Does the 'Cold Cap' work?

Hi This is the first time I have ever been on a discussion forum or anything like it so forgive me if I do anything ‘wrong’ My cancer was diagnosed after a routine mammogram, my 2nd I’m 53, I had a WLE and Auxilary surgery 3 weeks ago, everyone was all very optimistic at first and I was only looking at surgery then the radiotherapy, and the hormone treatment, well I could cope with that. Then the bomb shell landed and I was told at my follow up appointment that they found cancer in 1 of the 7 lymphnodes they removed, I now have to have more surgery on 14th July, (Monday waaaaahhhh!) to remove more lymphnodes, I have been told I will now have to have Chemo, (all I could think of was that I had just paid out to have my hair done, where did that thought come from?) I am so scared… I have been told that I may be offered the use of a ‘cold cap’ to help stop the scalp hair from falling out. I read on the Macmillan website that some doctors don’t like to use it and some people decide not to have it in case some of the cancer cells escape. I read that it only MAY help and is not guaranteed to work and would mean putting another 2 or so hours on the time of the treatment… maybe I won’t bother to have it, I am already resigned to the fact that my hair will fall out. oh decisions decisions… Does anyone know if the cold cap treatment works? or will my hair fall out anyway? please help.

Hi Laurel and welcome to the forums,

I have added the link to a Breast Cancer Care publication called ‘Breast cancer and hair loss’ which you may find helpful to read whilst you await replies as it contains information about using cold caps:

breastcancercare.org.uk/docs/hairloss_2004_v2_0.pdf

The booklet also contains information about our free ‘HeadStrong’ workshops which explore the many issues faced by people experiencing hair loss which may be available in an area near you, for more details and further support please contact our confidential helpline on 0808 800 6000, Monday to Friday 9am-5pm and Saturday 9am-2pm.

Best wishes
Lucy

Hi Laurel1

Sorry you have to be on here but you will find some great support and advice/experiences from ladies in a similar situation to you, as I have done. It will depend on the type of chemo you are given and it may be worth searching on that type to see about others experiences.

I have just bumped up a thread called ‘has the cold cap worked for you?’ which you may want to read, there’s quite a few comments on there. I tried the cold cap for 1 session but before my 2nd my hair had fallen out where the cap didn’t fit properly which made me decide not to continue. There are plenty of ladies who it has worked for and some that it’s not been a total success for but has meant they still haven’t had to wear a wig etc. I now do wear a wig when I go out so I don’t get stared at (my choice) but wear soft ‘beanie’ type hats in doors - again my choice.

The other thread worth reading is ‘So who’s still got hair?’ which I will also bump up, I think both appear in the Undergoing treatment:chemotherapy part of this site. This gives an insight into our warped sense of humour about the whole of this ‘experience’ and will hopefully give you ideas on how we are all coping with this as well as making you laugh:-)

Please ask any questions you like and I hope that after the shock of knowing you need chemo you find out all you need to know from here or your onc.

Good Luck

Nicky

Thanks Nicky, I was just reading the discussion when you bumped it up for me. It was a bit of a shock especially as I was originally told that it would probably not have spread because they caught it so early (it wasn’t even a lump it was what they called a distortion of cells so I wasn’t expecting to have Chemo). I guess I will just have to wait and see what drugs they will be giving me and discuss it with the BCCN. Its all very scary but I can see there is so much support out there. I will be reading. I have already had a laugh with my step daughter about wigs, think I might go Red or Blond…
Not looking forward to the ‘extra’ surgery I am having, going in tomorrow providing they’ve got a bed as the hospital is so far away from me and I need to be there by 7am Monday. I live in the sticks or so I’m told.

sorry not much time to reply but I had 3 x ac and 3 x taxotere was tld that I would defo loose my hair but wore cold cap and had it cut v short and although it was this and in crap condition I didn’t loose it all.

xxxxxx

Hi there

I am going to try the cold cap, I have been told there is a 1 in 4 chance of it working so it’s worth a try.

Take care.

Ann

xxx

hi there, i had 5 cyles of fec last year and by having the cold cap i did not lose any hair( paxman cold cap which i understand is the most effective) I have to say it was time consuming but well worth it and only uncomfortable for the 1st 10 minutes then you just adjust to it. In fact after about half hour i used to want to check it was still working cause it felt ok by that time . I did exactly what was recommended like washing your hair only once a week and using only luke warm water and mild shampoo no hairdryers or heat or products. I had a good hair cut before it started and just had a style you can just wash and leave. Everyone commented how nice it looked and i saved a fortune in hair products!! Anyway good luck hope it works for you too. Skelts

Hi Laurel - your post was great - stay in the club!

I had exactly the same experience as you, although on my 3rd regular mammo, at age 58, with a non palpable lump so was very surprised when I was recalled. I was initially told, like you, that I would have a WLE and sample node removal - gosh, the bc nurse had to show me a diagram of the axillary nodes I was so ignorant - and rads. 2 out of 8 nodes sampled were malignant, so it was back a month later (got a haematoma and infection in the wound) for total axillary removal. Big shock when I went for post op results, surgeon had found another node +, so chemo was mentioned for the first time. I just hated going for “consultations”, as the news was always bad.

