“I know…..you can coldcap! You just have to start after October 19th,” my oncologist said, hoping to get me out of the state of hysteria she put me in minutes prior when she told me I would lose all my hair. She briefly explained that coldcaps are used to constrict blood vessels, stopping the medicine from reaching hair follicles and preventing hair loss. Cool, pun intended! What a time to be alive and a patient at Dana Farber—one of the key oncology sites offering a medical trial with PAXMAN cooling technology.
At the time, and even weeks later when I was being fitted for a one, I didn’t know if this was something I could afford or if my insurance would cover the cost, but I clung onto the hope of saving my hair so I kept going forward with every intent to be a part of the trial.
This coldcap “code of conduct” I put together is a result of research and personal experience but always consult your doctor and /or reach out to the PAXMAN hub directly with questions regarding your unique condition. I included the link here. On a weekly basis, doctors and nurses came to check out my hair and ask about my thoughts on the trial but it wasn’t until last week that I learned I was the first one to successfully finish the program! I do see a lot more PAXMAN kits in the waiting room now but when I started the entire process everyone including me was confused about the protocol, and I was desperate to find information and personal testimony. I decided then that once I finished I would share anything I could with others to make this hair saving mission a bit easier.
The PAXMAN KIT: (Ref: www.paxmanusa.com)
- Your own Paxman Scalp Cooling Cap
- Your personal neoprene cooling cap cover. The cap cover has an icon that is color-coded to your size
- Headband to be placed below the ears, to reduce discomfort
- Spray bottle to moisturize hair prior to putting on cap
- Tangle Teezer The Original detangling hairbrush
- Hair conditioner and shampoo
- Patient brochure with instructions and specific hair care–related information
- Towel to dry the hair and to dry the cap after the session
- Pay-for-use token to activate the Paxman Scalp Cooling System for your treatments (which is explained by the Paxman Hub case manager)
A few hours after my fitting I received a call from a PAXMAN representative that explained the process for obtaining this genius device. The PAXMAN kit is $ 500 and you are required to prepay for every cycle based on your regimen. The cost will cap at $2200 / or 12 cycles which is what I needed. My kit did not arrive in time for treatment so I was told a PAXMAN superwoman would fly out and meet me with a temporary one? Seemed too good to be true but I didn’t know any better—but there she was as soon as I got settled for treatment. This shipment error turned out to be a blessing since I got a chance to learn everything first hand.
FYI:[ http://www.hairtostay.org ] Hairtostay- is a nonprofit organization that raises money for patients and will reimburse some of your coldcap expense based on your income. The application process is very straight forward and it never hurts to try.
- THE APPLICATION: I found the tutorial videos very informative on how to apply the cap and out of the two ways shown I learned that it was easier to apply the brain looking cooling hat first then the insulated hat. I used the chinstrap to really tighten all sides but would adjust the fit during my pre-cooling time when I when I was able to feel the cold against my scalp.
- SHORTER CUT: I cut about 5 inches off the length before starting treatment to take the weight off. I wasn’t thrilled about this since the whole point of this is to save hair but I knew it would be easier to manage at shorter length.
- KEEP TRIMMING: I also trimmed my hair after week 3 and week 7 so that as it got thinner it would look fuller. When cutting, I explained my situation and only allowed the hairdresser to wet the ends of my hair and handle it ever so gently.
- PRODUCTS: I felt a sense of relief to have the shampoo & conditioner provided but after my first wash I realized that the shampoo tangled my hair more so than products I typically use, and since those are also free off harmful ingredients I decided to stick with my own stuff. (I do recommend using the products provided; there is a reason they come included but also consider what is best for you alone). I switched between my Moroccanoil volume shampoo and conditioner and an all organic shampoo and conditioner by BLNDN which was specific to my hair color and type. I love this line and included a link incase you’d like to check it out.
- DRY SHAMPOO: I used two kinds: one by BLNDN & Jet Lag by IGK both smell awesome and make the hair look and feel clean despite the truth. I would only use dry shampoo on day 3 or otherwise it would build up and make my scalp itchy.
