Keeping My Hair Through Chemo

When I was told on the 7th of July 2014 that I had breast cancer and would need chemotherapy, one of the first thoughts that came into my head after ‘Am I going to die?’ was ‘Does this mean I’m going to lose my hair?’ The answer to those questions were ‘No, you won’t die.’ and ‘Yes, you will lose your hair.’ Phew, I wasn’t going to die. Excellent news! I wasn’t focused on death so much after being reassured by my breast cancer team but then I began to centralise on how the chemo would make me feel and how I would look. I was told I would be on the FEC regimen:

  • Fluorouracil (5FU)
  • Epirubicin
  • Cyclophosphamide

FEC makes you lose your hair, no doubt about it. And I would be having six cycles of the stuff. I was devastated by the news that I’d lose my hair but didn’t want to let on it was bothering me so much as I felt so superficial. Here I was, being given the news that I had cancer and I was worried about my bloody hair.

I was deeply ashamed by my vanity and could imagine my Mother giving me her look, the infamous ‘Are you kidding me?’ look, also known as the ‘You better run up those stairs’ look that was often given to me when I was child.

I listened to the sounds coming out of the doctors mouth but they didn’t make sense, I couldn’t translate the words. They meant nothing to me, I just saw visions of myself; bald and shiny and I couldn’t think straight or focus on anything else.

I knew the answer all along, I knew I’d lose my hair but a tiny part of me thought there would be some miracle chemo drug invented by now that annihilates your cancer but also doesn’t give you all of the nasty side effects such as hair loss. I’d done my research beforehand, just in case I did have cancer and needed chemo.

I’d read about how nearly everyone loses their hair during chemo and that when it does come back, it can come back a different colour, or a different texture.

Oh, no. Firstly, I do not have the right shaped head to pull off bald. I can’t even pull of a pixie crop and I knew as I’d had that cut a few years ago and was so glad when it grew long enough that I could put clip in extensions in.

To think that I’d be bald and then to suffer the injustice of my hair finally growing back, only to resemble a poorly made Queen Elizabeth comedy wig! If only I had a tiny, Natalie Portman-esqe face, I’d gladly rock the bald look. I think some women look gorgeous. But not me. I need a lot of hair to cover my face.

The light at the end of the tunnel came from my lovely breast cancer nurse, Emma when she exclaimed ‘We do have Paxman Cooling Caps that are worn whilst you have your chemo. They work by freezing your head and by  reducing blood flow to your follicles which can prevent hair loss’

Eureka! Okay, I loved this. This was great news! There was a chance that I would keep my hair and all I needed to do was wear a cap? I’m into this.

‘Here’s the deal,’ she continued ‘They are worn for half an hour before you are given your chemo, during chemo and for two and a half hours after chemo, so will prolong the time you’re here.’ Oh, not too bad, I thought. I can handle a couple of hours extra at hospital.

‘They don’t always work and they bloody well hurt, Di.’ Emma was great. She was young, and had been diagnosed with stage 3 breast cancer previously and was now four years NED. Emma was the closest person to me at that point in time and was my own breast cancer hero. She was my kindred. She knew every emotion and feeling, every fear that I was going through because she had experienced it herself. She told me that it was rare that the coldcap worked and that the freezing pain was excruciating.

‘It’s not worth it, Di.’ she said directly. ‘You’ll sit there in pain watching everyone else come and go and get on with their stuff.’ I was gutted.

We’d caught the cancer early, my surgery was a success and I had an excellent prognosis, now I had to go through treatment to make sure it would stay dead and kill anything lurking around. I really wanted to keep my hair throughout this. It was one of the most daunting and upsetting parts of going through chemotherapy. When you envision a cancer patient, you picture the bald head straight away.

The bald head is like carrying your identification to the cancer club everywhere with you and I didn’t want to be seen as a cancer patient. I wanted to take control of this diseasy bastard that had tried to kill me. I wanted to let it know who it was messing with. I also wanted to maintain my confidence and felt I couldn’t do that if I was feeling so outwardly discouraged.

I had the option of wearing a wig, of course. But that wig comes off at night when you’re at home. When you walk past the mirror and catch a glimpse of yourself and remember that you are actually quite sick and the drugs you are taking to make you feel better are actually poisoning you so much that your hair is falling out.

I wanted to remain as ‘Normal’ as possible. I had to carry on with my everyday life as much as I could and that included looking the same as I did pre cancer. The coldcap had to work for me. It just had to. I loved the expert advice I had been given from Emma but I wanted to see for myself if it could work for me. I’m also quite stubborn and never take no for an answer.

