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Cold Cap

83 REPLIES 83
Bevvy
Member

Re: Cold Cap

I really, really wanted the Cold Cap to work for me and I'm glad to read that for so many people it did. My problem is I have curly hair and that is why it didn't work.

I used it for my first 2 chemo cycles (really painful for the first 5 mintues but after that just uncomfortable and annoying!) - after my 2nd cycle my hair really started falling out which I was expecting but, as it is curly, it doesn't fall out as straight hair would, it just clings to the rest of my hair. Consequenly I ended up with matted lumps that no amount of conditioner or gentle combing (hubby did his best) - or anything could help.
I'm not bothering for the 3rd cycle as what little hair I have left isn't worth keeping and the pain and annoyance factor of the CC simply isn't worth it for me.
So, ladies with curly hair, you have been warned. I hope it is a different experience for you but this was mine and if I had known in advance I wouldn't have put myself through the CC experience at all.

LynnW
Member

Re: Cold Cap

Hi Claire thanks so much for that, I'm same just cldnt face being totally bald either & to be that brave is truly humbling. I just wanted to to try & look as normal as I cld. I'm just waiting on 1st shed to start & pray it's not too severe. I'm trying to think cold cap is only 4hrs every 3 weeks, a horrible 4hrs but doable (just). Thank you ❤️ XXXX
Cs66
Member

Re: Cold Cap

Hi Lynn, I'm 3 and a half weeks post FEC T chemo and cold capped. I very nearly gave up,after number 4 but stuck with it and I'm glad I did. My hair thinned a lot about three weeks after the first chemo but after that I just shed hair gradually. I did not have any bald patches just thin and wispy hair. It started to grow back after my second T and is now coming back really quickly as I thnki the cold cap protected the follicles.

dont expect your hair to look like it did before as it will thin, but long term you will have a head start and new growth will be quick. I could not have coped with being bald and I have total respect for those who do. Cold capping was hell but it was something I had control of that at least reduced one of the many horrible side effects!

i am now using a shampoo called grow me and I even had my hair trimmed last week to get rid of the straggly ends. It's not the long blonde hair I had before but it is hair on my head!!

Good luck with it and don't be too disheartened by the initial hair loss

Claire xxx

LynnW
Member

Re: Cold Cap

Ok does that just happen the once for initial shed ? & subsequent shedding it doesn't ? Sorry for asking daft questions, just waiting for 'the 1st shed' & hope it's not too severe !! Xx
riversidedawn
Member

Re: Cold Cap

In my experience the tingling just lasts for a few days before the hair sheds then it goes away.
LynnW
Member

Re: Cold Cap

Well that's good to know I have had tingling etc but it's still there !! After u thin does the tingling etc stop or does it continue throughout till chemo is finished ? Xxx
riversidedawn
Member

Re: Cold Cap

Absolutely, I managed to cold cap 14 times - 11 of those were weekly, tough but glad I did it! A year on and my hair is thicker and better condition than ever.
LynnW
Member

Re: Cold Cap

Hi riversidedawn thanks I was thinking God maybe cold cap didn't work & it's all been for nothing ! I think yr more paranoid than anything else the slightest tingle & yr thinking the worst fingers crossed its ok ❤️ Xxx
riversidedawn
Member

Re: Cold Cap

Hi lynnw, yes that feeling is normal, you may start shedding some hair for a few days. Don't be disheartened you won't lose all of it, just be gentle with it, most of us thinned all over without bald patches. Sending virtual positive vibes x
LynnW
Member

Re: Cold Cap

Hi folks I had 1st fec nearly 2 weeks ago (b 2 weeks on Monday) I have heard that u cld shed 2 weeks after 1st I cold capped but since last night I have had an aching scalp like if u tie yr ponytail too tight is this normal ? Or does it mean that's what happens b4 it sheds just trying to prepare myself thanks for any advice ❤️ Lynn xx
scoobydavies
Member

Re: Cold Cap

Hello everyone X just wondered if anyone had any tips for greasy hair after cold capping please? My fringe looks stuck to my forehead and I need a fringe lol xxx
riversidedawn
Member

