Cold Caps Usage Tips

What a chaotic first experience!  It sounds frustrating!

I wonder if using 100 pounds of dry ice would help next time?  I use all 100 #'s of it to keep hats cold for the 3 hours prior and 4 hours post infusion.  I have only had one treatment today is day 20.  No shedding or hair loss! Yipee.... I am hoping for the best with next infusion!  

Good Luck to you!

 Hi!

I am brand new here. Was diagnosed friday the 13th of April with DCIS, then again friday the 13th of july after lumpectomy they told me I had stage 1 that was "discovered" in my supposed "clean margin" surgery.

They didn't do a node biopsy, because they didn't think there was anything other than the clean margins (I had a needle core biopsy/MRI "confirmed" nothing left, which turned out to be wrong).

Anyway, I don't want another surgery for the nodes. I am going to do chemo to get it over with. I bought the "Elasto Gel Cold Caps" (5 of them from Amazon) and am desperately seek advice on how to use them.

My hair is almost to the middle of my back, permed and colored blonde. I went prematurely gray in early 20s due to thyroid issues.

I just started a new job; I supervise in an Adult Home (Seniors). I don't want to scare them with an appearance change. And moreso, i want to fight for normalcy.

Can you help me please? I am desperate!

Are 5 caps enough? Do I wet my whole head first, and put all the hair up and in? I'm very scared.

I have to go to work 12 hours now so thank you so much for any and all advice. When I am through with this cancer bullcr*p I will be more than willing to help the next person.

Right now I am begging for help!

Thank you!

Amy

Gingeramy - Leave your hair down, not up. It's not the hair that's being treated but the follicles they grow out of which need to be kept very cold to prevent blood carrying chemo from getting to them. Putting your hair up would act as an insulator between the cold caps and the follicles which is not what is needed.

My Penguin caps had to be kept at -32ºC , colder caused frostbite on me and I lost the hair in the spots where that happened.You will need to get a special thermometer to measure as temperature is critical to success. I have long, straight, lightened hair of medium volume. If you have a very thick growth of hair, you might need it colder.

DO NOT color your hair before using the caps. I lightened my roots six days beforehand which I knew was against protocol and think my extra shedding and hair loss might be due to doing so. Now, I wish I hadn't, but foolish vanity made me do it. Dumb of me. Don't perm either.

Treat yout hair very gently during and after chemo for about three months to avoid extra loss. No brushing it, styling or blow drying it as you might be used to doing. Shampoo gently with Ph balanced shampoos, using as little scrubbing action as possible. I pat the shampoo on and ever so carefully run my fingers through the soapy hair, then rise it out. I have been using DermOrganic brand as Penguin recommended it and I found it on Amazon.

Because you cannot take care of your hair as you usually do, you will look like you are having lots of bad hair days, but if you keep your hair, it will be worth it.

 Good luck! 

GingerAmy, My thoughts exactly. Getting a bc diagnosis was overwhelming, and I couldn't stand the thought of looking sick and having my privacy being invaded.

Hortense has great tips and also started a new thread, http://community.breastcancer.org/forum/69/topic/791217?page=1#idx_6 for ladies just starting on this journey.

www.rapunzelproject.org donated a freezer to my chemo center. I had to pursuade the center to accept it though.

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Tips:

1. To keep your hair from catching on the cold cap's velcro straps during cap changes - have your helpers loosely attach the velcro straps before placing the cold cap on your head.  Once the cap is set on your head, put your non-infusion hand firmly on it to hold it in place, that frees the helpers to concentrate on tightening the velcro straps. Have them start with the front straps, then have them tighten the back flaps until the cap is snug. At that point you can remove your hand. 

2. If you have a large head - get extra gel bands to wrap around just below the caps so that you will not lose any hair not covered by the cap itself - any hair not covered WILL fall out. The gel bands should be butted closely up against the cold caps at every cap change and should cover every bit of your hair below the caps on the sides and on the back of your head. Be sure your helpers have the gel bands at the same temperature as the caps.

Ok Everyone. I just scheduled the pick up for the penguin cold caps, have the ice man ready to deliver and chemo TCH starts Feb 25. I have more tests this week. Just found out I was low B12 so will be beginning B12 shots as well. I have my coolers, electric blanket, still need to pu mole skin and shampoo today. I really appreciate the info about the tightening the Velcro beforehand.

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I put a thin elastic headband on to keep hair out of my face and then I used a thin rubberband and put my hair in a low ponytail without making it too tight.  I was very gentle putting the rubberband in/out.  My hair was down to the middle of my back when I did chemo.  I exercised 5 days a week through chemo.  I was not running but doing weights and the ellipical.

dancetrancer and mdg -thank you so much.  I read your blog mdg before I started chemo and it was very helpful and inspiring to know I could get through this, keep me hair and now reading these boards and your blog, realizing I was not the only one!

if you've already had your first treatment I believe it's too late to save your hair. But if you used the caps for the rest of your treatments your hair will start to grow back during your chemo. It is a pretty labor intensive process....so it may or not be worth it to you.

Hi all! I'm just now joining in! I had my first chemo and first cold capping last week on Jan. 13. I didn't think the cold cap was nearly as bad as I expected. But the cold hair wash is brutal! Of course, it doesn't help that it's so cold outside right now. From others I know it was recommended to start Biosil and Silica so I started just a couple of days before chemo. I am so worried that I'm being too tough on my hair with hair washing and brushing. I'm only washing every 2-3 days and try to only gently brush once a day or so. Does anyone have any tips for this? Thanks!

Thanks! I just need to embrace the "bed head" look!