Cold Cap - did it help keep your hair?

[feelthefear]

I thought I’d bump this for anyone who is about to start chemo and is considering cold capping.

I’ve now finished my fec-t regime (Oct 17) and have kept all of the hair on my head (bald everywhere else) thanks to capping.
I had my long fine hair (lots of it) cut and layered into a pixie prior to treatment.
I used the paxman shampoo and conditioner. I washed it twice weekly in warm water using a cup and dried it on the lowest heat if I was going anywhere, otherwise I allowed it to dry naturally. I never washed it straight after chemo and always left it a day.
After my third fec I got a bit braver and started to wash it 4 to 5 times a week in the shower. I also started to use mousse.
It’s continued to grow throughout treatment and hasn’t thinned at all.
The cap isn’t the most pleasant experience and is pretty uncomfortable for about ten to fifteen minutes, then you forget you’re wearing it.
Drinking something hot when it’s first put on helps, also take 2 paracetamol an hour beforehand.
My hair is now over 3 inches at its very shortest and around 6 on top.
I’m so grateful to the paxman cap company I could shout it from the rooftops.
I know this doesn’t work for everyone, but I also know I’m not a one off as I know of others who have just finished treatment who have also kept all of their hair.
Also, I didn’t wear a silk cap for bed to protect my hair as some do as it was horribly sweaty and the same with silk pillowcases.

Some people worry that by using the cap you are stopping the chemo reaching your head. This isn’t true. It’s only your scalp that is effected and the chances of breast cancer spreading to it are extremely tiny and rare. Have a look on the paxman website for more info.
If anyone is considering capping, I definitely say give it a go. Any questions, just ask.
Angela

[Mishy18]

Sorry chemo brain sowdril ahhhhh this predicted text, think you know what I mean though!!!!!

[Mishy18]

Melia feel the fear is right! I lost all mine to first fec with the cold cap had one to and now got a fuzz all over just about so in my opinion fec is more harsh on the hair than T I think you should be OK 🙂

[feelthefear]

Hi soworridl. Docetaxel isn’t as harsh on hair. In fact, for a lot of people who lose their hair on the fec or EC it starts to grow again on T. The absolute best thing is that you only have to wear the cap for between 20 and 30 minutes after your infusion rather than an hour and a half. Hopefully you shouldn’t lose any more hair now if you continue to cap.
I’ve only got one left to go and can’t wait to take that ice off my head for the final time. It’ll all of been worth it though. I’ll be eternally grateful to the paxman family. X

[riversidedawn]

Hi Melia

Take a look at the cancerhaircare.com website, they have loads of information and advice. I'm fortunate to live a short distance from their saloon but the website is very helpful. X

[Soworridl]

Hair loss experiences with docetaxel Anyone? X

[Melia]

Thanks ladies.. I've still got the total fear of it coming out as soon as I scrub it in the shower... Angela your braver than me 😕 I think because I know the fec is not vicious on the hair im more wary. Think ill wait a good 4 weeks before using the delightful hot water might wait until after radio to get it dyed! Some people havw advised 6 months before dying it but maybe if that's if they have lost a lot of hair I dont feel like my scalp had really been affected just my hair is more dry than usual xx

[riversidedawn]

Hi ladies, congratulations on persevering with the cold cap! I had my hair trimmed a few times during chemo to even it up and I had it dyed professionally at cancerhaircare.com about 6 weeks after I finished (3 x FEC and 11 x taxol).

I really can't remember when I used hot water but I carried on using naked shampoo for a while as I liked it! X

[feelthefear]

As you know, I’ve been washing mine in the shower nearly every day since my 3rd fec. And here I am nearly due my final T and my hair hasn’t budged. I’ve been drying it with the dryer as well and using styling mouse now and again.

