I’m 30, and very new to ths site so would love to chat to some people in the same boat as me. I have just had two rounds of surgery to remove tumor and then aux node clearance. I’m due to start chemo in about 3 weeks but just cannot decide if I should try the cold cap or not, if heard a few stories about how much the cap its self hurts and is uncomfortable - should I just get my head around losing hair and enjoy the extra time I’ll have in the mornings?! Would using the cap just add to my stress and worry - considering its not 100% effective?
Hi Carly
I’m not new to this and had my chemotherapy a few years ago but just thought I’d let you know my experience in case it helps. I was determined to give it a try. It is rather uncomfortable and you can take pain killers such as paracetamol half an hour beforehand. You do however get used to it. I was always pampered and wrapped up in a warm heated blanket etc which helped. After the first 15 mins or so of feeling a bit unsure and not feeling great, I got used to it and thereafter used it for the 2nd and 3rd chemo sessions. After that my hair had come out loads anyway and I found it too uncomfortable due to the coldness so I stopped using it and lost most of my hair. The cold cap can work for some people but it didn’t work for me. It does take longer as you have to keep it on for a while before and a while after the treatment finishes from what I remember - think it’s half an hour either side.
xxx
I’d say give it a go, if you decide not to carry on with it you can stop. I’m on weekly taxol, I’m due for my third one tomorrow and I’m using the Paxman system. It isn’t comfortable, but I wouldn’t say it’s painful and you do get used to it. You have to wear it for half an hour before chemo, during and for Taxol, an hour afterwards. Which is a long time. I lost my hair the first time I had chemo and I coped with it as you have to but I’m hoping to avoid it this time. The cold cap works better with some chemos than others. In my case, it might be too early to say whether it’s working or not but so far so good.
Hi Carly - kind of similar to last post, i’ve persisted with it because losing my hair is such a big deal to me. i’ve used it for 3 sessions and very disappointed i’ve lost loads. Its uncomfortable but not unbearable for me. Lots of women on here will tell you its worked for them so ultimately it’ll come down to you and how much of a deal it is for you. Our hospital uses the “in the freezer version” which i think is more basic than the other one, kept at a constant temp etc - not sure if it makes a difference to effectiveness.
I’m 41 and at the same stage as you, i’ve had snb, node clearance and wle and then went on to have mastectomy 2 weeks ago…am due to have chemo in about 4 weeks.
I’m debating having the cold cap…I will talk to the experts before I decide…but did buy a hat today when out shopping with my mum…I put all my hair up inside and i must admit it didn’t look as bad as I thought it would.
I do worry about losing my hair though…but have to think that at least it won’t be forever and I would rather lose my hair and be here.
Good luck whatever you decide
Chris xx
I have just completed 3 x FEC and 3 X TAX using the cold cap and still have a good covering of hair - don’t need to wear a hat. I lost very little with the FEC, but started shedding more with Tax. I had one bad cycle when they messed the timing up on Tax and I lost loads, but otherwise I think I would have finished chemo with 75% of my hair. Even so I have no bald spots - it just looks a lot thinner. I had it cut very short before starting which helps the cap make good contact with the scalp.
It isn’t very nice wearing the cap - and I had a wobble on cycle 4, but got over it and glad I did. I was dreading having to wear a wig, and was very pleased to avoid it.
Give it a try - the first 10 minutes are the worst, after that you get used to it.
Oh do try the cold cap. But having said that, for me, the cap didn’t fit well on top of head, hence large bald patch now hidden with wig, but still kept most of it elsewhere. I still think it has helped me psychologically though, to keep some hair. I just hope that the patch will have filled in by the time I have to go back to work. The cap I used was Paxman, but have read on here that other people privately hired theirs called the Penguin (I think) which has a strap that goes up over the head so keeping it more firmly in contact with the scalp. Might be worth checking out.
I didn’t find it too uncomfortable and it didn’t give me a headache, but it can for some people. I had to have it on 30 mins before chemo and 2 hours afterward. Wear a coat - even in summer, take a book or dvd player, ipod and time goes fairly quickly.
I’ve just clicked on your profile and see you’re from Peterborough same as me! In that case you’ll definitely have a bald patch! pm me if you want.
I’m not sure what type mine was, but it had a velcro strap under the chin. It can’t have been Paxman though because you only need it on for 45 minutes after treatment. So by the time they have finished flushing etc, you’re virtually done.
I’m at a similar stage too. Had wle exactly a month ago. Starting chemo 11th May. Think I’ve decided not to go for cold cap on the basis that I don’t want to loose hair gradually/semi. Also, having read the Paxman leaflet I was given, there’s loads of info about looking after your hair: not washing/brushing it much, wearing a hair net in bed etc. My shortish hair would look mad if i didn’t wash and brush it and it all sounds a bit of a palaver, given that it might not work fully anyway. Having said that, maybe my hair isn’t as important to me as it clearly is for some. Or maybe I’ll feel much less ‘gung ho’ in a few weeks time!
If you’re not sure, give it a try and you haven’t lost anything.
Hi I have used the cold cap for 3 cycles and my hair has thinned quite a bit but not enough for me to wear my wig.
I do shed hairs but only a few at a time and all over so no bald patches.
As for not washing my hair mmmmm this is where I failed my mission! I have washed my hair everyday with my normal shampoo and conditionner.
I have used my hairdryer (on a lower setting). I have been know to straighten it use wax and hairspray.
