Cold Cap - does it work??

Hi

I am soon to start chemo. I am getting married in September and have been growing my hair especially! My hair is very long and gets highlighted. I am next due for a highlight session a week before my wedding, because what bride wants roots on her wedding day!!! I have been offered the cold cap but I am just wondering whether is really works, and if it does and say I manage to keep most of my hair then can I still get it highlighted???

If I can’t get highlights due to sore skin or whatever hideous thing this chemo is going to do to me, then maybe I should say to hell with the cap and just get a wig anyway.

I look forward to hearing from anyone who has experience of the cold cap.

Hi Bird,
Yes, it did work for me when I had chemo in 1996- I never lost my hair but I did loose my eyebrows!I too had long hair and my children were quite young and I didn’t want to scare them any further; they were already scared with me having been in hosptial 2-3times for ops. So go for it if that’s what you would like- it is a bit uncomfortable but worth it! Love Beatrice.

hiya,

i am 4 sessions into chemo. I had cold cap for my first session, it was a bit cumbersome and made the process longer, but it didn’t hurt me and i found it easy to wear. I started losing quite a bit of hair a few weeks after that treatment, and i shaved it off, but that was more because it was driving me mad and i oreferred to just get rid of it than keep checking and stressing over what would happen. When i shaved it and even since, i have kept a fair covering of hair. I think it would probably have worked pretty well if i had kept it up.

I don’t think they recommend chemical treatments on your hair whilst having chemo, have a look on the paxman cold cap website to see what they say. Maybe you could have your hair coloured back to your natural colour all aove beforehand so no roots, and then maybe have a natural colour put on for your wedding? I do know the cold cap is supposed to work better if your hair is shorter, and it is less stressful for sort hair coming out, so if you want your own hair for your wedding day ( which i would too!), maybe consider a different short style as a compromise and get it cut now??? Whatever yopu decide, i think the cap is worth a go cos if it doesnt work, you can shave the rest off and get a wig at any stage.

Good luck, sorry you are dealing with this rubbish during the run up and day of your wedding,

Vickie

I used the cold cap, partly because on my ‘pre chemo’ visit to the unit there was a lady who was on session 5 of her FECT regime and who had an amazing head of hair.

For the first 20 mins it was pure undilute hell - I was fortunate in that the unit had a complementary therapist, who sat with me massaging my feet, and telling me I’d done a minute, just to do another for her, and she got me thru it. I had longish hair but fine - below my shoulders - which I had cut in case it didn’t work to reduce the trauma, and after my chemo I still had hair but it was uneven in its thickness and had thined considerably. I ended up having a ‘pixie’ ish cut at the recommendation of my hairdresser so shorter than it’s ever been, but I preferred this to my wig.

I never used my wig, instead bought caps from ebay which I really liked - see item 390101516853 seller abyan7.

If you do cold cap, make sur ethey fit it properly - really tight and touchiong th etop of your head each time - I think mine wasn’t always on properly and thats why my results weren’t as good as some - but I’m very glad I used it - it’s given me a head start growing hair back.

Good luck!!

Hi Bird,
I used the cold cap very sucessfully in 2002, whilst having 4 x FEC and 4 x Docetaxol - but I’m very aware that there are no guarantees with it and that it’s something that not everyone is able to tolerate.

I have quite short hair and during my treatment it thinned a little but you wouldn’t have been able to tell - and I still had to have it trimmed regularly.
I was advised to use only baby shampoo whilst using it and not to have it coloured.

I found it extremely uncomfortable and it prolonged the time I was in the chemo suite, but for me, it was worth all of that to keep my hair - although I lost every other hair on my body.

Good luck and all best wishes for your wedding x

Hi Bird,

I tried the cold cap but unfortunately it didn’t work for me and I lost all my hair. It seems to depend on the type of chemo used. Mine was nasty and they doubted the cap would work but I decided to try anyway. I also think that you need to make sure it is really tight on your head. My mum’s was a bit loose on top and she lost more hair there and kept it near the bottom where the cap was tighter.

Having lost my hair, I got a wig which was the best move for me. It was really nice and after the first time I felt much more confident going out. Friends told me that they couldn’t tell - I chose one close to my normal hairstyle. Everyones different but this really worked for me.

Best of luck with your chemo. Hope that the thought of your wedding helps you through the difficult times.

Liz x

Hi Bird

I had a very successful cold cap. I just looked like I was having a bad hair day.

I was told before hand to use a gentle shampoo like “Simple” or a baby shampoo. Not to pull on my hair. Don’t use conditioner and don’t use any chemicals on it including not going near any swimming pools.

It wasn’t pleasant but I tolerated it as I didn’t want to lose my hair.

