hair loss

HI All
I am 17 days since first EC chemo I had the cold cap treatment and so far have only lost a few strands of hair. Am I being optimistic in thinking the cold cap has worked? or can hair loss start anytime, does it just suddenly come out in lumps?
or is it a bit at a time.
Hope you can help
Rachel

Hello Rachie

I had 8 cycles of chemo (4 FEC and 4 Taxotel) I had very long hair and was told by Breast Cancer Nurse to get my hair cut short as it would be problem when my hair would start falling out which it did 3-weeks after my first chemo (‘Nov.’ 06. I felt my hair was detaching from my scalp which was giving me a very bad headache, so I decided to wash my hair and as I recall large clumps of hair came out, and I was left with a bald head, quire scary at the time, as you are never really prepared. I lost my eyebrow and eyeless 2-months later (Jan. '07). Having finished my last chemo in April, my hair has slowly started grow back, not enough yet to go out without a hat, perhaps in a months time. I purchased two wigs which I only wore a few times and now back in their boxes.

Good luck with your treatment.

Dangermouse x.

Hello Rachie

I used the cold cap but about 90% of my hair fell out 20 days after the first treatment. I had 3 x FEC and 3 x Taxotere.

But you may be lucky - I see people in the chemo clinic who have lost hardly any hair by using the cold cap.

Good luck.

Love Anthi

I’ve had the cold cap treatment for both chemo sessions… but my hair started to come out on Day 16 after the first session of Epi… still a fair covering, and it’s Day 4 after the second dose, but it’s coming out fast and furious. Everyone has a different experience of it, so don’t let mine get you down… Getting fed up of picking it out of my collar, off the pillow… and thinking about getting it all off tomorrow, when I go to see the wig girl… sh’es lovely and happy to do it when I feel the time is right.

What did others do… and at what point did they decide just to go for it and get it all off? Any advice would be most welcome and I don’t know which way to go with it.
And what experiences / advice about donning the wig?

AliS

Hi Ali,

I didn’t have the cold cap so I got my OH to shave my hair down to a No3 for me when we got home from my 1st epi. A bit dramatic I know but I knew it would come out sooner rather than later and I wanted to take a bit of ‘control’ over it if you see what I mean? The nurses at the chemo day centre thought it was a wise thing to do but my mates thought I was mad!

My head started to get v.v.sore towards the end of epi 1 but had no hair loss, thought I’d got away with it!!! It was starting to thin a little when I went for epi 2 and my nurse assured me it WOULD come out in the next day or 2. Oh how right she was!! When I got home the OH got the clippers out once more and took it down to a No1 for me. The following day it started coming out big time, even though I didn’t think I had anything to come out! My head was really sore and I was fed up of finding hair everywhere. Everytime I moved I seemed to be covered. Ended up going into the bathroom, getting the shower hose and just rinsing it over the bath until it was all gone. I was up there a fair while but it was sooo worth it. My head was no longer sore, hurrah!! Discovered I had a v.white head though!!

I’m totally used to being a baldie now, although I am v.relieved that my eyebrows and lashes have remained in place! Haven’t had to shave under my arms for yonks and only have to shave my legs once in a blue moon (every cloud and all that!). Just switching to CMF from epi now and the nurses have told me my hair should now start to grow back! At the mo I put E45 on my bald head each day just to keep it soft and moisturised.

I have 2 lovely wigs but to be honest I much prefer to wear my headscarves when I go out. I find the wigs make my head quite hot, and although I use toupee tape and wear a hair band I’m still totally paranoid of it slipping off! I find my scarves keep my head lovely and cool and I feel much happier wearing them. I am rubbish at tying scarves (even with the help of my ‘scarf tying guide’!) and have found an awesome website in the states that does scarves with matching scrunchies so you don’t even have to tie them yourself. If you’re interested at all then check out ‘www.headcovers.com’. I also got a terry towelling sleep turban from them and its lovely. The P&P is well cheap considering and the goods arrive pretty quickly. I also ordered some false eyelashes and some eyebrow make up from them just in case but haven’t actually needed it,

Hope that helps,

Kelly
-x-

Hi there
I had my 2nd Epi treatment last Tuesday (26th) and I’ve used the cold cap both times (I’m also on TACT 2 Trial arm 4 accelerated so Epi every 2 weeks). My hair just started shedding yesterday morning which was day 19 from 1st Epi and have shed a fair bit this morning also. I’m absolutely devastated and finding it hard to cope with.
Rachel, I really hope the cold cap works for you.

Can anyone advise if your hair starts to grow back soon after end of Epi and while taking the next lot of chemo (I’m starting Capecitabine 7th August).
Thanks,

Carol

I did not have cold cap and my hair started to go after three weeks - so from about 22- 25 days. It went very dry and brittle, very itchy scalp. And it fell out slowly over a week - came out on pillow , everywhere in fact. Good luck - hope it works for you.

