I do not want to encourage or discourage anyone from using a scalp cooling system but merely share my experience.
Background
Before I was diagnosed with breast cancer, I had never heard of using scalp cooling systems to prevent hair loss during chemotherapy. I just assumed that if I went through chemotherapy, I would lose all of my hair. Shortly after receiving my diagnosis, I met with a nurse navigator from the hospital that performed my biopsy. She mentioned that special cold caps could be worn during treatment to prevent hair loss. Cold caps work by narrowing the blood vessels below the scalp, reducing the amount of chemotherapy medicine that reaches the hair follicles (breastcancer.org/tips/hair_skin_nails/cold-caps). I was very interested in trying a scalp cooling system, but I did not have much information on how effective it would be. I was later referred to a team of doctors at MD Anderson. My treatment plan included 12 weekly rounds of Paclitaxel (Taxol) followed by 4 rounds of Adriamycin/Cytoxan (AC) every three weeks (later shorted to every two weeks). My oncologist at MD Anderson did not bring up the option of using cold caps. I asked her if it would be an option for my treatment plan. She said that MD Anderson would provide a scalp cooling system (typically not covered by insurance) for patients only receiving Taxol, but because of the lack of studies showing the effectiveness for AC chemo, MD Anderson would not provide a scalp cooling system for my treatment. But, if I wanted to bring in cold caps from an external provider, I was welcome to use them.
Use
After much deliberation, I decided to give cold caps a try. I selected a provider that supplied 6 cold caps, a cooler for storage of the cold caps during treatment, an infrared thermometer, and a heated blanket. The cost of the cold caps was a $375 per month rental fee. When I finished treatment, I returned the cold caps and was allowed to keep the cooler and all other supplies. To cool the caps to the required temperature, they must be placed in the cooler with dry ice overnight. So, the day before each treatment, I drove 20 miles to a local dry ice supplier (http://iceexpress.com) and purchased 80 to 85 pounds of dry ice. The cost of the dry ice was between $80 and $95 per treatment. Some dry ice suppliers provide delivery of the dry ice for an additional fee. Many large grocery stores also sell dry ice, but at a much higher cost than the dry ice supplier. After four months of treatment, I spent $2,100 on rental of the cold caps and $1,400 on dry ice ($3,500 total). The day of treatment, I put on a cold cap 1 hour before treatment. I put it on as soon as I got in a treatment room. The nurses at MD Anderson were very accommodating. They would start my pre-meds and ask what time I wanted to start the chemo, knowing that I needed to have the cap on an hour before treatment began. Every 30 minutes my husband would take a cap out of the cooler and help me change it. After the chemo treatment completed, I would continue to change the caps every 30 minutes for 3 hours for Taxol treatments and 5 hours for AC treatments. To be honest, wearing cold caps was the most difficult part of chemo days. If I had not had to change my caps every 30 minutes, I probably would have slept through most of my treatments.
Results
Individual results with cold cap use will vary greatly, but I want to share my results as a point of reference. I had very good results during my Taxol treatments. I had considerable shedding, but at the end of my 12 treatments, my hair loss was not noticeable. The pictures below show the changes in my hair at different points of my treatment.
I started AC chemo the week after completing Taxol. A couple of weeks in, I noticed more considerable shedding. But, I was still able to go out with my natural hair and not feel self-conscience throughout my treatments. Below is a picture from my last day of chemo. My hair was thinner, but the loss was not significant.
I had hoped that the shedding would stop within a few weeks of my last treatment. Unfortunately, that was not the case. My hair continued to shed and shed and shed and shed. After all the effort I put into the cold caps, I was very discouraged. The hardest part was not knowing when the shedding would end.
Fortunately, while the old hair continued to shed, new hair began to grow. Three months post chemo, I had a couple of inches of new hair growth.
The picture above shows my hair at its thinnest. In the end, I estimate that I lost 90% of my hair. The good news is that I never had any bald spots.
I had a really hard time letting go
of my long hair. My hair had been long
since I was 10 years old. I considered
getting semi-permanent hair extensions, but after a consultation, I decided
that the cost and maintenance time was just too much for me. So, three and a half months post chemo, I had
all my old hair cut off.
At first I hated it. I cried as soon as I left the salon (and shed
a few tears while at the salon). But
after a few days of getting used to it, I did not mind it so much. I actually received a lot of complements on
my hair. At first I thought people were
just trying to be nice, but occasionally I would get complements from
strangers. After cutting my hair, it
began to grow very quickly. And the
shedding finally stopped. The pictures
below show the hair growth over the following months.
Final Thoughts
Using cold caps was difficult and expensive. If someone is to only have Taxol treatments, I would definitely recommend trying cold caps if keeping her hair is important to her and she has the financial means. With AC chemo, the decision whether or not to use cold caps is more difficult. If I could go back and make the decision again knowing the results I would have, I believe I would still choose to use cold caps, for the following reasons:
- I never had any bald spots. That was important to me so that I did not appear sick to my two young children (4 and 8 at the time). After I cut my hair, my 8 year-old son said that he had not noticed that I had lost most of my hair.
- I was able to wear my hair naturally throughout treatments.
- There were only around three months during which I did not feel comfortable wearing my hair naturally. Most of that time I was able to wear hair extensions and/or a hat. I only occasionally wore a wig. I did not like wearing a wig because I found it to be uncomfortable and difficult to brush out tangles.
- Once the shedding stopped, I was able to wear a short hairstyle that I was happy with.
- My hair grew back quickly. Within 9 months after the end of chemo, I had around 6 inches of hair growth in some places.
Cold caps are not for everyone, but I was glad that I had an option to keep my hair during chemotherapy.