Re: Cold Cap

Hi Ccann, yes it is advisable to wear a hat to protect your hair and scalp. You may want to wear a hairnet in bed to prevent catching of pulling your hair at night. You can also get wide head bands to cover any patches.
Ccann
Member

Re: Cold Cap

If I start balding when old capping can I wear a hat, also outside to protect my head from the sun. I know I may lose more by wearing a hat but if I have noticeable bald spots I don't want them to show. I just want it to grow back when I'm done. I have a lot of hair but it is already thin and fine without chemo
helen1971
Member

Re: Cold Cap

 
waiting
Member

Re: Cold Cap

Hi everyone,
Thanks for this I will have a look on the site you suggested.
I was advised not to use cap yestetday as may get frost bite now. Time for an even closer crop for me as expect rest going to fall out inspite folliing advise about gentle shampoo etc
Redgen .... on a positive note there was women on the chemo unit yesterday who was on her 5th treatment who still had a full head of hair!
I think just depends on individual biology. Cold cap works tor some hair types not others. For me definately prolonged the hair loss till EC 3.
Good Luck girls.
xx



Redjen
Member

Re: Cold Cap

Hi, I started my first fec-t (6 sessions) on January 15th using the cold cap. Last night my head was so itchy, is this the start of hair loss? Is there anything you can use to calm it? I am using the paxman cold cap machine, shampoo and conditioner.
Sunshiney
Member

Re: Cold Cap

Hi all,

 

I am 6 weeks past my last FEC and cold capped the whole time. Lost about 2/3 and almost all on the back. Now I have dark layer of half an inch on the top of my head and starting to see new hair at the neckline, so I think coldcapping does protect the roots. It seems to just gone wild and wants to grow which is really great! I used very mild shampoo and conditioner during the treatments and only washed once or twice a week and combed as little as possible. It keeps sheding but be patient, not all of it comes out necessarily. Good luck!- Sunshiney-

marli
Member

Re: Cold Cap

Can I suggest the cancerhaircare.com site. It has loads of information about hair and cancer. There is a section on scalp cooling and a link for a booklet about it. It gives the pros and cons as well as information on looking after hair if you do have the cold cap. You have to request it by email because the download is not available from the site direct but it is worth it because of the breadth of information given. Marli x

waiting
Member

Re: Cold Cap

Hi Everyone,

 

Ive cold capped for EC 1 and 2 and Im due number 3 tomorrow and just not sure if its worth continuing with the cold cap as my hair started to seriously shed 3 weeks after the first treatment and has continued ever since. My hair (like so many of us) has gone on the top, at the back and there's a bald patch at the side also. I've had it cut very short as hair falling in and onto every thing was getting me down. What is left is not worth having and looks such a sight so Im covering up with pretty scarves, hats etc.

 

I had made the decision to shave but  just I carn't. I've read  somewhere that cold capping improves the condition of the new hair when it grows back. Does anyone know know if this is actually true and evidence based or just works for some and not others.....

 

 

 

xx

 

 

riversidedawn
Member

Re: Cold Cap

Hi Fozzie

My hair began falling out like yours after 1st FEC, it only thinned, I had it cut from bra line to shoulder length before starting. Then when it thinned I've gone between jaw and shoulder so I can still tie it up in a comb over pony tail to hide the thin top. I have not bald patches and did not lose any with FEC2 or 3. I'm day 20 now after 3 and about to start taxol. So don't go too short as you can disguise any thin bits so easily!

 

I was told to use shampoo and conditioner with no perfume or colourings and as natural as possible. I've been using an organic one from the health shop. Don't know if it makes any difference at all. My nurse said the no perfume bit is really because of nausea SE not for any other reason.