I had 6 x FEC and the Oncology nurse who showed me round the suite said I could have the Paxman cold cap which is a motor cycle type helmet (different sizes) directly connected to a freezer unit beside the chemo chair. She also said it only worked in about 10% of cases. I decided to go for it, but my bc nurse gave me an NHS voucher up to £120 to take to a designated wig/hairdresses in Plymouth to get a wig before I started chemo. It is gorgeous, but I never really needed to wear it, except on a bad hair day. It had to be ordered and when I went to collect it, a stylist cut it to suit my face.

My hair did thin quite a bit on top, and it didn’t grow during chemo. Funnily though, when it did grow again it was curly like Kylie’s. Don’t undertand that mechanism. I thought it was well worthwhile and the extra time wasn’t a problem as I am retired. The nurses wrapped me in a duvet, brought me free hot drinks and a picnic type lunch, which my husband ate, as I felt so nauseous. After about 10 minutes I just fell asleep and usually had to be woken up at the end of the treatment.

Go for it - you may be get lucky as I did!

Liz.

I so sympathise with the extra surgery which I too needed. Was given Sentinal node biopsy to start with and told only 30% of people have to go back. I was one of them!! You are just recovering from first op and getting use of arm back and then depression of going back into hospital. If I knew then what I know now I would have had the whole thing in one go. And as far as I can see they do not have much evidence yet to show that sentinel node is reducing the cases of lymphodema anyway.
As to the hair. I also tried cold cap and I think it was the Paxman type as it seems like that described above. Very time consuming and it definitely didnt work for me. By end of third week just before 2nd it fell out in handfuls.

I was told by chemo nurses that it works for 70% of people! Not as far as I can see it doesnt. I only know of about two people. And their hair has thinned.

I have been told it doesnt work if you have thick hair which I had. And the cap did not feel cold on my head. I didnt have a headache. Apart from the time factor and the bother of going to loo it wasnt that bad but unfortunately like it all not guaranteed. Its such a shame. If they could only tackle the issue of hair loss like they have with the sickness there would be a lot of happier ladies!

Good luck and I hope it works for you.

Hi,
I’ve used the rubber cold cap that they keep in the freezer & swap every 20 mins or so - & I’ve been pretty slack with it. Put it on when IV starts & take it off when it finishes & go home. My hair has thinned over 3 sessions of Tax & held on through one of FEC which usually spells doom for hair. The onc nurses at my Finnish hospital are impressed - Finns don’t usually bother as appearance is not as important here as in a lot of Western countries - but one can’t be certain it’s the cold cap and not a personal quirk. Plus there’s 6 weeks until treatment is ‘officially’ over - so plenty of time for a reversal. I wouldn’t have bothered with the ‘Paxman’ according to people’s descriptions of it; and no one has said anything here about continuing to wear it for 2 hours after treatment - though it seems logical - and I wouldn’t do that either. Too boring. Typical slapdash strategy on my part - great intentions, no application. If it wasn’t likely to grow back (which it is almost certain to) everyone’s choices might be a bit different.

Good luck with whatever you decide,
M-L

Hi Emelle, you sound so defeatist about the cold cap…it worked for me brilliantly, and I only had a 10% chance it would work…nothing to lose except my hair! No problem with the half hour before chemo, 1 hr afterwards, and I just slept through the whole treatment, wrapped up in a duvet, with a hot pad on the infusion arm. Only problem was going to the loo with the Iv contraption.

That old treatment of a cap kept in the freezer is diabolical…the Paxman is brilliant. no weeping water all over your neck, just very cold for about 10 mins. Can only tell it from my own experience.

Love, Liz.

Thanks everyone for your comments, sorry for the delay in replying, I had the second op on 18th July and had to stay in hospital with the drain still attached, they said its taken out when it drains 50ml in 24hrs or the 5th day which ever comes first, of course the 5th day came first!!! the district nurses where I live are not trained on the monitoring of the drains so I couldn’t go home. oh well, I’m home now, and very very sore, much worse than the first time. I have had a bad reaction to the sticky tape they used on the dressing for the drain, so I changed it for a micropore one and its much easier now. the pain in my upper arm and armpit is excruciating, don’t know if its where the numbness is returning or what but it hurts, and I pride myself in having a high pain threashold, but that’s out the window now. It seems a common problem looking at the other threads on the forums. I still haven’t decided weather or not to have the cold cap, although I am swaying towards trying it, but I will still go to the hairloss councelling sessions and get a wig just in case it does. (knowing my luck it will still fall out, if there’s 1 in so many that it will happen to then I will be the 1. OOPS sorry to be so negative but feeling a bit sorry for myself today. Waiting for the follow up appointment on Monday 28th to see how much chemo I will be having, I did ask if it will be deffinate and was told ‘probably’ oh well wait wait wait again. will let you know what I decide to do.

Luv to all
Laurel x

Hi

Not all chemo makes your hair fall out some make it thinner some total loss no matter what.

I had Epi which is a baddie for hair so didnt bother with cold cap as it woukd fall out anyway.

But had to laugh at my mate who today confessed that she had always been jealous of my waist long blond hair but since ive lost it she said you bitch you look better without hair I hate you LOL

I dont wear anything up top unless I’m going out on a saturday night but even then I usually end up taking my hat off as everyones so used to me without it.

I honestly dont know what i’m going to do when it grows back ive always has straight long hair and now its going to be short and curly so be very strange for me but got my straightners at the ready. Sons even offered to buy me hair gel woo hoo

Joanne

Hi

with friends like that who needs enemys!! hee hee she sounds great.

Wish Monday was here then I would know if and when…

Oh well.
Love Laurel x