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doctor's experience with cold caps during chemotherapy

A Doctor’s Personal Experience with Cold Caps during Chemotherapy

My experience with cold caps during chemotherapy was a comfort to me during breast cancer treatment. I was terribly traumatized when my doctors said I needed chemotherapy to treat really aggressive breast cancer in 2013 thanks to the BRCA gene mutation that I never knew I had. I didn't want vitality draining chemo drugs and I didn't want to lose my hair. I could not get out of the chemo treatment if I wanted a shot at survival. I could, however, try to salvage some hair during the process.

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. We decided to give them a try. 

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 before being diagnosed with cancer, my hair was never shorter than my shoulders. I did not want to lose it, especially to something as horrible as cancer.

As a dermatologist I knew that cold caps might help prevent chemo hair loss so I decided to try using them and they helped!

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.

How Do You Use Cold 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 and added many hours to my infusion center stay. This is because a chilled scalp has much less blood flow in the skin capillaries around the hair follicles. This is how cold caps prevent hair loss and the scalp needs to be pre-chilled and stay chilled during the entire time that chemo drugs are at high levels in the blood stream. 

Using cold caps added hours to my chemo treatments

  • Cold caps needed to be worn before my infusion started. The idea is to cool the scalp before any hair-endangering chemo medicine hit my body and scalp.
  • 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.

I needed to keep changing the cold caps to keep my scalp cool during a chemo infusion.

During an infusion, we had to change the caps every 30 minutes. This is because the one that I was wearing would heat up slowly over time, allowing medicine to potentially enter my scalp. It meant a new painful cap was placed on my head by my loving husband while nurses gave me infusions. Each new cap hurts because it is soooo cold.

I was pretty out of it with all the drugs they gave me to prevent nausea, but it made for a long 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 freezer, which is very different than home freezers, that was needed for cold caps. But that was all the help they gave us. They knew very little about using cold caps and would not take any responsibility for assisting us.

There are logistical challenges that an infusion center must address for cold cap users.

My infusion center was not familiar with everything they needed to do to enable a person to use cold caps during infusion treatments. They could only fit one person’s caps in the freezer at a time, which became a problem because each cold cap patient needed to pre-chill their caps in the "bio-freezer" for two days before an infusion. The home freezer was not cold enough and each of us needed the small bio-freezer at the infusion center for a total of 3 days. My infusion center only had one cold cap freezer and it only fit one patient's caps at a time.

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 only pre-chilled for one day instead of two and I lost a lot of 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 at the time.

What is the Impact of Chemo on Hair?

I kept enough hair to look pretty 'normal' thanks to the cold caps. My hair did thin a lot during chemo but I had enough hair to cover the balder areas. The thinning was not entirely due to this one scheduling snafu because it happened gradually before the scheduling problem. The cold caps helped reduce my hair loss but they did not entirely prevent it. They did save enough hair for me to wear what I called my “bun comb over” for three of the four months of chemo.

experience with using cold caps during chemotherapy picture of resultsFor 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 them to my head! The picture to the right is my scalp after 3.5 months of AC/T dose-dense chemotherapy using cold caps. AC/T chemo usually results in complete hair loss. 

Fortunately, the scheduling snafu happened toward the end of the third month of my four-month chemo course. By that point, I could see the end of chemo coming and I did not care as much. I finally felt too bald for the "bun comb over," so I started wearing a wig. Still, for me the caps were worth it; I was not ready to face the triple shock of a breast cancer diagnosis, allowing chemotherapy drugs to potentially sap vitality from my body, and the loss of identify that I was a blond woman with long hair.
Cold caps allowed me to gradually acquiesce to chemotherapy hair loss after I had the chance to cope with the cancer part. - Breast Cancer Survivor and Dermatologist Dr. Cynthia Bailey

I learned a lot about surviving cancer and cancer treatment during "The Cancer Year". To learn more about what I learned, click here.

I've written about topics such as how I kept my brows and eyelashes during chemotherapy. How I prevented skin infections and cracked and bleeding nose during chemo. I've written about innovative ways to improve chemo port scars. I also learned a lot about increasing the odds of survival and getting a good outcome from a fight against cancer. All these articles are tagged with 'breast cancer' and you can find them by clicking the link above or on the top of the page under the 'Breast Cancer' category. I also have a category of articles on 'Chemotherapy Skin Care' in that category listing. I know that if you have been given a cancer diagnosis, you are looking for info to help during your treatment. I hope something I have written will be of benefit. 

Is There a Downside to Using Cold Caps During Chemotherapy?

The caps were very painful for me. They also made the infusion day very long and required dedicated help from my husband.

Each time the first cap was first placed on my head, involuntary tears would run down my cheeks for 30 minutes. My head is very sensitive to the discomfort of 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. My insurance did not pay for it. They are also inconvenient because someone has to take them to the infusion center to pre-chill for two days before your infusion. You need to transport them in ice chests and store them at home in a big freezer.

You also need an assistant to place the cold caps 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.

The bottom line is that using cold caps during chemo was a commitment, expense, and labor of love. And, I'm glad that I did it!

What are the Benefits of Using Cold Caps During Chemo?

As I mentioned, I did keep my hair for the first three months. This allowed me to feel like I looked pretty normal in public without a hat or wig. People actually were surprised if I pointed out my thin areas because my bun comb-over was pretty effective. This was a comfort to me when I looked at myself in the mirror and when I was out in public.

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 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 cancer buddies, I regrew hair faster and I think that was because of the cold caps.

Let me tell you, being a cancer patient sure is an adventure, and one I never saw coming!

Are There Dangers to Using Cold 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 and my scalp skin stayed entirely normal.

Another potential danger is that chemo may not reach the scalp skin in the case of cancer metastasis. As a dermatologist, I know that breast cancer in particular seems to favor the scalp as a place of metastasis. This concern is controversial. I made the personal decision to use cold caps and not worry about this small risk since the cancers were caught early (yes, I had two tumors - one in each breast).

The decision to use 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 use Cold Caps again?

Dermatologist and cancer survivor Dr. Bailey's experience with cold caps during chemoWho 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.

 

What is the best skin care during chemotherapy?

I'm a dermatologist not just a cancer survivor. I created my Chemotherapy Skin Care Kit for my own skin care during chemo. 

Dermatologist's chemotherapy skin care kit

For more on what I learned during chemotherapy and cancer treatment, take a look at the chemotherapy skin care article that I wrote where I share what I did to keep my own skin healthy during chemo.

Dr. Cynthia Bailey hereditary breast and ovarian cancer advocacy all profits donatedMy Chemotherapy Skin Care Kit provides the key products for sensitive skin during chemo. I donate all of the profits to hereditary breast and ovarian cancer advocacy through a non-profit called FORCE, the advocacy organization for the hereditary breast and ovarian cancer community.

It is possible to prevent some of the disheartening impact of grueling chemotherapy and cancer treatment if you are proactive.