 

Hope it settles down. x

FozzieBear
Member

Re: Cold Cap

Hello,
I had my first FEC on 29/12/14 and never lost anything until 2days before second FEC on 19/01/15. It is coming out as I run my fingers through it and feel significantly thinner in 3 days. The nurse said she couldn't see any abald patches, so I will persevere and cross my fingers. It is my first real side effect of the treatment so I suppose I shoudn't complain and I knew it was coming but I was still quite upset when it happened.
I am due to getmy hair cut before my next cycle and I am considering getting it cut above my shoulders, but I know that will drive me nuts. I know everyone is different but there is o where that says what length is best. Or indeed which conditioner is best. The Naked one was suggested but I don't why.

Does anyone know the length of hair that is best and any information on the conditioners for cold capping?
Regards
Fozzie
Leyanne
Member

Re: Cold Cap

Thank you everyone for your replies. I have started to use a tinted dry shampoo which is really helping me to disguise the bald/thinning patches. I was with a group of friends yesterday who were amazed at the difference. As a result of your reports I am definitely going to continue with the cold cap. Good luck to anyone else going down this route. Leyanne .
nicnac15
Member

Re: Cold Cap

Hi there just reading your posts im about to have my 5th treatment with the cold cap glad ive done it i had dark brown hair past shoulder i have cut it to shoulder length and i have lost it on top and back of head but glad ive still got some left . I wear a hat when i cant be bothered to wear my wig, and like some of you said once your past the first 15 mins or so i too get used to it and doesnt feel that cold. Keep going it can be done good luck xxxxx
Border_Collies
Member

Re: Cold Cap

Hi Leyanne,

I am nearly two years passed my last FEC and I too cold capped and managed to keep 50% of my hair which started FEC as a chin length straight blonde bob.  Never wore my wigs and always had enough hair to appear normal.  Did get some very thin patches but was always able to disguise these.  I never told anyone other than my husband and children that I was having cancer treatment and because of the hair, no-one ever knew.

 

When the thin patches started to sprout new hair it was coming through very grey so 6 weeks after chemo ended used a semi permanent hair colour (Naturetint from Holland and Barrett).  Colour worked well and the new hair came through straight just like my own hair.  I think you have more chance of your hair regrowing straight if you have cold capped, because the hair folicles are protected.  Without cold  cap protection the follicles becime somewhat "altered" in shape and c urly hair results.  Therefore, in my opinion, the moral to this story is to persist with the cold cap.  It's only really uncomfortable for the first 10 or 15 minutes and so worth it to keep your hair.  Good luck with your hair. I remember how important it was to me to keep mine.

 

B.

Sunshiney
Member

Re: Cold Cap

Hi,

 

It is 6 weeks past last FEC and I am anxious! It looks that the hair has started to grow back and it looks to be very dark. I kept my fringe and thin layer all over but lost a lot of hair on the back after the last chemo. I had shoulder lenght blond hair. I just want my old beautiful hair back, this is very frustrating. But it is worth coldcapping, you will not go totally bald. That was important to me. Saw one lady yesterday who finished chemo at the same time than me and went totally bald. Her hair had started to grow immediately after the last 3 weeks past last chemo but it looked to be very fine baby hair and just a hint of it. Good luck and lot of strenght with your process. I hope I have a short twiggy at least by summer.- Sunshiney-

Leyanne
Member

Re: Cold Cap

Hi Rebecca,

 

Thank you so much for your post. It is really encouraging to hear from someone who has been through it and came out well at the other side. I fully anticipate having to have my hair cut later on to match the new growth but wanted to keep as much hair as possible until I get to that stage. The rest of my hair has already lost a lot of the gloss I used to have but I still feel it is worth keeping until the new growth kicks in. Fortunately being winter I can get away with a woolly hat when I go out and my fringe and rest of the bob sit as normal so no-one knows. It has been a long time since I had short hair so it will be a novelty for me.

I will definately persevere with the cold cap I found that after the first 15 mins your head is so cold you don't really feel it but thanks for the warning that it might get worse for the last two sessions.

I really appreciate you taking the time to post a reply as I could find quite a lot from people going through chemo but very little for those who had finished and had continued using the cold cap so many seemed to give up.

