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Cold cap - I didn't lose my hair
Hi ladies,
I just wanted to share with you something I picked up from someones post on the McMillan forum about cold cap that I've tried and it's worked for me. We all know there are no guarantees with the cold cap working but if this even works for one other person then it's worthwhile me sharing.
Basically what they said, and I followed, was to use a shampoo called Natur Vital (for alopecia which makes sense). Wash your hair the night before chemo and only wash your hair twice a week. On top of this, use Natur Vital's tonic every second night and softly massage into the scalp. Use a wide toothed comb, no hairdryers/straightners etc and really try and not touch your hair any more than is necessary. That's it - no weird science.
I did lose a lot of hair the night before my second FEC especailly round my crown and thought it was all going to fall out so had it cut into a short hairstyle so there were no more clumps of hair falling out. My hairdresser said when he cut it there was no more hair falling out and it was maybe just breaking - since then (5 weeks ago) I've not lost anymore hair.
I'm regretting having my hair cut short but it was the right thing for me to do at the time and it'll grow back quickly enough. Like I say, I'm not guaranteeing this will work for everyone but I feel so lucky to still have hair (all be it short now) and if it can help anyone else then it's worthwhile posting for others to read.
Caroline x
Can I add to this .. even if you lose hair in places you can still continue with the cold cap by using a paper surgeons cap, then the cold cap .. so its not so harsh on the skull. I did this for two treatments on the advice of the manufacturers of the cold cap. You are in control and must tell the nursing staff.
Thanks Angela, I didn't know that!
I should have said that I kept going with the cold cap although it feels colder with thinner hair but I take paracetamol on my way to hospital. I'll be asking for paper surgeons cap next time I go.
Hi there I started my chemo 12th oct I am wearing the cold cap it is a bit painful at first but you get used to it. I wake up every morning to make sure my hair is still there but prob to early to tell. I have realy thick long brown hair but I am going to have quite a few inches off this week just to try to prepare. My sons girlfriend has her own hairdressing shop but she comes to mine to do my hair so thats handy my own personal dresser. wish you all the best with your treatment take care xxxxxx
hi
i've got my appointment with oncologist on thursday and wanted to discuss using the cold cap, so this is really encouraging to read
how long were at the hospital for bacause my BCN said you are there longer if you use it?
Gill
I used the cold cap for my first 2 sessions but lost loads of hair just before my second session. It hasnt gone completey but i do need to wear a full headscarf now, so i dont frighten the kids !! I was devastated that i lost my hair and was so convinced that it would just thin. Having said that, i am not using the cold cap now and havent lost anymore hair since that first hit and am so glad that i gave it a go...its so worth it and my top-tip is to take a paracetamol on the way to chemo, helps with any brain-freeze.
It didnt work for me but i have seen ladies still with fab hair, 4 sessions in. Think mine was just in bad condition in first place, maybe !!
It does add a good 90 minutes on to your session ...30 mins before they start to drip the chemo in, then 40 minutes fater plus 10 mins de-frost.
Give it a go....and GOOD LUCK XX
Morning everyone.
When I found out I had BC, the thing which upset me most was the thought of losing my hair - silly I know. I spent hours on the internet looking for ways to save it and there's probably loads of ladies out there doing the same so that was my reason for starting this thread.
I started my chemo 18/08/11 and it was the night before my second that I lost a lot of my hair. I was in tears and thought it was all going to come out so decided to get it cut into a short pixie style and start wearing my wig (which is now my best friend) whenever I was going out anywhere. I was really lucky and got more or less an exact match for my own hair so no-one believes me when I tell them it's a wig. And underneath the wig my hair is growing as normal so hopefully it won't take too long to get some length back.
I agree with madgse32 - it's sore for the first 10 mins so take paracetamol, clothess in layer as you can get a bit cold and a good book. Timings depend on which drugs you're getting, I was 30 mins before chemo and then 2 hours after (with FEC) now I'm on Taxotere it's 30 mins before and 45 mins after.
Gill13 definitely give it a go - at the end of the day you have nothing to lose by trying and I hope it works for you too - good luck!
Mrs Doubt fingers crossed for you that it works for you too. I was the same, checking the pillow every morning and on passing a mirror to make sure it was still there lol - the things we do!
Caroline xx
Hi Girls
I used the cold cap for the first time on the 4th Oct and have lost nothing so far.
The cap I used was called the Paxman and seems to get a good write up.
AND it didn't hurt at all although I did take 2 nurofen before hand.
This cap is new to my hospital and it may be that other hospitals are using the old cold cap which I understand isn't very successful (apparantly works for 3 in 10).
The only other patient to use the cap is a young girl who is on 3 different hair loss drugs and she still has a full head of long hair after 5 treatments!
I phoned up Paxman and they advised me to use the naked range of shampoo from Boots.