As you haven’t lost any either, I honestly think you’ll be fine to give yourself a treat and wash it in lovely warm water. It feels divine after the lukewarm water with head over the sink treatment for so long.
Enjoy. X

[Melia]

Hi I've just done my 5th and last fec, just wondering when everyone started washing hair as normal. Dying to give it a good scrub. Also when did you first dye and or get it cut after cold cap. I'm getting so much differing info xx

[Mishy18]

Aren't the look good feel good really nice you get to meet others in same situation x
It's a confidence boost as well x the goody bag is lovely
Yesterday I used the make-up as I was looking rubbish and everyone commented on how good I looked so yeah well worth it
If you do lose your hair like me (fec round 1)make up and nice scarf tying makes a difference
The kylie look for scarfs is really classy looking go on pinterest for different tips xxx

[Melia]

Riversdawn I didn't realise the cap could be put on differently, I was under the illusion before cold capping that it would gradually warm to my head which I thought wound be much kinder not.only for my hair but the shock my body gets getting me head Instantly frozen... seems a much kinder way to do it that way. Don't think I'll bother to ask to change methods now though as the instant head freeze seems to.be working for.my hair xx

[riversidedawn]

I kept a good covering of bob length hair through 3 x FEC and 11 x weekly paclitaxol. I agree with cap size - I've got a small head (wear a child's riding hat which my daughter outgrew when she was 8!) but I think they ended up with a large cap and medium cover as it gave a better fit.

2 different chemo nurses had different approach to firing. The first cooked the cap first then put it on ..... the hair that I lost was all from this one. The next nurse put it on at room temp then cooled it on my head. It gave a much tighter fit and I had no more significant loss.

My hair thinned pretty evenly all over, no big patches. It was pretty thin on top but a clever comb over pony tail covered that!

Hair continued to grow through the rest of treatment and I had a good 2 or 3 inches of new hair at the end xx

[Skye1974]

Hi, I started THP chemo in may, used the cold cap through all 4 cycles and my hair has only slightly thinned. I've just had my first of 2XEC cycles, used the cold cap again but all I've heard is bad things about EC and FEC making hair fall out!!! Has anybody else had this drug regime and kept their hair after the change of drugs? Thanks, Skye x

[feelthefear]

Sorry to hear you've lost your hair kbomb. I've managed to keep my so far after two fec. I agree about cap size. I was quite insulted when my chemo nurse said I needed a large cap covered by a medium. I never thought of myself as having a particularly large head. 😀 I'm glad I went with it though as it seems to be working.
I'm sure you'll rock the Hollywood film star look well. 😀
I picked up my real hair wig last week and absolutely love it. I went to the look good feel good session yesterday and even the women there didn't know it was a wig. I've been wearing it even though I've lost no hair it's that gorgeous. I had my hair cut really short before chemo to ensure the best fit for the cap so the wig is giving me back my identity.

[Mishy18]

Hi KBomb you did the right thing I know I felt better after I shaved I couldn't bear watching my lovely hair just dropping out in front of my eyes so now it's gone its one less thing to worry about x yeah snap about the wig too! I need to get me one of those ASAP 🙂
Melia you lucky thing hang on in there you might be one of the lucky ladies!!!!!
The Fec certainly took my Barnet thats for sure 14 days after first one xx

[KBomb]

Well last night after constantly picking lumps of fallen locks off the baby and feeling that I was walking around balancing hair on my head, I said goodbye to it all. I got my hubby to pull out the clippers on it whilst my 5 year old danced around the room laughing at how "funny mummy looked"! After the shave I can see where the cold cap had sat and where it hadn't quite been fitted properly. The bits where I had lost hair and gone bald were around the sides and back of my head. I was resembling something of a monk with a dodgy 90's undercut. I can see where it has thinned out a fair bit on top but reckon that perhaps if the cold cap had been a bit bigger then I may have got away without losing so much. Anyway it gave my 5 year old a good giggle and my hubby says I look like Angelina Jolie now (he really does know the best things to say!) so I'm just gonna go with it. However now I am thinking I perhaps should have waited a few days and got a wig ready beforehand.... Oops! Nevermind! Now where did I put my hats?....Xxx

[Melia]

Vicclo what chemo regime did you have if you don't mind me asking. I'm having just the fec and I know that's supposed to be harsher on the hair... but so far so good! Congrats on keeping your hair xx

[Melia]

Vicclo what chemo regime did you have if you don't mind me asking. I'm having just the fec and I know that's supposed to be harsher on the hair... but so far so good! Congrats on keeping your hair xx

[Mishy18]

They won't let you cold cap once you shave I had to as mine was so patchy and thin I looked like Golum so I shaved for my sanity the nurse on chemo unit said you can't cold cap of no hair to cover scalp as it will get freezing burns, hope that helps

Good luck to anyone who is still hanging on to their hair!

