Cold Cap - does it work?

I was only dx last Friday and having my op this Monday 6th Feb but been told will then be having chemo followed by radiotherapy - the nurse mentioned cold cap, has anyone tried this and does it work or should I just get used to the idea of losing my hair? I’m petrified of the journey which lies ahead as I’m sure a lot of you ladies are / have been! Trying to remain positive but it’s soooo hard!

Hi there,
For me the cold cap worked, I haven’t lost all my hair at all through all this. I did have exceptionally thick hair and it has thinned a lot but I could still have it cut and wear shoulder length. You just had to style over any bit that was thinning. It was only when swimming that you noticed little bits that had come out.
It is a bit of a labour of love though, It really is cold and it may depend on your tolerance to it. The first 10 minutes are bad but I tried to distract myself during the chemo and cold cap, don’t just sit there and do nothing as it will be harder.
For me it was worth doing, I did have a blip at fec4 but then it ended up me doing no more fec, so i did indeed keep my hair. Its scarey it growong back as I have always been a natural blonde but its growing back dark brown :o)
Hope this helps a little, good luck with your op on Monday, just take one step at a time and rest and be kind to yourself.

Clare xxx

Hi Claire, many thanks for your lovely message - it really does give me hope! I know deep down its one step at a time but my mind is in over-drive at the minute and I can’t help but think ahead! When the time comes I will definately give it a try. Not really worried about the op its the waiting for the results I can’t cope with! Many thanks once again and take care. Jo.

Hello Knoxy

I suggest you have a look at the thread Cold Cap - I didn’t lose my hair here:
share.breastcancercare.org.uk/forum/viewtopic.php?f=25&t=34161

There’s lots of posts from people who have used cold cap. It doesn’t work for everyone and if you colour your hair you have to remember that you won’t be able to do that during chemo. It is horrible, especially the first time, and it does mean you have to be there for longer as you have it on for half an hour before and 2 hours after treatment (as long as they’ve remembered to switch it on before you get there, but that’s another story). However I posted this picture of the back of my hair a few days ago. I’ve had 4 chemo so far and have 5 to go but you can see it is helping me; I’ve lost about 40/50% of my hair but it’s all come from underneath.

I think it’s definitely worth trying even if you don’t stick with it. Good luck

hi Knoxy

i’ve had 5 chemos, and the cold cap worked for me too, definately have a look at the other thread, theres lots of tips on there.

PS, my picture, me in my sexy cold cap :slight_smile:

Gill x

Hi Knoxy,

I didn’t use the cold cap, from the first I wasn’t bothered about losing my hair - worked on the basis it would grow back and it has.

I had my treatment in Harley Street and at the clinic there were quite a few ladies using the cold cap and they looked in agony, some persisted and some didn’t.

I was also told by the nurses after I had decided not to bother with it that you are less likely to get secondaries in the future if you don’t have it because the chemo gets round your whole system. Now I have no idea if this is true or not and it didn’t influence my decision in the slightest. My onc also told me this, but she said they offer it because they know hair loss is a big thing for some women.

I finished my chemo in March last year and by May had a full covering and have kept it in a short style. I have had it cut properly 3 times now, so it would have been quite long if I had left it to grow.

Your decision will depend on how happy you are to go without, I didn’t bother with a wig, I went without most of the time and wore a hat out as it was winter.

Just wanted to say something about SamLee’s comments on secondaries. I grilled my Onc on this as survival is my top priority - I already had a very expensive wig reserved before chemo started. What she said was that the scalp cooling doesn’t stop the chemo reaching the hair follicles, it slows it down. Mets in the scalp are very rare anyway in BC. All the Oncs at my hospital encourage use of cold cap for BC for those who want to use it and it is very much a research led dept.

During my 1st chemo I looked across at another woman who was using cc for the 1st time too. I thought she looks like I feel, not in agony but definitely miserable. I met her again during my last chemo and she like me has been perfectly ok since that first one. I’ve found that having a little gauze just under the front on my forehead where there’s no hair but lots of receptors has relieved most of the discomfort I had the 1st time.

Hi All and thank you all for your comments (and piccies)! I think I will definately give it a try when my time comes, op on Monday and then the agonising 10 days wait for results but been told I will defo be having chemo and radiotherapy - my head all over the place but I WILL beat this damn thing! Thanks again ladies and hugs to you all. X

I just wanted to add that I didn’t use the old cap as wasn’t fussed about losing my hair and don’t like being cold… But with reference to the secondaries comment by the nurse… You are not more likely to get secondaries if you use the cold cap, but if you were going to get mets to the skull (not brain mets) then it may not prevent that but as filosophie has said skull mets are incredibly rare following BC… I actually have only known one person with them… She didn’t have chemo for her primary so didn’t use the cold cap… Although. Think there are a couple of folk with them on here but not sure if they used the old cap or not.

Lulu

Unfortunately, it’s one of those things that you won’t know until you try. Like so many aspects of our treatments, we all have different reactions to cold cap and different success rates. I didn’t lose all my hair when I used it (nearly 9 years ago for 4 x FEC then 4 x Tax), but I lost an awful lot of it and used headscarves to cover up the bald patches. It meant a much longer visit to the chemo suite and yes, I found it uncomfortable, but not painful.

