Cancer type: Breast
Drug type: AC & Taxol
Hair type: Long
"My oncologist told me with the chemo I was getting that it was very unlikely the cool cap would work for me. Telling someone who is 25, that they are going to lose their hair is devastating and not something I could bear. So, for the first time, I ignored what my doctors were saying and bought the cool cap with any hope that it might work."
Hi, my name is Danielle and in July 2018 I was diagnosed with Stage 0, DCIS breast cancer at the age of 25. My story began a few months prior in April 2018 after having my yearly check up with my GYN at Johns Hopkins Hospital and was told everything looked great. My GYN re-prescribed me birth control since I had gone off of it for a few months to give my body a break. Little did I know at the time, my local pharmacy miss-prescribed me the wrong (higher) dosage.
A week or so later my left nipple bled the slightest amount and at first I didn’t think much of it, just assumed this was a side effect and that my body was re-acclimating to the birth control. The nipple bleeding continued one or two more times where I then was left no choice but to google what was going on with my body. This is where I was first introduced to the “self diagnosis,” but how could this be? Breast Cancer does not run in my family, I was only 25 at the time and live a very healthy and active lifestyle.
I made an appointment with my GYN and after a few ultrasounds and MRIs they noticed something in my ducts so we did 2 biopsies of left and right breast. Right side came back first and it was benign. Left side results came back and the surgeon at JHH told me over the phone (while I was at work) that I had Stage 0 Breast Cancer and to come in immediately for a mammogram. On August 29 I had a left breast mastectomy, where they could not save my nipple. I went through IVF, fertility treatments in hopes of preserving my eggs as chemo destroys all good and bad cells.
It was not until my surgeon’s patient navigator mentioned the cool cap in a text one night that I started doing my research, since I had never heard of it before. My oncologist told me with the chemo I was getting that it was very unlikely the cool cap would work for me, and matter of fact it had never worked for someone getting my treatment. Telling someone who is 25, that they are going to lose their hair is devastating and not something I could bear. So, for the first time, I ignored what my doctors were saying and bought the cool cap with any hope that it might work.
In November 2018, I started 5 months of the most aggressive chemotherapy. I went through 2 month of dose dense AC chemotherapy (once every 2 weeks) and then taxol chemotherapy (once a week for 3 months). The cool cap was fairly new at Mercy so I was one of the only few patients who had ever used the Paxman cool cap so there was no guidance but we worked through it. The staff were great working with me, staying late since I worked through my entire process and would need to leave work at noon to get to my treatments in time.
The cool cap is chilly but nothing you can’t manage. The first couple of times I took Advil because I got a headache but from then I would just try and sleep through it with the heated blankets the hospital provided. I wish I would have known about those bean bags you can heat in the microwave at the time for my neck. Anything is worth fighting for your hair, especially once you past the point where most do lose it.
I never wore a hat during the treatments but since I had my treatments over winter so I would put a beenie on right after we took the cool cap off so I would not get a chill… and my hair looked like Jack Frost.
I am so proud to share my story with you today that other than some light shedding, I did not lose any hair. I babied my hair in the shower and only washed it with the Paxman shampoo and conditioner once a week, took lots of biotin and slept with a silk pillowcase, but my hair is still intact and I am forever grateful. Today marks almost 2 months from my last chemotherapy treatment (which was one week before my 26th birthday), so I went to the salon and got my hair done today. This was the first time in over a year I left anyone touch my hair and it was so empowering. Baby your hair! It just went through a lot. I am still using the Paxman shampoo and conditioner and do not much heat on my hair. I bought the rubber hair ties that are easier on my hair. Dry shampoo should become your best friend. I also use baby detangler and a detangler hair brush.
In 2 weeks I have reconstructive surgery, but everything seems so effortless now that I did not lose my hair. It was upsetting my insurance company would not cover the costs because Paxman is out of network; however, you can’t put a price on mental stability and that is what saving my hair has given me. I hope in the future insurance companies cover this as a medical necessity and not “experimental” because it truly works.
"I would absolutely recommend scalp cooling, it is 100% worth it. I am seriously so grateful for the Paxman Cool Cap. Even if your doctors tell you it's not going to work with your treatment, don't listen and trust your gut because I did and am a true success story. Thank you Paxman for saving my life."