Hi, I had my first FEC on 17th March including scalp cooling, my next one will be on Monday 7th April. I’d planned on asking for cold caps again but this morning when I was doing my hair I was shocked at the amount of hair that was left on my brush and then when I ran my fingers through it, loads of strands all came out between my fingers. I had my long hair cut into a bob as soon as I found out I would need chemo, kind of as a halfway measure. Now I know that I am losing my hair I am going to see my hairdresser as soon as she can fit me in to have it all buzz cut. I am not happy but at least I am no longer wondering whether it will or won’t happen and when it will happen…
How soon does it tend to start growing back?
I have warned my boyfriend that it might happen but he has just kept saying “you don’t know yet, it might NOT happen” and he knows that hair loss isn’t for ever, but I am still nervous of what he will think when he next sees me. I don’t want him to see me with a bare head - ever. He is not shallow but I feel it is so unfair on him.
I have a nice wig on standby and have already got one plain back cotton headscarf so I can shop around a bit more at leisure for more.
Hi Clarabel
I wouldn’t be too hasty in getting all your hair shaved off. I also used the cold cap and my hair did start to come out on about day 19. Although I was combing out a good comb full (use a wide tooth comb) and removing hair from my pillow every day I still retained a good covering of hair - and I had quite fine hair (but a lot of it). I reckon I lost about 50% of my hair but had a good covering with no bald spots and I didn’t use my wig once. Also a tip I was given was to only wash hair once a week and smother your hair in conditioner before using the cold cap. I think this really did slow down the hair loss.
I don’t know what chemo regime you are on, but I was on Epi for the first 4 treatments and once that had ended my hair started to thicken up quite quickly. It is now a lot thicker than it has ever been (and curly).
My very best wishes to you.
Carol
hi clarabel i think you posted on my thread first fec and cold cap 20th march. i am so sorry for you it brought tears to my eyes. i did cold cap and am dreading hair falling out… i live in village and so far kept it all quiet. at least the good thing is your treatment should be shortened at hospital by about two hours if same as mine. i was talking to a friend last night and we have been told cant dye hair on chemo well mine is quiet grey and i dye it about every other month so i don’t really know what state it will be in colorwise if i don’t… sorry again and i am thinking of you… it will get better…xxx julie xxx
Hi again, thanks for speedy responses…
Carol… I think everybody who undergoes chemo has different feelings about the hair loss thing, personally if my hair is going to get thinner I would rather shave it all off and wear a wig or a scarf until it decides to grow back. I don’t have particularly thick hair in the first place so I can’t get away with any of it falling out. I cannot get away with not washing my hair every other day, it would be so greasy I would need to cover it up in any case! I just want to bite the bullet, I’m not going to ask her to completely scalp me I shall ask for the hairstyle that Demi Moore had in GI Jane. Hopefully I will not discover that I have a funny shaped head or a birthmark on my bonce. I shan’t be going round au naturel, but it’s just my personal preference that I don’t want to keep seeing strands of hair coming out - yesterday and Sunday I picked a couple of strands out of my food, which was not nice. At the time the penny did not drop, but now I know it’s happening I don’t want that palaver at every mealtime either!
Julie… I am sorry if you reading my post has added to your own worries as you are about 3 days behind me. I hope the cold cap will work for you, you will just have to go grey gracefully (or ask your doctors about semi-permanent dyes?) do not worry about what other people in your village may think or say - I live in South London but I use my local shops rather than big supermarkets and I have not yet told any of the staff about my cancer or chemo, and I am on first name terms with them all. I am not looking forward to them knowing but it’s either that or shop somewhere less convenient for several months, and I honestly believe that ANYBODY who knows a person is having chemo and losing their hair will be nothing but concerned and sympathetic. I know we don’t always WANT sympathy we would just rather be 100% healthy and it not be an issue, but just tell people to treat you as normal and not feel that they have to pretend they have not noticed. Good luck xx
Hi Ladies,
Even though you know it will happen its still a shock when it starts. I would hold off for a while as it may slow down. I didnt have cold cap because my Onc did not agree with it but even so i didn t lose my hair completely.