[KBomb]

Does anyone know if I were to shave my head really short, if they would still let me use a cold cap? Or is there a limit to how much hair you can have? Just wondering as it's really starting to fall out and go patchy this end. Wondering if I should just shave it off? Xxx

[Vicclo]

Just finished chemotherapy treatment for breast cancer ! Managed to keep most of my hair by using the cold cap, noticeably thinner but still look like I've a good head of hair 😊 ! X

[Melia]

Second daughter has the bug now... up half the night cleaning up sick! So glad no chemo today as I couldn't have managed with sickly kids on top. I swear someone is filming my life and watching it like an episode of eastenders.. so unlucky at the minute. Be really careful from day 10 angela when your bloods drop think that's when I picked up my infection. Hope you feel a little better soon mishy xx

[Mishy18]

Hope you don't catch it, there is nothing worse than a sickness bug especially when having treatment x
Day 4 and feel ugh! Wish this would go away!!! Hate being ill such an inconvenience
😠😣

[feelthefear]

By the way Kathryn. My adult daughter has a sick bug too. Too late for me to delay as 8 days since last one. 😳
Terrified of catching it. 🤞🤞

[Melia]

Hiya I didn't get the pic but my email address is kamelia3011@yahoo.co.uk that's really quick nice to know! I best get saving just incase. Xx

[feelthefear]

Mishy, Kathryn if yous do get wigs take a pic of how your hair was before you had it cut and he'll copy it.

[Mishy18]

Hi Melia yeah I'm getting used to baldy look! Just as well it's not permanent but wig going to be a def for me i think x hope your hair hangs in there for you the dryness is awful isn't it I got that more or less within week of first fec!

[feelthefear]

Kathryn, I think I've managed to send you pix.

[feelthefear]

P.s. It took a week from ordering.

[feelthefear]

Hi Kathryn. PM me your email address and I'll send you a pic. Not sure how to upload one onto here from my iPhone.

[Melia]

Mishy so glad your feeling better about your hair. I bet you look fabulous without... whereas I would resemble a Spanish footballer. Angela could you send me a pic of the wig if you don't mind. Did it take you long to actually get it from ordering? I've not ordered one yet as don't want to tempt fate. Hairs still holding on but starting to get very dry so I'm putting cocunot oil on which then makes it really greasy.. but id rather that than have it snapping! I was due 3rd fec on Thursday but my daughter has a sickness bug now so theyve delayed treatment until next week. I think my body could do with the break after hospital etc but the longer I delay the more I don't want to do anymore xx

[Mishy18]

Pleased you like your wig x something to give you back some self esteem I know what you mean about not looking like yourself any more x I have asked for a wig voucher to see what is available x but my mam has real hair wigs as she suffers alopecia has done for years so wouldn't be without them x I'm sure my eyebrows are thinning too bloody fec it's ravishing us isn't it!!

[feelthefear]

Well I took the plunge and collected my wig today. If you see this Kathryn, it's a long real hair one from tribeca. I absolutely love it. I feel like me for the first time since I had all of my hair cut off. I can't believe how realistic it is and it was half the price I thought it would be.
I haven't lost any hair yet, but definitely didn't feel like myself with my extreme short cut.
Hoping I continue to have luck with the cap, then when my hair grows back to chin length I can have extensions next year.

[Mishy18]

Yeah the kylie look, I saw a girl in the unit and she had her scarf on lovely I want to avoid the I'm on chemo look if I can! So I think I'll be hitting pinterst for some techniques, today I don't feel too bad hope you girls are going to persevere with the cap if it's working I just hope as you have got this far with it won't start to let you down, I know you will probably feel like I did if it does start it took five days from start to finish to lose majority of it so fingers crossed for you all but if it does start don't do what I did and torture yourself for an extra day looking at the very grim reflection in the mirror of it I should have probably done it that evening x but never mind I can say to you all that bald is def not as bad as the glum look I looked like I was dying!!!!
Stay strong hair buddies xx

[feelthefear]

Hi mishy. I think you're right, glam is the way forward. Some of the turbans are gorgeous.

Maybe if mine goes I'll try to pull off the kylie look (wishful thinking).
Well done getting through round two. Xxx

[riversidedawn]

Aww Mishy so sorry it didn't work for you. I was lucky, I can't say I understand how you feel but I'm trying to. You sound very positive today, I think it just takes a bit of time to come to terms with it. Keep practising different scarf styles - there's lots to play with.

