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Cold Cap - did it help keep your hair?

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Member

Re: Cold Cap - did it help keep your hair?

For me it wasn't helpful

Member

Re: Cold Cap - did it help keep your hair?

Hi, I’m not sure what kind of caps you have, but mine had to be put in dry ice. So we’d put all 4 caps into the ice about 2 hours before my appointment. I’d then spray my hair with plain water and put on a plastic cap and you must start putting the caps on about an hour before you start.  As I said I had 4 caps because they’d get warm and so I’d have to rotate the caps so I always had the coldest on (about 1/2 hour each).  Also you should keep it on an hour after the treatment finishes. 
I will tell you you will fell cold so bring a blanket or sweater. 
now I cut my hair to shoulder length and have very thick, so if I had to do it again I’d make sure the first round was much colder.  Now after 13 days (right on schedule) I lost about 1/3 but after the 2nd round it stoped and I never wore a wig just a baseball cap, because they say not to dye your hair until at least 6 months after finishing and I have grey hair.  
But once I finished I dyed it and trimmed it up but all in all I was happy.  
Good luck girl! You’ve got this.

Member

Re: Cold Cap - did it help keep your hair?

Hi Im starting chemo in a few days I'm desperate to keep my hair. I have been told I will lose my hair I'm having flot chemo I haven't seen anyone else on here having this one. Please tell me did you have wet hair with conditioner on before the cold cap. How long did you wear it and which cap any help would be appreciated xxxxx

Member

Re: Cold Cap - did it help keep your hair?

I think you are right because "I tended to either leave to dry naturally or a cool hairdryer setting and ran my fingers through instead of combing" Hair

Member

Re: Cold Cap - did it help keep your hair?

Thanks for sharing your experience. I am at the first stage of journey so it’s good to know that this cold cap can work. Xx

Community Champion

Re: Cold Cap - did it help keep your hair?

Community Champion

Re: Cold Cap - did it help keep your hair?

You could ask this question in the Ask the nurses " section - maybe different makes have different guidelines ?

Member

Re: Cold Cap - did it help keep your hair?

Did you condition your hair while capping?im using penguin cold caps,I’ve only used once but I was told not to condition or have my hair wet??

Member

Re: Cold Cap - did it help keep your hair?

I’ve read many success stories about cold capping I was told not to have hair wet when capping whether it’s wet or conditioner applied before capping?i actually bought conditioner just for this but was told from penguin representative to have my hair dry?

Community Champion

Re: Cold Cap - did it help keep your hair?

Thank you Jo for that helpful information .Good luck with the rest of your treatment .

Member

Re: Cold Cap - did it help keep your hair?

Hi I am currently receiving  Paclitaxol now on session 10  of 12 and have been using the cold cap .  I noticed after 6 that there was slight shedding of my hair and this has carried on but nothing too drastic.  I would recommend using a shampok and conditioner from Holland and Barrart and only was your hair once or may me twice between sessions.   When I say wash use very tepid water and just pat your hair very gently no rubbing.  Yes the cold cap does give you  brain freeze for the first few minutes I always have an anti sickness pill prior to it being switched on.  Don't dry it with a hair dryer and occasionally I will use straighteners on the very ends otherwise leave it.  The other thing I would recommend is a silk pillowcase as this helps your hair glide rather than be pulled I know the're very expensive but worth every penny.  I wish you good luck and hope it works for you should you decide to use it.

Jo

Member

Re: Cold Cap - did it help keep your hair?

I feel your pain! I’ve just started a separate post here showing my hair loss with the cold cap...

Member

Re: Cold Cap - did it help keep your hair?

I feel your pain! I’ve just started a separate post here showing my hair loss with the cold cap...

Member

Re: Cold Cap - did it help keep your hair?

Hi everyone 

I did cold cap and thought it was working but then very dramatically on day 20 of first cycle most of my hair fell out  now on day 4 if second cycle and very little left  but I'm still glad I gAve it a try  

I now look like an elderly Elizabeth the first without .wig. not the best look I've .ever had  still it takes the mind if the rest of what's going on 

Member

Re: Cold Cap - did it help keep your hair?


