any success with the cold cap?

Hi. i am due to start chemo on 12/01 3 x FEC and 3 x TAX and i am really struggling to come to terms with the thought of the hair loss. Sounds so small in comparison to the mastectomy i’ve just had but it just feels as though every little bit of my femininity is being removed. i’ve heard about the cold cap and asked the chemo guy about it. he was very matter of fact and said it probably wouldn’t work anyway and although i had nice hair, it will grow back. i just wondered if anyone had been through the same drugs as me and successfully used the cold cap throughout. don’t know whether i’m just clutching at straws but i didn’t want to believe it wouldn’t work.

Why did the idiot say ‘it probably wouldn’t work’?

I had FEC100- T 4+4. I had long, thick hair and kept almost all of it. Just lost a bit at the sides where the cap didn’t fit properly.

I have a lot of info about making the cold cap work…you do need to do a bit more than hospitals often tell you. Especially so if you have thick hair or if you are black and have wiry hair. They also often don’t tell you about what to do with your hair in between chemo appointments, and this can make a big difference. I did have a thread on here some time back about it and those of us for whom it worked all agreed.

Not sure what you already know. PM me/add me as a contact, let me know with what you’d like to know and I’ll fill you in.

xxx

Hi jo - jo,
I too was lucky and had succcess with the cool cap whilst undergoing x4 FEC and x 4 Docetaxol back in 2002, as did 2 other ladies who had chemo alongside me.

My hair thinned slightly but you wouldn’t have noticed - only my hairdresser and I did - and yes, I still had to have my hair trimmed during treatment!

I was told not to colour my hair whilst using it and to use baby shampoo to wash it.
I’ve heard that some ladies are advised to smother their hair in conditioner before the cap is applied but I wasn’t told to do this.

I found the cap extremely uncomfortable for the first few minutes and of course it prolonged my time in the chemo suite, but for me, it was worth all of that and (god forbid!!) if I had to have chemo again, I’d definitely opt to use it again.

I’m aware that it isn’t for everyone and there are no guarantees but when I was offered it, I thought “what have I got to lose - apart from my hair??!!”

Good luck with it all and please don’t hesitate to ask me anything at all x

I used the paxman cold cap, they have a very good website and are quick to answer email queries. I didn’t do so well with the cc and lost most of my hair, however, I kept using it as I was told it helps with regrowth and 6 months post Chemo I have 3-4 inches of hair, enough for mini straighteners. Good luck! X

hi jojo.
I’m half way through the same regimen as you and about to start Tax on Friday. So far the cold cap has worked for me. Like doxey it has thinned a little but not so much that anyone else has noticed. My oncologist said there was no danger of cancer cells in the hair follicles. There are no guarantees but it is worth a go. It isn’t comfortable but in some cases it works. On my second go a lady was on her last chemo, used the cap each time and had all her hair still.
drawbacks are not being able to wash it so often or use styling products. I use a scarves when cooking/ cleaning so smells don’t linger, especially first week post chemo when I’m particularly sensitive to smells.
Best of luck and good wishes,
Sue
x

It worked very well for me through 3 FEC and 3 Tax. I had my hair cut very short beforehand, as advised. Just thinned in one area on top from one session when I was feeling awful and couldn’t be bothered to keep it pulled down in close contact with the scalp, and they messed the timing up. With the type I was using you are only allowed to change it 3 times and they put the first one on too early and then I had a long wait for bloods, so it got warm at the end. I reckon I kept 70% of my hair.

finty xx

I had my first of 3 FEC on 7th December and used the cold cap. Hair has thinned, but still got it and no one else notices. Mine is very thick and long, so I cut it short (v. pixie-style short) to take the weight off it and to avoid dropping long hairs everywhere (and to avoid me having to clean out plug holes. Yuk!).

As mentioned, there is more to it than the hospital tells you, so do look at the info suggested in the other posts here. I will wet my hair next time before putting the cap on.

I have washed my hair in the shower, patted it dry and used a hairdryer everyday. I used gentle shampoo and conditioners.

I checked on the comment re: chemo not getting to the follicles and the onc. said that as bc doesn’t move to the head, this wasn’t really an issue. (secondaries are lungs, bones and liver - not head). But check with you oncologist for her/his view.

Hope this helps
Annie

Oh gosh yes, just picking up on a comment above. There are of course, different types of cold cap.

The more old fashioned ones are plonked on your head and filled with ice, which is changed to keep the temperature down.

Most hospitals now use something quite different, where you are, er… attached to a refrigeration unit lol: paxman-coolers.com. Two quite different experiences I’m sure! And the latter gives better results.

