My lovely (sarcastic) cancer journey began in October 2017 when I was at my gynecologist office for my annual visit. My gynecologist was the one to first feel the lump. A few days later it was a confirmed diagnosis of Invasive Ducati Carcinoma, HR+ HER2+. My surgery was at the end of October and I began chemo December 1st, 2018. About two week before I began chemo I was doing my usual quick-scrolling of Facebook when I saw an old colleague of mine had been through breast cancer treatments and she remarkably still had her hair when she was done. I was confused at how that could be, as I had never heard of cool capping. I pieced together her timeline and realized that what I was seeing was real, a breast cancer patient with hair! I reached out to her and she filled me in on the whole process. She had used a “rental” system during her treatment. The next two weeks I was determined to find a system that would work for me and would be the most convenient.
I was being treated at the Cleveland Clinic and quickly came across articles on how they were part of a clinical trial evaluating the use of a cool cap system for their patients. After much digging, I learned of Paxman, and began a relentless email and phone call campaign with the Cleveland Clinic to install the Paxman system at their main campus location. The physicians, staff, administration, and Paxman were amazing. Just a few days before my chemo began, the system was installed and I became their first patient.
My chemo treatment was 6 rounds, every 3 weeks of (TCH) Carboplatinum, Taxotere (Docetaxol) and Herceptin. Total infusion time (with premeds) was just over 2 hours and by the end of my treatment, I was wearing the cool cap for 4 hours each time. Before I began treatment I signed up for a free wig, that the Cleveland Clinic gives to all their patients. I had no idea what was ahead of me and just in case the cool cap didn’t work for me, I wanted to make sure I had a backup plan. In the end I never wore it!
I honestly didn’t find the temperature of the cool cap to be that chilling, yes, it was cold, but not brutally cold - most definitely manageable. In a strange way I found it was quite refreshing to wear! I am of Greek decent and would say I have thicker than average hair - I was especially thankful of that as I began my cool cap process. By day 15 I started to lose my hair. A week later it was really coming out. In the end I would say I lost about 65% of my hair. I was fortunate though, as the parts I did lose, I was able to easily cover up. My hair was & looked thinner, but most couldn’t tell. I did not lose the strip of hair that frames my face from ear to ear - so I was able to easily pull it back in a low loose bun.I had so much hair loss and it was everywhere around the home. I found the best solution for me was to pull it back in a low, VERY loose bun, held in place by bobby-pins and not a hair band. My last chemo treatment was 3/16/18. Around this time is when I excitedly started to see new growth coming through!
In the end, I would summarize it as this: even though I feel I lost about 65% of my hair, I’d do it again in a heartbeat and would recommend it to anyone. And here’s why ... I finished Chemo March 2018. I then started radiation and finished that by mid-June 2018. By mid-July I was feeling amazing - the chemo effects were almost gone, the radiation burn was gone, I could exercise again, I had my appetite again, and life felt pretty damn great! When I looked in the mirror, I still had hair. Even though I lost the majority of it, I was still able to maintain a “longer hair” look. To me, I looked normal again. I wasn’t bald with a buzz cut just coming thru. Every time I looked in the mirror I wasn’t reminded of cancer. That’s the difference I see.Wearing the cool cap allowed me to keep enough hair that just a month after finishing all active treatment, I felt back to normal. Without the cool cap, every time I would have looked in the mirror I’d be reminded of cancer - I’d see no hair, then a buzz, then short hair, etc.
One tip I would offer is to consider the idea of hair extensions once you’re done with chemo and your hair is strong again. When the new hair growth comes in, it’s amazing and exciting. But then after a month or so, it sticks straight up, sprouting out of your hairline, and is often hard to tame. I found hair extensions as the answer - they were placed on the new growth to help weight them down. The extensions hid the short hair and made it thick again for me; I felt like Rapunzel!
Best wishes to the Paxman patients out there and to anyone who may be considering cool-capping do it!