Hi I was wondering what you ladies thought about the cold cap? I have heard that its best to stay away from it as it stops the chemo from getting to your brain and it can mean that cancer could come back in your brain in the future. is this true or false?
thanks
kelly xx
Hi Kelly,
The cold cap works by cooling your scalp, which reduces the amount of chemo that is able to reach you hair follicles by reducing the blood flow. There is a “theoretical risk” that if you already had cancer in the bones of your skull, it might not be zapped by the chemo as a result. I don’t think there is any risk to your brain either now or long term. If it helps, I know that some of the secondaries ladies have used cold caps successfully during chemo - and oncolgoists wouldn’t let them if they were worried about not zapping any skull mets. My understanding is that skull mets are very rare anyway.
If you have been offered this, it is because your team think it is safe for you.
Thanks RevCat. I have yet to start my chemo but i thought if there was any risk at all i would not use the cold cap.
I will speak to the oncologist and say what she says.
I have heard that they are also very uncomfortable to use and very time consuming but for woman who’s hair means everything to them I can understand but I WAS one of those woman, I have long blond hair and have always been known for my hair but I would rather be healthy and bald! 
x
Hi I have used the cold cap twice and although my hair is thinning it still looks like my hair ( although I did have a short cut before this all started in case it all fell out). It only hurts for about 15 mins at beginning and feels like a tight band around your head. Also at the same time my sinuses and teeth hurt. However after the pain stopped I felt nothing uncomfortable. The second time I took 2 paracetamols before starting and that definitely felt better. You have to start it 30 mins before and keep it on for 1 hour after chemo finishes but it doesnt feel too long.
I felt it was worth giving it a try but was quite expecting to give up quickly but was surprised that it was easier than I thought.
Obviously everyone is different in what they can cope with and what is important to them
Hope this helps a bit.
hi smilesnic
yes that does help thanks. its good to know.
i was willing to give it a try then i heard it might be a bad thing but its nice to speak to ladies who have used it and people who know more about it, xx
My hair didn,t survive started falling out after about 2 weeks even though it was my biggest fear i felt better after it was shaved cos my head was sooo sore and once it was gone i stopped worrying about it.
Hi there
Sadly the cold cap didnt work for me, lost hair just before my 2nd hit of FEC, but glad I tried it and it really wasnt as bad as I feared.
Def worth a try…
Madge x
Hello
I used the cold cap when I had FEC 8 years ago. Not very pleasant to use but I did not lose any hair apart from on top where the cap didn’t fit closely and it only thinned.
I would definately use it again but I would add that I did keep my hair cut quite short.
Hazel
Hi
I have used the cold cap for the first chemo, 2nd one on the 18th April. So far not lost any hair at all so keeping fingers crossed. I have my hair in a short bob. My hair is very important to me, I visit the hairdressers every week. I will continue with it till or if any hair starts to fall out and if that happens I may think of stopping it. The nurse puts my line in to my vein first as the cold makes it a little more difficult, then cold cap on for half an hour and it is changed every half an hour with an extra half hour at the end. There is another cold cap called the Paxman which is plugged in to a unit to keep it cold but I believe one is as good as the other.
Good Luck
Mary P
I used the cold cap for my first chemo but hair started to fall out 17 days afterwards. Didn’t see the point in using it after that as it meant staying in the hospital for nearly 3 hours extra on top of the time it took to do the chemo!! OH shaved my hair off just after 2nd Chemo. I finished 8th Chemo at the end of November 2011 - shaved my head for the last time on January 1st 2012 and I have a good (but short) covering of hair now.
I used the cold cap. I would say don’t think you won’t lose any hair. I lost quite a lot and I wasn’t sure during that period if it would work completely …however the loss was on the top of my head, which meant I could wear a cap or bandana and still have hair showing (although it was in a shortish bob). There are some wonderful caps and hats in stores like Accessorise that are very stylish (in fact my oncologist asked me where I got the hats from as they always looked good…and I still wear some now!). My objective was more to keep my condition private and I think I managed to do this very well. My neighbours, work colleagues and friends ( I don’ t see that often
) still have no idea I have had cancer, let alone chemo and reconstruction… cold capping was uncomfortable, but a means to an end. Also the plus side is that still with some hair the growth back is quicker…although I did still have to endure the chemo crop look for a few months!
Hope this helps with your decision.
Good luck
THANK YOU so much for your replies ladies.
all your stories are good to know.
wishing you all the very best xx
Hi Babychops
Ive just had Fec session 2 using the cold cap - I lost quite a lot of strands of hair in the last week and OH had to cut a large knot out of the back of my hair probably due to me using dry shampoo and hairspray together so don’t try that! But I have hairdresser today to cut a bit shorter. I had already had two cuts from my hair about an inch of so at a time to get ready for the treatment and it has helped - I am now ready to go the shortest I have ever been in order to keep what I have xx
Try the cap but do get a haircut first - mine was long blonde but when it starts shedding its very upsetting xx
Hi all
Just about to start my first FEC session this week and still in two minds about the cold cap. Anyone got any updates on how they’re getting on?
Thanks and hope you’re all doing ok.