So I decided to give it a go, anyway.

Not all hospitals offer the cooling cap and I was very fortunate that my hospital had two of the Paxman Orbis 2 models which provide cooling for two patients at a time.

I would be booked into the chemo suite on the day of treatment and would head to the little patient toilets to wet my hair and cover it in a layer of Dove conditioner which had been recommended by the chemo team (I had to switch to Simple conditioner after my second cycle as the smell of the Dove conditioner made me feel incredibly sick #chemoprobs)

The conditioner protects your hair and helps avoid damage when removing the cap at the end of the cycle. I would suggest maybe taking in a spray bottle and filling it with luke warm water as it’s easier to dampen your hair this way instead of struggling, as I did, to bend over the tiny sink.

I would then take two paracetamol in preparation and wait to have my cap fitted. Make sure the cap is fitted correctly and please don’t be shy in telling the nurses it needs adjusting if you think it’s loose anywhere on your head. If it’s not fitted correctly, you’ll find you have bald patches in those spots. It shouldn’t move on your head, if it does, it’s not fitted correctly. Be strong with this, you’re going through this discomfort because your hair means a lot to you. Don’t risk losing any because you’re too polite.

I wore a medium-sized silicone insert and a small helmet/cap. I wouldn’t let them switch the machine on until I was comfortable that the cap was fitted snug to my head.

As soon as it’s turned on you can feel the silicone fill up with coolant which is circulated at -4 degrees and it hits you straight away. I’m not going to sugarcoat it because I’m not Willy Wonka – it hurts…but it’s manageable and the worst part is over after about fifteen minutes as you acclimatize to the cold.

You keep the cap on your head for 30 minutes then you can have your chemotherapy drugs. Mine are administered between 45 minutes and an hour depending on which nurse gives them to me. Once you’ve had your chemo, you must continue to wear the cap for two and a half hours (this is specific to the FEC regimen, I think it reduces to one and a half hours if you’re having Tax) so all in all you can be wearing the cap for around four hours. Once completed and the cap is unplugged from the Orbis, you must keep the cap on your head for around fifteen minutes to let it ‘Defrost’

Ice on head post coldcap.
Ice on head post coldcap.

Once you are suitably defrosted, you put your hat or scarf on your head and back home you go – remember to pack something to cover your head in your chemo bag because if like me, your treatment occurs during the Winter, you won’t want to go out into that freezing cold air with your wet, coldcap hair.

What to do when you get home? I leave the conditioner on my head for 24 hours then wash my hair the next day in luke warm water using a mild shampoo such as Simple or a baby shampoo.

When washing your hair, don’t scrub vigorously, use gentle strokes and patting motions to get your hair clean. Let it dry naturally, don’t use a towel to rub it up and DO NOT use a hairdryer.

I have naturally curly hair that I straighten and had a blunt fringe cut in before chemo began. Big mistake. Your hair doesn’t grow during chemo and you can’t use heated appliances on your hair so I’ve had to leave it in its natural, curly state. A curly fringe? No, thanks. I look like a clown. Even Beyonce can’t rock the curly bangs, she should stop trying. My hair looks even worse without the use of oils or conditioning products to tame it. It’s just a frizzy mess.

Would you go out in public with ths hair? This was taken after I had combed it through with a wide tooth comb.
Would you go out in public with this hair? This was taken after I had combed it through with a wide tooth comb.

Thankfully, I’ve purchased a few wigs to help with this problem. I comb my hair with a wide tooth comb and put on a wig on it. No need to stress about styling it and in the meantime, my poor, frozen, chemically attacked hair is getting some rest.

Still losing hair? On day sixteen after my first cycle I got the dreaded tingling feeling all over my scalp. I’d read that this occurs just before you start to lose your hair.  I remember sitting at my desk at work panicking that my hair would be falling out and that I’d wake up the next morning with my hair on my pillow.

The cap hadn’t worked. I’d read about this, it works for some and not for others. All of this effort, all of the pain and discomfort, the worrying and checking my pillow each morning… I can see why some women shave their heads straight away – it’s too stressful checking to see if your hair is still there. But the tingling stopped after a day. And I woke up the next day, and the day after that with my hair intact.

I experienced the same tingling after my second cycle but still my hair remained. Each time I comb my hair I do lose some but that’s to be expected. I lose a lot of strands but not chunks of hair and I’ve had no bald patches so I see this as a success.

hair loss 1
This is on average how much hair I lose each time I comb it.