When I had half my hair left , I had some bald patches at the back and it was still coming out in handfuls I had a number 2 cut so GI Jane style. It got a abit thinner but I always had a downy covering. I was never brave enough to go commando and i,m still nervous even though I have a 1 inch crop.
It started growing slowly towards end of chemo but came in almost completely grey (I,m 39) . It may have been grey for a long time but I always dyed it every 4 weeks so didnt notice.
Clarabel as for your BF It depends how serious and if you are living together, It may be hard to hide it forever if you are in the same bed, bathroom etc. Its up to you but i think you,ll be suprised how supportive he is.
Jal I was told by Onc that you can dye your hair 3 months after chemo but only with a semi perm and 6 months before a permanent. But I found a dye in the health food shops called Naturtint and its permanent but with no chemicals. I used it last week and It worked a treat, its 12 weeks since my last chemo.
Hope this helps and best of wishes to you both
love Andrea x
Hi Andrea
I am 34 and had only just started getting a few grey hairs in the last couple of years, still not enough to need to colour my hair. But I have heard that re-growth after chemo can be a surprise and that it may be curly where it was straight in the past, or it may be a different colour. We shall have to see…
It’s just my preference I don’t wanna go around with thin hair I would rather get rid. I am not going for a complete smoothie I am going for a grade 4 or something like that, but I doubt I would go “commando” unless it grew to like an inch crop AND it would have to suit me, which I have no idea as I haven’t had short hair since I was a toddler!
I don’t live with my boyfriend yet, that is the plan for later this year. We just spend weekends together. I think I will be able to get away with him not seeing. It’s like, I would never let him watch me go to the toilet so I will shut myself in the bathroom when I need to put on my wig or scarf or whatever I am wearing.
Hi Clarabel, I fully understand why you would want to shave your hair off - as soon as my hair started to malt I just wanted it off - although I did question at the time whether I should just let it fall out or take control myself and shave it off. I was also really worried about how my ‘other half’ would cope with seeing me with no hair - and made a lot of preparations before hand - scarves, hats, wigs, etc - but he has reassured me enough times for me to feel more than comfortable going ‘naked’ at home without feeling as if he would prefer me to cover myself up - I think he almost prefers me with no hair than with the imitation hair of the wigs! And he is constantly reminding me that it will re-grow - which is really comforting. I am sure your boyfriend will understand but I do sympathise with you - nothing wrong in maintaining a little mystique, even!
However you manage it, you will find a way of getting through it - and you perhaps might have a different take on it afterwards than you did beforehand. But however you manage it, I wish you all the best. Lots of love, Naz
Just thought I’d add my cold cap experience for those worrying about hair loss. I’m having FEC… 3rd on Fri. Each cycle after about 2-3 days my hair falls out in great handfuls… all over my pillow, sink, plughole etc… I had it all chopped into a short (but I like to think chic!) style in preparation. At the first sign of it falling out I was also on the verge of getting my friend round to shave it off but thought I’d wait and see what happened. After a few days it stops. The majority of it’s still hanging on in there 5 1/2 weeks in. I’m fully prepared with wigs and scarves but haven’t had to use them yet. I’ve slowly weaned myself off washing it every day and am now down to once a week with a gentle baby shampoo which helps. I am thinning/bald around the back as I have a low hair-line and the cold cap misses that bit but no-one else has noticed. I’m really enjoying having short hair as I would never have dared before. Anyway this is for those of you just starting out and trying the cold cap as I really didn’t know what to expect and really didn’t think it would work.
I too tried the cold cap on my first FEC two weeks ago. Found loads of hair coming out in the shower this morning, however it’s mainly around the hairline and so I’m wondering if it’s just where the cap couldn’t cover it properly. Guess I’ll find out in the next few days ! I did meet someone today who has just finished her chemo and used the cold cap, and she still had a good head of hair despite her saying it had thinned quite a lot. I guess it depends on what your hair is like in the first place…
Sarah
xxx
Have to admit that I didn’t try the cold cap - I watched a friend use it 3 years ago and thought to myself I could never do that … and so it has proved!!