Thanks again, 

Leyanne xx

Mysticalmoo
Member

Re: Cold Cap

Hi Leyanne
I completed 6 sessions last July and used the cold cap throughout. I lost a lot of hair on the top and back of my head but kept a full fringe, the nape of my neck and a tuft I the top! Very strange. I used a range of scarves from annabandana.com to cover my crown and a wig occasionally.
I am now sporting a thick full head of hair that's about 2-3 inches long. I had mine cut to a crop of about 1 inch all over (leaving my fringe) in the middle of chemo which actually seemed to slow down the hair loss as I think the cold got to my head more. The pain on the last 2 sessions was awful but after 15 mins each time became bearable. Once it started to grow it filled in within 4 weeks and in a fact I had a stubbly covering before my final chemo session.
I have had it cut 3 times now to be short at the back and am letting the top grow out - it's already almost covered my ears and to be honest no one would know I had lost any now. I had very thick, straight hair down to my bra line before cancer, the new growth is as thick, the same colour and looked fine in amongst my "old hair".
The thing I found was that the old hair became very dry and brittle so looked better once I bit the bullet and had it cut off - my first proper cut was very short! I traded short healthy hair instead of longer straw-like fuzz. I have never had such a short drying and styling time for my hair before - very liberating! But I can't wait till I get a shoulder length bob back!
Good luck to those of you still going through treatment - persevere with the cold cold cap if you can. The pain is worth it and helps you feel some control over this horrible roller coaster.
Wow that was a long post but if you're like me, I craved information from those who had gone before me...
Rebecca x
Leyanne
Member

Re: Cold Cap

Thanks Marli, I'll have a look, seems like a good idea.
marli
Member

Re: Cold Cap

Regarding thin patches on scalp, someone on here mentioned using powder to help disguise it.Their's was about £25.  Looked on amazon today and there is one that is only £5.99 and has good reviews so might try it when the time comes. Thought it might be worth a mention. Am having No. 2 tomorrow and used the cold cap last time and still have most of hair although  is falling out a little. Will use it again tomorrow. Was able to tolerate and even had a layer of ice on it when it was removed. lol   Marli x

Nutty75
Member

Re: Cold Cap

Hi leyanne - I've just finished my 6 cycles of Fec-t - I have kept my hair just below shoulder length - it is thin and I am hiding bald patches - but I think I'm going to leave mine and see what happens- I really didn't want to be bald - and I think once it starts to grow I can clip new hair back. It hopefully won't be too long to wait before it can be tied back in a pony tail . From what I've read cold cappers hair grows back quite quickly - fingers crossed xx
Leyanne
Member

Re: Cold Cap

Thanks Riverside dawn. I was coming my hair over at first but now the loss on top has spread to the sides so a comb over no longer works. Hiding the loss at the moment with a wide headband which is OK at the front but you can still see a gap at the back.

riversidedawn
Member

Re: Cold Cap

Hi Leyanne, I've had my hair cut to a bob too so I can do a comb over to hide the thinning crown. Make sure you get a really good fit next time especuly on top.

Can't advise on hair regrowth as I'm not there yet but I would definitely keep your bob so you can hide the top, and think about going shorter when regrets happens so you blend it in.
June_BCC
Member

Re: Cold Cap

Hello Leyanne

 

Welcome to the forums. 

 

As well as the support you will receive on the forums we also have a free helpline where you can talk things through with a member of staff who are there to offer emotional support as well as practical information. The free phone number is 0808 800 6000 and the lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

 

With best wishes

June, moderator

Leyanne
Member

Re: Cold Cap

Hi, I'm new to the forum and have had 2 FEC sessions using the cold cap. Have however lost a lot of hair from my crown which at the moment I'm hiding with a wide band. I have straight dark hair in a short bob. My concern is if I continue with the cold cap, how will I look if the new growth is a different colour and curly. Will it blend in OK or will it look odd? Did your new growth blend in well with the hair you kept? I hate the idea of being bald but don't want to look odd when the hair starts to regrow. Would really appreciate others experience. Thanks

riversidedawn
Member

Re: Cold Cap

I managed number three cold cap on Friday and wasn't as bad as others. The worst thing is it drags the treatment time out. Hair is hanging In there, looks ropey by normal standards but I've still got a ponytail. Cross fingers for day 10-17 when I expect ant loss to come x
rookie
Member

