As I wind down the countdown to my last chemo treatment (hallelujah!), I thought I would share some insight on the cold cap therapy that I’ve been doing to save my hair during the toxic chemotherapy infusions. Thank you to those who have asked, encouraged and supported me through this. I love that you’re also helping raise awareness of this resource!
I’ll share some of the guidelines and tips that I learned during cold cap therapy in a later post (I’m planning to continue many even once my hair returns to ‘normal’ texture and growth!) but for now I wanted to share an overview of cold capping and why I decided to try to save my hair during chemo.
About cold cap therapy
Cold cap therapy is the process of cooling your scalp to essentially ‘close off’ hair follicles to the toxic chemo drugs that kill those cells. The cooling system works by narrowing blood vessels beneath the scalp to reduce chemo amounts reaching hair follicles, hopefully reducing the amount of hair that falls out. The cold also decreases the activity of the hair follicles, which slows down cell division and makes the follicles less affected by the chemo (breast cancer.org nicely explains in more detail). The caps are tightly-fitted, strapped-on hats filled with a gel coolant that’s chilled to between -15 to -40 degrees Fahrenheit.
There are many different companies providing cold cap therapy. Manual caps are those you change at specific time intervals, your capping team manually puts on/takes off and you maintain the temperature. A cooling system is a machine that flows coolant through the cap (the cap doesn’t need to be changed during the cooling time). There are pros/cons to every option. I’m using Penguin Cold Caps (manual), mostly because my clinic/oncologist recommend, and after doing research and joining a Facebook group for cold cappers, I think Penguin has some of the better outcomes (my opinion only). I will say that I’ve had some of the BEST customer service and support from Penguin reps and my capper than I could ever hope for. Truly, these women have calmed, supported and embraced me so much.
There’s no doubt that it’s cold on your head! I’m thankful it was bearable for me. Although truth be told, I would have figured out a way to make it work. It was that important to save my hair. The initial cap did take my breath away and caused a little brain freeze (think ice cream cone). After a few minutes of my scalp cooling my symptoms went away.
I’ll be honest that it’s a lot of work to maintain your hair, without any guarantees. There are a LOT of guidelines to follow. Wash every 2-3 days with cool water, no hair products, no warm water or drying of hair, no hats or rubber bands, satin pillowcases, comb 1-2 times a day with wide tooth comb and more. No unbearable guidelines but it does get tiring after weeks of doing it. And you continue for about 3-6 months post-chemo until your hair is healthy, not shedding again.
The pros and cons about cold capping
If I had chosen not to cold cap, I know that I would be able to work out more often and more my normal pace if I didn’t have to worry about my scalp overheating or the wind tangling my hair or a bike helmet pulling my hair out. I know that I would sleep better without waking myself to adjust my head pressure on my pillow. I know I would not dread washing my hair in cool water and seeing so much hair shed.
I also know how upsetting it was to see my hair completely fall out in clumps within seven days of my first bone cancer chemo. I was 21 and didn’t have hair for almost 15 months. I remember the looks and stares of sympathy, compassion, feeling sorry for me and more from friends and strangers when they saw my bald head. I know I looked at myself in the mirror, bald during bone cancer, and knew people saw a sick young woman and I often caught myself seeing a sick young woman. I now look in a mirror, seeing a strong, courageous, healthy woman with hair, albeit ridiculously thin and feel almost myself. There is a difference in those two women looking at a mirror. You may not understand but I do, and it’s what I’m choosing for me.
I’ve received a lot of input from many different people on cold capping. Some people say they would just shave their head and go bald (oddly most of the people saying this have never faced losing their hair to chemo). Others feel it’s too much work to cold cap with the guidelines and more. I get it. But I made this choice so I’m owning it and feeling grateful that I still have hair heading into my last chemo.
On another note, one of the chemo drugs can cause permanent hair loss in 5-10 percent of patients. Ugh, yes so there’s that scary possibility. Cold capping helps preserve your hair follicles and helps prevent permanent hair loss. So another reason I chose to do this.
Another thing to note is that this resource is unfortunately not covered by most insurance companies because it’s considered ‘cosmetic’ (although wigs, hair plugs and more are covered by most). It’s not a cheap process, running from $300-$600 per treatment or monthly rental of caps. It’s frustrating that insurance companies don’t cover this, although some people have had luck appealing the denial, because it truly is a benefit and eases the devastation of a cancer diagnosis and treatment stress to maintain your hair and a sense of normalcy. I personally think it should be an option as much as taking anti-nausea pills or other side effect resources.
I’ve also heard that many doctors don’t know to recommend it or downplay its benefits and effects. This really annoys me because, again, if this can ease someone’s stress/anxiety about treatment, then it needs to be part of the conversation. As you may imagine, this is something I plan to work on in the coming months!
My hair has shed more than I anticipated. Many women have lost up to 60 percent of their hair and had bald spots which I thankfully don’t have yet. I would guess I’ve shed about 20-25 percent of my hair, which is a lot to me. The good news is that my hair turned curly with chemo and no hair products so I’ve been able to ‘spread’ my curls to hide thin spots on my scalp. It’s startling to see your hair shed. And most of you know that I completely lost my hair during bone cancer treatment….for almost 15 months. Losing your hair in clumps is pretty traumatic. Consistently shedding isn’t quite as traumatic but it’s still tough.
The most important thing I’ve learned is that every person has their own outcome and nothing is guaranteed or can be predicted. Some women shed very little hair and others have lost more than 60 percent. Different chemo drugs can impact the success, as can other factors. I’ve seen some women slack on the rules/guidelines who maintain almost 90 percent of their hair while those who follow the guidelines almost perfectly lose more. I think part of the frustration and sadness is that you just don’t know.
Staying focused on the positive
It’s consistently pointed out to me that the critical thing to remember is that I am preserving my hair follicles to help with quick regrowth post-chemo. Most of the women I’ve encountered do share that they have pretty quick signs of regrowth, sometimes even during chemo!
Would I recommend cold cap therapy during chemo? Yes, although it really has to be a personal choice. It’s been refreshing to run errands, be asked out on dates, present at work meetings, give speeches about my cancer story and more without people assuming that I’m going through chemo or clearing cancer. It’s also been a distraction from chemo and the stress of treatment because I’m so distracted by following guidelines for cold capping, lol! The ability to help preserve your hair rather than lose it to chemo is so amazing, gratifying, empowering and emotional.
Have you done cold cap therapy during chemo? If so, how did you do? If you have any questions about cold cap therapy, please don’t hesitate to contact me! Happy to help spread awareness of this great option for cancer survivors.