How I kept my hair during chemo, By Debra Sherman

This is a re-post of a popular blog:

How I kept my hair during chemo, By Debra Sherman…

I’ve never liked my hair much. For 40 years, I have tried to tame my frizzy curls with blow driers, flat irons and chemicals that promised, but rarely delivered, silky, straight hair.

I finally came to appreciate my unmanageable hair when my doctor told me the chemotherapy he was prescribing would cause “some” hair loss.

“How much is some?” I asked, trying to sound calm.

“Just mild thinning,” he said, waving his hand, as if it didn’t matter.

“Can you be more specific?” I asked, sounding a little more concerned.

“It’s different for everyone,” he said. End of conversation, like it didn’t matter.

But to me, it did matter. A lot.

I’ve got thick hair, so losing 20 percent of it wouldn’t be that noticeable, but anything more would make me look bad and sick. I don’t want to look sick. It would scare my kids. It would scare me!

All of my chemotherapy drugs cause hair loss. In my search for information, I ran across something called cold caps made by Penguin Cold Caps, a London-based company that was recently featured in a USA Today article.

The caps are filled with a gel that’s cooled to -27 degrees Fahrenheit using dry ice or special freezers. Cooling the scalp causes the blood vessels constrict, so it is difficult for the drugs to reach the hair follicles.

Me wearing a cold cap. It’s cold!

My doctor wasn’t familiar with the caps, which aren’t approved by the Food and Drug Administration, but he didn’t steer me away from them either. The nurses discouraged me because they were cumbersome, because I’d need to bring my own cooler, and because they are uncomfortable.

Some doctors raised concerns the cold caps might cause cancer to spread to the scalp. This worried me, so I called the founder of Penguin Cold Caps, Frank Fronda, and asked about it.

Fronda, an engineer by training, said it’s difficult to prove that they cause scalp metastasis. He cited old studies of breast cancer patients where the incidence was minimal. There were other studies, also 10 to 20 years old, that denied reports of scalp metastasis.

While the caps are widely used in Europe and Canada, Fronda said he did not have the money to run a clinical trial needed to win approval from the FDA, which has a higher bar. Sweden’s Dignitana AB also makes a device for scalp cooling and is currently running a clinical trial in the United States to seek regulatory approval. Someone — like me — who insists on proceeding despite the lack of approval pays $450 per month to rent the Penguin caps.

I found other patients who used the Penguin product. These were breast cancer patients, a group that almost always suffers total hair loss because of the type of chemotherapy they get.

Annette Sollars, 49, was one such patient. She owns a retail eyewear shop called Eye Want in Chicago. The first time she underwent chemotherapy, she lost all her hair. The second time, she used the caps and didn’t lose her hair.

“I didn’t stop working and that was one of the biggest reasons I wanted to use the caps. I didn’t want to get that look you get when you have cancer. I wanted my customers to know I’m going to be here when they come back,” she said.

I used the caps, despite the risk, and found them difficult and uncomfortable, but probably worth it.

On treatment days, I went to the ice cream store and spend $50 on dry ice. I packed it with 8 caps into a large cooler. To my neighbors, it must have looked like my husband and I were going on a picnic.

The caps were heavy on my head and had to be changed every 30 minutes to keep the scalp cold enough. After 4 rounds of chemo, I haven’t lost any more hair than usual. Since I was supposed to lose some, according to my doctors, and I didn’t lose more than usual, I’d have to call it a success, unless I develop cancer on my scalp!

While the nurses were nice, it seemed like they wondered why I would be concerned with my hair when I’m fighting a deadly disease. One nurse, Lisa, was supportive and so I asked for her for my subsequent treatments. She seemed to understand that there’s more to me than my disease—and that from my perspective, even my sometimes unruly hair is part of who I am.