I’m having TAC chemo and was told that without a doubt my hair would come out. I’ve always had really thick hair (albeit shortish) and thought I would absolutely hate losing it. Especially as I have 2 young children and thought they might react badly. But actually when it did start to fall out I very quickly tired of having to clear the shower and bathroom floor of clogged hair every morning. I got my hairdresser to shave it pretty close and for the first time since my dx I felt that I had taken control of a situation (small victories!)
My children have completely accepted the way I look without hair - I tell them I look like a very beautiful lady called Sinead O’Connor, they tell me I look like Gramps (my very bald Dad!) And although I haven’t had the courage to go naked in public my NHS wig is great - so good in fact that a friend, the first time she saw me wearing it, started to say that it was better than my real hair - until she realised what she was saying and did some impressive verbal gymnastics to get out of her hole! I also have a wide selection of lovely scarves and have discovered the “buff” which I figure makes me bald but v trendy!
Anyway, this is for anyone out there who wants desperately to keep their hair but finds it slipping away… it may not be as bad as you fear.
Good luck everyone!
Cal.
Oh Clarabel it could be me writing your mails (except i’m married but not loving having to show the hubby my bald self either) but i had my second fec and it was coming out so went to a very stylish salon to have a ‘chic’ crop and look anything but chic!! I’mm 33 and South London also and all my local shop staff know me so well that i actually wore the wig today as i find the barrage of concern too overwhelming in thinking about it and my wig is the same as my pre sahved style so noone noticed i don’t think! i had long hair and cut it into a bob when i was first diagnosed but i was not prepared at all to how i would look with an inch or two max - i wore full eye make up just to go to the bank as i was desperate to see how this ‘look’ could work but sadly on me it didn’!t Damn that gorgeous Natalie Portman for inspiring me but now i hear you ladies saying i might not even lose it all so that is v.annoying if i do keep this ghastly cut but i did buy a nice wig from Trendco in Brighton yesterday and walked into the trevor Sorbie salon and got them to cut the remf and then had lunch at Wagamamas and tried not to lokk at my reflection in any shop windows! Roll on summer as at least with a few summer clothes and the summer sun i should feel relatively normal again although i am avoiding seeing my very luscious long haired friends for this week at least!!
God sorry for the ramble but i just wanted to say that i do understand the shaving it off sentiment as opposed to the saving what i had angle as the falling out part was too traumatic not knowing and i am v.sure i will get used to my new crop and wig selection v.v.soon! x
Hi
I had quite long thick hair and was really dreading losing it, kept it upto FEC no 2 then started coming out in handfuls was really depressing really thin on top and long at the sides, youngest said I looked like Andy off Little Britian. I got OH to shave it off at that point couldnt stand it any longer. Cant beleive how much better I felt once it was done, I think the waiting and seeing my hair get thinner and thinner was worse than actually taking the plunge and getting it shaved. I tend to wear lots of hats and scarves and a friend told me the other day I looked about 24 not bad for 45 year old.
Karen
I am on TC (Taxotere and Cyclophosphamide), I have had 3 out of 4 treatments. My hair hasn’t entirely fallen out, there still is a light covering, not enough to be seen in public but it cheers me up as I feel my hair is fighting back! In fact I feel it is growing already. Maybe it will fall out after the next treatment, has anyone else had Taxotere? - it seems to be the culprit for guaranteed hair loss.
Like many of us I found the hair loss (2 weeks after the first treatment) very hard to take, I cried for a few days, more than I did when I got the diagnosis just before Christmas. I can’t wait to finsih the chemo so that it can start growing back. I wear a wig for work and generally when I am out and about. I hated it at first and found it itchy, but it was worth bearing with and now I hardly notice that its on my head at all!
