Cold Cap - did it help keep your hair?

[rattlesnake]

Hi everyone. 

I'm exactly a year on from diagnosis and happy to report I have a full head of healthy hair largely due to perservering with cold cap.  If you can face it its worth doing, and I'm very grateful to the friend who told me about it. 

Like others - it was a HUGE deal to me losing my hair...I had kept my illness secret from all but my nearest and dearest, because it seemed less scary that way. 

My lovely hairdresser cut my hair into a cute bob ahead of 4 cycles of chemo, and I was delighted it stayed same length and shape over 4-5 months (small perk!).  In the end about 40% fell out, mostly thinning at the crown, not noticeable to most people. I had very thick hair to start with, washed it gently in the bath rather than shower (though not sure if this made a difference) with regular shampoo and conditioner, regular brushing.  

My treatment was during winter months, so had to buy wooly hats to make up for lost heat through hair  

A month or two after chemo ended it started growing and now I have 3-4" of perfectly healthly baby hair 

As some others have said, using the cap is tricky but gets easier - imagine putting your head in a bucket of ice - then pull the chin strap tight! I was advised to cover my head with conditioner ahead of putting cap on so hair doesn't stick to cap when its taken off. 

It worked for me, I hope it does for you too

Best of luck X

[Lucy Lu]

Thanks for your responses.xxx

[red_robin]

Keep going ladies! I kept 40% of my hair and it looks really good now 3 months later! Well worth keeping it going! Xx

[riversidedawn]

Well done ladies, keep going! I do believe that if hair is going to come out then it will, so wouldn't worry about the wig pulling on it. I only wore mine a few times for parties and school visits! Other than that I wore a loose ponytail which allowed for a comb over for thin bits.

It started growing back as soon as it had come out, so by the end of chemo (April 2015) I had 2 inch layers throughout my hair which thickened it up. I had it trimmed to a short bob and scrunch dried to make it look thicker. A year on and I have better hair than I did before - now having layers cut in as looks much better than before chemo !!

[Kathymac]

I have just finished round 2,Taxotere and Cytoxan with 2 more to go. I have lost about 60 % of my hair . I am curious if wearing a wig is putting more stress on the hair? 

[Lucy Lu]

I am using the cold cap and have one more T left to go. I have list about 60% of my hair and am currently wearing a wig. I still want to carry on with the cold cap because I think that when my hair begins to grow it will only have to fill in the gaps. Is this true or just me kidding myself. I am not sure if having half my old hair and then new regrowth that I will actually look worse than if I had used the cold cap

[Lou-L]

Hi I have one more chemo session left to go. I bought a wig but it made me feel really down when I wore it and not myself even though everyone told me it looked good I thought it was really obvious. Instead I have opted for head scarves and have bought all of mine from this site. They are about £5 each and arrive really quickly - I have about 12! They are hand washable but on a good day dry very quickly on the washing line.

http://www.theindiashop.co.uk/index.php?route=product/category&path=64_118

They have a great range of colours, are cotton and 100cm square. I fold mine into a triangle, tie once at the back and bring the ends round to the front and tie with a knot. I tuck the tail into the back and have found it to be secure enough. I can choose my look for the day and feel much more like me.

[LollyDolly]

Hiya, just thought I'd share me experience of cold cap as I know how much of a massive deal it was for me potentially losing my hair... More so if I'm honest than having the mastectomy!
Well, I'm pleased to say that I have just completed 6 cycles of TCH and still have a full head of hair. I've got minimal thinning at the top but it's not noticeable to anyone else. I had very thick hair to start and cut it from waist length to a chin length Bob before I started. I have continued to use my regular shampoo and conditioner but just wash once a week, and like others have said, use dry shampoo when needed. I fuss with it as little as possible but have used straighteners occasionally on it. I have lost strands and somedays it seems more than others, but I have not lost clumps.
The first 5 minutes I found the worse..if you can preserve through them, it does become less uncomfortable. As some other ladies have said, I took paracetamol before starting and used a jersey headband for forehead and tops of ears. The fit is important, the tighter to scalp obviously the better. The chin strap is tight and the day after my cheeks and chin would ache slightly, but it's manageable.
I am so pleased that I tried it and pereserved. I've been very lucky. I've got a beautiful wig here that I never needed to use thankfully, but I had to prepared incase it didn't work.
Good luck... Really hope it does work for you.
With love xx

[T]

Hi,

It has been so helpful reading your past threads and reassuring to know you are not alone with the horrible prospect of losing your hair!