Keep going, slap on the make up and make yourself look glam x

[Mishy18]

Yeah back from number 2 feeling not to bad nurses said I did right thing shaving it off as probably couldn't have cold cap with that much hair loss she says my first dose was really aggressive so she wasn't too surprised I'm getting used to it now! I have my scarf like a retro turban from 40's/50's looks OK just need to wear make-up!

[feelthefear]

Sorry you've had to give up on the cap mishy. I've read for a lot of people hair starts to grow again on the T. So hopefully you won't be rocking the shaved look for long. To be honest, I've had mine cut so short in prep for a fall out I barely recognise myself anyway. Even though people say I suit it, every time I look in the mirror I just see a cancer cut.
The pain on the top of my head has stopped, so I'm hoping it was all in my mind.
The things we have to go through. 😳
On my way home from last chemo a lorry drove past and written on the side it said 'if you're going through hell, keep going'
I thought it was very poignant. We will make it through this and our hair will be back better than ever. 😀 X

[Mishy18]

Hi I had to shave it off last night it was horrendous it looked awful just matted clumps of hair with lots of bald patches it was making me ill looking at it! My head was hurting too so I decided that was it I couldn't disguise it as it was too bad x I hope you all have better luck with it than I have had got my second fec today so I'm hoping this one is better than the last x once mine started that was it so I hope you both have better luck I rang the chemo unit about it and they said as I have shaved it I can't cold cap anymore as it will cause scalp burns but to be honest I think I wouldn't have had enough to use it today anyway and the sight of it was causing me to have crying fits it just looked awful i filled a carrier bag on my last shed without what was hoovered up xx

[feelthefear]

How are you doing today mishy? Have you lost anymore?
I'm sure I lost more hair than usual when I washed mine this morning and now I've got a mild pain across the top of my head. 😳
Hoping this is not the beginning of a shed for me and it's just my hair paranoia. X

[Mishy18]

Ive lost probs 80 % of my hair today woke up with enough to make someone a toupee! I had a total melt down over it yesterday but this morning accept he fact that it's almost gone I would have shaved now but want to do one more cap for my follicles if the nurse will let me then when I get to week two it's coming off x

[feelthefear]

I'm gutted for you mishy. But as you say, the cap may help you in the long run. Hopefully the shed will slow down after this. 🤞🤞🤞

[Melia]

Awww sorry to hear this mishy. Such a shame when we u have went through the time and effort of the cold cap. I don't really have any advice as but thinking of you. This part will never be easy so definitely go out and treat yourself and make yourself feel a bit better xxx

[Mishy18]

Hi thanks for understanding I think as my next treatment is Mon I might as well do it once more then have it shaved I can't let my hair obsession hold me back in my treatment I need to be stronger than a gibbering hair wreck! So I think I will take your advice and go scarf shopping xxx

[rosarty]

Hi again. I remember that stage well and the hair falling out was by far the worse part for me. I decided what was left didn't bare any resemblance to my hair or me.  Once I'd decided to clipper off I found it much easier to get on with treatment and one less thing to worry about. I think FEC is tough on hair. I switched my attention to my diet and eating really well and nourishing my body through all the horrid treatment. That helped me and your hair WILL come back. The thing is to get on with treatment and get better. The hair issue becomes less important. People are kind and will support you through this. Go shopping with a friend and get some nice hats and scarves. I got the wig but hardly wore it. Just wasn't me. Treat yourself to some lovely skin and makeup and hair products. I switched to plant based products and avoided anything with strong chemicals. 

Dig in you will come through this. Best wishes. X

[Mishy18]

Hair update no 3
Well my hair is abandoning me as a speak bald patches all over there are clumps strands keep failing I'm absolutely devastated tbought the cold cap was going to help me keep it, it's matted and needs a wash but I am literally scared to wash it incase more falls out having next treatment on Monday and don't know whether or not I should go for the cap just once more for my follicles or whether I will have enough left 😞
I desperately wanted it to work in their eyes they will probably say well but you still have hair but what is the actual point when it looks like this x

I need to get my hair to the back of my mind so I can deal with my next chemo x
Sorry for the whine ladies I hope you do better with it than I have xxx

[Duthamlass]

Cold cap didn't help me at all. Stopped after first fec. However good luck!

[Mishy18]

Thanks good to know, you know I have said I will persevere once more as you said you believe the cold cap helps with new regrowth which was what bothers me most, but I I will do the shave once bald patches appear as with thick hair it can be more visable at least I know the Fec is working as I will lose everything to prevent a recurring cancer x