Inspiring about the wig as i wore mine for the first time yesterday and it annoyed the hell out of me but my vanity WILL persevere!! I hear the tax will do the most damage as i’ve only done 2 fec but my consultant assure me i would deffo lose the hair on the tax which was deflating but at leats honest i guess! Now i have the dilemma of deciding on whether i should bother with the coldcap or not as completely bald is something that i didn’t think would bother me but after my close crop i am desperate to do my best to avoid it if i can! God this illness strips you of everything doesn’t it??! On the plus side i’m a far nicer person on the inside these days so every cloud…; )
Hi All
I have added the details of the Breast Cancer Care ‘Headstrong’ service in case anyone is interested. They give practical tips and information on looking after your hair and scalp before, during and after treatment. You will be able to try on a range of hats, scarves, fringes and hairpieces in a comfortable and private environment. You also have the opportunity to buy selected items of stock. As well as being free, you can attend as many times as you want – and you are welcome to bring a companion along for support. For more information either click on the link below or contact the helpline on 0808 800 6000. breastcancercare.org.uk/content.php?page_id=2458 We have also published a booklet about hair loss containing useful tips and hints which may also be of some help to you, you can read it via the following link: breastcancercare.org.uk/docs/hairloss_2004_v2_0.pdf
Kind regards
Katie
Thanks for all your replies.
I discovered that Debenhams have a department called Hot Hair and although it’s mainly “fashion” eg clip-in extensions and false ponytails etc, they DO also have full wigs and the coolest thing I bought myself was a denim coloured, cotton bandana with lots of long braids off the back, The cotton feels better against my scalp than a full wig so it will be really nice in the summer and it looks funky as well. I liked it so much I’ve ordered another one but with long wavy, un-plaited hair. I will probably get a few more with different colour bandanas. Scarves in Tie Rack are really nice and again they feel better than a wig. I think I will end up saving the wigs for nights out or “smart” days in the office.
I have gone from the grade 7 crop to the proper grade ZERO Sinead O’Connor look, because I was uncomfortable with finding even short hairs everywhere, it looked a bugger and itched like mad. I am glad I did it, and I actually think I look quite nice but don’t think the rest of the world is ready to see me. I will probably show my boyfriend.
I also told him that if he has any secret fantisies about certain hair colour/style he should tell me before I order my next wig!
I am finding that I am not uncomfortable with the way I look it is everybody else that doesn’t know where to look or what to say. I wish I could wear a sign that says “yes I have lost my hair because I had breast cancer but I am not going to die it will grow back please don’t be embarrassed if you want to ask me about it”
What a great sign that would be, better than the wordless badge that a bald head stands for! It shouldn’t matter so much, but it does, it does… I’m trying cold cap with my first Epi on Friday and have been told to cut my hair at least to a bob beforehand, but have been a complete ostrich this week, can’t/won’t ring a salon, or make an appt with the wig salon, got a couple of new Buffs in the post and stuffed them in a drawer so I won’t see them. Well done you for taking the plunge…
I’m speaking as someone who has come through FEC (i.e. complete hair loss) and didn’t have cold cap. In hindsight, I would not have bothered with a wig at all, although I did get one. I felt more natural wearing a thin “beanie” hat with a long scarf (lots available at Primark) wound around it, and a towelling cap at night because even in the warner weather a bald head can feel cold.
Six months after my last chemo, my hair is thicker and better than ever. I am 52 and prior to hair loss was sprouting quite a few silver hairs in the temple region. However, now it is re-growing after chemo, I can count the silver hairs on the fingers of one hand.
I have read somewhere that a benefit that comes out of going through this cancer nonsense (after chemo) is a better head of hair, and I can agree with that. Not that that was any consolation to me a year ago when it was falling out in handfuls and I had surgery and rads before me, BUT I am here to tell the tale so if I can do it then anyone can. To all of you out there having a hard time with all of this, just hang on in there and believe that you are getting through it, because you will if you decide to. Those tiny, weeny cancer cells are nothing but bullies - stand up against them. And I have to say that we have an incredible medical support team.