Going bald when you are diagnosed with breast cancer and need strong chemotherapy is NOT a given in spite of what we are told. I just finished chemo using cold caps and was able to keep my hair, and I know of lots of women who have done the same. Keeping it makes such a difference in how I feel about myself as I deal with cancer that I have to try to let others know about how they can save their's too, because until recently I had had no idea it was possible.
Cold caps are widely used in Europe, but not well known here. I stumbled across information about saving hair in http://www.breastcancer.org which sent me to http://www.rapunzelproject.org which is a nonprofit dedicated to helping women save their hair during chemo. It has videos and news clips showing how they work and the results.
Cold caps are so commonly used in Great Britain that their National Health insurance covers the cost of using them. We in the States have to rent or buy caps and pay for them ourselves, but I hope that will change someday.
Most American doctors and nurses don't know about them or are skeptical, which doesn't make sense because they do work. And, some hospitals won't allow them because using them requires a bit more space per patient and a longer time there the day of the treatment.
I had to switch doctors and hospitals in order to find a place that would allow me to use them and I am so glad I did. I went to New York Hospital's Weill Cornell Breast Center where I found out that 38 women had already used them and it was welcoming new users. It has a big freezer for the caps donated by the Rapunzel Project.
I became part of a study the Breast Center is doing on cold caps to see how well they work to save hair. Other hospitals across the country are also doing studies now. The hope is that the FDA will approve the caps and they will become more widely available to women - and men - who might want to keep their hair.
The caps certainly worked for me and for the women I met who had just finished using them and who also had full heads of hair.
My hope is that more people will learn that they have a choice and that they do not have to automatically lose their hair if they have to undergo chemotherapy. That is why I decided to post this thread. I have no connection to any company that makes them. Please pass this information along to anyone who has just been diagnosed with cancer, it may make an enormous difference to them.
I've been looking up different ways to save my hair as well. I've read on a few different sites that it's not recommended to make your head cooler to keep your hair. It slows down the blood process to the area and therefore your head doesn't get as much treatment as everywhere else and had lead to the cancer spreading there.
How do these cold caps work? What's in them?
I think it might be too late for me to use them as my first week of treatment is done and doctor says my hair should start falling out at 2-3 weeks.
The whole point of cold caps is to cool down the scalp and thereby slow down blood flow to the hair follicles in the scalp so that the chemo in the bloodstream doesn't destroy the hair. They work.
The picture is of my own hair taken three weeks after finishing my last of four Taxotere/Cytoxan treatments while using Penguin Cold Caps. Taxotere/Cytoxan is a common chemotherapy treatment for breast cancer that causes complete hair loss. Without using cold caps, I would have been completely bald.
Taxotere can also cause permanent hair loss. Some women never get their hair back or it comes in thinly, however, most doctors don't tell us about that risk. Mine didn't. I've read that it happens in up to 5% of women, which is pretty high in my books. There is a website called http://www.taxotears.com created by women who have had bad experiences with it.
Breast cancer does not metastasize to scalp, it goes to bones, liver and lungs among other places. Clinical studies of thousands of women with breast cancer in Europe have shown that using cold caps is safe and does not result in cancers of the scalp. My hospital would not allow their use if it thought there was a problem.
Twenty years ago efforts to cool heads to save hair didn't work well, but methods have improved since then. Go to the websites I posted above to learn about them. http://www.breastcancer.org is a very well respected site. It is where I first learned about cold caps. Its forums and threads are full of helpful information from women going through various stages and treatments for breast cancer.
It's funny isn't it that when we are very sick something as simple as losing or keeping our hair means so much. I wish you had known about it as well. I found out by sheer luck as I read through threads on breastcancer.org just days before having to set a date to start chemotherapy. I am hoping other women will spot this post and look into this method of saving hair during chemo. It truly works.
I am so glad you found this treatment and it helped you. Over 30 years ago my dad had lung cancer chemo and they were experimenting with cold or ice caps with him. I haven't heard anything about it since then.
This just shows how important it is for people to share their experiences with others -- doctors aren't the only source of great information.