I'm about to start my Chemo next week and will definatley be trying the cold cap (tips about scarves to cover your neck etc are great thx)

Ii have Just ordered a load of different style of scarves - can anyone recomend a good website other than amazon please, quite liked annabandanna :-/ And will get a wig just incase i think. Also, can i ask if anyone would recomend wearing a night cap?

Feeling a bit emotional this week - bit weepy about the prospect but also guilty putting my husband and teenagers through this - it's not going to be pretty is it?

Thank you to all for posting your experiences x

[Elizabeth.p]

Christine just read your post ...took my breath away.    Have just finished 4 x 3 weekly AC and 12 weeks of weekly taxol and cold capped throughout.  My hair was a thick healthly regularly coloured Bob.  I am happy yo say I have retainined about 60% of my hair. I did have it cut short though because I have not been string it at all and it looked a mess .  I have also had it coloured twice used Daniel Galvin bought on line it's organic vegetable based.  It covered reAlly well and did not irritate my scalp. Onc said was ok to give it a go.  I also took lorazepam during cold capping which made it bearable. You may be able tog get that prescribed for you.  If I was you I would give it a go because if you feel confident about ur hair it may help u forget sometimes that you are ill. Very best of luck. Elizabeth 💕

[ChristineNoble]

Awwww thanks for quick reply ladies , still undisided ?as I have my hair coloured regulary , so not sure if I could stand roots growing through or grey hairs ? lol. As I have my hair in a short bob there is some quite nice human hair wigs in the reddish colour I usually have & as I have to style mine almost every day with hairdryer & straightners really don't know what to do as yet ? thanks for your advice , see how I feel in the morning ? Anything else to add please do ladies , any help / advice is most welcome X X 

[marli]

Hi Christine - sorry to hear your dx. You sound very positive and believe me that makes a huge difference.

Having lost all of my hair 7 years ago I didn't want to lose it again when I was dx with a recurrence.

Personally I would go for the cold cap. Yes, it can be uncomfortable but forewarned is forearmed.

Paracetamol an hour before , good hairband to cover ears and forehead, scarf to go under pipe at back of neck and lots of hot drinks.

Use simple shampoo and conditioner and wash only once a week. Sleep on a satin pillow case to avoid snagging.Be prepared for what looks like a LOAD of hair shedding - it is not as bad as it looks and by the third treatment starts to slow down.

Look back on this thread for lots of advice and information.

the website cancerhaircare.co.uk is a mine of information and you can get a leaflet from The Lister Hospital through them which is all about scalp cooling.

Give it a try, as you have nothing to lose (excuse the pun).If you can keep your hair it makes you feel so much better.

Good luck. Positive thoughts and hugs coming your way.  Marli x

[riversidedawn]

Definitely worth a try. I was told to use hair products free from colour, fragrance and parabens. Got some organic stuff from health shop but then moved on to an essential "naked" one. Don't dye hair til after chemo - this is more because of infection risk if you have a reaction to the dye I believe. I'm just over a year passed chemo and hair good and strong - better than before, although greyer!

[ChristineNoble]

Sounds quite promising ? Having treatment every 3 weeks for 18 weeks , so 6 sections of chemo , heceptin & something else ? maybe worth trying for such a short period , what do you think Michelle ? What about shampoo, colouring your hair , what do you use please ? X

[ChristineNoble]

Hi Kay Tonks & other members , this is all a shock to myself & family ( to say the least ) diagnosed 7 weeks ago with terminal cancer . Secondry , which had started in breast & spread to bones & liver ! After having a fractured hip & femur removed along with some pelvis area , start on Chemo tomorrow , so all new to me ? I wasn't going to bother with cooling cap as didn't think it actually worked ? But nurse who did the pre-assessment today really thinks I should try it , so need to decide over night ? I do have lovely thick dark her in a short bob of which people always comment on . I am 54 yrs young , any advice pleassssssse ? Had a rough time with operation with pain , other wise feel ' normal ' . no crying , panic or anything really ? infact I've been really comical at times ! Family & friends keep staying how brave I am & how well I look ! I just laugh & say well nice to know I look good now I'm dying ! Can't descibe how I feel , as don't really know ? Is something wrong with me , any one else feel the same ? many thanks X X

[Alexisb]

Hello All newbie here. I am on day 11 of cycle 3 of chemo have cold capped and found the first 5 mins horrid but then it calms down and it feels like l am just out on a cold day. I have managed to keep a lot of hair,l am not good at percentages. Suffice to say l don't need the (expensive ) wig but hurrah for that. I have a thin patch on my crown but wear sunglasses on my head all day and evening and it takes the eyes away. Everyone else swears it is not noticeable. I only wash it 1 x week with simple and use wide tooth comb. Lots of upside down spraying of dry shampoo and careful patting. Good luck everyone

[kaytonks]

Hi, I too will be starting chemo soon, and herceptin, this has all been a total shock, and in need of some support and info x hope you get on ok hun x

[Michele01]

I thought I'd post something positive after being so concerned last week! I started shedding on day 19 of cycle 1 and it continued into cycle 2 for a full 7 days before slowing down. On day 6 I lost so much that I literally thought that it was never going to stop. My hair was thick to begin with (thank goodness) but I lost an enormous amount - it was literally coming out every time I touched it in multiple strands rather than clumps - on day 6 I had 3 hair balls the size of tennis balls (when I compressed all the hair together).

