancer experience. Still, I was glad I didn’t have to explain my illness to everyone – to the butcher, the baker, the candlestick maker.
Even if I still had to draw eyebrows on, the presence of mostly normal hair allowed me to fake out most people.
Full disclosure: Being one of the participants in the clinical trial for DigniCap, I’ve been interviewed for TV, websites and magazines about the DigniCap countless times. Since I’m a journalist, I know how to give good interview. I’m also one of the (unpaid) testimonials on the company’s website.
So I’ll quote myself: “The desire to keep your hair during chemo is not about vanity. It’s about not wanting to create yet another barrier between yourself and the rest of humanity. The desire to belong is so strong that many women will make medical decisions based on the desire to keep their hair. My oncologist, Dr. Hope Rugo, says that she often has patients who resist chemo because of the hair loss.”
DigniCap isn’t a perfect solution. First, as the cap brings down the temperature, your head gets uncomfortably cold (imagine sticking your head in an icy alpine lake). I took painkillers to take the edge off. But once the cap reaches the target temperature, you go numb. And, strangely, you don’t feel cold in the rest of your body. Secondly, the cap only saves the hair on your scalp. You lose it everywhere else; I mean everywhere.
Also, scalp-cooling may not be appropriate for all cancer patients. I suspect most oncologists would not recommend it for patients with more advanced cancers. It doesn’t work for everyone. In the studies that led to the FDA approval, about 70% of the patients felt that DigniCap was successful. In studies of more that 6,000 patients abroad, 80% of patients felt the system worked.
If you’re just starting treatment, you might want to ask your doctor about DigniCap. With this FDA approval, I’m sure it will be installed at infusion centers around the country.
If I were facing chemo again, I’d go for it.