Penguin Cold Caps

Lindsay’s Story

Lindsay’s story

Lindsay was diagnosed with breast cancer and chose to save her hair with Penguin Cold Caps

I’ve had a lot to deal with since my cancer diagnosis. Not only was I coping with the disease and the chemo while looking after a young family (I have two boys aged 1 and 5), there was also the small matter of a global pandemic as well as an out-of-state move from Mississippi to Florida for my husband’s job. It’s not been easy!

What type of cancer do you have?

I was diagnosed with stage 2B breast cancer – more specifically Invasive Ductal Carcinoma, ER+ PR+ HER2-.

My biggest fear was that of the unknown. What was my prognosis? What would chemo be like? Am I going to beat this? Why did this happen to me?

My second biggest fear was the thought of going bald. And not just going bald, but the months or even years it would take for my hair to grow back and look normal. I didn’t want people seeing me differently. I didn’t want to look in the mirror and see a cancer patient, rather than me.

Saving my hair was very important to me – it meant that I could retain a sense of normality at a time when nothing else felt normal. It also gave me control over something, when so much of what was happening was totally out of my control.

How did you find out about cold capping?

A friend recommended a Facebook group called Young Survivor Sisters Breast Cancer Support Group.

I posted a question asking how to best explain cancer, chemo, and going bald to a young child.

I received a reply from someone saying that she didn’t have to explain why she’d gone bald because she’d saved her hair by cold capping. She pointed me to another Facebook group, Chemo Cold Cappers Support Group, which I’ve found extremely helpful for both capping and non-capping information.

Penguin Cold Caps also run a Facebook group called Chemotherapy Support Group, with over 8000 members, all with cancer and undergoing treatment, offering helpful advice and support to each other.

Why did you choose Penguin Cold Caps?

There were a ton of posts within the cold cappers group with people asking “which brand should I use?”.

I read through hundreds of responses on dozens of posts and kept seeing Penguin come up over and over again as the most common response, along with pictures proving that it worked for so many people.

What was your drug regimen?

I had 8 rounds of chemo, including 4 rounds of AC and 4 rounds of Taxol (with 2 of those including Carboplatin).

What was your experience of using
Penguin Cold Caps?

At first, it all felt a bit overwhelming – I was starting chemo in less than 2 weeks so I didn’t know if I’d have time or the energy to arrange everything before my first treatment.

I was already mentally, emotionally, and physically drained from dealing with the diagnosis and countless medical appointments – I didn’t know if I could add one more thing to the mix. But I’d read so many stories about other people who had, plus my best friend took on the job of making initial inquiries and gathering all of the information I needed to make a decision.

I found the ordering process simple and easy to navigate and the team at the Penguin depot was fantastic and super responsive.

My husband was my cold capper and I attribute a lot of my success to him – getting the caps on tight every single time, making sure to evenly stack the dry ice, checking the temperature on multiple spots of the cap, etc. definitely requires someone who is dedicated to the job!

It is cold, but not as bad as I was expecting. It’s very tolerable once you get used to it.

Were your medical team supportive of you using the caps?

My first oncologist told me it probably wouldn’t work. She said it was expensive and the few people that had cold capped under her care hadn’t had much success. However, I was determined to persevere.

I did two rounds of treatment at that hospital (both nurses said they had never seen anyone cold cap before, so they weren’t particularly encouraging) – but then disaster struck, they stopped allowing visitors due to COVID. My husband was my capper, so having him there was essential.

After calling around to several cancer centers I found one, the Southern Cancer Center in Alabama, that was supportive of cold capping and would allow my husband to be there with me. The only problem being, it was an hour and a half from where I lived. And because you need to cold cap for several hours after treatment to give the drugs time to dilute in your body, I had to pull over and stop several times on the way home to change the cap!

We did this for four rounds before switching to the Mayo Clinic in Jacksonville for the final two, and the medical team there was also very supportive of cold capping. My oncologist was even mentioned in an article by Mayo supporting cold capping.
Mayo Clinic Minute: How cold cap therapy is helping cancer patients keep their hair during chemotherapy.

What tips can you offer others when using the caps?

  • Use the same capper throughout the entire course of treatment
  • Get an electric blanket – it keeps the rest of your body warm, and works way better than hospital or other blankets
  • I used bandless earmuffs to cover my ears and protect from the cold
  • We purchased an infrared thermometer to quickly and easily get a temp reading on the multiple parts of the cap (front, back, and sides). Penguin does send a thermometer, but we found the infrared one easier to use.

How much of your hair did you save?

My hair is medium in length, quite thick and straight. I believe I have saved about 70% of my hair – there was some shedding throughout, but it’s evenly spread so I don’t have any bald patches and it’s not noticeable to others.

Are you happy with the overall results?

YES! It was exhausting at times, but I’d do it all over again and so glad I decided to cold cap with Penguin. I’m so thankful to be able to look in the mirror and still look like myself, which has helped give me that extra boost of strength I needed to get through this.