Coldcap

[riversidedawn]

I echo Marli and Doglover's comments. I cold capped for 3 x fec and 12 x weekly taxol from October 14 to April 15 and my hair thinned significantly, but started to grow back during weeklies. Now my hair is thicker than before and much healthier looking.

After my first fec I lost more hair than the other doses and put that down to cap not being as snug ad it should be.

[Doglover2]

The cap must be really tight for maximum effectiveness. Don't panic though I had one session which didn't fit properly...long story. ..but no ice and hair started shedding. It doesnt last long and after the first couple of treatments I hardly lost any at all. Five months down the line I have a very respectable head of hair. If you can bear the pain stick with it. I think its worth it but remember we are all different

[Katielou2]

Hi, just wanting to tap into everyone's extensive knowledge and experience re hair loss. 

I was treated with Letrozole and Zoladex March to October this year and experienced significant hair thinning.

i had first cycle of EC just over 3 weeks ago and cold capped - uncomfortable but bearable, hair full of ice when completed. No hair loss at all following this, not even usual everyday shedding.

2nd EC on Monday - cold cap just didn't feel the same, no ice on head on completion and since yesterday my hair is coming out when I run fingers through it.

So my questions are - does cold cap slow normal shedding? Am I just experiencing loss of hair that would have been lost in last 3 weeks? Should there be ice in hair on completion if cold cap effective? What time scales are typical in relation to chemo and hair loss - it seems 2 days after 2nd cycle is a little soon for this to happen or could this be from 1st cycle?

If anyone can help with info I would be really grateful.

[marli]

Glad to hear that you are giving it a try Tracy, at least you feel as if you are doing something. Yes there are different sizes and the cap must touch your head esp. the crown to work . Nurses will fit you and check it each time. I made a note in my red Chemo book of size of cap and cover so that I would know.

It might be useful to read the information about coldcapping on www.cancerhaircare.co.uk (or .com , can't remember !!) You can send for a booklet from the Lister Hospital which is really useful and informative.

Remember to take a couple of painkillers about an hour before you start the cap and have plenty of warm clothes. A scarf for under the chilling pipe is essential as is a hairband for around your hairline and over your ears.

Be prepared for losing some hair, especially the first couple of sessions - don't panic and stop. Seems a lot of hair but it does stop. Wear a scarf or band when cooking. Treat it carefully with mild shampoo and only was once a week. If you need a powder to cover thin sports it is only about £6 on amazon. Used Simple shampoo and conditioner so not expensive.

It is totally worth the effort and discomfort for a few days.

Good luck for the future.  Marli xx

[Tracy Johnston]

Hi Ladies,  Thanks so much for all this information, I start Chemo in a few weeks, dont know which type a yet, but I will be giving the cold cap a try, was a bit worried at first but your amazing stories have made me feel a bit more optimistic.  the advise about the conditioner and the hair dryer is great too.  I think I might be on Amazon a few times in the coming months for hair products.   Just a quick question about the actual cap, are there different sizes ?  Will the BCN make sure that we have the best fitting cap and then thats your size going through the treatment ?

[Sharron.spowage@icloud.com]

I have used the cold cap and agree make sure it fits not sure one size fits all , helps with hair loss on top! However combing mine over patches which is ok I'm going to carry on but got  a wig just in case and special nights out! I will keep u posted. 

[PaulS]

Same for me. I was told that using the hairdryer on the lowest most gentle setting ok if going out but if possible don't use at all. It was ok with hairdryer - I was very gentle and used it for shortest possible time. I used hair fibres for little bald patches which were great. Lost about 50% hair volume but manageable. Now clip it up until new hair a bit longer and will then get it all cut to same length. Good luck. It is definitely worth it as I did not need a wig at all. Have a lovely weekend. P x

[Doglover2]

Hi gaynor. I was told luke warm water when washing and no heat at all. I found if I sprayed my hair in the morning I could style...if thats the right word. ..with a comb. Your hair will thin and you learn to live with it. I finished chemo six weeks ago and already my scalp is covered and its thickening up. If you can bear the torture stick with. ..its worth it. It a journey you are on and you can't change it but its weird how you learn to live with the changes it brings in other ways....good luck joyce

[riversidedawn]

Sorry Gaynor, didn't answer your question, yes I used low heat hairdryer, but only once or twice a week. Lots of conditioner all organic, or free from colours and perfume.