Sara B
H
I have had 2 Fec and am using the Paxman scalp cooling.
As others have already said it isnt very nice for first 15 minutes but is ok after that.
I have not lost much hair
I had my hair cur short and wash it every other day which is more often than advised
I wash in a shampoo and conditioner which is a natural product ( I like Liz Earle personally) and use morrocan oil after washing my hair
I like being in control of who i tell about my treatment
so worth discomfort
Good luck everyone
Poppy x
Hi Kelly
I will have my last chemo on Friday and have used the cold cap all the way through (3xepirubicin, 2x docetaxal, 3xCMF, bit unusual but the C and F in CMF + epirubicin = FEC). I have kept enough of my hair that people don’t notice. Even my hairdresser says that if she didn’t know my hair really well she wouldn’t know.
I’m aware that I have lost a lot of hair and the evidence is that I have kept quite a lot of it in a bag! No I’m not weird but wanted to quantify the loss, so mornings and evenings I would comb it out and pop it in my bag. I was lucky and most of the hair came out from underneath and I didn’t end up with bald patches. I think if you try it, you should be aware that you do lose a lot of hair after the first couple of cycles (in fact my greatest loss was after 1st and 3rd) and it’s such a dramatic experience that we tend to over estimate how much we’re losing. Again I was lucky in that I had regular appts with my hairdresser in order to shave my head prior to cutting my wig to my style as soon as I needed it. But she never felt I needed it. I suggest you line up people to give you an honest opinion about whether your hair loss is noticeable.
I also think you have to examine your motives. My hair is my most recognisable feature and I’m lucky enough to have kept the colour with a little grey well into my fifties. But the reason I wanted to keep it was not so much vanity but trying to hang on to some normality. A very wise friend said that she had worn a very good wig all the way through her chemo so that she didn’t have to cope with the reactions of others to her BC, especially at work. For that reason I too reserved a very expensive wig (must remember to cancel it!). Cancer treatment is at least a year of hard graft and you really don’t need the uninvited if well meant responses of others. Have you been pregnant? If so you may remember how your body and experience suddenly becomes public property. Being obviously a cancer patient is a bit like that without the joyful outcome that helps you put up with it.
So apologies for the essay and I’ll end with a few tips:
Remember you can’t colour your hair or blow dry it on high heat for the whole period of treatment, so if you rely on these for your look you might be better off with a good wig.
Do try it but be prepared to feel very uncomfortable for the first 15 mins the first time and take a couple of paracetamol beforehand. I hardly notice it now.
Do make sure you get the right sized cap so that it fits tightly over your head.
Your treatment will take longer so take lots to do/read or a friend to chat to, and make sure your unit knows you require it before you arrive. After a couple of hiccups I now ring the unit first thing to ensure it’s going to be ready.
Have lots more I could say but won’t go on. Good luck whatever you decide.
I just had my last cold cap session yesterday. It’s definitely worked very well for me. But I did have VERY thick hair to start with. I did it because I also wanted to appear as normal as possible which I am sure has made a difference.
My experience was that just before no 2 I lost quite a lot of hair. After number 2 there was quite a lot of thinning and I always had hairs on my clothes and I thought it wasn’t working, but that stopped a lot and I haven’t lost much more at all. I am lucky that I had no clumps fall out apart from at the base of my neck where the cap doesn’t come into such good contact, but that doesn’t notice. My hair was already fairly short.
Apparently the reason I lost quite a lot in the first session is exactly because my hair was thick and the cap can’t work so well. I certainly noticed it was more uncomfortable for the following sessions.
The worse bit is the first 10-15 mins, but it is tolerable for the reset of the time although I still found it very unpleasant. But I made a decision to give it a try and you can always stop it.
The condition of my hair has suffered even though I haven’t washed it much as much and haven’t blow dried it at all.
So I guess my message is give it a go! Oh and leave the conditioner on for 24 hours after each treatment when the follicles are most vulnerable.
Good luck!
Dawn
Hi
I used the coldcap throughout my chemo (3xFEC and 3xTax) and kept a good 80+% of my hair.
In preparation, I had it cut in a chin-length bob, so it got less tangled. During treatment, I only washed it every 4-5 days (it seemed to do really well with that). I didn’t use a brush on it, just bought a wide-toothed comb. I avoided combing it too often too (e.g. on a day when I wasn’t going anywhere). I did lose one clump of hair when I unwrapped it from a towel after one wash - after that I was far more careful and just draped a towel over my hair after washing it.
One thing to do though is to wear a thick jumper or fleece during chemo sessions. I didn’t the first time and during my post-drug chill the nurses were bringing me blankets to warm me up. It is true that you can lose alot of heat through your head.
Hi babychops, I’m another who successfully used the cold cap, My chemo finished end of Feb, yes my hair thinned but, it was really only myself who could tell, by not loosing your hair gives you some control over who you tell about your cancer, so many people had no idea until i told them, just to add since finishing chemo, my eyebrows and lashes have continued to fall out, I wish i’d know that could happen. It is very cold and a bit of a shock to begin with when you put it on, my unit would give me a quilt which kept me warm, I’d give it a go, it doesn’t work for everyone, you just need to be aware of that.
Good luck Gill