@daisydi wrote:

Hi I am now on day 10 of third FEC and have coldcapped for each session.  It is uncomfortable but it needs to be to do the job properly.  I take paracetamol before it goes on.  My hair has thinned but it is not patchy and I still have plenty left.  Losing my hair was a major thing for me so the fact that I still have most of it has made a huge difference to my mental well being.  It doesnt work for everyone but I would say definitely give it a go if you want to salvage some kind of normality!


Just wanted to add that one week before third FEC ie Day 35 my hair seems to have stopped thinning and there is new growth and thicker hairc on top of scalp I am so chuffed ! The highlighted strands did break but there is plenty left .... definitely worth it 

Member

Re: Cold Cap - did it help keep your hair?

Hi I am now on day 10 of third FEC and have coldcapped for each session.  It is uncomfortable but it needs to be to do the job properly.  I take paracetamol before it goes on.  My hair has thinned but it is not patchy and I still have plenty left.  Losing my hair was a major thing for me so the fact that I still have most of it has made a huge difference to my mental well being.  It doesnt work for everyone but I would say definitely give it a go if you want to salvage some kind of normality!

Member

Re: Cold Cap - did it help keep your hair?


@Annag wrote:

Hi there

i am just about to start Chemotherapy for 12,weeks . I’m having a mild dose of Chemotherapy but still have a chance of losing my hair which would be soul destroying . I really want to try the cold cap. Would love any advice possible.

thank you

anna 


I am five days in from second FEC chemo so nearly four weeks since first chemo and hair is stil here . It has thinned and losing strands but I am optimistic as next drug will be milder so need to get to next FEC without significant loss . It hurts for 10 mins then you acclimatise I just visualised losing all my hair got me through . Good luck I am nervous but hopeful will keep my hair or most of it

Member

Re: Cold Cap - did it help keep your hair?

Hi there

i am just about to start Chemotherapy for 12,weeks . I’m having a mild dose of Chemotherapy but still have a chance of losing my hair which would be soul destroying . I really want to try the cold cap. Would love any advice possible.

thank you

anna 

Member

Re: Cold Cap - did it help keep your hair?

Hi. I thought it worthwhile to share my experience having just finished 5 months of chemotherapy last week (yay!). I am 45 years old and had a mastectomy of left breast for IDC in July (with temporary expander implant which I will switch later this year).  I commenced EC chemotherapy in September and had 3 rounds (every 3 weeks), followed by 12 rounds of Taxol (weekly). 

 

I used the Paxman cold cap throughout the whole chemo treatment and have preserved my hair intact with no bald patches. Whilst I have shed strands of hair most days, and it has thinned a reasonable amount ( in my view), to the untrained eye it is not noticeable. I have short straight hair - not super thick but there was quite a bit of it and I would only colour it 2-3 times a year so it was in quite good condition and strong to start with.

 

So I can confirm that yes cold capping did preserve my hair and would suggest if you can grit your teeth and bear with it, it is worth it.  It has been very empowering especially as I have continued working throughout and whilst I was quite prepared to wear a wig and bought lots of hats I tend to lose heat through my head and can get a bit sweaty from headwear.

 

For the first one I was nervous and was nearly not going to do it as I couldn't find many positive stories on the Forum. But I watched Rachel Bland's blog and that gave me the courage to give it a go.  I took Paramol each time (an hour before) - it has paracetamol and codeine it so a bit of an extra kick. I also had reflexology to coincide with the cold cap being put on. That distracted me enough and I chatted to whoever was giving me the foot massage and that got me through that first 10 mins of freezing.  For the first one I needed to do some concentrating and positive visualisation - imagining jumping into a cold sea or lake and taking deep breaths to get through that first strange experience.  
I had heard some people throw the cap off in pain. I would not say it was that excruciating at all - more uncomfortable like an extended ice cream headache.

 

The nurses always had a heated blanket and plenty of layers on hand. Sometimes I would need them, sometimes I wouldn't.  I tended not to really eat during the chemo either but would make sure I had eaten an hour or so beforehand and not until I got home.  You may want to think about varying the conditioner the nurse put on for the cold cap so you don't associate the smell with the experience.