The only was I can describe the experience is to liking it to eating very cold ice cream that has just come out of the freezer. You know that burning sensation you get round your jaw. Well it was like that but in my head instead of my jaw.

I have often wondered if any trials have been done on to why it works on some people and not others.

Hi Bird

I have been using the cold cap successfully, so far i’ve had 4 x FEC and 3X TAX. I had my hair cut to shoulder length before i started chemo and so far it has only thinned.
Anyone not knowing I was having chemo wouldn’t be able to tell but I can. I’m using a childrens shampoo, no other hair products and I only brush it a couple of times a day.
I have lost hair everywhere else and now i’m on TAX my eyelashes and eyebrows are starting to go but a good mascara and eyebrow pencil work wonders.
The cold cap isn’t pleasant - I had the type where it needed to be changed every 30 minutes, the first few minutes when it was changed were the worst, but taking paracetamol before hand helps. Again same as others have said you need to make sure it is tight against your head to prevent bald spots.

Hope this helps and all the best for your wedding in September.

Michele

Hi there

I used the cold cap for 2 of my Epirubicon sessions but lost so much hair decided not to continue for the last 2. I decided that i needed to give it a go as i didn;t want to think later “what if…”.
Saying that a lady who started chemo at the same time as me never used the capo but invested in a fantastic wig. When we met up for treatments i was truely amazed at how real her hair looked, not wiggy at all. She was the grooms mother at his wedding half way through her treatment and you really really could not tell. She went to the wig shop before treatment started and they matched her wig exactly to her style and colouring.
Invest if you can ( you do get an NHS voucher for part payment for a wig )so that helps with the cost. I think she paid about £200. But for her and her sons wedding that was a small price to pay, and she did look stunning.
Wendy
x

So far I’ve had 2xFEC and still have a fair amount of hair, though sadly a bald patch on top. Still means I can wear a wrap/ scarf on top and nobody would guess. I think CC’s worth a go, just don’t bank on it. Also, if your hair does start going (mind did on day15 of first treatment), don’t do anything drastic too soon. I nearly shaved all mine, but am glad I persevered. Wendy’s right too though, the wigs are amazing, so don’t despair too much. Good luck x

HI there

I had 4x FEC last year with the cold cap and it mostly worked for me. I have short fine hair, which I think is the trick, if you have thick hair the cold doesn’t penetrate to the skin and freeze the scalp. I went partially bald on top and oddly completely bald over one ear but the bit over the ear was covered by the rest of the hair and most people didn’t notice the thin top. I wore scarves wrapped round just to hide it and to keep the top of my head from getting cold.

The worst hair loss was on cycle 1, after that I lost hair constantly through each cycle, but not as fast. My hair has grown back quickly although I now have a tufty bit on top. I had a great wig which looked better than my hair but I never used it.

The cold cap is absolute hell for the first 20 mins, after this your head goes numb and it’s ok. It does make the whole chemo thing a nightmare day, taking 4 hours compared to just one. It’s not a pleasant experience and nothing can make it so, but just keep at it if it works, it is worth it. Make sure you wet your hair with water or conditioner before the cap goes on and make sure it is very tight - particularly push it down on top to make sure it touches the top of your head - this was my problem which is why I lost hair here, I think.

I went from washing my hair every day to once a week (very yuk - but necessary as the most hair loss was when I washed it). I used a natural shampoo and nothing else, not even sprays or wax. When it looked awful I wrapped it in a scarf or hat. I used dry shampoo (batiste or Boots) when it got particulary greasy although I found that it did get a sort of balance with not being washed so often.

I had it cut once during chemo, preferring to let it alone. My hair is a layered bob and I think you get better results from shorter hair rather than longer.

Give it a go, unfortunately I know of more failures than successes with the cold cap but maybe like me you will be one of the lucky ones.

Just writing this makes me feel nauseous all over again - I had to throw away all my shampoos and other toiletries after chemo as the smell just reminded me and made me feel sick again!

Good luck and hope it’s all well for the wedding, I’m getting married in November and hoping my tufty hair will have settled down by then.

I had my hair coloured three months after finishing chemo and it is mostly ok but the hairs do now break quite easily so I think there must be some sort of damage - be careful with colour.

Helen.

Leucite I agree, except for the thick hair. I have very thick hair - or rather I have masses of hair but the individual hairs are fine, if you see what I mean. But I had it cut very short for chemo, and it was pretty successful. I lost very little hair with 3 FEC, more with Tax, but I think it was because by that stage I was struggling with the cap and made less effort to make sure it was pulled down tightly. I also had one session where they got the timing wrong - put the cap on too early, and didn’t have enough to last the whole session.

Bird re your wedding - do you plan to wear your hair naturally or with some kind of headdress? If you do lose some hair with the cold cap, I would have thought it would be relatively easy to cover up some thin patches with flowers, or work in a hair piece, as it tends to be on the top of the head that thins. Maybe you should have a plan with your hairdresser just in case.

