A Phone Call No. 6

“Hi, Heather? This is the clinical trial coordinator from UCSF. Is this a good time?”

I had been expecting this call. I’m a big believer in academic medicine and always sign up for clinical trials if I’m eligible. I am amazed to get this call only 24 hours after my first appointment with the medical oncologist.

“I want to talk to you about the DignicCap trial,” she says.

“I’m all for keeping my hair during chemotherapy,” I say. “So what can I do for you?”

“I want to explain how it works. The cap comes in several sizes. We’ll fit you for the right one when you come in for your chemo education appointment. There’s an inner cap just to keep it sanitary, then a silicone cap that goes over it. A neoprene cap fits over that. There are lots of channels in the silicone cap, and cooled liquid flows through them. We slowly bring the temperature down from room temperature to about 5 degrees Celcius.”

“What the thought behind it?” I ask. “Does it slow down the circulation in your scalp so that fewer chemo drugs make it to your scalp?”

“Exactly,” the coordinator says.

Amazing how something so simple can make such a big difference. Apparently, the Swedish company “Dignitana” has used their device on thousands of patients in Europe and Japan. This clinical trial is supposed to clear the way for the device in the US. In European trials, eight out of ten people who used the DigniCap kept their hair.

“Sounds pretty cold,” I say. Actually it sounds like sticking my head in Lake Tahoe for six or seven hours.

“It is cold,” the coordinator says. “Patients say the most uncomfortable part is when the temperature gets down to 10 degrees Celcius. You can get a burning sensation or a headache. But then, the body adapts and it’s usually well-tolerated.”

Expect an “ouch” when any health care professional starts talking about things that are “well-tolerated.” But I’m game. Better cold for a few hours with several courses of chemo, than cold with no hair for several months.


About leftbreast

I have had breast cancer. I was diagnosed at 47, and am now 49. I have finished "active treatment," two surgeries, chemo, radiation, monoclonal antibodies. These days, I only take a drug to suppress my uptake of estrogen, since my tumor was highly reactive to that hormone. I have been married to my husband Pete for 21 years. I have a stepdaughter, Maureen, 30, and a daughter, Erin, 10. I've been a freelance magazine journalist for 20-plus years, covering everything from Chinese foreign policy to Catholic nuns to endangered species. I have had a great life. I have lived in Asia and all over the United States. I have spent nights with tree-sitters in Oregon and with astronomers at the Mauna Kea observatory in Hawaii. I've been to a cocktail party on the poopdeck of a British destroyer docked in Shanghai. I've taken the bus to Tibet, and tramped through the cloud forests of Panama with biologists. A magazine sent me on a raft trip down the Colorado through the Grand Canyon; another sent me to cooking school for a week. I have spent time with celebrities, presidents and heroin dealers. I love my work. I have a loving, supportive family and more friends than I probably deserve. I have had the space and time to camp, ski, cycle, garden, cook and spoil my pets (an Australian shepherd, a German shepherd and a tabby cat). If it all ended tomorrow, I would have to say that it has been a really, really good ride. When I was in thick of treatment, I was simply fighting for more time. Now, I'm trying to connect the experience of cancer with the rest of my life, with the time that's been won. I hope the cancer never comes back, but if it does, I'll be ready. That's what this blog is about.
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