I had seen something about cold capping on Instagram prior to being diagnosed. In my first meeting with my oncologist, I brought it up and learned that the site I was being treated at uses the Paxman system. My oncologist warned me that it was likely I would lose most of my hair during AC. Knowing that I was doing Taxol before AC, I decided that it was worth it to try. My whole life I’ve been told how much hair I have (and it is obvious when it takes hours to get my hair colored at the salon!), so as much hair as I could lose, I still had a lot that could stay! Also, since I was doing Taxol from November-January, this meant that I would have hair for my daughters first festive period, and that meant a lot to me. She was 10 weeks old when I was diagnosed. Whatever happened after that, I would deal with as it occurred. Something I said was, “the only thing I have to lose is my hair, which I was going to lose anyways!”
My nurse helped to fit me, we decided the best fit was with a medium inner cap and a small outer cap. This way my whole scalp was covered but the small outer cap allowed for full contact. My nurse submitted the enrollment form, and I called The Hub the next day to confirm delivery and payment. Within days the cap and kit had arrived at my home.
I really wasn’t sure what to expect with the cold cap before my first time. I practiced putting it on several times at home and even watched the tutorial videos one last time in the car on the way to my first treatment. Once I had put it on, my infusion nurse mentioned that I had a great fit and plugged me in. Immediately I felt the cold rush up to my head. It did feel a bit like a brain freeze like you swallowed ice cream too quickly, but after a few minutes it becomes less noticeable. As the weeks went on, I sometimes had to stick my fingers under the cap to make sure it was cold because I had grown so accustomed to the feeling! I found icing my hands and feet during Taxol as a method to prevent neuropathy to be more uncomfortable. Distracting myself with TV shows on my iPad helped to pass the time.
After the 3rd week or so, I got into a groove and had a nice routine. I used a pantyliner cut in half to protect my forehead and took some extra strength pain reliever before the cap was placed. Since I have thick hair, I ran my whole head under the sink at the infusion center bathroom rather than the spray bottle provided. For the cap placement, I followed the instructions from Claire Paxman’s tutorial video, using the lacing technique and pulling down one side of the cap with one hand while the other hand held onto the opposite side of the cap. This helped remove any air bubbles and I really attribute that to my success.
Exactly two weeks after my first AC, it almost felt like I was waiting for the inevitable to happen. I got nervous and sometimes would find myself running my fingers through my hair expecting to see clumps falling out. But I never did! I was amazed that I was showing up to my last AC with a full head of hair. Around 2-3 weeks after that, I did start to experience shedding. This continued for about 3 months, but it was all over and not from one specific part of my scalp. Even my husband didn’t notice until I pointed it out to him. I maintained the same routine that I did during chemo to make sure I was still being careful to avoid any matting and extra loss. Something else to note is that I started chemo before I experienced any postpartum hair loss, so it is hard to tell if any loss could also be due to that.
Prior to starting chemo, another breast cancer survivor I was connected with gave me the name of a highly recommended wig shop. I was ready to call them up the minute I thought I needed to, but that never happened. I did use headbands occasionally when my hair was at its thinnest. About the same time that the thinning slowed down, I started noticing the regrowth! My regrowth is the same texture as the rest of my hair, so it blends in easily.
I washed my hair once a week with an Apple Cider vinegar shampoo to help it be less oily. Instead of massaging it in, I would gently pat it on. I also used the handheld attachment instead of the regular shower head for less water pressure. I used lukewarm (not cold) water for just my hair, the rest of the time I used hot water. I switched to satin pillowcases and used the brush provided in the kit. I didn’t use any heat products, but I experimented with different ways to style my hair like leaving in braids to dry to create waves. I did curl just the ends one time for a special event. Even now, almost 7 months later, I still only use heat for special occasions, but once the shedding stopped, I started washing my hair the way I did before chemo.
I am so happy with my scalp cooling experience. Being able to maintain that sense of normalcy during such a traumatic time was invaluable. And especially now that I have completed treatment, to not have a year or more of the awkward growing out phase allows me to focus on the mental recovery. I’m so appreciative of the hair that I kept that grew over the past year that I have decided to let my natural hair color grow out, after coloring it blonde for almost 20 years. I get compliments now on my “balayage”.
Scalp cooling is a very personal decision, but if it is something you are interested in doing, I would recommend it. My belief is that the choice should be available and offered to everyone. If I didn’t proactively ask about it, I’m not sure if I would have known about scalp cooling until it was too late. For me personally, the way I made my decision was to think about all the reasons not to scalp cool, and then see if any of those reasons were important enough to not move forward with it. The reasons not to were 1) discomfort/ pain 2) being unsuccessful 3) cost and 4) extra time in the infusion room. In terms of the discomfort, I trusted the advice to take Tylenol first and never found the experience to be painful. I also knew going in that my likelihood of success was low, so I kept my expectations low and ended up pleasantly surprised. Fortunately, cost ended up not being a factor as I was reimbursed by insurance. My hope is that one day insurance will fully cover without needing to appeal. Finally, the extra ~2 hours that scalp cooling took I thought of as “me” time, either dozing off or watching shows/movies that I wouldn’t find time to watch otherwise with a baby at home.