Sarah xx
Hi ladies, I had my 1st of 8 sessions of FEC on the 5th October, I used the Paxman cold cap, found the first 20 mins horrendous but fine after that. I am starting to lose some hairs now but my hair is quite thin anyway and not in the best condition. If I continue to keep losing it I will rethink the cold cap.
One thing I wanted to know is if I manage to keep some of my hair, will the new hair that comes back be different to the hair that is left. I have heard so many ladies say that their hair was completely different when it grew back and dont want to end up with different colours/textures etc etc. Does anyone have any thoughts on this?
what is the cold cap like, apart from being cold
i'm imagining it to be like a swimming hat or a streaking cap? is that right or am i way off?
also i was wondering whether the alopecia shampoo and conditioner recommended was available on prescription?
there just seems so much "stuff" being recommended to help get you through chemo, it could cost a fortune
thanks Gill x
I had 8 sessions and still have lots and lots of hair albeit with really bad roots (lots of grey hairs at the age of 33 - but right at the front. Annoying!).
Flutterby - I got your FB message - thanks - will reply! But in answer to the other hair growing back differently, I'm a bit worried about that!! But then decided that I dye it anyway, so will deal with it. Will let you know when mine starts growing. Nothing so far...
Gill13 - it's a rubber cap with coils of gel through it which cool down. It's then kept tightly in place by what looks like a jockey's helmet. It's not a great fashion statement!!
I never found it that bad - also took painkillers on the way to the hospital and drank a big cup of hot chocolate when it was put on. My hospital also gave me an electric blanket which was nice and cosy! But a hot water bottle would be great if you felt chilly and they don't have the blankets.
x
Thank god for hair dye, where would we be without it? My dads partner lost all of her hair recently with chemo and when it grew back it was grey, curly and really thick. She's in her 50's so was probably grey under all the dye anyway and now she is dying her hair blonde again it's never looked so good!
The cold cap definitely isn't good for a fashionable look but hey it's worth it for a couple of hours and luckily I don't have any handsome doctors to try and impress haha!
The alopecia shampoo I bought in boots, think it was about £10 and I just use normal conditioner, the tonic was more expensive - about £20. If Paxman are recommending the Naked range then that might be just as good? I just wanted to take every possible precaution to try and hold onto my hair.
Caroline x
Hi ladies
Who do I need to speak to regarding use of cold cap, and can it wait untill I have my pre chemo chat with chemo nurse next Thursday or do I need to speak to someone ASAP as I'm starting my first fec chemo next Friday.
Tiny1
Hi tiny1,
Speaking to your chemo nurse on Thursday should be fine. They should have the scalp cooling machines in the department and it's only a case of them putting the machines on to cool before your treatment. If you're anxious at all speak to your breast care nurse. Good luck and let us know how you get on xx
Unless they only have a limited number of machines and you want to bagsy one!!
Hi,
I am due my 2nd round of chemo on Monday 24th October. I used the cold cap on my first session and i am now nervously checking my satin pillow case every morning, especially now as i keep reading ladies have started to lose it 3 days before their 2nd session?!
I have started to lose down below and a little embarassed in front of boyfriend of 15 months!
This waiting game is awful. I do have a wig waiting but hoping not to use it. Hoping to get away with not telling anyone apart from nearset and dearest but scared about losing eyebrows and eyelashes as i think this will give the game away.
Does anone have any ideas on timescales?
Hi ladies
Well I won't b using the cold cap as I've just been told my hospital don't offer that service. So it looks like I'm gonna no choice with hair loss.
Very disappointed tiny1
gutted for you Tiny1, doesn't seem fair that some people get offered a service and others don't.
i've just come back from cancer unit, and they have booked it for me, they showed it to me too, most definately not a fashion statement!
Gill x
Oh Tiny, that is so unfair!
They should all offer the service as the hair loss thing is one of the most traumatic things.
However I would say that I doubt any of us who wear it will look that great, I have greys as well and what with not using hairdryer or straighteners, not a good look!
I am 16 days in and hair is moulting a wee bit but not sure if this is cos I am not brushing it but rather think that it is the chemo.
I really hope that the Paxman works and that every woman is entitled to it cos after what we go through with this horrible journey we bloody well deserve it!!
xxx
TeeCass, I had 8 sessions of chemo and hair didn't thin horribly until after session 6, but can still get away with little half headscarves with hair poking out, kind of gypsy look!. Lots of people keep their eyelashes and eyebrows. I kept mine until after my 8th session when they promptly fell out!! 5 weeks on and still no sign, however, with good eyeliner and eyebrow pencil most people don't realise until I point it out (unless they're just being polite!).
