Talk to Me about Cold Caps

Hanging_in_there · November 2016

I am starting Chemo on 11/28. I am considering Penguin Cold Caps. It is very expensive and there are no guarantees, but I'm still considering it. I have a ready source of Dry Ice at a Beer store in the neighborhood.

Did it work for you? Did all the things you have to do to your hair to prevent hair loss feel easy to do or was it an incredible chore?

I have not ordered yet, I probably will, but all the things you have to do or not do during this time are freaking me out.

I have fairly thick hair that has never been colored or permed, so I was thinking all that would work for me in using the cold cap. The beer store I would get the dry ice from has done this numerous times for breast cancer patients, which was good to know.

Moderators · November 2016

Hi Hanging, and welcome to Breastcancer.org!

While you're sure to get some good responses on this thread, you may want to check out the well-established Cold Caps Users thread for some really good insight from other members on their experiences!

We hope this helps!

--The Mods

Anonymous · November 2016

Hi Hanging,

I just finished chemo in September. I was on FEC80 every 3 weeks for 6 infusions. I decided at the start to use the Paxman Cold Cap machne which is what we use over here in the UK. It was very cold indeed and can be a little uncomfortable but for me it worked a treat. Still to this day, I have friends and family who are still not aware I have had any treatment at all! My hair was pretty thick to start with, so if you have very thin hair, you may not get a very good result but if your hair is reasonably thick, then do it.

1. Cut hair before you start treatment. Cut it to just tidy it up as once treatment starts you won't want any hairdressers touching it or washing it etc. It becomes a very serious matter and only YOU are allowed to touch that hair!!!

2. Wash hair only once every 10ish days. Use a mild shampoo and I used a keratin based conditioner to help keep it nourished.

3. Pat dry with towels and dry on very low heat with hair dryer or if you can at all, let it dry naturally.

4. Buy a tangle teazer hairbrush. It is fabulous for chemo hair. You can buy on Amazon.

5. You will get your first shedding of hair at around day 16, but it will be a ball of light hairs, almost like a tumbleweed and then if all goes well you won't get any more big sheds at all but will just gradually lose bits here and there.

6. I lost about half of my hair - but again remember I had thick hair.

7. On th days you go to the hospital, ask them to give you a sedative to calm you down. I found this helped me with the freezing temperature. I only asked for this tablet at chemo number 4 and 5 and so did the first 3 without any pills but ask them. The sedative made my head appear to be warmer than it was!

8. Take a woolly hat with you, as your hair will be wet when you go home.

9. Grey hair is a horror - so buy 'Cover My Grey'. It is a powder like an eyeshadow that you brush onto your gray and it does not agitate the hair although it does make it fairly dry. I swear by this product and could not have gone out without it. It cost about $15.

If you want I can send photos to you of my hair during the different stages....as I say, I have people who are not even aware I have had chemo. That's how normal I look.

10. For eyebrows, I have great videos for you:

This pen is utterly amazing and looks so natural - but you will find that cold capping also helps save most of the eyebrows too.

11. Eyelashes - I boughts fakes. Very easy to apply.

Any qns - just ask

Hanging_in_there · November 2016

Dollydimples123,

Thank you so much for the suggestions. I read it quick once, but it is late and am going to study and take notes tomorrow. I'm sure I will have questions. I just ordered Penguin Cold Caps today and which took hours because my credit card rejected the purchase, then their website stopped working. This was the last day I could order and get it on 3-day delivery - given Thanksgiving and 2 weekends are in my way.

The funny thing is I know nothing about hair care or makeup and it is going to take cancer to teach me. (I'm 58). Would you mind sharing the brand of your conditioner. I have been using Suave for years because it is cheap, but now is not the time to be cheap. I plan on using baby shampoo unless someone can suggest something better. We already have baby shampoo in the house.

I have to use the dry ice method. I'm a little worried about being cold during chemo and thinking about bringing a sleeping bag instead of a blanket.

Thank you,

I'm going to bed and will be up to study your suggestions.