I completed my sixth cycle of FEC six days ago and I am pleased to say that I still have the majority of my hair. It’s not in the best of condition and I will have a good cut to get rid of any damage but guess what, I’m not bald! I’ve met my objective! coldcap orbis I intend to continue to wear the wig for a few more weeks and then will start washing my hair with Nioxin products four weeks post my last chemo. Nioxin products thicken your hair and contain no damaging chemicals and I believe Kylie Minogue used them after she had chemo to speed up the growth of her hair. I will then wear it up in a top knot until it thickens enough for me to straighten and style it.

Other products that have been recommended to me are:

Lush ‘New’ Bar

Fast Shampoo

Lush ‘Roots’ Scalp Treatment

If you really want to keep your hair and your hospital offers the coldcap, I would definitely recommend you try it. What do you have to lose? If the discomfort is too much, at least you’ve tried it and if you do go ahead and use the cap, I really hope it works for you too.

If anyone reading this has any other recommendations of products to use post chemo to help with hair thickening and growth, I would love to hear about them and also your experience with the cold cap.

27 thoughts on “Keeping My Hair Through Chemo

  1. Hey there chemosabe!
    I found your blog the other day and was slightly freaked out by it, I found myself nodding along to almost everything you’ve described. I’ve just had FEC cycle 4 and also using the paxman cold cap. I would consider it a success but have a growing bald patch on my parting line and the right hand side has thinned. (Will be triple checking the fit) Like you, I would not rock a pixie cut so I’ll take this over the baldie alternative.
    I’ve been using Seavite shampoo and conditioner, it was recommended by the wig salon. Not overly fragrant but another thing on the list of smells that make me feel queasy.
    How are your brows and lashes? Mine were holding up well until the last week or so, brows are definitely patchy now and I’ve not dared to wear mascara for weeks.
    I used Nioxin before I got married as I had pretty thin hair in my pre chemo life. Certainly thickened up although I’m not sure it did much for the condition of my hair. Planning on reusing once round 6 is over.
    Looking forward to reading about your continued journey, take care, xx

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    1. Hi Leah,
      Hope you’re doing well with your side effects! You’re almost there now!
      Seavite products? I’ll have to take a look at those, i’m so desperate to maintain my hair although Ive heard it can continue to shed for a while after chemo. I’m just trying to look after it as much as I can.
      I started losing my lashes and brows at FEC 4 and although they’re still here, my right lashes are very thin and stubby, no point being there tbh and my brows have thinned alot!
      I’m going to use Rapidbrow on my eyebrows though and still looking for the best thing for my lashes.
      Hope you keep all your hair, it sounds like you’ve done incredibly well so far!! Xxxxxxx

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  2. Hey hope you’re doing well! Cold cap sadly didn’t work for me. My hair grew back pretty well except its a bit thinner then before, but I think that has more to do with Tamoxifen.

    I use any ‘organic’ or no nasties shampoo, but for christmas I got the Aveda Invanti System from my sister, and I really think its working. My hair seems to be more healthy and thicker. Its pricey, but def worth it at least to boost hair growth. I also did lots of coconut oil and lavender scalp/hair masks. 🙂 xx

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    1. Hi, I’m sorry the cap didn’t work for you, I think it’s hit and miss for who will be successful with it but at least your hair has now grown back!
      I’m going to use Nioxin until it’s at my desired thickness and length then I might make my own shampoo with natural products. Xxx

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  3. I start my 1st chemo on 16th may & have decided to go for the cold cap so all this info is really helpful …. Wish me luck ❤️

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    1. Hi Lynn, thank you so much for commenting. How are you feeling? If you need to chat or have any questions, let me know. I’m here. I’m also on twitter @alilearthquake if its easier. Sending you lots of positive vibes and strength. You can do this!! Xxx ❤️❤️💪🏼💪🏼

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      1. Thanks so much for getting back to me. This has hit me like a sledgehammer I have cried, sobbed been up been down I feel like my head is going to explode. I started a new job in April & was making progress & now it feels like my life has been stopped in its tracks holidays cancelled. Telling kids was worst/hardest thing I have ever had to do. I am devastated but forums like this do help a lot my parents & partner have been amazing it’s my fight & having calmed down & feeling very proud if I manage a whole day without crying. But I’ll don’t have the luxury of choice it’s do or die ❤️