- HAIR WASHING/ OR LACK THERE OF: Limit hair washing to once or twice per week. This was difficult to get used to but after seeing how much hair came out during a wash, I was instantly motivated to deal with greasy hair. I learned to simply wash out the conditioner I put on during treatment the morning after (I did use the PAXMAN one then) and wash the hair 3 or 4 days later when the follicles had time to recover from the drugs. The shedding was minimal with this routine but I only learned this toward the end.
- WATER TEMP: Use cold water when wetting and /or washing hair. This is a necessary evil.
- WASHING: Keep hair down as is and avoid tangling it by moving it around your scalp. Massage gently in place and use plenty of conditioner even at the root. (Something I avoided before, but it makes the brushing out much easier.
- COMBING/ BRUSHING: When wet: use a wide tooth comb (wet hair comb )link to buy at target) start from the bottom and comb gently up your hair. When dry: Use The Tangle Teezer brush; it’s important to brush your hair often despite the fear of shedding because leaving it be may tangle and eventually cause more damage.
- CARE: In short, don’t touch it, don’t play with it, don’t even look at it.
Do not wrap it up in a towel after a shower. Hair is most sensitive when wet and wrapping it up will put pressure on the endangered hair follicles.
Don’t use hair dryers or styling tools, air dry only and wear down as is.
Get a silk pillowcase, it won’t pull your hair and it will keep it in place while you sleep, which will prevent any unnecessary hair loss from detangling nighttime knots. Also great for skin, it will change your life, I promise.
Avoid hats, and any hair accessories (I did wear a very forgiving winter hat that ]didn’t pull or put any unnecessary stress on the roots) and twice I wore a ski helmet which you naturally want to stay away from but nothing traumatic happened.
Avoid putting it up. Unless you can’t keep your hands away from it then it’s probably safer in a very loose ponytail (so loose it doesn’t resemble anything close to a ponytail)
Bring back the scrunchie. Refrain from hair ties and even invisibobbles. I didn’t know they existed until now but Free People, Amazon, Etsy & my guess everyone else is selling 100% silk scrunchies and I would imagine those would be the safest choice.A headband is used for comfort and to prevent the cold from freezing your very sensitive forehead (I found how important this piece was when I did an infusion without it, because Alexa likes to unpack my things- but that’s another story) but I did have to fold it in half to avoid it from it pushing down on my eyelids so eventually I replaced it with a thinner one I bought at Lululemon (duh) and I found that to be most comfortable. Lululemon > everything.
To have and to hold to keep my scalp cold till remission do us part. I will now kiss my coldcap! Perhaps you noticed my wedding planning mode is in full swing and that’s due entirely to the fact that I was able to save my hair with the magical powers of scalp-cooling. But everything in life is a trade-off and even though I would always chose to coldcap, it was not easy. My treatments which are difficult enough on their own were extended as I needed to pre- cool 30 minutes prior to treatment and an hour after. The constant brain freeze is painful and causes headaches. While in treatment you spend your time worrying you’re doing everything you can to prevent hair loss and yet you get home and continue to see significant shedding despite your efforts. Your days are spent doing everything in your power to prevent your hair from falling out and it does anyway. Even when you’re succeeding you may feel defeated. You also can’t enjoy any of the hair you’re saving because you’re not able to do anything with it and most of the time it looks greasy and weak. Last but not least, remember that coldcapping is a physical and emotional commitment and it doesn’t make chemo easier or less traumatic. It will still be hell, only cold.
“ But I am getting married next year” I said in the softest voice trying to dismiss the haunting images my brain created when chemo became my new reality. My previously positive outlook on this shitty situation did a 360 in a matter of seconds because for the first time I felt like no matter how upbeat or “strong” I was, I couldn’t save my hair from falling out. My wedding day, as I envisioned it for years had changed and I lost a sense of control I once had. So being able to be a part of this trial renewed my sense of hope and allowed me to focus on getting better. Using coldcaps can be difficult and the stories I read online prior were somewhat terrifying. I often thought I shouldn’t even bother but every story is different and I chose my own happy ending so I hope you do the same.
Below are some pictures before, during and after… I didn’t exactly plan on the specifics so I chose the best examples i had in my Iphone camera….xoxo.