 

Washing wise - I would wash 2 to 3 times a week and try and natural dry as long as possible. I used a shampoo called Grow Me which you can get on Amazon: https://www.amazon.co.uk/dp/B00Q59B4UK/ref=sspa_dk_detail_1?psc=1&pd_rd_i=B00Q59B4UK&pd_rd_w=gU6aj&p...

 

I also researched good dry shampoos for in between days and whilst expensive found Living Proof (from Space NK) to be best: https://www.spacenk.com/uk/en_GB/haircare/shampoo/dry-shampoo/phd-dry-shampoo-MUK200020501.html

 

You will probably know by week 3 or so if it is working or not as if it is, it won't come out in chunks and should just be strands here and there.  Certainly makes you more house tidy though as there is always hair everywhere !

 

As for my eyelashes - they have pretty much gone now - I was using mascara throughout until about week 8 of Taxol and then they have gradually fallen out.  I now define my eyes quite heavily as a camouflage (Charlotte Tilbury Rock n Kohl)  and wear glasses so no one can particularly notice unless looking closely.  My eyebrows have thinned quite a bit but not entirely (yet) so I pencil those in.  

 

So that's me! I am happy to chat to anyone who needs support or advice.

 

Member

Re: Cold Cap - did it help keep your hair?

Hi Ladies

 

Just an update since it is 6 weeks since I finished chemo. I posted in November and explained why alrhough I cold capped, I lost 75-80% of my hair (basically didnt use it perfectly). I carried on using it the last 2 chemo cycles nevertheless. 

6 weeks on my hair seems to be growing back well. People have commented that this is quicker than without coldcapping. It is quite thick and about 2cm. There are slightly thinner patches over and front of my ears, where the cap doesnt reach so well so I can see the difference the cold cap has made. 

Sadly it is very white/grey (used to be dark brown) but Im off to buy some funky coloured hair chalk today. 🤪 

I feel brave enough to venture into public now without hat or wig.

Now IF ONLY my eyebrows and eyelashes would grow back 😩😩

Member

Re: Cold Cap - did it help keep your hair?

Hi I decided to use the cold cap - had hair past shoulder length - had 6 rounds of EC.  After the first chemo session - in perparing for the second - washing hair - the lion share of it fell out.  The hairdresser did her best and cut what was left very short - boulding on the top.  This said I continued with the cold cap - and through the chemo treatment it did begin to grow back - much to my astonishment.  When you put the cap on for the first 5 to 10 mins its very uncomfortable but after the it becomes bearable.  You will be restricted on movement because the cap is attached to the ice generation unit which is rather bulky.  I found also that I would begin to shiver during the latter stages of each chemo treatment - a blanket is needed.  I did feel that the nurses tried to discurage me from using the cold cap - it does make the whole treatment time required extended by about 2 hours.  I found I was able to mange without a wig - but this took some courage as my hair was a bit threadbare.  It has grown back very quickly as I had a headstart.  

 

 

Member

Re: Cold Cap - did it help keep your hair?

Hi my name is MelMel, I joined this forum last month.

i am receiving my treatment for secondary breast cancer in Canada, I studied in London and lived there for 9 years 35 years ago. 8-)

I am on Taxol and later on Letrozole. one of the side effects for both is hair loss.

I lost all my hair in cycle 2 and come back in cycle 5 but look like a cheap mixing grass lawn with spots grow like weed harsh and taller

I remember in 2011 chemo, forgot the protocol, also lost my hair in cycle 2 and come back in cycle 5 but looks like a cassic blue kentucy grass lawn, thick and soft .

think i will be on Letrozole daily in long term like 10 years. Would cold cap work ???

 

Member

Re: Cold Cap - did it help keep your hair?

Thank you Lorraine for the advice.
I remember I was taking paracetamol when I had chemo last time but it was it help me . I will speak to my Ancologist regarding lorazepam .
Thank you , take care xx
Member

Re: Cold Cap - did it help keep your hair?

Hello Angie

 

I saw my gp as had anxiety too about pain of the cold cap. I took 1mg of lorazapam the morning of my chemo which was prescribed. And the chemo nurse will suggest you take either paracetomol or ibruprofen 30-45 mins before cool cap goes on. I hate being cold and I honestly had no problems. Later my breast nurse told me that gps will often prescribe lorazapam for anxiety for patients going through chemo. So you could maybe discuss this? I hope it helps you and I so understand how anxious you are feeling. XX

Member

Re: Cold Cap - did it help keep your hair?