Re: Cold Cap

Hi,  I had cold cap  2 sessions but it started deserting me so i decided forget cap & go for it. Had a no.4 head shave like G I Jane. I actually like it. Its so short i havent needed to touch it or wash it so its hanging in there even after 3 rd treatment. The wigs are really great looking, realistic. Go for it ,theyre worth it.

waiting
Member

Re: Cold Cap

Hi Sunshiney,

Hope you having a lovely holiday....

 

I have cold capped for first 2 sessions of EC and hair started to shed lots just before the second treatment. It came out in clumps which was very upsetting. It has continued to shed since.

Im on day 12 following 2nd EC and had my hair cut very short last week. It looks terrible though and it's getting me down. I'm tired of hair being in and on everything, dreading washing it, clogging the plug etc etc ........ Like you, I've been a highlighted blond for longer than I can remember so, 'Ive decided to accept that the hair has to go now and I'm going to get creative with wigs and head gear. For me it's for the best

.

I think the cold cap has most definitely saved some of my hair but my god it looks and makes me feel just awful.

 

C x

Sunshiney
Member

Re: Cold Cap

Hi,

 

I will keep fingers crossed for no more hairloss Riversidedawn! I lost mots of the hair with FEC, not with T...I should maybe cut the hair as well but now at least I can attach a fake ponytail..so nor sure what to do yet. Will go on short holiday first, where I can wear sun hats 😄 take care XXX Sunshiney

Karen2609
Member

Re: Cold Cap

Riverside Dawn, I cold capped weekly for 6 paclitaxel and it honestly wasn't too bad. By going weekly you do get more used to it and counting down sessions seems to go quickly. Hated my hair when I finished as it was so thin and lifeless, had a wig but didn't wear it as didn't seem to sit right with my hair.
However, three weeks after last chemo had hair cut really short and felt much better. Don't really like the style as my face is too fat at the moment with all the extra chemo weight for this style but at least it looks tidy, I can wash and dry it normally and it doesn't look like I have just finished chemo.
Looking forward to being able to colour it soon, so if you can put up with it its def worthwhile. Going to make a determined effort to lose the excess weight once my rads finish tomorrow and 8 weeks post chemo my lashes and brows are starting to reappear xx
riversidedawn
Member

Re: Cold Cap

That's great to hear sundhiney. I'm cold capping, hair thinned after FEC 1 do got my wig in a panic but no loss after fec2 (4 weeks ago) FEC 3 on Friday 2 jan after a delay caused by infection. Fingers crossed hair stays put!

I'm going on to 12 x paclitaxel and onc said I shouldn't lose hair on this but other info I've read says hair loss is inevitable. Can I cope with cold capping weekly? Watch this space!
Sunshiney
Member

Re: Cold Cap

Hi all,

 

I finished 3 Tax and 3FEC on 9 Decmber and used the cold cap every time. I saved some hair all over, very thin but when on a ponytail, can fool people that do not know me. I had shoulder lenght blond hair so now all the blond highlights are gone and left is the "lower layer" thinly. But, I have a fringe which stayed nearly as it was, which is strange but having it fools people when wearing a hat or a hair band so overall, the result is sort of ok. But now I am anxious to get my hair back, so wondering how soon the sheadind stops, it is 3 weeks past the las chemo on Tuesday. Hair still comes off (of what is left!).

nicnac15
Member

Re: Cold Cap

Hi ladies im about to have my 4th chemo which is first tax had 3 fec already and have used cold cap every time up to now i still have have but very thin and patchy at back. On top its nearly all gone but will try it again on tue.
I now have a wig which is identical to my own hair which i wear for going out in.
marli
Member

