Cancer - saving your hair during chemo!

Having chemo does not = losing your hair anymore.

I want women who have just been diagnosed with cancer, or who know someone else who has been, to know that there is a clinically proven way to save their hair and not go bald. I was able to keep my hair by using it this summer.

I was diagnosed with breast cancer in February and underwent a lumpectomy at Memorial Sloan Kettering in NYC in March, afterwards I was told by MSK that I had to have chemotherapy and would lose all of my hair within three weeks of starting it. I was devastated.

Guess what? It's not true! You do not have to go bald, not if you use "cold cap therapy" during your chemo treatments. I stumbled across information about them and how they save hair in www.breastcancer.org which sent me to www.rapunzelproject.org, a nonprofit dedicated to helping women save their hair during chemo.

I learned that women all over Europe have been saving their hair during Chemo treatments by using cold caps for more than ten years. They are so commonly used in Great Britain that their National Health insurance even covers their cost. They are not well know here, yet, and insurance doesn't cover their cost either. Users have to rent or buy the caps and pay for them themselves. I am hoping that will change as more hospitals offer it as an option.

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 supports new users. It has a big freezer donated by the Rapunzel Project that stores the caps during use.

The caps certainly worked for me and for the women I met there who had just finished using them and who had full heads of hair. Several used them because they didn't want their kids to see them as "Sick Mommy" and get scared.

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 used a brand called Penguin Cold Caps. They are from England but have a US distributor: www.msc-worldwide.com/indexusa.html

Information on using cold caps can be found here:
www.rapunzelproject.org
www.breastcancer.org, go to the chemotherapy forum, then to these two threads "cold cap users past and present - to save hair" and "Cold cap usage tips".

Message edited 1/14/2013 3:50:06 PM.

Re: Cancer - saving your hair during chemo!

wonderful! thanks

Cancer - saving your hair during chemo!

You are welcome. The more of us that know about this hair saving option the better, at least it would give us a choice of whether or not it is worth it to us at a time when so much is out of our control. It was certainly worth it for me.

I've met moms who wanted to keep their hair simply so that their kids would not become frightened that their mother was so sick that they might lose her. The caps worked for them too and while they lost some due to shedding - the oldest hairs do fall out, they kept what looked like a luxuriantly full head of hair to me. There was no way anyone would have known they had just completed a three month course of chemo - or that they were even sick. They looked great.

Cancer - saving your hair during chemo!

This would have been great to know 8 years ago lol losing my hair for me atleast was the worst part

Cancer - saving your hair during chemo!

I'm so sorry you had to lose your hair. I'm not sure cold caps were as good then as they are now, but you probably would have been able to save most of your hair. I know it grows back eventually, but keeping it makes the whole experience of going through chemo much easier. Dealing with cancer is hard enough without also having to lose our hair. I hope you are doing well.

Re: Cancer - saving your hair during chemo!

Thank you so much for sharing that. I am glad it worked for you and I never knew about this!

Cancer - saving your hair during chemo!

Women should not be automatically told they will lose their hair. They ought to be told there is an alternative. Cold caps are not fun, they are cold as hell, but for me wearing them each chemo day was worth it. People have no idea I finished Chemotherapy in July unless I tell them. I look like me. I don't look sick. I just finished six weeks of radiation and am back to living my life again, with my hair.

My hair looks funny as I am a not allowed to lighten/bleach my roots until January, so I have three inch long darkish roots; But, I can live with that. Those with dark hair and grey roots are allowed to do their roots at three months using gentler coloring.

Cancer - saving your hair during chemo!

Bump

Re: Cancer - saving your hair during chemo!

I read about this recently and was shocked that they are not used more in the US. Great info. Thanks for posting

Cancer - saving your hair during chemo!

Bumped to keep info up there for anyone just diagnosed with breast cancer.

Cancer - saving your hair during chemo!

Just wanted to post that Memorial Sloan Kettering Cancer Hospital in NYC recently decided to allow women to use Cold Caps to save their hair during chemotherapy. I don't think they are actively telling women that they can use them, but if a woman knows about scalp cooling therapy to save hair, they will let her bring the caps on chemo day. I am assuming they will allow women at their satelite centers here on Long Island to use them also.

I hope eventually they will accept a donated freezer from www.rapunzelproject.org so that women using cold caps can leave their caps at the hospital between chemo treatments. Better yet, I hope thay will start telling every woman that she does not have to lose her hair, that she now has a choice.

Message edited 4/11/2013 8:27:53 PM.

Re: Cancer - saving your hair during chemo!

That's awesome!

Re: Cancer - saving your hair during chemo!

I just stumbled upon this - thanks for posting!!

My Mom will be starting chemo shortly and I will def look into this further for her... too bad she just spent $$$$ on wigs, though!

Re: Cancer - saving your hair during chemo!

Re: Cancer - saving your hair during chemo!

Re: Cancer - saving your hair during chemo!

Ladybug - I am so sorry your mother was given such bad information. Unfortunately, your mother's doctors are misinformed and/or out of date. Both Memorial Sloan Kettering Cancer Center and New York Hospital's Breast Cancer Center allow Cold Caps to be used as they know they are safe. Major hospitals all over the country allow them too.

Chemo kills fast dividing cells like cancer cells, that's why it is effective. Cold Caps chill down the scalp and keeps chemo from hitting hair follicles and killing the fast dividing hair cells, that's why they work. It does not chill down the brain which is protected by the skull.

Chemo also hits fingernails and toe nails very hard and can do a lot of damage if patients don't ice them, as they also have fast dividing cells. I hope Winthrop will allow your mother to ice her nails.

Breast cancer, if it comes back, does not come back in the form of scalp mets.

Best wishes to your mother. Take good care of her. If she hasn't already found it, www.breastcancer.org is a wonderful website full of good information and helpful forums. Both hospitals mentioned above recommend it.

Message edited 5/5/2013 3:52:57 PM.

Cancer - saving your hair during chemo!

Tourist wrote: " That's great! Do you know what the resistance is in general towards them? Not enough research? Storage costs? Just that's in not really a medical side effect"?"

The resistance seems to be a different in each case. Sometimes it's ignorance. Sometimes it's an unwillingness to be open to change or look into something new. Many Cold Cap users have had to convince their medical centers or doctors to allow them to use cold caps by bringing in information including the results of many trials done in Europe where they are widely used. Some older medical professionals remember seeing cold caps in the 80's before they were effective and think they still don't work, when in fact they do now. I have my hair because I used them last summer.

The Doctors TV show just had a segment on them May 2nd:

http://www.thedoctorstv.com/videolib/init/9093

http://www.thedoctorstv.com/videolib/init/9105

More information about saving hair can be seen at: www.rapunzelproject.org