Tiny1 - I'm gutted for you too. I don't understand how with a National Health Service, things like this can be available in some hospitals and not in others! Good luck for your first chemo tomorrow though
TeeCass - I lost underarms and down below within 2 weeks of first chemo, then some head hair the day before second chemo but not really that much. I'm now a week before fourth chemo and still have eyelashes and thin eyebrows. The wigs now are great, I was a bit worried about mine blowing off with it being winter now but I'm pleased to say it's never budged lol.
Gill13 that's great you're able to use it, good luck for your first chemo too. I'm assuming it must be soon?
You could maybe check with your hospitals as well to find out if there's a 'Look Good Fell Better' course near you. It's great and they give you loads of make up tips and a fab goodie bag at the end xx
Hi
I use the cold cap for my first cycle of chemo unfortunately for me it didn't work. Within 14 days my hair started to fall out in clumps and a week now after my second cycle I am now bald. I thought I would struggle with the hair thing but you know what women are made of strong stuff! I tried scarves but I think they make me look ill. I now have a wig called Audrey and although sometimes we fall out, Audrey and I are becoming good friends. I had so much hope for the cold cap but hey hair grows back and as my dad said "his won't". Keep strong x
Hi all, I finished my chemo nov 2010, I used the cold cap my hair thin'd a little,and went very dry one good thing was I lost all body hair so if I hadn't used the cold cap I would prob of lost my hair x
Oh Twinkle that is a shame, was it the Paxman?
I used it on 4th Oct.My hair is shedding a bit but not sure if this is cos I'm not brushing it or not.
I'm sure it will get thin.
I have a great wig but it looks a bit too perfect so have bought lots of hats to put on the top of it!
x
I used the Paxman cold cap for the first chemo but after 2 weeks my head had loads of bald patches & hair was coming out in clumps. I gave up then & got OH to shave it all off. I do wonder if the cold cap fitted properly though ,in hindsight i should have got them to check it. It didnt seem that tight so if u are going to use it make sure its the right fit for u, don't be frightened to question them, its your hair not theirs.
For me, my hair coming out in clumps was far more distressing than actually shaving it all off. I've got a lovely wig & don't regret my decision, my hair was looking so bad that i would have had to wear scarves all the time anyway, at least this way i can go out in my wig.
Good luck to everyone trying the cold cap though, i definately dont regret trying it, hope it works for u
Does anyone know at what stage eyebrows & eyelashes start to go?
I'm 5 weeks after my final chemo and discovered a tiny bit of stubble on my eyebrow area yesterday. SOOOOOOO excited!! Can't stop stroking them and looking in the mirror to see how they're getting on.
Gulp ! day 20 (sounds like Big Brother)after 1st chemo session using the cold cap.
Scratched behind my left ear and got more than i bargained for...lots of hair! Is this the start?.. i was expecting it from the crown from what ive read from other peoples experiences on here.
No choice of cold cap for me either, they have one (donated) but the staff haven't been trained to use it yet. It wasn't even mentioned until I asked but what annoyed me is, they know I'm going to lose my hair so why leave it till 6 days before I start my chemo to discuss a wig, then tell me I have to pay the £61.85 prescription charge in cash (or cheque) before I can get it. I have a 40 mile round trip for each appointment and the nearest wig clinic is in the same city. The nurses have been brilliant with my treatment but I do feel they have drip-fed the information and every time I've asked anything all I get is 'oh they'll discuss that at your next appointment.' If it wasn't for this site I wouldn't know half the things I need to and they could take a lot of stress out of our situation if they gave us more information at the start specific to our hospital, a checklist of things to do would be great. I'd resigned myself to the hair loss but I really feel for anyone who's at the same hospital and was hoping to use the cold cap.
The nurse did say that it is the placement of the cold cap that is paramount to it working effectively, so if it doesn't feel right ask them to check it.
L4W
TeeCass - I have just had my 2nd FEC, using cold cap. From about day 18 of no 1 I have been shedding quite a few hairs if I run my fingers through and there a few every morning on the pillow. No one else would be able to see the difference as I have thick hair but it's definitely more than normal. Mine started above ears, crown not so much so, and not in clumps or anything so I am still quite hopeful.
Jules
X
Hi to all.
Just wondered how the hair thing is going as some of you are abit further ahead then i am.
Like many of you said, i started shedding about day before my 2nd FEC
so many thanks for the warning, it was much better knowing to expect it.
day 2 after 2nd FEC now and i am scared to death to wash it tomorrow!
I have created my own cold cap at home (sitting with abg of frozen sweetcorn on my head!!
Are everyones eyelashes and eyebrows hanging in there??
Is anyone due to start tamoxifen after chemo?? im scared about that one!
hi TeeCass
i was interested to read about your home made cold cap of sweetcorn (not on cob i take it! lol) i'm going to be trying the cold cap and i assumed that you only needed to keep head cold whilst you were having actually having the chemo, was this recommended to you? and are you using alopecia shampoo?
thanks Gill x