Scalp Cooling
Hi All,
I wanted to share my experiences of scalp cooling in the hope that it helps other people. I am just completing chemotherapy 12 rounds of Carbo Taxol and 4 rounds AC for breast cancer in a private hospital. Against the odds I have kept the vast majority of my hair.
It gave me such freedom not to have to explain to people about my illness and kept things normal for my young kids. It has not been easy but it was worth it.
Some words of advice.
- It may not work so prepare yourself and get a wig and coverups etc. I felt happier that I had these should it not work for me.
- Become the expert. Don’t assume that oncology ward staff are the experts. I had nurses who didn’t even know how to turn on the machine. Read everything you can on https://coldcap.com
- Know what cap size sits the most effectively on your head (tight but not uncomfortable) and insist on it each time.
- Know much pre infusion and post infusion time you need the cap on based on your type of chemotherapy. Don’t ever allow staff to reduce this time! You need every minute.
- You will need to be your own advocate. Right from the beginning the attitude from oncology staff was negative. Whether this was from being too busy, indifference or where they’ve seen not working. I had nurses discuss opening how it wouldn’t work for me (it did!) and say to me how they hated the process. I was made to feel like it was an inconvenience so there may be sessions where you have to be a little pushy!
- Practical tips
Buy a silk pillowcase, use a soft baby brush to brush your hair, wash your hair only once a week with Simple shampoo. Dry your hair naturally or on a cold setting.
Before putting on the cold cap use a water spray bottle to wet your hair (can be really difficult to wet your hair properly in those tiny toilet sinks!) Once wet brush conditioner through it then put on a hair band to protect your forehead
- I got my hair cut twice during the 6 months. I just asked my hairdresser to be super gentle and not use hot hair dryer.
- Even if it works you may still shred a lot of hair and this can be the most difficult time but persevere.
Best of luck
Comments
I would love to have known more about the success of cold caps... the hair loss caused massive challenges for my older kids and I really feel that had I kept some hair it would have made this horrific journey easier for them.
For any mums of older kids, even if the hair isn't a big deal for you, don't under estimate the impact it might have on your kids... try the cold capping.
Thanks for this post.
This is so helpful. I am getting my treatment in a private hospital in Galway and there is no cold cap, its not in public hospital here either.
Its very frustrating as its just not an option.
My oncologist appears to be anti cold cap saying there is a risk of stray cancer cells migrating to the scalp/ head.
Ive done my research and its very rare for this to happen with multiple studies showing no difference between those who cold cap and those who don't having scalp metastases.
I am seeing it in use in other hospitals @ Ireland so other oncologists must support the use of it??
I am on TC X 4 rounds and I was told I would loose my hair regardless but again I am seeing on other boards people on this regime cold capping and keeping their hair.
I would have loved to try it as again I am private and would like to go into local shop without anyone knowing. I have a good wig so hopefully I will go un noticed.