I also asked about increased risk of recurrence or secondaries before making my decision and was told at the time that there was an extremely small increase in the risk of scalp involvement, but that this is so rare anyway, it makes virtually no difference. There was no mention of increased risk of skull mets or any other secondaries.

Good luck with your chemo, whatever you decide. Take care, Angelfalls xx

It’s so difficult isn’t it. My BCN suggested I try the cold cap and said as I had thick wiry hair I was less likely to lose my hair. She also said to keep it slightly longer as I’d be able to do a bit of combing over if it thinned. I gave it a try and almost exactly 3 weeks after my first FEC I had a really traumatic episode in the shower with my hair coming out in clumps and getting knotted. I really thought I’d come out completely bald. However, my great pal come hairdresser came to the rescue with a Pixie cut which helped sort out my grey root problem too! Since then I’ve continued with the cold caps and had minimal loss. It’s also much less stressful to have short hair falling out than longer hair. My guess is that because my hair was so thick my scalp didn’t cool enough. Now, although much less pleasant as I’ve less hair, it seems to be doing the trick. It is like brain freeze without the pleasure of the ice cream though lol. I’ve also been told that the taxotere is less likely to result in hair loss so I’m hoping I can stop the caps now, that way I can plug in my earphones during treatment and actually hear people when they talk to me. Onwards and upwards xxx

Scottie

I’m on 6x tax and carbo… Carbo doesn’t cause hairloss but Im still almost bald… The tax has caused me lose all, my under arm, nose and leg hairs, most of my LG and head… Probably about 90%… Sorry to be the bearer of bad news.

Lxxx

Hi Ladies, I’ve just discovered this forum and wish I’d found it earlier! I had my first chemo on 15th March and used the cold cap so today is day 11 and I am currently on plug hole watch! I’m on FEC100 and My BCN had said that the cold cap results were better on FEC75. My question is to all those ladies where it’s worked, were any of you on FEC100?

Hi MurrayMint
I’ve had two doses of FEC 100 now (I’m on day 10 of dose 2) and used the cold cap both times. I started noticing a bit of hairloss a couple of days before my second dose, then it got heavier…say about a hairbrush full every day since. I would estimate I’ve lost about 1/4 - 1/3 of my hair. My normal parting has developed into a very thin patch - like you would notice. lol And the area above my ears has also thinned a lot so that if I lift the hair above you can see my scalp quite clearly underneath.
My hair is quite thick, but very fine and naturally straight. It was halfway down my back, but I had it cut into a chin-length bob before starting treatment. This has made it much more managable. I was all set to shave it yesterday, as the shedding is such a pain, but my husband pointed out that I still look *almost* normal and suggested I leave it until my next chemo. I don’t know if I’ll get another big shed around day 19 of this cycle. If I wear a hat now I still look totally normal…not sure I’d do the grocery shopping with my balding spot on show, though. lol
For comparison, I still have all my arm, nose, eyebrow, eyelash hair, most of my leg hair and about half my LG and underarm hair. So maybe I’ve just got strong follicles.
I think where I’ve thinned is pretty common for cold cap users.
Hope yours sticks around! And hope you’re not suffering with too many SEs. :slight_smile:
Carrie x

Hi Carrie

Thanks for your response, that’s really helpful. I’ve been out today and bought a couple of hats in readiness for when I need to hide the bald patches! Good luck with your treatment.

xx

Hiya

I’m on FEC100 and had first dose on 19th March so am on day 14 and still have all my hair. Am reading that this may change after the 2nd dose or maybe not!
Keep me posted how you do with yours
xx

I,m on day 20 of 1st Fec and used the cold cap but my hair is coming out really quickly, i washed it today and blocked the plug hole, my Lg fell off a week ago and my eyebrows are still intact for now. :frowning:

Hi i am on day 20 of first Fec after using cold cap. I have hair falling out at nape of neck and around ears but none from top of head or fringe so going to persist with CC for now. I have had hair cropped so that I can just let it dry naturally and follow care instructions. I think its worth a try but need to be realistic and have haircovers in place. The oncologist told me it is only succesful for 25 % of people

good luck

love pops x

Hi all

I’m on day 3 of No. 2 of EC. A little more hair in my comb than normal, but I’m trying not to touch my head. Haven’t noticed any on my pillow yet. Here’s hoping!!

Hugs and xxxx
Di

Hi All

Thanks for your feedback, it’s good to know others on FEC100 are having some success with CC. I’m now on day 3 of my 2nd FEC100 and hair seems OK at the moment. I’m trying not to touch it and only wash it twice a week but feel like such a minger! I’m just hoping when I wash it tomorrow that there isn’t a big shed. 3/4 of LG dropped out a week ago about half a dozen eyelashes have deserted me but that seems to be about it for the moment.

The CC was fine 2nd time around, it was good to know what to expect.

Good luck to everyone trying CC.

xx