Hanging_in_there

Anonymous · November 2016

happy to Skype if you like? Can tell you all about hair and tricks and what to do on chemo days to stay warm. when is your first chemo? For chemo I actually used a shampoo with olive oil in it. Will track it down on my Amazon account for you

Anonymous · November 2016

Hi Hanging,

In terms of hair products, I used anything that was organic or had less harsh chemicals in it. I bought a very expensive shampoo and conditioner by Philip Kingsley on Amazon that is suggested for chemically damaged hair, I read somewhere lots of chemo patients use this. But really in all honesty, don;t go spending a fortune. Just buy a cheap baby shampoo and then maybe an organic conditioner (Burt's Bees was suggested to me by my ward nurse).

Makeup is something you will gradually get to figure out. But I did a lot of stuff to make myself feel better. I used Estee Lauder foundation cream for base and then used my normal makeup. The only thing I eventually had to really pay attention to was the eyebrows and lashes. My lashed did not come out til the very very end, but I have to say they have grown back in within a couple of week. again, I think it's because CC helps preserve the hair on the entire head. My brows were similar. They came out a bit but not completely and so I bought a brow shadow (as she does in video) and applied a very light brush over eyebrow line and then used my dollywink pen to fill in the rest.

My advice is to use a good moisturizer during chemo and exfoliate face once or twice a week.

The nails can present a problem for some depending on the chemo you are using. I used to use t-tree oil (off Amazon again) and rub into the nails and then apply BLACK nail polish to the nails. It is something to do with some chemos (mostly the taxanes) attracting light or something...and so if you cover the nails in black nail varnish they won't hurt or fall off. My nails were absolutely fine throughout the whole thing, but then I was not on a taxane. Also keep nails nice and short too.

Finally, depending on how you are getting your chemo administered...if you are having it given through a vein, you might find that your veins start to feel a little tender. I researched that rubbing sesame oil into the arm and massaging this in for a good 10 mins or so, helps reduce the pain. It is because sesame oil is an anti-inflammatory. I did this regularly and have to say that my veins got better.

I am a big believer in keeping hair as long as you can as it allows you to put up in pontytail and hide any thin patches. Also you can do Donald Trump combovers. So have a few hair scrunchies around.

DD,

Hanging_in_there · November 2016

Dollydimple, thank you for all the advice. I have not skyped and then I am now away for Thanksgiving, getting back Saturday night, before Monday treatment, so time is really limited. I've received my coldcaps, but since I'm not home to receive them, I sent them to a friend. I'm a little overwhelmed by all that needs to be done for cold caps, which I was not fully aware of before I bought. I have been so time limited, that I have not done all the research that I might have otherwise done.

I just got my port, and then left town the next day for Thanksgiving. So I'm recovering from the port and have a few more days to recover before dose dense Chemo every 2 weeks.

Anonymous · November 2016

I'm not sure what prep needs to be done for the actual ice but in terms of hair just wash very little and use very gentle shampoo and conditioner. Remember that even if lots of hair does fall out... keep doing the cold caps as it helps the hair to grow back quicker too. Something to do with follicles. My eyelashes grew back in about two weeks!!! I'm sure it's due to the cold doing something to that part of head/face. You won't regret coldcapping. It's uncomfortable but it's sooo worth it and makes you just feel much more positive about yourself as you appear to be as normal as possible.

marley2 · November 2016

Bring an electric blanket! I was freezing, only think that worked.

Hanging_in_there · December 2016

Thank you Dollydimple for the peptalk

Marley2

I had chemo on Monday and took a down sleeping bag and a blanket. I was shivering some of the time, but I don't know if it was from the freezing head or just how uncomfortable I was and how long it lasted. I had to have cold caps on for 9 hours, the cold caps were much more brutal than the 2 hours of chemo. I will invest in a heated blanket before my next chemo. Although is it cozy to be under a down sleeping bag.

Anonymous · December 2016

I was only 5 hours with Paxman cold cap machine. But I don't think you have them in the US.

DD

Talk to Me about Cold Caps

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