Re: Cold Cap

Thank you for your replies Nutty and Julie. Good to hear that you were fairly happy with your outcome. I had chemo 5 years ago and lost all of my hair. Had tried the cold cap the first session but it was the one where they kept them in the freezer nand changed them throughout the session and it was a poor fit. After the first one almost all of hair disappeared. They have the machine this time so thought it was worth a try. Got short hair and not sure how easy it will be to hide any thinning. xx

 

Julie286
Member

Re: Cold Cap

Hi there!
I finished chemo (6xFEC) on 1st October and used the cold cap on each session. I have to say that I found it really hard, but, persevered and am really glad I did. I reckon I lost about 70% of my hair (which was shoulder length but I had about 2 inches trimmed off). After the first 2 sessions it felt like the cap wasn't working as my hair was coming out in handfuls - I remember being a passenger in my friends car in the summer and I had to ask her to put the windows up as I could literally see hairs blowing away! However, the loss slowed and with the aid of a wide stretchy headband (they're often advertised as yoga headbands) I managed to cover the most sparse bits (across the top of my head). And for evenings out I've got lots of long narrow scarves to tie over the headband. For me, it meant that people who don't know me didn't instantly know I had cancer - and even people who do know questioned it it was my own hair or a wig!! From about session 5 my hair started to grow back in and I reckon now the re-growth is about 2 inches long. I did read that hair can grow back in quicker and stronger after using the cap - and it definitely seems to be the case with me. Like lots of people it's growing in with more than my fair share of grey (which I hated) but I've twice now used an '8 wash' colour and all seems ok. I would definitely recommend using the cap - but persevere - it might well feel like it's not working but it's incredible how much hair can come out without bring too noticeable! Good luck xxxxx
Nutty75
Member

Re: Cold Cap

Hi Marli and everyone - just thought I'd give an up date on my hair - I had chemo 5 last week and still have hair 😃. It thinned a lot - but with the help of some wow hair cover and the brown dry hair shampoo i have been able to hide my thin/ bald patches and by keeping my hair long ish (just below shoulders) I'm able to keep in a pony tail . People tell me they wouldn't notice . I've had 3 tax and 2 Fec . I also keep it in a low pony tail when I go to bed - I'm still losing a little everyday but I've been really pleased I tried the cold cap. Good luck to everyone else xx
marli
Member

Re: Cold Cap

Just had my first chemo today and used the cold cap. Followed advice found on thread and took warm clothes etc., especially making sure it was a good fit. and a was advised to use a stretchy headband to protect forehead and ears. Was able to tolerate it well and when nurse took cap off there were ice crystals on my hair. Keeping my fingers crossed it helps and will keep trying.

hopalong
Member

Re: Cold Cap

Evening all. gave my hair its weekly treat today (for 3rd time) it came out in handfulls and shower trap was full, Was dreading looking in the mirror, but not that bad. There is a bald patch on my crown but not too big approx 2cm so will definitley be using the cap again this week.

Hope everyone else is going on ok and sticking with it. x

SML1903
Member

Re: Cold Cap

Hi Angela

I didn't have long hair but a bob style and I did have cut a bit shorter. I have heard that cutting long hair does work better if you plan to use the cold cap. I did try it on my first chemo session but my hair still started coming out after a few weeks so I decided not to use it after that. I used to colour my hair but it is not advisable and I stopped straight away. I finished chemo a few months ago, my hair is slowly growing back but I don't plan to colour it for quite a long time. I still wear my wig and feel very comfortable in it. Have you thought about getting a wig yet?

nicnac15
Member

Re: Cold Cap

H nutty75 i have the fec on the first 3 treatments had 2 already they told me it was the e drug in the fec that makes the hair come out so im hoping it will slow down ive got one more fec then swap to taxoteire i think. its all so bloomin confusing xx
hopalong
Member

Re: Cold Cap

Morning the towelling turban was definitely a good move. I am in hospital at the moment with an infection and I think the stress drugs etc haven't helped matters. Head really itchy and tingling and painful when I put head on pillow. Will definitely give it another go before giving up but really don't want patchy bits hair is a long pixie cut if that makes sense. So can't really hide it if it does happen. Will keep an eye on this thread and let you know how I progress. Take care all x