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      2. I think the worst part of the disease is how it suddenly takes the reigns and dictates where you’re going, what you’re doing and how you’re feeling. I felt exactly the same. I wanted to start a family. Breast cancer happened instead.
        I still get angry over it now, I dont think you ever fully come to terms with it. Its the chaos it causes. Its relentless.
        You will get through it though, and I know your life is on hold but you’ll get to the end and you will feel amazing. Okay, that might be pushing it!
        How old are you Lynn? I joined the YBCN group on facebook for women aged 45 and younger. It really helped get me through the treatment and I’ve made some life long friends.
        Xx

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      3. I’m 51, 52 on 23rd may happy birthday !!! I’m sorry to hear yr news yr right it totally takes over everything but it’s great to hear from people makes u feel like yr not alone. I have ordered a wide tooth comb, silk scarves, silk pillowcase & will finish shopping next week b4 chemo starts 16th may I finally feel like I’m accepting the inevitable ….. No blooming choice so may as well get on with it sooner it starts the sooner it ends !!

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      4. I think theres another group that you can join – I’ll find out for you. My Mums birthday is May 23rd too. Be really gentle with your hair when styling. I wore wigs because I didnt want to touch it – half the time I didnt even wash or brush it! 😂 Such a slob, haha. X

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      5. Ok thanks that would be great 👍 I know that’s why I’m looking at wigs next week I’m only gonna wash it once a week max comb it once a day etc & I thought if it looks such a mess if u can through on a scarf or wig then all the better, going to give the cold cap a go nothing ventured & all that ! ❤️ X

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  4. Hi can someone give me advice I got chemo & cold cap over 2 weeks no hair has fallen out or shed but I have had tingling etc is this normal with no hair falling out or shedding I’m hoping this is ok & it won’t all fall out !! HELP !!!

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    1. Hi Lynn,
      Don’t worry! This is absolutely normal and is what happens before your hair falls out.
      I had exactly the same sensation but my hair loss was limited to thinning only. I’m really hoping it’s the same with you.

      Continue being super careful with your hair. No tugging, no tying up in a pony or bun. Try the wigs if you can.

      How have your side effects been? Xxxx

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      1. Hi oh that’s a relief !! I was panicking a bit I must confess I have bn wearing it up as its not getting its usual wash every 2 days it’s like twice a week ! It’s one if those Spring things that are not tight or pull. The side effects have been actually ok the 1st day of chemo wasn’t great I had to have MRI 1st then straight into cold cap chemo etc I had a panic attack & ended up getting a jab to calm me down never had a panic attack in my life I think it was too much in one go !! I slept rest of Monday & early to bed tues but wed was ok just very tired I had a bit of heartburn but got tabs from doc so that’s ok for first 7 days I also had a fuzzy head & felt light headed but since last tues I have felt normal maybe get tired more quickly but all in all ok. Have bn paintng garden fence went for power walk today (not as far as I usually go but 3500 steps) & I feel ok. My only worry was the tingling head I thought oh god this is all away to fall out !! If it’s normal with cold cap it gives me comfort it’ll be ok. 2nd chemo is in Monday 6th so hopefully no panic attack !! & hair stays put !!! Lots of love Lynn xxx

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      2. Lynn,
        I was exactly the same as you. I remember crying at my desk at work because my scalp was tingling and stinging. I was certain it was just going to fall out right there and then.
        Just keep being gentle with it and make sure your cold cap is tight on your head. I’m keeping my fingers and toes crossed for you, beaut. Xxxxxxxxxxx

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      3. Me too !! Cap was very tight I cld hardly swallow !! So fingers crossed just so glad what I’m feeling is normal & doesn’t necessarily mean the worst !! Thank you so much you have put my mind at rest xxx

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      4. Thank you I may have another wobble lol it’s hard to be strong & positive everyday although I do try. Sunday wasn’t great. I just felt so incredibly sad but got up y’day & it had lifted a bit so just sad instead of really sad if that makes sense 😄 Xxx

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      5. Well 2nd chemo 2moro & used cold cap & lost no hair ! Had tingling etc but no loss I’m happy but also thinking it’ll happen after 2nd chemo …. We shall see !! A friend I met on a site same age sane Breast cancer & using cold cap she is losing hair (a lot) & we haven’t done anything different just goes to show no 2 folk are the sane !! Wish me luck for hair staying put sending lots of love xxxx

