In last week’s blog, we introduced you to Vivian*, who went from receiving her breast cancer diagnosis to weekly chemotherapy treatments within 2 weeks due to her HER2+ status and the aggressive nature of these types of breast cancer.
Before starting chemo treatments (weekly Taxol and tri-weekly Perjeta and Herceptin), Vivian’s nurse navigator shared information about cold capping with her. At her initial meeting with her oncologist, she was told that Taxol would cause hair loss and was offered information on cold capping as an option for preventing this. In her packet of instructions about chemotherapy, she found a brochure about cold capping. It was a trifecta Vivian couldn’t ignore. “I decided, ‘Yup, I am going to do this,’ even though I would have to do it for 72 hours!” she exclaims.
Cold Capping offers anyone going through chemotherapy a way to preserve their original hair. Chemotherapies work by targeting rapidly dividing cells (like cancer cells). Unfortunately, hair follicles fall into this category, too. An October 15, 2020 research study in the journal PLOS One found that cooled hair follicles absorb less of the chemotherapy and hair is retained.
Depending on the type of chemotherapy prescribed, the amount of cold capping varies. For Vivian’s twelve weekly Taxol treatments, her cold capping prescription meant that a typical 1 -2 hour chemotherapy infusion stretched out to 6 hours, as she would have to apply the cold caps for an hour prior to the infusion, during the infusion, and then 5 hours after the infusion.
“A technician came with me to every appointment to help me get the cold caps on correctly. They are like this helmet: they cover your whole head, down your forehead and down the back of your neck and they Velcro it in place,” begins Vivian. “The caps are on dry ice and frozen, and the tech changes them every 20-30 minutes so the scalp remains consistently cold.”
Amazingly, the cold from her caps for 6 hours was not painful. “I always took an acetaminophen before leaving my house because sometimes I’d get a little headache at first or a bit delirious-feeling. But it’s not bad. You’re just sitting there. you’re not going anywhere for 6 hours. Your body just adapts. I brought an electric blanket and wore a big fleece jacket.”
Wryly, Vivian shares, “You know what, they bring in the ice packs for your hands and feet when you’re having chemo (to prevent neuropathy), and the entire time I’m receiving my Taxol, my hands and feet are having ice packs. Why not my head?”
Vivian believes strongly that cold capping should be offered to everyone who goes through a chemotherapy that causes hair loss. “Every single person should have this option available to them. This should be the baseline. Part of your offering.” Unfortunately, not all insurance companies cover the cost of cold capping, which is billed based upon the number of hours and number of treatments prescribed. “You rent the caps and you can pay a technician to help you or have them teach you and a caregiver how to put them on. I couldn’t find someone who could take off for six hours over twelve consecutive Mondays to help me, so I hired a technician.”
“You’re hair is part of your sense of identity.” Because she has not lost her hair, Vivian feels that most people she comes in contact with – and that is very few during a pandemic in which she has been immunocompromised – probably don’t notice that she is a cancer patient. “I really have to say, it’s good not to be noticed like that,” she says with relief in her voice.
While she may look normal at first glance, Vivian’s cancer experience has been anything but easy. After Taxol treatments, she had surgery to remove the breast cancer, which had shrunk but she was not disease free. During that surgery, 4 lymph nodes in her armpit were removed as well.
The fallout from this surgery includes: a painful seroma (fluid filled pocket) in her armpit in the space left by the missing lymph nodes; scar tissue in her armpit developing into Axillary Webbing Syndrome, leaving her unable to lift her arm for upcoming radiation treatments; and because there was still tumor present, Vivian has to undergo a different year-long chemotherapy regimen after radiation ends.
“It feels like starting over again,” Vivian admits, voice trembling. “It is a real slap. You can imagine how upset I was to think I will be a chemo patient for another year. And to have toxin dripped into me for an entire year, every 3 weeks! It’s like the Perjeta and Herceptin I’ve already had doesn’t even count!”
How has Vivian coped through all of this? With the support of family, friends, and a Firefly Guide named Rhetta*. “I have a Firefly Sister. She’s been a dream – my earth angel. We have a fantastic friendship. We talk every week. We have the same cancer. Our kids are the same age. We live in the same neighborhood. We are the same age. We’ve been divorced and remarried. We have a lot in common. We have the same worldview. It’s like we were meant to find each other,” Vivian laughs. “For me, I just can’t say how much of a lifesaver that Rhetta has been to me. She has been such an important part of my ability to be strong. And my ability to not feel isolated.”
Vivian also utilizes Eastern medicine practices, such as Chinese medicine, Qigong, and massage, and she has taken classes at Gilda’s Club and Pathways. She counts her blessings every day and ends with, “It is not lost on me as I sit in the waiting room at my oncologist’s that I have my hair. I don’t take it for granted. Every hair I pull of my clothes, I think, ‘I am so grateful.’.”
Join us for next week’s blog, where we discuss the science behind cold capping, hear from a cold cap technician, and share resources and tips on cold capping.
*Names have been changed to protect privacy.
Firefly Sisterhood is incredibly grateful for Vivian and willingness to share her story. We are also thankful for the wonderful Firefly Guides, like Rhetta, who share their time, energy, and hope with women going through breast cancer.
Written by Amy Tix, Firefly Staffer and breast cancer survivor. “It amazes me how much has changed in breast cancer treatment since my diagnosis 14+ years ago!”