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Cold Cap - did it help keep your hair?

722 REPLIES 722
Snail888
Member

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

Yes of course. Nearly 6 years since I started chemo and I'm sure cold capping has moved on. But yes it really helped

TeeCass
Member

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

Hello

i am in the same boat as your description and just wondered if you were still avails for some advice ? 

xx

Sharris500
Member

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

Yes.  I saved my hair. I used Penguin Coldcaps.

Jill1998
Community Champion

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

Hi best to remove your e mail address as this forum is not a private group , anyone can access your personal information . People can send you a private message via the forum if they want to send information privately .

Hope you have success with the cold cap if you choose to use it .

 

Familyof5
Member

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

Not sure if this is allowed, but can you tell me what brand of cap you used?   If you have to email me, thats fine too [email address has been removed]

 

Thank you

kazf
Member

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

Thank you so much, it certainly gives me hope and a better understanding.

mrswright
Member

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

Good afternoon I understand all of your questions, I had the exact same ones. No I did not cut my hair short. Yes I kept my hair, it was amazing. I definitely recommend doing it. My daughter helped me with my cold capping. The nurses didn’t help, but they might have, I just didn’t ask them to. It is quite a process, you have to have a cold On 45 minutes before you start your chemo you change them every 20 minutes and yes you have to continue to do the cold capping when you get home. So it’s actually about eight hours worth of cold capping but it is definitely worth it! You can ask me any questions I will do my best to help answer them. They chemotherapy are used was Taxol and I had it weekly for 12 weeks. The day before your chemotherapy you have to put the cold caps on dry ice they have to be on dry ice for 24 hours before your treatment. You freeze them to about 25 below zero. The ones I used had great instructions that came with it and they had a good support center as well. Hopefully this was helpful, 

kazf
Member

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

I’m starting chemo in the next few weeks. My treatment sounds like it’s the same as yours. I am 37 with 2 young kids and loosing my hair is a big worry for me and thinking about my kids (as I’m sure it is for so many women) Are there different kind of cold caps? Do the nurses regularly change them during treatment and did you keep it on after treatment? My hair is a medium thickness and I highlight it once a year so it’s in pretty good condition. Did u cut your hair short or leave it long? Sorry to bombard you with so many questions! I really appreciate your support and so glad your out the other side 😊

Christiane Rochon
Member

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

My sister had chemotherapy for hair loss at first, and we were very upset about that. We asked her doctor and she said this is normal, but because my sister was very young, I was upset with her and to make her happy, I took her to the best beauty salons to have her hair done. In one of the beauty salons in Calgary, where we went to introduce my friend at https://www.beautster.com/cat/haircut-style/womens-haircut/, he taught us the process of hair care and then we got acquainted with the cold cap and My sister's hair loss was much less and she was fine

Christiane Rochon
Member

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

🤔

Christiane Rochon
Member

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

🙄😉

lassy
Member

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

I think yes..cold and frost damages the hair and it won't look good. I am a man, and I I am worried about my hair, because I want to look good. I want to save my pompadour https://menshaircuts.com/pompadour-hairstyle/ in good condition, because I am confident that my hair should look good. I try to protect my hair from the sun and frost.

mrswright
Member

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

I did cold cap and it worked, I had 12 rounds of taxol, and my hair only thinned a bit. I also iced my fingers and toes during chemo and I have no nail changes and no neuropathy. One month after taxol my eyebrows have drastically thinned and my lashes have thinned. I am 7 weeks post chemo now. I would definitely recommend cold capping.

Mrs.S
Member

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

I was due to have 4x chemo sessions on FEC and cold-capped for 3. My hair started to thin after 2nd treatment and got gradually worse, so I didn't bother to cold cap for 4th treatment.

I have quite a small head do think maybe the cap didn't fit close enough so lost all my hair.

Having said that, the cold cap was bearable - you just get through the first 15 minutes and then you're okay. It does lengthen your treatment time, but even though it didn't work put for me, I'm glad I tried it.

Much love

X

Jill1998
Community Champion

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

Thank you for sharing that positive outcome Jan .Best wishes Jill x

 

JanRN
Member

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

I just finished my chemotherapy on April 02, and have a full head of hair ! It got a little thin mid - treatment, but as of my last time, my hair is nice and thick, and has even grown 1 - 2 inches. This was SO helpful to my emotional status during treatment ! I also had a great capping team, and 2 of them always came together to help with the capping, and it was a wonderful support during this tough time ! I have had many people who were very surprised I am done with chemo - several asked me when my chemo was going to start ! It was well worth it to me.

robincooper
Member

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

For me it wasn't helpful

Can-Uk
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.

Sarz666666
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

azybro
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

Anitarose
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

Jill1998
Community Champion

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

Jill1998
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 ?

tslaptop
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??

tslaptop
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?

Jill1998
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 .

Jo3000
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

janetm
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...

janetm
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...

Littlenoddy
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 

Susanmanchester
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 

daisydi
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!

Susanmanchester
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

Annag
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 

LondonKiwi
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.

 

Multitasker
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 😩😩

illservive
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.  

 

 

lovemama
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 ???

 

Angie44
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
lorraine-1
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

Angie44
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
lorraine-1
Member

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

Any cold cap updates ?

Cria
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!

maryKamille
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   

Agill84
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
Multitasker
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 👍🏻

 

harkes
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.

maryKamille
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.
SallyG63
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.
maryKamille
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?