Why You Should Consider Scalp Cooling

Hi, I’m Krysten. Mom to three sons, Bradley (5), Christian (3), Dean (1), who is trying to keep it together while living with metastatic breast cancer. I’m married to John, who’s helping me stay positive and live my breast life. He also helped me keep my hair during chemotherapy with scalp cooling.

I was first diagnosed with breast cancer in the summer of 2017, when I was 2 months pregnant with my youngest son, Dean. After undergoing a lumpectomy and axillary lymph node dissection, I knew that I was going to need chemo, and losing my hair was not an option for me.

When my oncologist was prepping me for chemotherapy, she asked me if I’d heard of scalp cooling aka cold capping. This was the first I’d heard of it, but I decided I’d do anything to keep my hair. She warned me that a few of her patients had tried using them, and some were unsuccessful due to the tedious process, expense, and the discomfort they cause. The caps tend to be uncomfortable because they are kept at a temperature below freezing.

I figured I’d give them a shot as I really wanted to keep my kids lives as normal as possible. If they didn’t work, I figured I’d have nothing to regret! The caps were a major inconvenience and painful, but to my surprise they worked! So, the pain and discomfort were totally worth it to me.

From August to October 2017, I had four rounds of doxorubicin (Adriamycin) and cyclophosphamide (Cytoxan) when I was pregnant, then 12 rounds of paclitaxel (Taxol) after Dean was born in December. I didn’t cry once, because honestly, my experience wasn’t that bad. I also feel that I didn’t get emotional because I knew I was going to keep my hair. I did a lot of research that confirmed that losing your hair during chemo can take a massive emotional toll on breast cancer patients. So, I’m forever grateful to my oncologist for encouraging me to try cold caps.

If you are going to suffer from hair loss, I highly recommend trying scalp cooling/cold caps. They tend be a bit of a nuisance and uncomfortable, but they are probably the main reason why I didn’t cry during chemo. I still lost some hair and had to cut a few inches off, due to thinning, but it’s growing back and that’s what matters.

Here is a step by step guide to prepare:

• Step one: Find a company that will rent you the cold caps. The cost of using the caps varies depending on the manufacturer, the number of chemotherapy sessions you’ll be having, and the number of months you’ll be using the caps. Check with your insurance carrier to see if the cost of renting the caps is covered. Also, check with your oncologist to see if previous patients have donated cold caps to the practice.
• Step two: Purchase a spray bottle to wet the roots of your hair and plastic shower caps to wear under the cold cap. You’ll also need a cooler on wheels to store the caps in dry ice overnight. And don’t forget gloves that are safe for handling dry ice.
• Step three: Pack blankets and sweaters, as you will be chilly. I always layered so that my port could be easily accessed. Also, pack a towel or two since you’ll be wetting your roots.
• Step four: On the night prior, purchase 20 to 30 pounds of dry ice. Some companies provide tools to help you find retailers in your area.
• Step five: Place the dry ice in the cold caps overnight to get them to a temperature below freezing. A lot of people use thermometers to ensure that the temperature is low enough, I did not take it this far and still had great results.

Here is a step by step guide for wearing the caps:

• Step one: Once your bloodwork comes back and you get the greenlight to receive chemo that day (healthy blood levels are necessary) you will begin your premeds. These usually consist of an antacid and nausea med.  This is when you should wet the roots of your hair, put on your shower cap, then a cold cap. Set a timer for 20 minutes, or follow the timing guide that came with the caps.
• Step two: Swap out the thawed cap for another frozen cap. Set the timer for 20 minutes, then repeat. I did this continuously throughout treatment then for 20 minutes or so right after.
• Step three: Try to avoid heat (blow drying, straightening) and wash your hair every 3 to 5 days with cool water and a sulfate-free shampoo. It’s also important to avoid coloring your hair while you are using the caps and up to 3 months after using them as well.

I think it is also important to mention that the caps can run nearly $500 per month to rent. If your oncologist does not have a set of donated caps, there are a few other options to ease the burden of the expense. The Rapunzel Project is a nonprofit organization that helps people undergoing chemotherapy access and use scalp-cooling technology to help keep their hair. Also, the Hair to Stay Foundation offers grants to pay for scalp cooling costs.

Lastly, it’s important to know that cold caps may not work for everyone. Research results show that cold caps were considered highly effective in 50 to 65 percent of the women who used them. Women who got only taxane chemotherapy have had better results with cold caps and scalp cooling systems than women who got only anthracycline chemotherapy. I received both therapies and had great results!

I hope that this blog has given you some insight into the process and answered many of the questions I had before trying them out. I am happy to say that I have nothing to regret and am so grateful my oncologist educated me on the process.

Krysten Gentile was diagnosed with early-stage breast cancer in 2017. She lives in Philadelphia with her husband and children. You can learn more about Krysten on her blog, The Chemo Crusade, and her podcast, Making the Breast of It.

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