Also, how far into your chemo schedule is the wedding - have you been able to organise it so that it is in the 3rd “good week”? If you’re having FEC, that is. Anyway - good luck - how lovely to have something so exciting to look forward to and hope it helps take your mind of the cancer.

Sorry - really tried but it didn’t work for me. Managed to keep it on throughout all of the cycles but sadly lost 99% of my hair regardless. Can’t comment on whther or not it comes down to the type of chemo (AC), or thick or thin hair (thick ) or the type of cold cap - paxman or the other one (other one )

I wish you the best of luck for the wedding - i’nm sure you’ll look gorgeous regardless, in a wig or your own hair

Lynn

Hi, I have just finished 6 rounds of FEC and used the coldcap throughout and I still have a full head of hair. I started with short really thick hair. I will be honest I lost lots and it is still thinner but only people who know me well would notice. I am really please with the results and am very glad I did it, but I know it’s not the same for everyone. They do say however not to colour your hair during or for 6 months after. I think you can use natural colours but I’m not sure on that bit.

Wishing you the best for your treatment, and have an amazing wedding!

Kells

xxx

Kells I have just coloured my hair after finishing chemo in April, but I used the vegetable dye - Naturetint I think it’s called. Hair seems to be fine, but the colour is slightly odd - not as good as the harsher ones I used to use. Even so, I am still losing more hair than usual every time I wash it - I guess it stabilises eventually.

Hi Girls

Good to read all your comments. I have since had my first round of chemo. I am now day 15 and quite alot of hair seems to be falling away today my scalp also feels really sore. I had the cold cap and didn’t find the experience too bad. I likened it to having my head in the snow (which as a snowboarder I have done on many occasions!!!) My head numbed quite quickly, and I actually found it all amusing! So did my fiance who took a photo! sod. I have been using the simple baby shampoo - which I am really impressed with. Also been using a coconut and almond oil conditioner. Dreading the next wash though cuz I think the plughole is going to become very blocked! Earlier I ran my fingers through my hair and a huge handful of hair came away. I felt really rather sick and quite faint!! It seems to be coming away from the edge around my neck more than anything else. I had a couple of inches chopped off the other day as I really can’t face going very short very quickly. Although I may well have to. I now know that I can’t have highlights, so I have resigned myself to getting a wig for my wedding. Due to the style of our wedding I do need a lot of hair! I will see how it all goes but if my scalp feels this sore on my wedding day then the thought of having hair pieces stuck in it all day gives me a headache!!! So a wig it is. I just haven’t had the courage to phone the wig people yet. Better get on with it though cuz wedding is just over 5 weeks away!!! On a lighter note I can take comfort in the fact that pretty much all of our wedding party will be wearing wigs!! It’s a pirate them. Groom is Jack Sparrow and I have a replica Elizabeth Swan gown. It’s an obsession of ours!!!

Chat soon. Big hugs to all.xxxxx

Hi Bird
Starting chemo soon and trying to get my head around the idea of losing my hair. Popped into a wig supplier yesterday and tried some on to see what I would look like. I was amazed- they looked so real and I looked so glamorous!

Love the idea of your themed wedding and wigs fit right into a pirate theme. Have a fantastic day and feel loved by your family and friends.

Lilac

Hi Lilac

I have yet to go to a wig place. But tomorrow I will call them because my hair is falling out in huge amounts. Thought I was prepared for it but nothing prepares you for the feeling of loss and lack of control. I was really really upset last night. It’s really hard to deal with as I have had long hair for many years. I did want a new look after our wedding however, but didn’t want it quite this soon!!! Still not quite sure how I am going to deal with losing my hair - I know I will deal with it I’m just not sure how yet. Got to wash it later - dreading it. Never dreaded having a shower before!!

Anyway good luck with your chemo - let us know how it goes. I was terrified on the morning of my first one but the nurses were just amazing as too was my fiance. Actually having the drugs is no worries. Just a bag of fluid connected and then the drugs injected into my picc. Was having such a good chat to the nurse that I didn’t even realise the treatment was over!! Have you had to have a picc line put in?

I don’t know how long you have been part of this community but I am finding it priceless. Everytime I need some comfort then I log on. Nothing like talking to those who have or are going through the same.

Take it easy
xx

hi bird,

hope your shower wasnt too traumatic! I found the inbetween stages, waiting for hair to maybe come out, much harder than when i actually thought, s*d this and shaved it off. Thats when i felt i had control again. Also, i tried to think of my hair coming out as showing that i was taking control, as it didnt come out because of what the cancer was doing to it, it came out because of what i was doing to the cancer. That helped a bit.

Your wedding theme sounds fab!

Vickie