A Doctor’s Personal Experience with Cold Ice Caps during Chemotherapy
I was terribly traumatized when my breast cancer doctors said I needed chemotherapy immediately to treat really aggressive breast cancer. I didn't want cancer, I didn't want poisonous chemo drugs in my body, and I didn't want to lose my hair.
It all happened so fast. There were, of course, other anxieties swirling in my head, but I had to quickly decide whether I would use Cold Caps in an attempt to mitigate chemo hair loss. Both my husband and I loved my hair. I had years invested in my pretty and long blonde hair. I identified with it. When I was younger, I wore it down to my waist. As I've aged, I've cut it shorter, but it's never been shorter than my shoulders.
I did not want to lose my hair, especially to something as horrible as cancer. So, I decided to give the Cold Caps a try. Because I was in shock from the breast cancer diagnosis, my husband handled the logistical issues of finding the Cold Caps, renting them, and coordinating with my chemotherapy treatment center.
Tips for the Use of Cold Caps (Ice Caps) During Chemotherapy
Understand that using cold caps adds a significant layer of complication to chemotherapy. I used the Cold Caps from my very first chemo infusion. My infusions were every two weeks and would have normally lasted four hours before I could be sent home. Cold caps, however, needed to be worn much longer.
Cold caps needed to be worn before my infusion started, so my scalp would be cool when the medicine first hit my body. I also had to wear them for four hours after an infusion while high doses of medicine were still coursing in my system, potentially shutting down hair growth. In addition, during an infusion, we had to change the caps every 30 minutes to keep my scalp cold because the one I was wearing would heat up. It meant a new painful cap was placed on my head over and over again by my loving husband while nurses gave me infusions - and, Cold Caps hurt!
I was pretty out of it with all the drugs they gave me to prevent nausea, but using Cold Caps made for a longer and painful day.
When I had my chemotherapy in the fall of 2013, Cold Caps were very new to my cancer treatment center. The infusion center had purchased the proper ultra-cold bio-freezer freezer that was needed for cold caps. This is very different than normal home freezers. That freezer was all the help my cancer center could give us. They knew very little about using Cold Caps and would not take any responsibility for assisting us. Also, they could only fit one person’s caps in the freezer at a time. This is a scheduling challenge because each cold cap patient needed to pre-chill their caps in the bio-freezer for two days before an infusion. Unfortunately for me, the nurse scheduled myself and another patient using cold caps too close together, meaning my caps got bumped from the bio-freezer. I was not willing to delay my infusion because the type of aggressive cancer I had could only be cured by really aggressive chemo. I had my infusion with caps that were pre-chilled only one day prior and, as a result, I lost a lot of hair. It was sad after working so hard to keep my hair.
Still, the good news is that the chemo nailed my cancer in the end, so the story has a happy ending, even if I lost chunks of hair after working so hard to keep it.
What is the Impact of Chemo on Hair and Why Do Cold Ice Caps Work?
Chilling the scalp reduces blood flow to the skin and hair follicles and thus reduces the concentration of toxic chemo delivered to follicles during infusion treatments. It takes a deep chill to succeed in reducing blood flow at the bottom of the follicle depth. The chill needs to be sustained as long as high doses of chemo are in the blood stream.
My hair did thin a lot during chemo, not just from this one scheduling snafu. The Cold Ice Caps helped, but they did not prevent loss. They did save enough hair for me to wear what I called my “bun comb over” for three of the four months of chemo. For me, the biggest hair loss occurred in the mid-portion of my scalp because the caps were just too rigid to mold tightly to that area. I still get the chills when I think of the sound they made as my husband tried to bend and shape the ice to my head!
This photo is of my scalp after 3.5 months of AC/T chemotherapy using Penguin Cold Caps. AC/T is a chemo cocktail guaranteed to leave a patient entirely bald, so my results are not that bad. Unfortunately, the scheduling snafu happened on this infusion and I lost too much hair for my "bun comb over," so I started wearing a wig. The lesson here is to watch your infusion center's schedule if you want to use Cold Ice Caps to prevent chemo hair loss.
Still, for me the caps were worth it because I could not face the double shock and loss of my lifelong hair identity at the same time I was reeling from the trauma of a breast cancer diagnosis. I was able to gradually acquiesce to the hair loss after I had the chance to cope with the cancer part.
Is there a downside to using Cold Ice Caps during chemotherapy?
Yes, the caps were very painful for me. They also made the infusion day very long and required dedicated help from my husband. Involuntary tears would run down my cheeks for the first 30 minutes. My head is very sensitive to the cold. I did not like the caps at all and still get a sick feeling thinking about them.
Cold Cap rental is also very expensive and inconvenient. Someone has to take them to the center to pre-chill before your infusion, and you need to transport them in ice chests and store them at home in a big freezer. You also need an assistant to place them on your head during an infusion. I certainly could not have done any of that for myself during my cancer misadventure. Also as I mentioned above, you have to go for your infusion an hour before and stay for four hours after if you use Cold Caps. In a nutshell, using Cold Caps is a commitment, expense, and labor of love.
What's the upside of using Cold Ice Caps during chemotherapy?
As I mentioned, I did keep my hair for the first three months. I was able to feel like I looked pretty normal in public without a hat or wig. This was also a comfort when I looked at myself in the mirror. Another unexpected plus was that, because of the complexity of using the caps, I was given a small private room with a bed in the infusion center. This privacy was nice.
In my observation, I also think that my hair may have grown back more quickly after chemo because of the Cold Caps. Theoretically, I think this may be because not all my follicles were chemo-impacted by my last infusions. Compared to my chemo buddies, I was hairier faster.
Let me tell you, being a cancer patient sure is an adventure, and one I never saw coming!
Are there any dangers to using Cold Ice Caps?
I'm not really sure about this. I was concerned about freeze-burning a part of my scalp with too much cold contact. That did not happen though, and my scalp was and is entirely normal.
There is also the issue of wanting to get chemo to the scalp in case of cancer metastasis. As a dermatologist, I know that breast cancer in particular seems to favor the scalp as a place of metastasis. The decision to use Cold Caps or not needs to be made by the patient and their treating oncologist. According to mine, it was reasonably safe, so I went ahead (no pun intended) with using them.
Would I do it again?
Who knows? At the time, it was the right choice for me. The "bun comb over" was a comfort. If and when I face chemo again, I'll have to see how I feel. If the oncology team says the caps are safe, then I believe the decision rests solely with the patient.
If you are reading this because you are facing chemotherapy, know you have my prayers and support. Know that chemo passes, and that chemo is a misadventure that one can never understand until they go through it themselves. My advice is to take really good care of yourself during chemo, because it will pay off. Blessings to you and my best wishes for a speedy and low drama chemo course, hair or not.
For more on what I learned during chemotherapy and cancer treatment, take a look at the related posts below that I think might be helpful. Also, be sure to check out the chemotherapy products I developed based on my experiences. It is possible to prevent some of the disheartening impact of the grueling treatment if you are proactive.
During this Breast Cancer Awareness month, I want to encourage support for a wonderful organization called FORCE that fights breast and ovarian cancer. Help victims battle the fight by supporting this very deserving cause! For more information into how you can help, click here.