I am due to start chemo on the 25th Jan for the 2nd time and the thought of losing my hair again just fills me with dread, I am going to the chemo unit on the 14th and am going to ask about using the cold cap, had already planned on getting my hair cut short, I had really thick hair and after the chemo it is more like baby hair!
Was glad I found this thread by chance.

Hi, i’m afraid I’ve had limited success with the cold cap. A lot fell out just before my 2nd FEC, although I kept going with it and it has definately slowed the hair loss down. I still have some hair (had it cut short) but I am now almost bald on the top (think I must have a funny shaped head, as this is probably the area where the cap didn’t fit so well!)Last time I used the cap it was so painful that I made the decision not to use it any more during tax.

The hair thing was a big issue for me which is why I had no hesitation in using the c-c. I would say it is always worth a go (no scientific reason as to who it works for and who is doesn’t). You can stop using it at any time but at least you will have given it a go…and you may be one of the lucky ones!

Can anyone tell me whats the best shampoo and cond to use when using CC? How often do you wash your hair? XX

Hi,

I used the cold cap for 5 sessions of FEC and kept most of my past shoulder length hair. I had lots of layers put in before the treatment to thin it down a bit. I washed it once a week by patting it and only went through the ends with a wide tooth comb, i also used some redken anti-snap treatment and aveda shampoo. i didn’t put anything too heavy on my hair, maybe a spray on leave on conditioner would be good and wore a lot of hats. Hope this helps. I managed to look like i had normal long hair with a hat on, the strange hair styles come when it starts to grow back on the top!! But its all fine with hats and accessories.
Good Luck xx

Hi. I’m one of the lucky ones. I used the cold cap for 6 x FEC and kept most of my hair.
I washed it twice a week in Johnsons Baby Shampoo. Briefly patted it dry with a towel, a quick brush through with wide-toothed brush and then left alone - no hairdryers or any other products. I tried to only brush it once a day, very gently.

Good luck to those of you just about to start chemo.

Sue xx

i have been today to the chemo ward and have decided against it, i know having to wear it is for 2hrs but what it entails has put me right off, so hair free for me it is, good luck to all that do decide to go through with it.

Hi everyone, thanks for all the comments so far. i’m now day 6 after FEC 1 and did undertake the cold cap. i know it’s too early to know if it’s worked yet but i’ll keep you posted. The experience did mean an extra 3 hours at the hospital but that didn’t bother me. The initial 10 mins of the cap took my breath away, made me light-headed and was very uncomfortable but i’m so glad i had done my research and could tell myself that it was not going to be like that for the whole time. after the 10 mins it was do-able, head a bit numb and body was cold but blankets and heat packs from the nurse kept me warm. One thing i would say is that the hospital did not seem that clued up on the process and again i was glad i had done my research and even took my own conditioner, which was good as they couldn’t find any! Anyway, fingers crossed.

Thanks

Joanne xxx

Well done Joanne - but why did it take an extra 3 hours? Your chemo nurses ought to be able to time it so you just have an extra 30 mins at the end of chemo.

fintyxx

Hi Finty.
There was a lot of disorganisation and the nurse who was administering my chemo had never done a cold cap before so had to learn herself! I then had to have it 30 mins before drugs, then during the drugs which took another 45 mins, then 1hr 30mins after. although they had quite a number of paxman coolers there, it didn’t seem to be that popular which i think is partly to do with the doctor as he tried to put me off by saying it rarely works and it ‘will grow back anyway’. I’m so hoping i can go in there next month with a good head of hair just to prove a point!

Timing depends on the type of chemo (half life different) and dose, also thick / curly hair needs longer. FEC100 needs loads longer than Tax. :slight_smile:

I did 1 hour before and 2 after on the 4 x FEC100 and then 45 mins before and then an hour after on 4 x Tax.

Yay for Mr Paxman!!!

That’s new info to me - my timings were the same for FEC and Tax - I think it was 30 mins before and either 30 or 40 afterwards - can’t remember precisely. I didn’t have the Paxman though - I had the old fashioned type. I did have my hair very short though, so maybe that helped keep the timings shorter - 2 hours after is very harsh, I’m not sure I would have been able to do that - you’re a tough cookie!

finty xx

Hi folks, been reading this post with great interest. I’m meeting my onc on Monday, so don’t know what type of chemo regime I will be given, but I definately want to try the cold cap. Does putting conditioner on your hair when you have the cold cap on make it more successful??
I currently have shoulder length, very thick hair. I really don’t want to cut it any shorter than it is at the moment, but will do if you think I have a better chance of not losing it. Did everyone cut their hair short prior to their treatments? Would happily go and get it thinned down but really like the length as it hides ?? my double chins ha ha. Any adive would be appreciated. Many thanks Donna.