Hi all, I am considering trying the cold cap and would be very interested to hear from anyone who has tried the cap - is the pain worth it? Thanks Lisa x
Hi, I asked a similar question and received loads of good advice (see COOL CAP, currently on page 10). There seems to be a mixed opinion so I suppose there is no right or wrong answer but as my chemo nurse said “if you dont try it, you will never know how it is for you”. I am having my first fec on Tuesday so I will let you know how I get on with the cold cap.
Good luck x
Hi Lisa,
I am on the 2nd FEC, just had it on wednesday. I also am trying the cold cap. The first 10-20 minutes are really not very pleasant, the art i have found is to distract yourself, talking or reading but trying not to concentrate on the -6 that is on your skull!!!
I had such a good result the 1st attempt that I went for number 2, my hair thinned a little but not so anyone would notice unles they were feet taller than you and could look on the top of your head lol. I only styled it when I washed it but gently, washed it about twice a week and then gently combed it with a wide tooth comb. Still looks good and i’ll report back after this go too.
I have to admit this go was a battle of willpower but i figured a few hrs of being unconfortable was worth it. I actually had ice on my head as i pulled the cap off…
I do have a wig just in case but hope to leave it on its stand.
Good luck with your decision.
Clare x
Is it best to get a wig before starting the chemo treatment then … its a big expense if you don’t lose your hair?
I tried the cold cap for about 15 minutes, and then had to give up because I found it so painful (though I do have skull metastases, so that might have made the discomfort worse than it would otherwise have been). However, I noticed that other ladies having the treatment appeared to be keeping their hair, so it’s worth a try.
I used the cold cap for all 6 FEC. After 3 FEC I had lost very little hair, then loads seemed to keep coming out for the next 3, and for 5 weeks after the final FEC. The plus was that I still had hair length, albeit thinner but a bit of hair poking out from under hats, scarves etc looks nice I think. By the end of chemo I had a couple of bald patches on top and was always wearing a beret or baseball cap. The bald patches have now filled in after 3-4 weeks of using Alpecin caffeine shampoo. Seeing posts from people who are disappointed with how their hair is growing back, I think it was worth it.
Hi
I have weekly taxol and have just done number 5 with one week off. I have so far kept all my hair, although I appreciate things could change.
I find the cold cap managable - as stated before, get past the first 10 mins and its certainly doable. My Oncology nurse puts quite a lot of hair conditioner on first and I try and leave this unwashed for at least 24 hours. It does lengthen the treatmnent time but I think its been worth it.
Good luck
Linda
ps don’t look at yourself in the mirror when you’re wearing it - it makes me look like some kind of alien
I used it and had very good results - a bit of thinning, but I never needed the expensive wig that is still sitting in the drawer. It is hard going - and if my results hadn’t been so good I would have given up. During Tax I also sucked on ice cubes to try and minimise mouth problems, and dipped my fingernails in ice water to stop the nails dropping off - which all added to the unpleasantness.
One tip - I had my hair cut very short before starting - the nurses were convinced this is why I had such good results. My hair is quite thick and if left longer the cold cap contact with the scalp would have been insufficient.
Good luck whatever you decide.
finty x
Hi just to say the wigs aren’t expensive, your hospital either stumps up the whole amount or you have to pay just £60 for a voucher to take to a recommende wig shop local, they will have all the information for you, they should have really given it to you, ask your mcmillian nirse or go back to your BCN to advise.
I just like the security of my wig, knowing if it doesn’t work i can plonk it right on lol
Clare x
Hi, I used the cold cap during my 3 FECs and thinned on top but managed to keep most of it round the bottom, so it looks the same as before when wearing scarves and hats so it is a bonus. I do wear wig as not only am I thin on top but very grey. Although I don’t think my hair has grown since having it cut to just below the chin. Unfortunately not using cold cap during Taxol due to the thinning as Onc nurse thinks it would be too painful. I have had 4 with another 8 to go. Although I do lose hair daily, I have always shed lots of hair and if I can keep just what I have now, I will be pleased. It is def worth a go but can be quite painful to start with. I had to wet my hair and apply loads of conditioner, and was advised not to wash it for at least 3/4 days, but I used to leave it longer as that is when I lost most hair. Wash days are shedding days for me. Good luck with it hope it works for you. Adi
Thanks for all your advice. I think I’m going to give it a try as some of you said even if it thins, a bit of hair under hats or a scarf will make me feel better. I hadn’t even thought about sucking on an ice cube and fingers in ice water - does it work?
Good luck to you all xx
I decided against it as I colour my hair and can’t do that whilst on chemo so decided going commando was better than multi colour roots, and blonde ends. I cut my own hair short in prep and today chose my new pet, Ermintrude, who has changed my look completely. Looks very good and better than my own hair. I might become a wig fan.
Hi Angielav
Could luck with the cold cap if you go for it! Nothing lost to try, huh? Re. the wig, I got mine on the NHS and it is fantastic as so many people have convinced me as they would complement me on my ‘new hairdo’! Ask your BCN for the voucher as I did think a wig was available to everyone on the NHS regardless of health board. The wig I got would have cost me £200 which is a lot of money. Always better to have one in preparation i would think.
J.
Thanks ladies, tomorrow is D-day and I’m going to give it a try. I also colour my hair so have had some darker colours put in to hide some of the regrowth. Will no doubt have to use scarves and hats to hide thinning and regrowth. I have a beautiful wig ‘Ingrid’ as my back up. Thanks for all your advice xx