Day 7 of shedding, there appeared to be less coming out - although it was still much much more than normal but by day 8, instead of 3 tennis balls coming out, I've shed only a tiny golf ball!

I was seriously contemplating shaving it off because my scalp was soooo tender but I'm hanging in there and hoping that this slowing down will continue.

Overall, my hair has thinned all over but as yet there are no obvious bald patches. To everybody else, the loss isn't noticeable but to me it is. I reckon I've already shed at least 50-60% but still look normal!

I hope that this continues but wanted to document this in case it helps anybody else in the future.

By the way, something I noticed in the Paxman brochure was that they consider it a success if you don't have to wear a wig or scarf. I hadn't noticed that before and found it interesting.

[Mand123]

Hi Michelle, I was the same as you. Lost loads of hair 2nd cycle of FEC. Spoke to breast care nurse who told me to hang on in there and not to shave off as it may slow down. It did! I'm now on cycle 4 (1st T) and although I've thinned a tiny bit more it's nothing compared to what i lost. I thought it was never going to end. I tie my hair into a clip if I'm going out and I've bought some Toppix (iron filings) that I sprinkle on all over my thin bits and it's like a miracle! Looks like I've got a full head of hair again. I tie it back in a bobble at home and I wear a net over my hair at all times when in the house. I wash it once a week with simple and I never use hairdryer. Good luck Amanda xx

[riversidedawn]

Hi Michelle, I only lost hair after the first FEC, then it started to grow back again! Eyelashes waited until I'd finished chemo before falling out, but grew back very quickly.

[Tandy 4]

Hi everyone...... Just popped on to show some support. I'm one treatment away from finishing radiotherapy, started 19th May. 

But most importantly I'm 10 weeks post chemo 6/6..... 3xFEC & 3xT...... I lost about 60% of my hair and it slowed down cycle 3, slowed right down by cycle 5, however it didn't stop altogether until about start of wk 6 post cycle 6. I started getting baby hair new growth from cycle 5 ish, could feel it in parting and at sideys! Hair changed in texture from the off, became brittle, dry and very thin. I washed it once a week using Simple shampoo gently and conditioner. Used hairdryer on low cool setting and continued with my usual hairspray.

My lashes and eyebrows diminished thanks to the T cycles! But coming back now..... As is the hair everywhere else!!! Had to do my 'tash' yesterday! 😧 Am back using my epilator/shaver on my legs (but no underarm hair yet, though lady bits coming back 😒)........ AND.... today I had the CLAN hairdresser apply a semi permanent colour to my newly grown grey hair!!! It's not a complete coverage as we played safe and didn't leave on for full time as hair fine and porous, but it's looking so much better!! Was recommended to use a natural colour from Holland & Barrett first. 

HANG ON IN THERE GUYS!!! It worked for me, though there were times I didn't think I could go through it all again!! I did, and now 10 wks on my hair is looking more like my old self again. 

Thinking of you all...... It will end..... 😚 Xxx Tina 

[Michele01]

Thank you for that hun. Can I ask another question please? I'm 5 days after my second cycle of EC and have been "shedding" for a week now. Yesterday was bad and I've lost at least 50% from all over - thankfully no bald patches but thinning all over. If I lose more, I won't be able to disguise it. So my question is, did you lose the majority quickly and then it slowed down or did you lose the hair over the 14 times? Thanks in advance (and don't worry about being honest as I'm getting my head round that I may need shave it all off) xxx

[Blowthetrumpet]

I am starting chemo soon and I am dreading it. How much of an ordeal is cold capping. I don't like the cold but the thought of losing my hair is as bad as the cancer

[riversidedawn]

Michelle I shed loads after chemo 1 and thought cold cap was pointless. But persevered 14 times and lost 50% or so if hair evenly over. By the end of my 6 month ordeal I had a good coverage of new 1 inch hair which I thought was hair which had snapped off but hairdresser reassured me was new growth. Since then (14 months ago) I have embraced my natural layers and hair is better than ever!