Oh god it feels like I have just confessed to a mortal sin.
So I think you have to do what is right for you. I have felt better with clean hair for the last 10 weeks than I would have with dirty messy hair. Good luck to you all who are beginning this journey and I hope it works for you. x
I’ve used it for my first two chemo sessions, and although there’s quite a few hairs come out, I’ve still got a good head of hair left, and the hair loss isn’t noticeable. I’ve been resigned all along to it not working, but it really has given me a boost having it work even this long. Basically, I wanted to keep it for my 40th this week!
I’ve washed it as little as I can get away with, using just mild shampoos, and cut it short before I started to make it easier to look after. I find the cold cap is horrible, but by no means unbearable, for the first 15 minutes, but the greatest inconvenience is probably just having to stay in the hospital longer.
Good luck with the chemo. I’ve found it quite a relief after worrying so much about it beforehand, and am amazed at how much I can still do. It really is good to start ticking them off.
Thank you everyone for your comments - I’ve got an appointment with my hairdresser this afternoon, and will have a new short cut (scary) and given all the comments, I will give the cap a go - and if it doesn’t work, or I really hate it I just stop! I’ve also just bought myself a wig very similar to my current hair style and love it already! Think I might go to the local fancy dress shop and buy a wig in every colour possible - that will confuse people! x
I am much the same as you, give it a go and if it doesn’t work then will just get on with that too. I had my first chemo yesterday and the cold cap didn’t hurt at all. In fact i kept asking them to check it was working and was surprised at the ice on my hair afterwards. It annoyed me a bit in that it was like wearing a bike helmet and was a bit bulky.But it was just a minor irritation, nothing bad. I took a few paracetamol before i went and also a lorazapam ( think thats what its called) that my lovely oncolgist prescibed for me to reduce anxiety before my sessions, not sure if that helped me, but suspect it did quite a bit! Can’'t tell you if its worked yet, i just know it didn’t give me the headache i had anticipated. I did feel cold though, glad i wore fluffy socks and took a spare cardy, and that they gave me a blanket!
Carly you will find lots of threads on here re this - mixed feelings. I myself started it - 3 sessions during Epi- It does work. However it made me feel very unwell cause for Epi and some other chemo it is on for a very long time - for Tax and some others it is much less of a time in the chiller.
when I was physically sick from the cold I gave up. will depend on what chemo you have and how many sessions of chemo you are going to get - I had 8 and after I was sick I couldn’t face the prospect of 5 more - if it had been only one more I probably would have done it.
Hi, had first fec on the 8th April used paxman cc and followed instructions to the letter, most of my hair fell out day 20 after washing it first time in 10 days. Had no.3 hair crop and will try cc again next time. According to paxman it can help with regrowth. Still trying to get used to the new me in the mirror! Xxxtina
I start on Fec x 3 then Taxotere x 3 on Thursday and was not even going to consider the cold cap, this has made me reconsider/wobble a litte. I did go out last week and have my brown bob changed to a peroxide blonde crop I had always wondered what I would look like. After just 2 days decided I didn’t mind the cut but the colour was really naff I looked a b***er. I currently have a lovely ruby reddish shade which I quite like and plan to try the purply shade and perhaps finally almost black before the drop.
Incidentally I do plan to get my wig (tomorrow) much more similar to my old hair, just thought I would have a little fun before I lost it.
We have to take our pleasure where we find it and I must say playing with my hair style/colour is quite liberating, i am most definatley not a headscarf girl, did the workshop but I really think they just scream Cancer. Perhaps suitable for around the house but not outside for me.
molsid - I’ve been trying to work out what ‘b***er’ is! Did you accidentally press the b key instead of h?! Either that or the chemo’s got to my brain!
I agree that scarves scream Cancer and I would be so self-conscious going out with one on, although I have about 50% of my hair from using the coldcap. But that’s me and I admire women who wear them.
I am on day 6 of 2nd Fec, did use the paxman cc again although this time it was much colder as there was so much less hair, the hair is still coming out, about 30% patchy left. I will use the cc again though. I emailed paxman with my experience and this was their reply:
We are sorry to hear that you have
experienced a degree of hair loss following your first chemotherapy
treatment. As you may be aware scalp cooling success rates do vary from
patient to patient and are dependent upon a number of factors such as
dosage of drugs, overall health and liver function and also correct
application of the scalp cooling cap.
The anecdotal evidence we receive from chemotherapy centres is that very
good results are achieved with FEC (even with high does FEC ranging from
50% - 90% hair preservation).
If you do feel you are able we would certainly encourage you to continue
with the scalp cooling treatment. We have had instances when patients
have had total hair loss following a first treatment (when no scalp
cooling was available), but have persevered and by the end of their
chemotherapy treatments their hair has started to grow back, and other
cases where patients hair has grown 2 or more inches by the end of their
scalp cooling treatment!
The most imperative factor affecting the success of scalp cooling is the
correct fitting of the cap - the cap should feel to be in contact with
the scalp across all of the head and should feel quite snug, but not
over-tight. Should you feel that further guidance is required in this
matter please do not hesitate to contact us.
In the meantime I wear buffs and hats, still sometimes do a double take when I see myself in the mirror and the reflection is so very different now. Of course, now everyone more or less knows when looking at me, especially at school, which made me very uncomfortable at first but I am getting used to it! xxxTina