Hello , my name Angela (Angie )
Ihave been diagnosed secondary breast cancer and had surgery one week ago .<br>
In 2015 I had mastectomy and chemo . After 4 years it come back ( almost 4 years )<br>I’m confused and don’t know what to do .... last time I had cold cup but I kept only 40-50% of my hair . I’m so scared of the cold cup as much I’m scared of chemo . To keep my job I need to wear cold cup just I don’t know how .,, it’s so painful 😖 Is any one know any tablet or medication to not feel pain to wear it . Please advice . Thank you
Member

Re: Cold Cap - did it help keep your hair?

Any cold cap updates ?

Member

Re: Cold Cap - did it help keep your hair?

Hello from across the pond! 

 

I am a little over 3 weeks post final chemo (pfc) and used the penguin cold caps and had success with them!  I was looking for a little information on when to expect to see some new growth and happened upon this thread and thought I'd share.

 

There are two threads about cold capping on the breastcancer.org site, one that is before, during and after pictures and one that is more question, answer, compare experiences.

 

There is also an organization in the US called the rapunzel project and they have a nice primer on cold capping, the different caps available etc.

 

There is a woman near my home who is kind of an "independent contractor" for Penguin Caps.  She acts as a local wharehouse, so you don't have to wait for shipping, she has a team of women who you can hire to do the capping for you, and she also offers (for a fee) a class to teach friends/family members her techniques for cold capping.  She provided tips and some resources.

 

My chemo was 12 weeks of weekly paclitaxel (taxol) followed by 4 rounds of every other week doxorubicin/cyclophosphamide (aka adrimycin/cytoxan or A/C).  I bearly had any hair loss (on my head) during the taxol as that drug is easier on the old follicles.  The A/C is much harsher.  About 21 days after my first A/C infusion, I had a few days of major shedding which scared the #%$@ out of me.  After that the shedding slowed to a bit more than it was during the taxol.  I am still shedding a bit more than what I think I would without any chemo, but I do have at least 50% of my hair left.  It is thinner, but I don't think that anyone who didn't know me before would think anything was amiss. 

 

The Penguin caps do have the longest suggested pre and post cooling periods, meaning you cap for much longer, but they also have the best published results from what I've found.  I don't know if you would get the same results if you used another system for the same length of time, or if the penguin caps get the scalp to a colder temperature than the other caps, or what the secret is.  I know for the caps that have to be changed (not the paxman or dignicap systems) that Penguin has a different "gel" in their caps compared to the other four companies.

 

Luckily, I live relatively close to my chemo center, so when I was done with my infusion, I'd get everything packed up, do one last cap change and race home and finish the rest of the capping in the comfort of my own house.  My mother and two of my aunts did my capping for me, so that helped keep the cost down.

 

The woman who I mentioned above has been running her cold capping business since she did it for her sister 9 years ago and states that she has a 98% success rate, meaning 98% of her clients kept enough of their hair that they did not feel that they needed to wear a wig, hat, or other head covering.

 

I met with my radiation oncologist last week and she remarked that I didn't have a seroma at my lumpectomy site.  I reminded her that surgery was at the end of May, and it is now December.  I think she kept forgetting that I had done chemo because of my hair, if that tells you how well it worked.  That and my eyebrow wigs!

 

Best of luck to you all and know that while it is a hassel, not being reminded that you have cancer every time you look in the mirror and not having to grow hair out from scratch is a big bonus!

Member

Re: Cold Cap - did it help keep your hair?

Many thanks. I have decided to give the cold cap a miss though because people here mainly seem to have lost their hair eventually and I don't like the idea of adding 2 hours to each treatment session! Also, my hair is very fine anyway. I have an appointment with the 'wig lady' next week before I start Chemo. Have bought a couple of hats and will get some headscarves/turbans. Smiley Wink   

Member

Re: Cold Cap - did it help keep your hair?

Hi mary, sorry about the late reply I have only just seen this.

I had EC chemo which was 3 rounds, I have heard of fec which is more or less the same as EC but not too sure what the F is.

