LEAVENWORTH, Kan. - A breast cancer survivor who lives in the Kansas City area is turning heads.
Darcy Romondo just finished six rounds of chemotherapy and kept her hair all the way through her treatment. She is the first patient in the metro area to wear the Kansas City-made chemo cold cap, even though it's been around for years.
Kansas City based Southwest Technologies said U.S. doctors either do not know it exists or often distance themselves from it because "it's more of a cosmetic to them," but the Food and Drug Administration is now taking notice and that means doctors and hospitals could soon jump on board.
Every three weeks, Romondo, a teacher at Leavenworth High School, leaves her classroom for chemotherapy treatments at Olathe Cancer Care. She goes armed with dry ice, her husband and a chilly, 41-degree chemo cold cap.
She looks at her husband as he puts the cold cap on her head during her sixth and last treatment, "I don't ever have to do this again."
She paid for the $2,400 treatment herself. She discovered it by chance through friends, she said.
The Southwest Technologies cold cap that Darcy used contains a unique gel they invented and pour in its North Kansas City manufacturing plant. The temperature of the cold cap slows down the blood flow in her scalp to reduce the chances the powerful chemo drugs will reach her hair follicles.
And after six treatments, she's kept almost all of her brown, wavy locks.
"I love that it's mine, I can put my fingers through it and I can still fluff it," she said.
Saving her hair is more than about vanity, Romondo said. It erases the stigma that comes with losing hair. She says she doesn't have to show the world what she would rather keep private.
"It's self-esteem, it's feeling like yourself, it's confidence," she said. "It's walking to the grocery store and not having people stop you and ask you ‘What's wrong with you?’ or telling their cancer stories. It's feeling like yourself every single day."
Doctors say hair loss is often the second or third question a patient asks after diagnosis. Hair loss is a despised side effect, one that oncologists admit makes some patients even delay chemo treatment.
Still, doctors rarely recommend it, including Romondo's oncologist in Olathe. Dr. David Lee said as a doctor he concentrates on the life-saving treatments.
"It's a luxury item. People are intrigued until they hear the cost. Most people don't have $2,400 sitting around." He said. "I don't know if it's a great product."
Two researchers, Dr. Hope Rugo, a medical oncologist at UCSF, and Dr. Susan Melin, a medical oncologist at the Wake Forest Baptist Medical Center, are now studying the on-average $2,400 dollar chemo cold cap called DigniCap to find out if it is an effective enough product for FDA approval. They believe doctors too often belittle the effects of hair loss.
Cold caps have been around since the 1970s, but very few American women use them because U.S. doctors and hospitals often won't jump on board until the FDA approves them.
Rugo and Melin said by this summer, after evaluating 4,000 cases and testing more than 100 patients, they believe they can prove to the FDA the caps work on most patients and that the cold therapy is safe. They said the chances of the cold preventing chemotherapy drugs from reaching cancer cells in a frozen scalp are extremely minimal. They also said they have found the cold therapy allows most patients to keep their hair. Each patient and chemo treatment is different.
"Once we realized my hair wasn't falling out,” Lizzy Cronin said, a breast cancer survivor from Texas who also discovered the treatment on her own. "We were like, ‘Why doesn't everyone know about this? Why wouldn't people do this? What's the deal?’”
If the FDA gives preliminary approval this summer, the researchers believe doctors and hospitals will begin to make it known and available to patients as it has been for thousands of patients in Canada and Europe.
In between treatments, Romondo continued to teach with no signs of breast cancer treatments.
"To me, that's the best part of this is to have people completely forget and treat me like a normal person," Romondo said.
She said she believes feeling good about yourself can lead to a faster recovery.
Romondo said one student, as she was going through chemo, raised his hand in class and asked a question she'll never forget, "He raised his hand in class and he said, ‘Where do you go every three weeks?’"
"It was one of those moments where I got tears in my eyes. I'm so glad you forget. To me, that's the best part of the this, is to have people completely forget and treat me like a normal person.
For more information on Chemo Cold Caps, log onto www.chemocoldcaps.com