Calling all Cold Cappers!

Hi, I am 5 days post FEC/2. I ave been using the cold cap in the hope I can hold onto my hair. For me, the prospect of losing all my hair is the hardest part of this horrible treatment. Up until the morning of FEC/2 , I had not lost any hair at all, but since then it has started to shed and I am wondering what to expect for the remaining 4 FEC’s I still have to go through.
I am following the advice given by the staff at the hospital aswell as Paxman instructions online to the letter - and still my hair is coming out!! By that I mean it is thinning quite a lot, I still have a good head of hair - I’m just wondering if anyone can offer any advice? If it starting to is shed now, 5 days post FEC/2, could this mean that by FEC/3 , is it likely to get worse or does shedding slow down between treatments? Even though I know everyone is different, I suppose what I’m really wanting to do is plan for the worst, incase the cold cap doesn’t work for me. I have a good wig as a back up, but am so hoping I won’t need to wear it.
Has anyone any tips or advice for a Cold Cap novice like me? Any help or feedback on your cold cap experiences would be so appreciated.

Hello MeJane ,
I think your hair loss will start to slow down in between the Chemo sessions. I di the Cold Cap and I lost lots of hair in the shower, on my pillow and when I gently brushed my hair BUT I never had to waer my wig. I still had a thin covering of hair and for anyone who did not know me before Chemo they would never ever have noticed. I was so pleased that I did not have to wear my wig, but having said that , lots of ladies embrace wearing a wig and are very daring with teir colours, red , blue, purple and on course pink.
I really hope it continues to work for you and that you do not have any other nsty side affects. I had a sore mouth so get yourself some ice lollies to soothe your mouth.
btw I used Johnsons Baby shampoo, other brands are available ! Take care Love Tracy xxx

hiya Mejane

Im starting treatment tomorrow and i am using the cold cap.At my hospital they have a fantastic haircare lady and she says you will loose 30% of hair so dont panic, she said some people cut their hair when it starts to happen, but not to do this but to come and visit them. They have a salon. Yesterday I spent 2 hours with her trying on scarves and hats and going through how to care for my hair.
Keep with it
Take care xx

Thanks Tracy and bmw07 for your advice. I found it very helpful and encouraging. I will definitely stick with it till the end! Before treatment I had my hair cut and layered to give me a better chance of hanging on to it! At the moment only those close to me, who know me with thick shoulder length blond highlights would probably notice any difference! I now have a shortish layered more casual style that I leave to dry naturally, wash as little as possible ( eeuuww…yuk I hear you chorus!) and hardly touch. I am getting used to leaving it alone, actually so alien to me, but anything to keep it on my head!!!
Thanks again ladies, best off York all you Cold Cappers out there! Let the cold capping commence…!

Hi MeJane. I’m cold capping and I have just had FEC 5 out of 6. Still have a good covering of hair - some areas are thinner than others but if you hadn’t seen my original thick head of hair you wouldn’t notice.
Like you I started to shed about a week after the 2nd FEC but the shedding slows until the next one when the whole shooting match starts up again.

I’m a natural blonde with high and low lights and like you I had it shortened and layered before treatment started as the nurses thought my hair was too thick to allow the cold to penetrate properly. In my case I think the highlighted strands are the weakest and they have come out first. I’ve got just one more FEC to go and even if I develop a bald spot before FEC 6 I will ask the nurse to put a layer of gauze over the thin area before she puts on the cap. From what I read the hair seems to grow back faster if you have cold capped because the hair follicles have been somewhat protected.
I’m paranoid each time I wash it convinced that it’ll all drop out but so far so good. Fingers crossed, don’t want to jinx myself!! Good luck with your hair, it’s well worth having a go.

Feel really encouraged by all your Cold Cap feedback. I feel just like you, (Border Collies) I’m absolutely paranoid when I wash my hair, convinced it will all drop out As soon as I start!
The last FEC/2 I left it from Friday through till Wed before even washing the conditioner out! Not a good look! This may be why I seemed to lose so much all in one go. On the morning of FEC/2 I had a strange sensatiion on my scalp, which I’d read on here someone else experienced - prior to losing some hair, so I was forewarned! ;(
It’s really helped me to know what you cold Cappers are going through, forewarned is forearmed, so to speak! As far as wearing the cold cap goes, I’m coping with it quite well, although the first 15 minutes is the worst bit, after thats its a breeze…literally! Probably the scalp is so cold by then you can’t feel how freezing you are! XXXd

Hello there,
Just to let you know I washed my hair every single day whilst I was having FEC T Chemo. I also used to brush and blow dry my hair into its usual style and the Cold Cap worked ok for me. I think it is the chemicals that make it fall out not the washing, but of course everyone is so different, but I thought I would share it with you all anyway. Love Tracy xxx

I cold capped and probably lost 30-50% of my hair. It was only obvious how much I had lost when it started to grow back.
I did lose varying amounts through my chemo - a large clump when I was a bit clumsy unwrapping my hair from a towel after washing it once and generally a bit every time I washed it. There was quite alot on the kitchen floor whenever we swept it too.
I was very gentle on my hair - using a wide-toothed comb rather than a brush, only washing it twice a week, not handling it too much etc.
Good luck keeping your hair,
Sue