Yes, the nurses say the EC is more harmful to your hair because it is a bigger dosage as it is spaced our every 3 weeks

I am.well over half way bow and I have kept nearly am of my hair. It is only me that can notice it has thinned xx
Highlighted
Member

Re: Cold Cap - did it help keep your hair?

I have been cold capping throughout and have lost 80% of my hair. I have done 4 cycles of EC and 2 out of 4 of Docetaxel. I cant go out without covering up my head. I am glad I did it and will persevere on the last 2 in the hope that it might help my hair regrow more quickly after chemo finishes.

I think there are several reasons why it has not been a brilliant success.

1 Cycle 4 I felt quite ill through chemo and on reflection I did not fit the cap perfectly and it was turned off for a while.  Remember that it it only takes one bad cycle to undo the good work!

2 There is a clear pattern of greater baldness on the top of my head, you really need to pull the straps tight to make sure there is good contact at the top of the cap. I have a tendency to release the straps a bit to natter or eat and dont retighten them enough

3 lots of the other drug cocktails contribute to hair loss 

4 Ive noticed in the past that my hair fall out with stress - well its been 5 months of full on stress!!!!

but overall glad to have done it and keep what is left. I have little fringe which I like to show under my scarves 👍🏻

 

Member

Re: Cold Cap - did it help keep your hair?

I used the cold cap for my 1st treatment but will not be using it for the second. I have shed loads of hair off my head this week but still have my eyelashes, eyebrows etc, so I can only think it must be the cap that damaged my hair. I have followed the instructions to the letter and even had my daughter washing my hair so that she could see what she was doing better than me.

Member

Re: Cold Cap - did it help keep your hair?

I have seen this pattern in lots of the posts, Sally. Some people felt it was worth it just to keep their hair for a few more months before the inevitable happened.
Member

Re: Cold Cap - did it help keep your hair?

I'm gutted to be honest. I still have hair but you can clearly see my scalp. I can't wear hats or anything because they make me itch like mad. 5 months of chemo and I kept most only to lose a ton once I've finished.
Member

Re: Cold Cap - did it help keep your hair?

Sorry, Sally. Just seen this comment from you and I did a post already. How are you feeling about the hair loss now? Does it get better after a while?
Member

Re: Cold Cap - did it help keep your hair?

It is surprising what different people report about various drug treatments, Sally. Weren't you devastated when after all that the hair has still fallen out? Or just pleased to have kept it for as long as you did?
Member

Re: Cold Cap - did it help keep your hair?

Many thanks, Jill. I have been looking at the November thread and that has already been helpful to me. The more you know the more prepared you feel.
Member

Re: Cold Cap - did it help keep your hair?

Hi, I would say it's worth trying the cold cap. I did keep the majority of my hair throughout. It's only since I finished chemo and started letrozole it's started massively falling out.
Community Champion
Community Champion

Re: Cold Cap - did it help keep your hair?

Hello ,MaryKamille , welcome to the forum !!One of our Community Champions Blueash had really good results with the coldcap but it does really seem to vary from person to person .When you start your chemo you willl get lots of support and advice from others going through the same if you join one of the montly chemo threads - you can also ask questions of ladies who are further on in their treatment if you post on earlier montly threads .I will post you a link .Let us know how you get on .Jill x
Member

Re: Cold Cap - did it help keep your hair?

Hi Jill 1998 - I am new to Forum & just worked out that you are a CC by spotting your 'star'. I am waiting for Chemo and reading all these posts on 'cold cap'. Still cannot decide whether to go for it, or not, but these posts do cover both sides of the quandary.
Member

Re: Cold Cap - did it help keep your hair?

Hi Agill
I don't know my dosages but you mention that EC is the worst one for hair loss. I am to have FEC - or 5FU. Is the EC you mention included in that?
Member

Re: Cold Cap - did it help keep your hair?

I have only just got my treatment plan and don't see my pre-start team until December. No idea yet when treatment will start, so investigating a few things.