My nurse put gauze over my thin bits from round 3 or 4 and it was fine.

[Tina Jinks]

Done....purchased off ebay. Paxman confirmed they were fine. X

[Tina Jinks]

Thankyou. It says non woven material....is that paper? Xx

[Michele01]

Found them - half way down this page.  I've found a UK website that has tons of surgeon's headgear (2nd link) why not give them a call?

http://www.globalsources.com/manufacturers/Disposable-Surgical-Cap.html   Paper ones half way down

http://www.premierhh.co.uk/medical-supplies-consumables/protective-clothing/headwear/  UK site

[Michele01]

Oh Tina I'm sorry to hear about your hair loss.  Good for you for persevering though.  I hope you manage to find the surgeon's cap and that it helps.  I'll go and have a google now and see if I can find anything for you.

[Tina Jinks]

Hi
Mines worse than that hun....ive got bald patches on my crown and hairline. Ive just spoke to the paxman lady. She suggested a surgeons paper hat to cover it before my round 3 to prevent burns. I cant find any though! I can find cotton on amazon so ive emailed her the photo to see what she thinks. My. Hospital said gauze but itd be so hard to 1stly cover each patch...then ensure they stay put in my opinion. Im not giving up though...as much as its a real endurance for me. Ive sprayed my head with loreal colour spray to disguise the patches. V good! I too am still shedding what seems like a hamster a day but im trying not to touch it....yet its addictive in a weird way! Ive not washed it for over a week....really scared to as I know tons will come out. Chin up ladies! (no pun intended....re bloody chin strap!) xxxx

[Michele01]

Marli THANK YOU.  You've given me hope where I thought there was none.  You're my new hero xxx

[marli]

Michele - DO NOT PANIC! I lost what seemed to be an awful lot of hair during Rounds 1 and 2. During Round 3 it still came out but slowed down and continued to do so for the rest of my treatment. I too, have thick hair and although it thinned in soon grew back after treatment.

I did, however, only comb it once a day with a wide tooth comb and only washed it once a week where possible.

Cold capping is an ordeal but I had lost my hair 6 years ago and did not want to do so again. It made me feel so much better keeping my hair and was worth the 3 hours cold capping.  Good luck. Marli x

[Michele01]

Ladies

Advice please - on day 19 of cycle 1 I started to lose what looks like an enormous amount of hair.  This has continued and I'm now on day 3 of cycle 2.  Luckily I have thick hair so it's not showing at the moment but I don't know if this amount of "shedding" is what most of you have experienced and that it might slow down OR if this means that the cold cap isn't working for me.  I'm attaching a photo of the loss this morning.  It seems to be coming out all over rather than in patches. 

I'm tempted to persevere in the hope that this will slow down.  Has anybody lost this amount daily for it then to slow down? 

[Tina Jinks]

Thank you all. I will persevere even though even the thought of it churns my tummy. Im going to phone up tomorrow and ask about surgical paper hats. ...then take it from there. Ive bought some loreal colour root spray today and its actually good...v happy. Cant be without headwear but feel more confident if like today my scarf slipped off while i was trying to discretely try a hat on in a shop. Was mortified but probably only me that noticed!
Got oncologist appointment tomorrow......are there questions i should ask? Xxx

[Cs66]

Hi Tina, I've commented on cold capping before and I know it is absolute torture, but I am now five and a half weeks post chemo and despite thinning and losing about 60% of my hair I am still pleased I persevered. I cannot believe how fast my hair is growing and I have now ditched the hats I was wearing to cover thin patches as I have about an inch of new hair all over plus the old hair that was left. I had a very thin patch on my crown you could see the scalp through but that is now gone. I wouldn't say I have a style and my hair is far from the long blonde it was before but it's there and that makes me feel better about myself. 

It's not for everybody and it's incredibly disheartening when you have that initial big hair loss. It did slow down although not stop altogether but by cycle 6 it was coming back. The nurses said that had I not done it I would have lost the lot!

love to all still having chrmo

claire xxxx

[mjm42]

I had the same thing happen to me and it scared me too. However, that was the worst of it. It slowed down and didn't shed like that again. I also think it was partly due to me having thick hair and not pushing the caps down tight enough the first time. I am happy to say I had my last round of chemo this week, and have kept majority of my hair. It has shed, but only I can tell. I hope you continue to use the caps and they get better for you. Be gently with your hair in between.

