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Cancer Recurrence and My Cold Capping Experience

Surviving Breast Cancer
May 26
5 min read

By Jen Fernandez

Listen to Jen on the SBC podcast, Breast Cancer Conversations:

The Truth About Cold Capping During Chemo

I was getting out of the shower one day in January 2023 when I noticed what looked like a shadow on my left breast. When I looked a little closer, it was a dimple. When I pressed, I felt a lump. I tried not to panic. I told myself that it may be scar tissue, but deep down I think I knew my cancer was back. Just a few weeks earlier, in December 2022, a breast exam at my gynecologist’s office was clear!

I was originally diagnosed in January 2020 with stage 2a HER2 positive, hormone negative breast cancer in the left breast. I had chemo (weekly Taxol) and lost my hair, all while Covid took over and shut the country down. I had a lumpectomy the week that “elective” surgeries were allowed to resume, followed by radiation. I completed Herceptin and Perjeta in February 2021. Like most breast cancer survivors, it was hard not to live in fear of recurrence, but as more time passed, that fear lessened.

After noticing these breast changes in January 2023, I found out my cancer was back. It was the same pathology as before. Luckily, after a bone scan/CT scan, it was determined to be a local recurrence (stage 2a) that was caught early.

Because I had a recurrence, I was given a more aggressive chemotherapy regimen. My oncologist asked if I was interested in cold capping to preserve my hair. Dana Farber now had the Paxman cold capping system, which was not available there in 2020. Since I had already lost my hair the first time, and it was emotionally very difficult for me, I decided that I wanted to give it a try.

I made an appointment with a nurse at Dana Farber to be fitted for my Paxman cap. The nurse gave me the Paxman website to view videos and useful tips. I had to call and pay for the cap plus the cost of treatment for my 6 chemotherapy cycles of TCHP (Taxotere, Carboplatin, Herceptin, Perjeta) every 3 weeks. It was expensive (I can’t remember the exact cost, but it was over $1,500) and unfortunately it wasn’t covered by my insurance.

I decided to watch all of the videos including how to put the cap on at my appointment, and how to brush and care for my hair while going through chemo. I joined the Paxman Facebook community group to read about others’ experiences. I received my Paxman kit within a couple of days, which included shampoo, conditioner, and a small brush. The blue cap that is applied directly to the scalp has a long hose that attaches to the Paxman machine. The second cap goes over this piece and is tightened to keep the blue cap close to the scalp. I practiced at home a few times and decided I was ready.

The night before my first chemo, I took a long hot shower and washed my hair. I knew it would be a while before I was able to really scrub my scalp with hot water. At the first chemo appointment, I brought the entire Paxman kit with me. I put a decent amount of conditioner on my hair and scalp, which helps prevent hair from sticking (freezing) to the blue cap. On Facebook, others recommended putting a pantyliner or gauze pads at the hairline to prevent the forehead from getting cold, so I stuck a pantyliner to my forehead. The nurses then helped make sure the cap was nice and tight. I was given a dose of Ativan and 15 minutes later we were good to go.

I was definitely not at all prepared when the machine was first turned on. Honestly, it was so brutally cold that it was almost painful. After about 15 minutes, it was almost like my scalp got used to the cold and became a little numb. Either way, the intense cold/pain wasn’t as bad. I was given warm blankets that I would wrap around my shoulders. The nurses would come by often and replace the blankets to keep me warm. I had to wear the cap for 4 hours (starting 60 minutes before chemo and continuing until 90 minutes after chemo was finished). I remember taking the cap off and having a headache, likely because the outer cap was on so tight. It was a long 4 hours!

Getting home, I made sure to follow the Paxman recommendations. My routine was washing my hair the day after chemo and then once a week. This was best since I put conditioner in my hair when the cap was applied and my hair always felt greasy after. I used the Paxman shampoo and conditioner with cool/cold water. When washing, I used my fingertips to gently rub the shampoo onto my hair. I left my hair under the running water just enough to rinse. When brushing, I would hold the hair by the root and brush down very gently using the Paxman supplied hairbrush, to prevent pulling. I bought silk scrunchies from Amazon and would put my hair in a low, loose braid to prevent tangles and keep my hair off my face.

While receiving treatment, I knew that I would shed more hair than usual, even using the cold cap. My hair started to shed a decent amount after my second cycle of chemo. I could definitely tell there was more hair on the brush, which was a little discouraging. But my hair looked great, and people couldn’t see any difference.

I can’t lie, I dreaded every chemo appointment, and using the cold cap. But I also knew that each appointment was getting me closer to the finish line. Every time, I thought I only needed to do this a few more times. I dreamt of the day when I could wash my hair with hot water and put my hair in a real ponytail!

My last chemo finally came. I did it! It was such a great feeling to be done with the hard part. I had read that the shedding of the hair would continue for a while after stopping chemo. I needed to continue to “baby” my hair until shedding returned to the normal amount. I had no eyebrows or hair anywhere except the top of my head, so I knew that the cold capping had worked!

Overall, I kept around 80% of my hair. I only had one small bald spot on the very top of my head by my part. My hair continued to shed for around 4 months after my last chemo, which seemed like it took forever. I gradually was able to wash my hair more frequently and increase the temperature of the water. When I went to my hairdresser for my first haircut about 8 months after stopping chemo, she was amazed at how healthy my hair looked. I hadn’t done anything harsh to my hair, including using a hairdryer, since the start of chemo.

I am very grateful that I had the option to use a cold cap. I didn’t look like a typical cancer patient, which was important to me for many reasons, including my children. I am confident that I was successful because I followed all the recommendations listed by Paxman. It was a commitment, but necessary to be successful. I would do it again in a heartbeat!

Wishing all of you luck in your breast cancer journey!