[riversidedawn]

Gaynor I feel for you. I cold capped November to April, 3 x fec and 11 weekly taxol. It's hard but worth it. I lost probably 50% of my hair weight overall and managed with a comb over, bun, and occasional wig at my daughter's insistence x

[Gaynor1]

Hi ladies,
Can I ask if you used a blow dryer during your treatment at all. I've been told today that I can't use it at all even on a low setting. Hair started to shed quite abut today prior to today's 2nd session but I'm planning to wash in the morning so just wondering what today. There is no way I can go out at all if I can't blow dry it as I look like a frizzy bear! I will have to collect my wig.

[Doglover2]

Hiya...my hair started shedding just before chemo 2 and for the next week the hair loss was at its greatest and then it slowed dramatically. Its a difficult journey and am so glad I continued with the cold cap which was due to encouragement on this site. Lost about half but didn't need wig. Good luck with it. The cold cap isnt pleasant but if it works you...stick with it but don't forget the pain killers. I used simple shampoo and conditioner and am now Using nioxin...wonder if nioxin is too harsh during treatment. ..might be best to check the chemical content. ..oh and make Sure cap is a tight fit x

[Gizmos-mum]

You will probably continue to lose hair, cold cap worked front back and sides. I lost a lot from the crown where cap fitted less well. Where it fitted tight at front, I kept my fringe throughout. That was 2 years ago. Its not forever!! Now have full head of thick hair again. Forget fancy shampoos etc it seems to be how much chemo gets to the roots of your hair, hence cooling to send blood supply away from scalp.

[PaulS]

Interesting that we were given different advice! But great that it seems to have worked for so many of us.
P x

[riversidedawn]

Absolutely keep coldcapping ladies! I finished in April, 3xFEC and 11XTaxol. I lost about 50% of the weight of my hair after the first FEC and no more loss after that, in fact it started to grow back very quickly! I took strong painkillers 1/2 hour before going under, and was told to put neat conditioner on my hair - not wet it first. I always washed my hair straight after, and tried to keep it to once or twice a week. I used organic, no colour, no perfume shampoo and conditioner - and still do.

Hope that's helpful x

[marli]

Hi Gaynor - I finished chemo in March and used the cold cap. My earlier post mentions cancerhaircare.com which give loads of information about scalp cooling and which I found invaluable. I found that I was losing quite a bit of hair for the first 3 treatments and then it slowed down.Keep going, don't give up as it is really worth it.

 Having lost my hair 6 years ago it was worth any discomfort to keep my hair which I did. It thinned quite a lot but not enough to have to wear a wig etc. Did wear a wide band or scarf when cooking.

As Paula said do not wash too much and treat it very gently. I used a fill in powder (£6 from amazon) where it did thin, especially at sideburns.

Good luck and keep cold-capping.  Marli xx

[Gaynor1]

Thanks PaulS, I will have a look. I use nioxin atm which helps with thinning hair. Good tip about the hat after treatment as I didn't realise last time about the ice on your head afterwards!!!!

[PaulS]

Hi there,  I was told to buy NAKED conditioner from Boots, and to use that for both the cold cap sessions and when washing my hair. I bough Naked shampoo as well. It is pure and has no additives, perfumes at all.  I was told to wash my hair much less frequently and to be very gentle with it.  No products, no straighteners, no curlers etc.  Only the lowest setting on the hairdryer - but again better to avoid this too if you can. 

Before the chemo you soak your hair with warm water then apply the conditioner. When you take the cold cap off, the hair is frozen, so have a hat to wear home, then just leave it to thaw out and don't wash until the next morning.

