Cold caps

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Hi all

I was diagnosed with HER2 positive ductal breast carcinoma in July. I had a bilateral mastectomy in September and have just learned that I will now be undergoing a weekly 3 month course of Paclitaxel chemotherapy starting next week.

The hospital where I will be having my treatment do not offer the cold cap service. They withdrew this service stating that they do not have the time or resources to offer the service. I was wondering if anybody has any experience of purchasing their own cold cap kit and if so, from where and how effective this was for you.

I had hoped to hire the Penguin Cold Cap system which I’d found online, but this requires sourcing my own dry ice for freezing the caps. Although this is all possible, I have just been informed that my hospital will not allow this due to health and safety reasons of handling the dry ice.

Therefore, I am back to square one and losing hope of accessing a cold cap system.

does anyone have any advice for me please?

Thanks

SusanHB 11 days ago

I was HER2+. I had a lumpectomy first followed by 12 weeks of Paclitaxel.

I wasn’t sure whether I wanted to do cold-capping, but when I turned up for the first chemo session, all the kit was there - for cold capping plus cold mitts and socks.

I fainted part way through my first session and it took them quite a long time to get my blood pressure back up. My oncologist recommended I had future sessions without any of the cold-making kit and everything went far more smoothly.

The benefit is that the sessions are much shorter. With the cold cap you have to get your head chilled before you start - in my case 45 mins because my hair was so think - and then leave it on afterwards - not sure how long for.

I started losing my hair big time after 5 or 6 weeks

Honestly, in the grander scheme of things - for me - this wasn’t such a big deal. I had it shaved to a couple of mm probably around week 7 and it felt liberating. I only ever wore beanies to keep my head warm. I bought a wig and various head wraps/turbans and never wore any of them.

My hair started to regrow really strongly probably 3 or 4 weeks after I finished chemo and I’ve kept my hair pretty short ever since.

My personal view would be to crack on without cold capping - it’s not guaranteed to work in any case

HOWEVER - people have very different views on losing their hair. I imagine you will get other replies encouraging you to persevere.

Good luck with your treatment whatever you decide. What we are all working towards is a good long term outcome

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