Cold Cap - did it help keep your hair?

Going through breast cancer treatment Chemotherapy
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Thank you for sharing your experience Mumof2boys. Fantastic news that your hair is in great shape.

I would like to stress to all you ladies out there that we can only post our opinions based on our personal experience. Mumof2 has some excellent tips but please don’t worry if you cannot follow her advice to the letter. Forgive me if I’m wrong mumof2, but most of us have gone through this only once so cannot compare our results with outcomes using different methods and products.

In order to give a balanced view I’d like to add my comments from my personal experience 3.5 years ago. 3 x 3 weekly FEC and 11 x weekly paclitaxol.

I used the paxman cold cap system
I started using incredibly expensive organic shampoo and conditioner from the health shop but when that ran out I used Herbal Essence naked range (I really couldn’t tell the difference)
I always washed my hair the same day as treatment as I couldn’t stand the sticky conditioner in my hair
Generally washed my hair once a week
I tended to either leave to dry naturally or a cool hairdryer setting and ran my fingers through instead of combing
I tied my hair up in loose ponytails using covered scrunchies - anything soft and gentle, no metal hair clips
I wore hats outside as I chemo’d through winter
I had my hair cut as much and as frequently as needed throughout chemo
Had a good cut and colour between 3-6 weeks after finishing
I didn’t use any heat (tongs, straighteners, hairdryers etc) but neither did I keep my head cold other than during chemo

As I say, this is my experience and it worked for me. No bald patches, good hair condition, loads of new growth during paclitaxol.

Good luck to all x

422

Just about to start 4 ac. I will try the cold cap. Any tips. Did anyone else have ac and cold cap?

423

Hi, I’m cold capping and (touch wood) don’t seem to have lost any hair yet. I’ve done 3 FEC and 2 T, so my last one is in about ten days time. I loved my hair so much, it was long and blonde and had extensions. They had to come out, clearly and my fabulous hairdresser trimmed it and did a kind of a dark to blonde colour through it before I started, as you’re not supposed to have colour treatments etc during chemo and we thought that would hide any roots etc if they did grow throw.

 

I’m not going to lie, that first 20 minutes the first time was hell, I can understand why people give up at that point, but after 20 minutes it just becomes numb really. And cold. My amazing friend Jayne who comes with me for mine bought me a plug in fleece, like an electric blanket and it is amazing. Each time cold capping the hard first part seems to get easier and quicker to. Deep breathing and saying f**k a lot seems to help.

 

Yes, don’t forget your wooly hat to go home in.

 

And now the part you’re not supposed to do. I wash my hair, blow dry it and straighten it every single day. Yes, that’s right. Every single day. Just like I did pre-chemo.Because I didn’t just want to keep my hair, I wanted to wear it how I wanted to wear it. In fact if I had to go to work (iIm a teacher) looking like I do when  get up in the morning, I’d prefer to wear a wig. 

 

So it could all still go this time (half way between cycle 5 and 6) or it could still go next time, but even if it does I looked good and felt good this far through.

 

Those bastard treacherous eyelashes are a different matter entirely. I’m learning to love my falsies though,

 

Hope all goes well for you xxxx

424

This is an interesting solution! I already went through this, and I had a completely different approach to this situation. I cut off my long hair under a short haircut, which for a long time I wanted but was afraid to do. I changed  my hair color (unusual) for cool result by Hair Color Changer and a little time went like a freak, but then I liked it! Now, of course, I grow long hair, but the color is not standard, I still paint the ends of my hair.

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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 :slight_smile:

427

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.

428

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.

429

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

430

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.

431

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.

432

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

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forum.breastcancercare.org.uk/t5/Chemotherapy-monthly-threads/bd-p/Chemotherapy_monthy_threads

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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.

435

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.

436

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

437

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!

438

Any cold cap updates ?

439

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

440

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