I came to HATE the smell of Naked products, so was told to buy SIMPLE which I still use. P xx

[Gaynor1]

Oh and a 2nd question should I beicing the conditioner with water before it is sprayed on my hair prior to the cold cap or should I be putting neat conditioner on my hair?
Kind regards
Gaynor x

[Gaynor1]

Hope you don't mind be butting in but I have just started this chemo lark and am due my 2nd on Friday. I have used the cold cap once and intend to thorough out . My question is this, my hair over the last couple of days has only just started shedding but not very much so far and only when I brush it. How much should I be prepared for and will it accelerate after my next session? (I'm having 4 x TC).

[PaulS]

Hello ladies.  I used the cold cap and finished chemo on 2nd January.  My hairdresser reckons I lost about 50% of my hair, so it was definitely thinner but still there!  I did not have to use the wig, and was able to work throughout.  A couple of little bald patches on top, but used hair fibres and setting spray and they covered them fine.  My husband did this for me every time I washed my hair.  My new hair began to grow in immediately, and I feel as if I have a complete coverage on my scalp now. It is almost like a little helmet - it feels a bit bushy - but apparently it looks fine and there is enough of the original hair to make the overall appearance OK.  It stopped falling out about 5/6 weeks after chemo ended - now just normal loss. I was told to used a water-based colour and my hairdresser has done this twice now and it is fine. I think it was complete torture, but worth it, as I never had to see myself in the mirror with a bald head which would have reminded me all the time of the cancer.  I had bought caps and scarves, and lots of the hair fibres but gave them all to our local Maggie's Centre unused. I also got a wig, but never used it and will give it to the wig depot to pass on to someone else.

Strangely, I am struggling more emotionally than I did throughout diagnosis and surgery and radiotherapy and chemo. It seems to be a case of, 'My God, what has just happened to me?'.  But I'm told this is normal.

[Pinkbaglady]

My treats have been a Benefit blusher - I don't usually buy expensive make-up but I'm very pleased with it! A scarf and some popbands for my hair.

[riversidedawn]

Glad the chemo's over doglover and marli you're recovering well. I get a bit confused when the do a full mx even though the tumour has shrunk to nothing, but I guess if you've had it before it's a precaution.

I finished chemo on 10 April and haven't lost anymore hair. I've read that Tamoxifen can cause thinning but fortunately mine is still growing and thickening up nicely.

I'm with you pinkbaglady for Tuesday finish. What treats have you been rewarding yourself with? My hospital have given me weekly reflexology and relaxation session. On Tuesday I'm going horse riding with my daughter and have booked a massage later too!!!

[Pinkbaglady]

Great news the chemo is over and the cold cap worked, Doglover.
I'm 8.5 weeks past the chemo now, my hair is still shedding especially when I wash it but most people say they can't see any difference to how it was before. Fingers crossed it stops soon.
I'm hoping to have mine coloured at the beginning of September. My hairdresser has done another skin test and I had no reaction to that and she will be using a non ammonia product to do it.
Doglover, I have 2 more rads to go - I finish on Tuesday next week. It's been a walk in the park compared to the chemo and surgery. The hardest part has been the daily 48 mile round trip. I've given myself a treat at the end of each week, to help me through the awkward and tedious travelling.

[Doglover2]

Hi marli..glad youve had good news and are firmly set on the homeward strait...its one helluva journey. Cant believe how utterly horrific the chemo is on hindsight. You get on with it when you have to and its wonderful stuff just cant believe how drained and exhausted I feel. Thanks for your help. ...

[marli]

Doglover - congratulations on finishing chemo - another thing crossed off the list. Good that your hair has stood up to the cold cap. I too have coloured my hair , first time turned a bit orange ( had picked up the wrong colour!) so put a more normal colour over it. It looks ok and is so much better than the grey brillo pad look. lol

Had my mastectomy just over 2 weeks ago and biopsy showed that there was only a 2mm speck of cancer left in the breast tissue so all the chemo was definitely worth it, surgeon is very pleased. Not having radiotherapy this time as had it 6 years ago hence the mastectomy. Still having the Perjeta and hope to re-start Herceptin(stopped in March because of changes to heart)

Radiotherapy is not too bad, it's the travelling for 4 weeks that is a real pain.