Hi for anyone using the cold cap I slept in a silk cap or you can use a silk pillow or scarf it stops your hair going patchy.
my hair did thin out but most people couldn’t tell there was anything wrong with me.
keep up with the cold cap it does work, I was careful when washinig and styling it I also used a wide tooth comb and dried it on a cool heat. On my fourth chemo it was getting a bit more sensitive on my head but was told if I didn’t have it my hair would probably drop out it is hard work but keep it up ladies it’s worth it.
x

I lost ALOT of hair and had a big shed after each session and had to wear headscarves BUT it filled in so quickly afterwards that I was sporting a hair do within a month. You can see my photos and tips in my blog above.

The constant malting is a pain - but Ibrink it’s totally worth it in the long run.

X

I cold capped through 6 FEC-Ts and kept pretty much all my hair :slight_smile: Yes, some fell out, but most of it stayed in - I even got it cut during chemo to keep it in shape. I had a thinning patch at the top of my hair, but Alice bands, or clipping half my hair back kept it hidden. No one at work noticed, though I knew and I pointed it out to friends and family! I also washed it minimally, used a silk pillow and cut it into a shortish bob before treatment. It did shed throughout, but now it looks normal (finished chemo 2.5 months ago).

Good luck to all the cold cappers - I hope it works for you.

the key to it working is simple…it has to fit properly . my head is in Between sizes and after 3 go’s i Have decided to give up…i am bald on top a good covering at back but no way could i go out with out a hat or scarf, when my Hair starts to grow back the new hair will be completely different to what i have left , would have to start from scratch anyway as I don’t fancy all different colours,textures etc . I too done everything Iwas advised …it MUST fit. Thinning Hair is ok once it starts to leave bald patches you know it has not worked.
I have a lovely wig and feel so happy chemo will be much quicker .
Good luck everyone,losing your hair is hard, but once you come to terms with it everything seems so muchbetter. honestly , I was bedside myself and cried buckets. I now feel a huge weight has been lifted.
love and hugs. xxx

And gorgeous you look too ‘tomorrow will be’
Love and hugs
Maggie x

Thanks to everyone who posted on my thread…I am really encouraged to hear how everyone got on with the CC. I am now 11 days post FEC/2 and still have a good head of hair. The shedding I had at around FEC2 has slowed down to a few hairs each day, but I am expecting more on or around FEC3. I now feel better prepared to deal with whatever happens with the cc for the remaining 4 Fecs. Everyone having FEC or any other chemo treatment Will no doubt be on a countdown till the end of this horrible treatment! Best of luck to everyone using the CC now and thanks to you all for your positive feedback. It’s so appreciated. Xxx

Hi Mejane- I’m five days post fec2 with good hair covering but shedding lots still-how’s your hair now - have you had fec3?
Good luck x

Hi Summer, I’m 17 days post FEC2 and - touch wood! - I still have a good head of hair. It shed quite a lot around just before and just after FEC2, then slowed down to a few hairs a day. Mind you, I have no hair care regime at all, let it dry naturally and any styling I used to do has gone out the window! But I’m getting used to a more casual style and am just thankful I be hanging onto my hair, at the moment, at least! I have geared up for a heavy shed of hair at FEC3 and probably on or near each FEC session, but will just have wait and see! Have crossed everything there is to cross as I type this! Best of luck Summer - keep with the Cold cap even if you do shed a lot of hair - sound like you expert similar experience to me with FEC2 and shedding will slow between treatments. Fingers crossed for you. Xxxx :slight_smile:

I’m 10 days post FEC4 , using the cold cap, and have still got all my hair.

Have had various panics when I’ve been convinced it’s starting to fall out, but it hasn’t.

I may be shedding slight more than normal , but there is no visible difference to my hair at all (yet - touch wood)

I have very fine hair, and I’m told this makes a difference… this may be partly genetic, as I stil have my eyebrows and eyelashes, too, which I gather is unusual.
On the other hand, the rest of my side effects have been horrible…

Hi Cybele. Very encouraging! Like you, I have all eyebrows and lashes too, with fine hair too. Am having FEC3 next Friday, so it remains to be seen whether I will have them by FEC4 - you must be pleased to have hung on to everything!
Fingers crossed for you for the remainder of your treatment. For me, SE for first 5-6 days have been horrible too, but from day 7 onwards, for both Fec1 and 2 - again touch wood! - I have been feeling fairly normal, just a bit more tired than usual, but otherwise okay. Best of luck with CC and hope SE improve for you. XXX

Really encouraged by your messages ladies :wink: even though I’m finding my hair everywhere! I was out today and friends asked when I was starting chemo;) my hair looks the same to them! Fingers crossed the worst is over and if I go bald at fec3 then it’s shorter to the end of treatment anyway- my kids haven’t noticed a thing and that’s why I want to look like mummy;)
Sending love to all you inspiring Coldies;)

I will be having 4th and final TC tomorrow and still have my hair. Thanks to CC. Was told 20% success rate with this chemo.

Wendy