I went to website of cold cap manufacturers (it was in my treatment documents) and they say average chemo is 2 1/2 hour session. I have been told that my 3 1/2 hour session will be increased to 5 1/2 hours if I have a cold cap. Anyone else having that sort of length of chemo session? Also, I tried website's prediction for hair loss and although I did not have my dosages to enter in their profile (for more reliable prediction) I did have the combination of the drugs to fill in. Even so, they said only 50% chance of no hair loss - and they make these caps!. It seems a lot of extra suffering for only a 50-50 chance - of retaining some thinned out hair. Until you have had a chemo session you don't know how hard that is going to be in itself either. Any further comments or tips in helping me make that decision about cold cap, please? Like the rest of us, I would like to keep my hair - dehumanising otherwise.

Member

Re: Cold Cap - did it help keep your hair?

Well, 3 weeks PFC after 4x fortnightly EC and 12 x weekly Paclitaxel and after keeping the majority of my hair all through I'm now shedding loads and it is now very noticeably thin.

I'm not a happy bunny.
Member

Re: Cold Cap - did it help keep your hair?

Hi ladies, I started my chemo on 9th August 2018. My chemotherapy regime is 3EC and 12 paxlitaxol . I have done the 3 EC and 3 pax and pleased to say I still have a full head of hair!!!! Apparently it is the EC that really gets your hair,  they call this the red devil .The paxlitaxol causes hair loss but not as much as this is a lower dose.

 

My tips for cold capping is too be really fussy when getting the cap fitted(i am using the Pac man cold cap, I bring in flannels to pack the cap out where it does not fit. Take paracetamol half hour before y our treatment , this helps reduce the brain freeze in the first 10 minutes. Please be assured it is bearable coming from a girl that has a really . Low pain threshold.I do not put any heat on my hair and I wash it once a week with ordinary shampoo. I did buy all expensive shampoo and conditioners at first buttbecause there is hardly anything g in them my hair looked greasy after washing. I got my hair cut shoulder length as I was told less weight on hair follicles and easier to manage when combing. I also use a wide tooth comb and not brush.

 

My hair has gone quite thin but you cannot notice notice. I shedded quite a bit on my first chemo around day 20, I lost a bit on my neck line, this was becAuse the cap was not fitted right down at the back. Please don't let shedding put you off, this is norrmal and stick with it. 

 

By using the cold cap and being g lucky that it is working I feel like it has give me some control back and i still look like myself.

 

Please give it a go it is definitely worth it, also women who cold  cap with me are all doing really well with their hair.

 

I hope this helps , good luck everyone xXxX

K

Member

Re: Cold Cap - did it help keep your hair?

I just used cotton wool to keep my ears warm. They numb after about ten minutes anyway.

I kept around 95% of my hair. I had it cut short and layered to thin it out beforehand.

I didn’t find out until my last infusion that drinking something hot when the cap is first turned on helps immensely.
I used Paxman shampoo and conditioner. I did wash it every other day. I think if it’s going to fall out despite the cap then there’s little you can do about it.
Member

Re: Cold Cap - did it help keep your hair?

Ahhh, thanks Sally.

 

Lorraine

Member

Re: Cold Cap - did it help keep your hair?

Hi Lorraine,

I just used an Alice band type hair band over my ears. They were fine except I couldn't hear properly as I think my right ear must be slightly higher up my head. I had to pull my earlobe to hear properly.
Member

Re: Cold Cap - did it help keep your hair?

Can i ask the girls who've used the cc how you keep your ears warm? I can't stand my ears being cold! I will have to start chemo after my op and was thinking of trying cc as feel I'm losing enough besides my hair. Been looking online but it's all ear muffs on a band which probably wouldn't fit over the cap.

 

Thanks Smiley Happy

Member

Re: Cold Cap - did it help keep your hair?

I was devastated to be told I would probably lose my gorgeous funky purple hair when I started chemo so I decided to definitely try the cold cap to keep my hair as much as possible for me and the kids.  The first treatment was hard, and it left me with a migraine for the full first week on top of the steroid side effects but worth it.  Sadly when I went back for my second treatment the chemo nurse told me I had lost more hair in the 3 weeks than some people do over the whole chemo regime - without the cold cap!!  She said it clearly wasnt working for me and agreed wiht my husband that it wasnt worth the extra discomfort and time.  Sad for me but some people just do not get a positive result.

 

Seeing what some people here are saying I would say give it a go on your first chemo and see if it works ....if you are one of the lucky ones it is one thing less for you to feel crappy about!!

Member

Re: Cold Cap - did it help keep your hair?

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