[mjm42]

If headbands don't work, then you may want to try form sheets. The form sheets are the kind kids use for arts and crafts, a little thicker than paper, and you cut a half moon shape to cover your forehead. I used wig tape to stick it on my forehead and it worked great! Hope this helps

[Tina Jinks]

Is there a product that you can spray on or shake on to cover the bald patches ladies?xx

[riversidedawn]

I kept around 50-60% of my hair with 14 cold capping sessions. Did lose the girly bits first, then legs and finally arms - still had to shave armpits! During the week after chemo finished my eye lashes rapidly reduced until I only had 3 on one side. Still kept my hairy toes and belly button!!!! Just so glamorous.

[Tina Jinks]

Lol so true, mines short too. Got a bald spot on my front hairline now....attempting comb overs (with my fingers,not used a comb since I started), cant wait till it slows down, please say irs worth it....no eyebrows od lashes gone yet.or body hair! Xx

[marli]

Think I would try not to touch it if possible Tina. My hair is short so a gentle comb made it half way presentable but if it is long I would wear a band or gently tie back. It's a bit like having a zit - can't keep our hands off it. lol Marli xx

[Tina Jinks]

Hi. Thanks for that info. Ill ask for gauze to cover the spot. Im tired of touching it and it coming out in my hands. Is it best to not touch it at all as i fear im making it worse. I know its all loose but should i pull it out or leave it to fall? X

[red_robin]

I cold capped. Lost 60% of my hair. It was very thick to start with and I am actually pleased with what I kept. I too had a bald patch on my crown. It was due to a session where the nurse badly fitted the caps. I kept telling her they were too big but she didn't listen! Didn't affect next capping other than that spot felt colder. Nurse didn't advice or ask if I wanted gauze on it or anything. Wasn't too bad. Just as usual as hair thins it feels colder. Hence cap 6 was a tad uncomfortable but I gee'd myself along and made myself laugh by asking if my fiancé could have a cap on for a few minutes to see what it's like. He has thick hair and had it in for 5 minutes and was like oh my god how do uou put up with that! It actually made me feel so much stronger to carry on. Take a friend or relative for torture 😉
Xx

[Tina Jinks]

Ok.....is it normal? I only envisaged thinning. Not a happy bunny x

[marli]

Tina - I think the nurse might advise covering it with a bit of gauze, but use the minimal size. Perhaps make one at home to just cover that bit.  Marli x

[Tina Jinks]

Hubby just told me i have a bald patch! Will it affect next cap? Its right on the crown : ( x

[Tina Jinks]

Thanks marli. Yes i use satin pillowcases. It was the nurse who said wash it once home. My only real "pain" is the temple area . i did take a tramadol and paracetamol beforehand but didn't really help. But hey.....its my choice so i cant moan. Onwards and upwards xx

[marli]

Tina - well done for getting through the 2nd one. Personally , I didn't wash mine the same day and only washed it once a week , not really rubbing it more a slight massage of hair. Followed with a wide tooth comb and air dry. Used a satin pillow case as this stops hair being dragged. Used a wide band or buff to stop hair falling all over the place. By 3rd treatment it DID slow down and still followed the same routine.

I have very thick hair and even I thought I was going to lose the lot but it is surprising how much we have.

Stay strong and don't panic. You are doing so well. Hugs  Marli x

[Tina Jinks]

Thanks both. Just got home. Endured the cap again.... Gauze helped under chin strap and i packed some under my temples.....seems thats always the part that bothers me. Ive been shedding since day 16 and its driving me crazy. Ive only got to touch it and a handful comes out....really hope it slows down soon. Although ive got mega thick hair it still worries me. Just got out the shower and hair ball the size of a flaming hamster was left in the plug! I dont know if im doing wrong by removing the loose hairs or just leave them to fall on their own....if im going to do this i dont want to do anything wrong.
And no shivers this time...i think the dressing gown three blankets and two heat packs might of helped hahaha x

[Can-Uk]

Hi I understand totally, I'm going for round 3 on Tuesday and on day 13 after first round lost a lot, but it's totally slowed down, I've got no hair on my arms or legs, but that's a good thing.  But I so understand about how you look and feel.  I don't want everyone to know so if I can keep what's left of my hair and live in baseball caps until the end at least i'm not branded a cancer patient by everyone who sees me.  I live in a small town and really don't want everyone looking at the "bald lady" when ever I go out.  People keep saying to me it's only hair but I think it's the last part that tells everyone what your going through so at least if I can stay away from wigs I still feel a bit normal.  Good luck.

[riversidedawn]

Hope it goes well today Tina - try a piece of gauze under the chin strap, or if you have any soft fabric/felt lying around the house take that with you. I found the strap really itchy and kept pulling it down - I did wear it on the boney part of my chin rather than on the fleshy part under the chin which strangled me!!