Anyone tried the 'cold cap'?

Hi everyone
I am a 39 year old very recently diagnosed with Stage 3 invasive ductal breast cancer. I am going down the route of chemo first which will hopefully shrink tumour enough to get away with lumpectomy followed by radiotherapy. I am just wandering if anyone has tried the ‘cold cap’ treatment to try to prevent/minimalise hairloss - in particular when receiving the A/C regime i.e. doxurubicin and cyclophosphamide . If so - what were your experiences of it?
I am absolutely petrified but glad to see there are lots of others out there who feel the same. Finding reading this site really helpful. Wishing all of you out there all the best.
Fiona

Trying it tomorrow!!! First lot of FEC (x3) then taxotere (x3 or 6 depending on shrinkage!). Will let you know what I think. I know there have been mixed feelings on this site about whether to bother and also the success varies according to the drugs used. I am ready with scarves just in case, my daughter thinks I look like a pirate and that apparantly is ‘cool’! So we’ll see what happens!
Ali
x

Thnx Ali
Have just been reading some previous comments about it - think I will reserve judgement and speak to the nurses before I start first treatment. Thinking that if my hair is still going to fall out anyway (maybe just delayed by a couple of treatments) I will probably just give it a miss. Saying that, it is the hair loss that I am dreading most - going for fitting for a wig 2moz!!!
Will wait and see how you get on too!
Fiona
x

Fiona, I have posted frequently on the cold cap and hair loss so am not going into this in too much detail again. Just want to say that I have used the cold cap for different chemos - including those where I have been told it would not work! And it has. Like you I dreaded losing my hair and I have been very fortunate that the cold cap worked for me.

Dawnhc

Hi Fiona,
Sorry you are joining us here but you will get lots of support from this site. Re the cold cap I’ve done 4 xFEC so far and still havve about 60% of my hair (well on my head anyway) It seems to have disappeared from most of the rest of my body though! The cold cap is time consuming but oddly I quite like hanging around after the chemo has been put in - i kind of feel safe in case there is an allergic reaction (I’m a real optimist you can tell) also they usally manage to russel up a cup of tea and by the time all the faffing around sorting out anti sickness drugs is done it’s time to go home. It’s not for everyone though and i am (rather was) quite dark and hairy so guess I’ve been lucky to keep a fair percentage of my hair so far… By the way the colour and texture may change - my glossy bob now looks like a brillo pad -but it’s still hair!
cheers Caroline

Thats encouraging Caroline - thks for that. Cheered me up no end before I begin tomorrow.
Ali
x

Make sure it’s hugging your scalp well. If it’s not connecting well at the top of your head, don’t be afraid to ask to try another size. For me the bigger size had a flatter top which better fitted my head, but I didn’t speak up until the following session and now have a Friar Tuck. For todays they insisted on using some gauze pads on my thin bits and I didn’t realise just how many gauze bits til I took it off. Goodness knows what I’ll look for in a couple of weeks time…

But for the moment I can still wear caps and have some hair sticking out from under.

mousy

Hello Fiona

The cold cap didn’t work for me as I lost most of my hair but it works well for lots of people. There are people I see in the chemo clinic who have lost almost none of their hair as a result of using the cold cap.

so I would say definitely do try it.

Good luck
Love Anthi x

Oh, and the other thing is to leave it on for 10 mins or so after switched off so the ice can thaw so you don’t pull any hair out doing it.

mousy

Thank u all for ur comments - will bear them all in mind!
Fiona
x

Hi all

I have posted this on behalf of new user Anna.

Regards

Sam
Moderator
Breast Cancer Care

Hi, Have just joined the forum and saw your question on Ice Cap and thought I would give you my thoughts. I had an 8 course FEC chemo treatment and wore the cap. I did cut my hair shot prior to chemo and although it thinned the Ice Cap worked. However, by treatment 6 I was finding the cap hard to take as the chemo treatment took longer each time (due to worsened veins) I ended up having at least 5 ice cap changes over the treatment time. It was hard to take and I was ready to say, no more. I stuck with it but have to say that for the last 3 treatments it made an unpleasant experience even worse. But I did get to keep my hair! Anna

Hi
Had the cold cap today with my first of 3 FEC’s. Was very heavy and quite clearly very cold. Felt like a massive headache was gonna come in the first 5 mins, but after that OK. It was a good fit…so we’ll see. Still had wiggy appt today anyway as my back up plan!!! Had 3 hat changes and with Taxotere x 3 I will have 4 hat changes although can’t remember why!!!
So far so good, still in the land of the living…wait and see how things are tomorrow.
Ali
x

Hat changes? I have just the one on all day (from about 12pm to 7 or 8pm). Aren’t yours attached to a refrigeration machine by a tube?

Glad the headache went away. If it persists they’ve probably got your chin strap done up a wee bit too tight.

mousy

No, mine was a kind ice-filled hat, made of insulation fabric like neoprene. The hats are frozen and then have to be replaced as they thaw out!!! Nice!