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Helping Your Loved One with Cold Caps

The year 2019 was beginning. I thought that this was the year I was going to clean up all the things my son left at my house. My daughter had different plans. She was afraid to say anything to us since we had lost our son to pulmonary hypertension in 2014. Now, it was her turn to break the news. January 8, 2019, she was diagnosed with Stage 2b Triple-Negative breast cancer. Disbelief and scare are two very inadequate words.

Hi, I'm Sandra, and my daughter, Sonja, was diagnosed with breast cancer.

I'm here to tell you about cold caps from my perspective as the helper.

After the shock of hearing the word cancer, Sonja asked me to help her with the cold caps.

Cold cap? Sure, I'll help in any way I can, but what's that?

Referred to as "Cold Capping," it is a scalp cooling system that's supposed to fit tightly on the head of the person receiving chemotherapy. It's a wrap made to form a helmet-type hat. Filled with gel coolant, the caps must remain chilled between -15 to -40 degrees Fahrenheit.

How do I get it that cold? Dry ice!

Dry ice? Isn't that the stuff to put in punch and a witch's cauldron to make them look smoky? Yes. Okay, it sounds like fun...

Why would you want to do something like that? It's thought that by narrowing the blood vessels beneath the scalp's skin, it will reduce the amount of chemotherapy medicine that reaches the hair follicles. With less chemicals reaching the hair follicles, less hair falls out. The hair enters a near hibernated state. It decreases the activity of the hair follicles, which slows down cell division and makes the follicles less affected by the medicine.

So how do we do this?

A local lady who is devoting her life to educating others on this process taught us how. She showed us how to wrap the gel cap just right around Sonja's head and hold it down very tight with the straps. The evening before we left for each chemo treatment session, we put the caps in the cooler filled with dry ice. I quickly learned that dry ice needed to be packed between each cap to be sure they were cold enough when needed.

Our steps were as follows:

  • Each treatment session started with a 20-minute cold cap session and Chemo infusions holding start time until 10 to 15 minutes after the start of the capping.

  • Before applying each cap, it's temperature was tested to ensure it was -30 to -40 degrees Fahrenheit. Low enough for an ice-cream brain freeze headache without the pleasure of the ice cream.

  • Then another 20-minute cap. Each cap after the initial 2- 20 minute sessions were 30 minutes apart. Whew, a small break!

  • After completing the final chemo infusion, there were caps every 30 minutes for the next 4 hours.

It was a full day.

We could have continued changing caps at home, but it was more convenient not to move the heavy cooler. So, we curled up in our corner and watched the time and changed caps.

This process was our schedule for doing the caps, but the amount of time you wear the cap may depend on the type of chemotherapy you're getting.

Some cold caps and scalp cooling systems may be slightly different. Some cap options attach to a small refrigeration machine that circulates coolant, so the cap only has to be fitted once and doesn't need to be changed.

Some tips for treatment day:

  • It helps to have another person ask the doctors the questions that may seem silly but will help clear up some misconceptions or miscommunications.

  • Keep a notebook of the procedure and other useful information. Include cheery notes from loved ones for motivation. Decorate the cover in upbeat pictures and words.

  • Make sure you have some snacks, drinks, and maybe some sandwiches.

  • Some patients who are getting treatment get cold, so they need to dress warmly and bring a warm blanket.

  • For those who help their loved ones, dress in layers since you could be warm or even chilled. You'll be moving but touching and working with very cold ice, not to mention the treatment centers' conditions can vary.

  • A hand warmer was a great item to have. My daughter even used it when I wasn't since the caps made her overall body temperature colder.

Think comfort for you and your loved one with time to sit, read, watch timer, change the cap, watch timer, play a game, watch timer, and watch the timer some more.

Just being able to be there for your loved one is the best part and worth the trouble of capping.

Don't worry about whether you're doing it right or not. Don't worry about hair loss because you didn't do it right. For some patients, it simply doesn't work. Factors besides what you are doing could contribute to hair loss. Genetics, the treatment plan's specific drug combinations, and even the stage at which the patient's hair is in its growth cycle can be a factor. Do your best and pray to the hair gods to do the rest.

Take some time with the young family members and experiment with the leftover dry ice. There will be a lot going on in your household during this time, but a small amount of fun and normalcy can go a long way towards helping to keep everyone in a positive frame of mind.

Most of all, make sure your loved one doesn't go online and buy ugly shoes they don't want!

Right, Sonja?

It may seem overwhelming at first, but you've got this!



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