Glad you are doing ok.

Riversidedawn - nowhere near Stevenage. I live in the North East, near Durham City. Found cancerhaircare on line and found it the most amazing help. You are lucky to have it near you. Hope you are keeping well too. Marli x

[riversidedawn]

So pleased the cold cap worked doglover. Marli I assumed you were near Stevenage as you've mentioned cancer hair care and Lister hospital! I'm actually only 20 mins from them so have popped into their salon a couple of times for a trim, colour and manicure!

[Doglover2]

Marli...finished chemo and so glad I stuck with cold cap coloured it last week and look vaguely normal. Questioned gauze under cap on last chemo and nurse didn't see any need. Got lumpectomy in couple of weeks but tumour has shrunk...actually disappeared so really pleased. Just wish surgery was over now. How are you doing....did you do radiotherapy. ..got that to come as well

[marli]

Doglover - how is the hair doing?  Marli x

[marli]

sorry riversidedawn, do you mean where in the country am i? Had my surgery on Monday so am still a bit vague. I live in Co. Durham. Where are you?  Marli xx

[riversidedawn]

I successfully cold capped for 3 fec and 11 weekly taxol. Probably lost 50% of the weight of my hair but no bald patches. Cancer hair care have been fab. Are you close by marli??

[Pinkbaglady]

Thanks marli. It's helpful to hear about your experience.
Good Luck with the rest of your chemo and using the cold cap Doglover2.

[marli]

Thanks for the advice on oil Doglover.

This next time you are aware and ask for her to just put something on the thin spot or you could always refuse I suppose.

Pinkbaglady - I was very worried that I was still losing a lot of hair so long after chemo stopped but as I said it has slowed right down. Even coloured my hair last week with a temporary hair colour - just my usual one although the colour did seem to "grab" a lot more so colour is quite intense but at least it is not grey. lol Marli x

[Pinkbaglady]

I'm 5 weeks past chemo tomorrow and used the cold cap. My hair thinned - my hairdresser reckons I lost about 25%. I seem to have lost a lot since the last chemo and it's still shedding especially when I wash it. Hopefully the same will happen with mine marli and it will stop soon. Fingers crossed!

[Doglover2]

Thanks marli...glad things are working out well for you. I remember you advising me to stick with the Cold cap when i first started this journey and im so glad I did. Had kept quite a lot of it until the last cycle. The liner she used covered my whole head and not just the thin bit and I think that is why there is more coming out. Just wish I had asked why and what Would happen. Now ive got less hair I suspect same will happen this time. Ive used African royale hot six oil which you can get on amazon which has kept my hair in good condition. Warm it in the microwave and massage it in and leave for a little while....youll be amazed at the difference. ..no more wiry bits!! Thanks for the encouragement

[marli]

Doglover - I have read somewhere about putting gauze on head if there are thinning/bald patches to stop damage to the scalp,  which it sounds as if this nurse has done. I finished chemo 11 weeks ago having used the cold cap and have kept the majority of my hair. Having said that it is a lot thinner and I continued losing hair until last week when it suddenly felt a lot stronger and as it was like grey wire wool so I coloured it.

I have found the cancerhaircare.co.uk site really informative , especially the section on scalp cooling - you can send for a booklet from the Lister Hospital which is really useful. Have a look to get some info before you next go for treatment.

Don't give up though, even if you have lost some more, wait and see what happens. You have done the major part, well done.

Good luck. Marli x

[Doglover2]

Can anyone help me. I had done four sessions of the cold cap and it was going really well. My hair had thinned a bit but I still had a reasonable covering. At my last treatment, without explanation the nurse said she was using an inner cap..a bit like a jay cloth...as it was thin on top..I thought this was normal but when the cap came off there was no ice on my head and I have begun to lose more hair this last week. My final treatment is on Tuesday and I just wondered if anyone else has had experience of this inner cap. Just wish it had been discussed with me and now wondering whether I am going to lose the same amount of hair as I did in the early days. BCN fobbed me off saying it would probably have come out anyway!