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      6. It’s true, everyone is different. It’s the luck of the draw, I suppose but stay positive!
        Good luck for tomorrow, sending good vibes to you. Let me know how you get on! Xxx

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      7. Hi it wasn’t the best got there early to get started but it told my liver function test had rocketed b4 1st Chemo it was normal at 32 b4 2nd chemo had gone upto 232 !!! So had to wait an hr for bloods to come bk which they did to 112 still a bit high but they went ahead so then another delay for hr while sickness drugs kick in so had cold cap on this time so shld have bn out bk of 1 got home at 4 had a bad night same yesterday but feel more like myself now albeit a 90yr old version 😄 got a guy in Dunfermline to cut & style a wig today they all go with same suppliers. Hair still intact so far !! Nurse told me on Monday if I hadn’t had cold cap I’d have no hair by now so fingers crossed !! xxx

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  5. Hi well nearly 2 weeks after 2nd chemo very little hair loss still getting tingling in scalp each time fearing it’s gonna fall out but so far so good 👍 My hair was very dry & looked lifeless & dead so I got some Argan oil & massaged into my scalp & over my hair & left it on overnight then washed with Argan shampoo & conditioner !! Omg what a difference it was soft & shines !! So every week b4 I wash it I’m going to do same again it actually looks like hair !! I will keep my fingers crossed my hair doesn’t fall out & the tingling goes like after fec 1 !!

    Lots of love Lynn xxx

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    1. Hi Lynn, I’m glad you’ve messaged as I was thinking about you yesterday!
      I think this is a very good sign. In most cases that I know, if you still have your hair after FEC 2 – there’s a pretty strong chance that you’re going to keep it for the long run.
      Just keep doing what you’re doing, be gentle with it and stay super positive.
      You got this, Lynn. You’re winning! Xxxx

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      1. I hope so !! My heads sore today but that happened after 1 too so I’m hoping it’s gonna be ok ! Washing yr hair is so emotionally & mentally exhausting u worry everyday when u brush it u worry when u wash it u worry when u brush it when it’s wet (I have a wet brush best thing I bought) u worry when u dry it … Once it’s done yr bloody exhausted !! 😄 I will battle on & PRAY IT STAYS PUT !

        Thank you ❤️ Xxx

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  6. Hi ladies,

    I just stumbled across your blog after a mega meltdown. I lost probably half a handful of hair after my second fec and cold cap I put a leave in conditioner from lush on for the cold cap then wash it four days later. I’m using paxman clenser and conditioner once a week it’s stopped some of the itching. I’m freaking out that I lost so much hair yet I do still have a pretty full head it was the chunks I saw but then I hadn’t brushed or washed it for five days so it could have also been a build up? I had a ton of wild thick hair before I had chemo do its thinned but I’m hoping that having a lot to start with helps! I heard that you stop losing so much after your third Fec is this true? I’m really hoping so!!! I sleep in a jersey cap on a silk pillowcase in a hope to not snag it and rub coconut oil in the edges of my scalp. I’m taking biotin and sea kelp is there anything else I can be doing? I wash my hair once a week and mostly sort it with my fingers or a wide to other wooden comb as I had it cut reasonably short pre chemo as I heard this stopped breakages! I still have full brows and lashes they drop out more but will this change further along? Sorry this is a lot of questions I’m full of them!!!!

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    1. Woah woah, sweetheart! You’re doing enough! Don’t use too many products as that will be detrimental to the hard graft of wearing that bloody cap! Just stay calm and be gentle with yourself. How are you doing now? How’s your hair? Xx

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    2. Hi lullabelle

      I did cold cap & kept most of my hair my last chemo was 18th July. I used Argan oil & the night b4 I intended to wash it I massaged into scalp & brushed thru& washed next day with Argan shampoo & conditioner I then used a leave in spray conditioner for dry brittle hair get a wet brush Amazon £5 best thing I bought it doesn’t pull yr hair. I blow dried my hair & put mousse on it I was told that if follicles are damaged hair will fall out regardless & if not hair won’t fall out & I pretty much went surf that ethos & I have a full head of hair. I did get tingling & an ache like I had tied my ponytail to tight & freaked thinking it was away to fall out it never did I lost a little bit not clumps just strands. Try not to freak out too much not easy I know been there done that 😄 The only thing I did do was only wash it twice a week but apart from that I styled as normal. If I can be if anymore help just holler. Stay with it & keep it moisturised as it dries out with cold cap leave in spray conditioner for brittle hair is best lots of love Lynn xxx

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