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Ice cap cooling

6 REPLIES 6
Community Champion

Re: Ice cap cooling

Hello,

 

Yes the cold cap worked very well for me. My hair thinned but I did not need a wig and nobody would have known I was on chemo.

 

It is a bit spiteful but I took pain killers before and had a flask of hot coffe with me - they do come round with a trolley but if you have just missed it you can be miserable with the cap on and no hot drink!

 

I think it was worth it.

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Member

Re: Ice cap cooling

Hi. I have posted this elsewhere but thought I would add here as I had a positive experience with cold capping.  I have  just finished 5 months of chemotherapy last week (yay!). I commenced EC chemotherapy in September and had 3 rounds (every 3 weeks), followed by 12 rounds of Taxol (weekly). 

 

I used the Paxman cold cap throughout the whole chemo treatment and have preserved my hair intact with no bald patches. Whilst I have shed strands of hair most days, and it has thinned a reasonable amount ( in my view say 30% or so), to the untrained eye it is not noticeable. I have short straight hair - not super thick but there was quite a bit of it and I would only colour it 2-3 times a year so it was in quite good condition and strong to start with.

 

So I can confirm that yes cold capping did preserve my hair and would suggest if you can grit your teeth and bear with it, it is worth it.  It has been very empowering especially as I have continued working throughout and whilst I was quite prepared to wear a wig and bought lots of hats I tend to lose heat through my head and can get a bit sweaty from headwear.

 

For the first one I was nervous and was nearly not going to do it as I couldn't find many positive stories on the Forum. But I watched Rachel Bland's blog and that gave me the courage to give it a go.  I took Paramol each time (an hour before) - it has paracetamol and codeine it so a bit of an extra kick. I also had reflexology to coincide with the cold cap being put on. That distracted me enough and I chatted to whoever was giving me the foot massage and that got me through that first 10 mins of freezing.  For the first one I needed to do some concentrating and positive visualisation - imagining jumping into a cold sea or lake and taking deep breaths to get through that first strange experience.  
I had heard some people throw the cap off in pain. I would not say it was that excruciating at all - more uncomfortable like an extended ice cream headache.

 

The nurses always had a heated blanket and plenty of layers on hand. Sometimes I would need them, sometimes I wouldn't.  I tended not to really eat during the chemo either but would make sure I had eaten an hour or so beforehand and not until I got home.  You may want to think about varying the conditioner the nurse put on for the cold cap so you don't associate the smell with the experience.

 

Washing wise - I would wash 2 to 3 times a week and try and natural dry as long as possible. I used a shampoo called Grow Me which you can get on Amazon: https://www.amazon.co.uk/dp/B00Q59B4UK/ref=sspa_dk_detail_1?psc=1&pd_rd_i=B00Q59B4UK&pd_rd_w=gU6aj&p...

 

I also researched good dry shampoos for in between days and whilst expensive found Living Proof (from Space NK) to be best: https://www.spacenk.com/uk/en_GB/haircare/shampoo/dry-shampoo/phd-dry-shampoo-MUK200020501.html

 

You will probably know by week 3 or so if it is working or not as if it is, it won't come out in chunks and should just be strands here and there.  Certainly makes you more house tidy though as there is always hair everywhere !

 

As for my eyelashes - they have pretty much gone now - I was using mascara throughout until about week 8 of Taxol and then they have gradually fallen out.  I now define my eyes quite heavily as a camouflage (Charlotte Tilbury Rock n Kohl)  and wear glasses so no one can particularly notice unless looking closely.  My eyebrows have thinned quite a bit but not entirely (yet) so I pencil those in.  

 

Hopefully I am out of the woods now and I can see new hair strands growing.

 

Member

Re: Ice cap cooling

Hi SuzieQue,

I used the cold cap and it worked pretty well for me! I probably lost about 20-30% of my hair. I kept enough that no-one noticed and I didn't need to use a wig or a scarf. I had my last chemo on 10th October, and my hair is growing back really quickly.  

 On the advice of my friend who used the cold cap the year before me, I took two paracetemol and two ibuprofen about half an hour before the ice cap and this definitely seemed to help.

 I was really pleased that I persevered. But do what is right for you. I had a fabulous wig that if I had had to wear it wouldn't have been a disaster. There are so many lovely wigs and scarves out there.

Best wishes

Jane xx

Member

Re: Ice cap cooling

Hi SusieQue,

 

I coldcapped for 2.5 months at the start of my chemo in September last year. My hair did eventually fall out in November, but I am glad I gave it a go. I still had a lot of hair until then and only really started balding in late November, so the coldcapping did, I think, delay hairloss. When I started chemo, there was a lady on my ward who had been coldcapping throughout her treatment and had only lost about 20% of her hair, i.e. it had thinned a little, but that was all, so it does seem to work for some people. I am still on chemo now (last one in 2 weeks!) and my hair is actually starting to regrow - nice bit of fluff coming through. Smiley Very Happy 

 

A few tips I was given by my nurse to cope with the cold: buy a cheap hairband and place it so it covers your ears, neck and forehead, then put the coldcap on top. This really does help with the cold. I took a large thermos of hot (herbal) tea in to hospital and used it to keep myself warm during coldcapping. Also had gloves and the nurses gave me a blanket, so I was well-wrapped up. And I had a warm, woolly hat for going home in.Smiley LOL I think the key is in the fitting of the cap - it needs to be tight and cover as much of your head as possible. You may be able to take paracetamol before you start the coldcapping to help with headaches, but it's best to check that with your nurse. Oh, and don't wash it more than once a week, don't use a hairdryer, don't brush/comb it (if you can stand that). The less you interfere with your hair, the better.

 

I do think that some people are much more sensitive to the cold than others. I didn't find it too bad to start with, but then my hair was thick and long, so I had plenty of insulation. Once my hair started thinning, it was much more uncomfortable and in the end I decided that freezing my head (and brain!) was not worth it. But, most importantly, you have to do what feels right for you. If coldcapping doesn't work for you, don't worry about it - at least you've given it a go.

 

Good luck with your chemo and here's to lots of fluffy hair at the end of it. Smiley Very Happy

 

Gaby x

 

 

Member

Re: Ice cap cooling

Thank you for your response - I was actually thinking that too but wanted to find out from other members. It’s freezing and soo uncomfortable 

How are you doing with your chemo - as in how many sessions have you had and what meds are they - it’s just nice to reach out and find out how others are coping.

Ive had a left mastectomy with complete node clearance - at first I was told that the cancer had metastised but fortunately for me after the PET scan results it was found that the cancer had not spread. Quite a long toad of treatment ahead for me though ☹️

Member

Re: Ice cap cooling

I tried it at my first chemo session but did not like it at all.  I hated having to sit there with my hair wet and it added extra time to my treatment. My hair fell out anyway so have not used in for the next 2 sessions

Member

Ice cap cooling

I’m interested to hear from anyone who has chosen icecap cooling for chemotherapy hair loss. I had my first chemo yesterday and found the cap quite a challenge and I still have a headache today.
Anyone had good results whilst either using the ice cap or following treatment ? My treatment will go on for at least 6 months and I have quite fine hair 🤔