How to keep your hair at -32 degree C... Fighting the chemo battle

 In case you were not aware, I decided to use cold caps to prevent hair loss during Chemo treatment. Cold caps are expensive and not covered by insurance. Some initial medical studies show that it is 70% effective at preventing hair loss during chemo. There is only a 5% chance of developing skin (4%) or brain (0.5%) metastasise. This depends on the drugs that are used for chemo.  Cold Caps are used regularly in Europe but they are not approved by the FDA for reducing hair loss during cancer treatment, even though here is research from the past 10 years showing how effective they are. (UK National Institute of Health article showing effectiveness of cold caps. Recent article that covers info about current progress with getting Cold Caps approved.)

How do Cold Caps work? Based on the info from  Penguin Cold Caps, http://penguincoldcaps.com/how-it-works/:

Each Cold Cap weighs approximately 3 lbs (1.5Kgs). They are fastened using velcro and elastic straps to fit the cap tightly to the scalp. It does not restrict mobility during chemo treatment. The Cold Cap takes effect within 10 to 15 seconds. It must be put on dry hair and applied by a helper to the cancer patient.  The cold medical grade froze part of the cap is applied to the hair. The soft nylon blue outer cover is held by the cancer patient during cap placement. 

Penguin Cold Caps advises that the caps will start 50 minutes before the first chemo infusion. The caps are changed every 20 minutes during treatment (which can last 2 1/2 to 4 hours) and then every 30 minutes for the 4 hours following treatment. It must remain at a solid -32 degree C during the entire process. The caps are stored in the freezer during non-treatment days, put on dry ice the morning of treatment, and rotated on the dry ice during treatment day. There are very few treatment centers in the USA that have medical grade freezers to store the cold caps in. Penguin Cold Caps has a list. You can also talk to your treatment center to get a medical grade freezer donated from Project Rapunzel. The freezers are very large, and many treatment centers decline to accept a donation like that. This is why dry ice has to be used. 

They recommend that you practice putting the caps on before the day of chemo treatment. As scary as chemo is, I made it into a fun practice run with my Chemo helpers.

First, we spread out all the Cold Cap supplies. Check out my blog on chemo supplies.

Then we cut the moleskin to fit by tracing my forehead and cutting the moleskin to shape.

We put the moleskin on my forehead and panty liners--that's right panty liners-- on my ears and under my chin where the straps will connect. You don't need to use the ear covering but my hair is short so I put it there for good measure. My chemo buddy, hetero-life-mate and sister gazes at me in wide eyed wonder at the new use for feminine hygiene products.

Then time to put on the caps. The white part of the cap goes on my head while the blue outer shell goes on top. You place the chin straps on first, then velcro the front of the cap around the forehead. Then you velcro the back of the cap around the nape of the neck. A strap attaches with velcro around the nape of the neck and around the front of the cap to keep everything tight.

The cap has to be a very tight to ensure that it is effective. You can see my mom doing her "Rosie the Riveter" impression here.

And viola, cold cap fun with the strap on. My boyfriend insists that I look like a muppet, but I disagree. 

And then my sister joined in the fun. It's refreshing. The cold caps are not at -32 deg. C because they were just kept the freezer. 

All of this is from the practice run.  The caps are applied on the day of treatment by putting the caps into 100 lbs of dry ice 1-2 hours the day of treatment. The cap goes on 50 minutes before treatment.  

First the cold cap is removed from the storage container, white side up.  Knead the cap to loosen it up. You take the temperature of the center of the cap to confirm that it is 32 degrees Celsius. If it is too cold, knead it again to reduce some of the temperature and spread out the filling. Use gloves that are extremely thick to protect your hands from frost bite while working on the cap. The white side is the coldest part because it goes directly on your head. The blue part is not as cold. 

      

I had two people help me with the caps.  One person to change out the cap and velcro it in back. The other person to put the cap on, place my head in the center of the cap to hold it in place, and velcro the front. Then put the strap around the cap to hold it in place.

We timed the caps so that they were changed every 20 minutes for the first hour of my chemo infusion. Then changed it every 30 minutes during my infusion.After the chemo infusion, I had to keep changing the caps for an additional 4 hours,  every 30 minutes.  The cap must be kneaded every 10 minutes while wearing it. It's like a cold head massage.

You can see my mother concentrating on kneading my cap. We used a timer to remind us when to do each step.



And this is me during treatment. It gets pretty cold so I wore layers and brought plenty of blankets, hot water / tea, neck warmers, and a back warmer.  The nurses had a fantastic treatment to reduce the burning during the infusion. It's a sewn bag filled with brown rice. It is heated for a minute and put on the injection site. It reduced the burning significantly. I will have to make my own.