Hi Everyone
Thankyou all for your info. My hair is still shredding slightly and my mum thought today it looked dry and brittle, but I am having 2nd chemo on Wednesday and will be giving the cold cap another try. I’ve already visited the wig shop so they could see my colour and style and bought a couple of scarves in the sales today just in case.
I know like you Carol i will be devastated if it does fall out because its just another reminder of what we are going through and i cant imagine what i will look like with no hair.
Thanks again everyone, once again you’ve all been a great help.
Rachel

Hello, I started my Chemo FEC in March and before my second session of Chemo (every three weeks) my hair had started to fall out. When it did it bunched up in knots in the hair I had. Fortunately my wig had arrived and I went off to the hairdressers, she first cut my hair short (so I could get used to it) then used her hair clippers to shave it short. Having loved to have new hair styles and colours usually mid length, I thought I would be devastated but decided that once it started to come out then it could all come off. It kept me in control and I am now so used to not having hair I have to be careful not to shock others. I mainly wear hats with a little cotton liner from headline. If I am going somewhere dressy then I will wear my wig (which is very nice) but mainly wear my hats. I have a couple of “woolly” Benny hats which are so comfortable and keep my head warm. I don’t wear scarves as for me I think they say “Chemo” but I would not rule out wearing them if I found a really nice one to wear. I have had a lot of fun with my family all trying my wigs on (I was given a couple by others who had finished with theirs) and have photo calls with other follicly challenged members of the family (males). A lot of it is to do with getting your thinking right and still having fun. My body hair came out later and it is great that you don’t have to shave your legs and having a shower is a breeze with no hair washing/conditioning/styling etc. And of course we have our new hair to look forward to, what colour will it be, will it be curly (free perm) a different colour (free colour). Best wishes to everyone going through the early stages - you can have fun.

Hi Again
Thankyou ladies for your input and sharing your experiences.
I wake up every morning and check my pillow for hair, still hanging on but very dry and brittle.
My 11 year old tells me off for touching it saying it will come out quicker, she is more worried about how i will look then me.
I too am not sure on scarves either though i have just bought a couple of really nice ones from Warehouse, but i know that i will feel really self concious when wearing them.
I visited the wig shop with my sister and my very honest 17year old niece, we actually had a very good afternoon out. I also was worried about wigs as i didnt realise how good they could be and thought they would look obvious. The wig shop staff were great and i will be purchasing a very good wig which is almost identical to my own style. Although i tried one on slightly longer then my own and blonder, my niece told me i looked like an american porn star (my husband said i should have got it for a spare). If it does all fall out i’ve decided i will have one in every colour to suit my mood, i’ve just splashed out on 2 pairs of designer glasses ( i wesr glasses for everything) quite different from my normal plain ones, i thought it would take attention from my head just in case.
Thanks again ladies, i will keep you informed.
Rachel

Hi Rachel
I still have quite alot of hair after 4 treatments of FEC ! I have used the cold cap so far. Ecah time I though it would be the last, but there has been enough hair left by the next time to make it worthwhile again. I try not to look at the hair thats come out - but at whats left. An awful lot came out areound the 2nd treatment and I thought that would be it my husband had to almost tie my hands from combing it all out. But then it kind of stabilized and hasnt changed much for the last 3 weeks or so. I have a huge bald spot on top (think its hard for the cold cap to work on the top of anyones head) so when I go out I just put on a baseball cap for most things or a scarf for special occasions. The hair I have left is a bit irritating and sheds a small amount, but to be able to put a baseball cap on and feel OK is great. When it did come out at its peak I was really temoted to get rid as the hair on the pillow etc was distressing. But as said its now stabilised to a few hairs and hardly any on my clothes at all. to get me through the bad few days I got a scarf from Black outdoor shop (a buffy) which was basically a light weight tube like bandana designed for out doors to keep the sun off etc while climbing cycling etc. Its so light weight and easy to put on (no nkots) that I could sleep in it. All the hair stayed in the scarf which was a huge relief (£12.99) I think it was and I found that I could stay over at peoples houses w/o fear of messing up their spare bed or how much hair thered be all over etc. this made me feel normal. could have the kids in bed with me w/o them getting covered etc. Also kept it on when I get up in the morning so can potter around until I have the time to sort it all out etc. With only 2 more treatments left I am now beginning to hope I might be able to get through with my baseball cap.

Really focus on the hair you have left - not whats coming out.
TFN
Jane

I had my 3rd FEC last week and have, effectively, no hair. I didn’t go for the cold cap. I can’t bring myself to wear my wig but am loving experimenting with scarves etc. I bought a couple of sarongs from Primark’s beach section for £2 each - cotton with silver threads shot through them. I wear them in a 1920’s turban style and everyone remarks how good they look. You have to fold them a couple times.

I know everyone has their own views on wigs, scarves, hats,looking like you are having chemo etc. My view is that it’s me, my life and I’m going out how I feel like. Around the house I wear a bandana so I don’t scare the postman or any other callers

Hi girls

Just to let you know I had my best friend clipper all my hair off today, I was getting sick of picking up hairs from everywhere. Had bought a zandana (a bandana with ties ?) from the internet and it looks okay. Gets a bit itchy and has left a bit of a red mark but is real easy to put on. I suppose it takes a bit of getting used to it. Otherwise I quite like my new Britney look !

Take care
Diane x

Hi everyone

Sounds like there is alot of experimenting going on out there with wigs, scarves and hats!

I have never gone for a scarf but love wearing the “Benny” hats or “beanies” that my teenage son wears! I find my head gets so cold that I wear them in bed and around the house, and have now gained enough courage to wear them out for the odd dog walk (even bared my smooth head along our road the other day as my labrador & I strolled back in the sunshine!).

The rest of the time I wear my wigs. Am looking forward to getting a different style and colour for a change as all 3 of mine are various shades of blonde and 3 different lengths. Thought I might try life as a redhead for a change; well, it’s easier than having your real hair dyed!!

I got my chemos completely mixed up in a previous post; I actually asked my consultant on Monday to describe exactly what type of BC I have - no-one had really explained and I just got on with my chemo like a good girl!! It is only since using the forums that I read everyone’s technical terminology and wonder what on earth it means(!!) But anyway, for the record I have invasive ductal BC, oestrogen and progesterone receptive. I have actually had 4 cycles of AC (12 weeks), and two days ago had my first Taxol, which I will have every two weeks - 3 more to go.

Noticed that even over the past 2 days my eyelashes have become dangerously thin; it is a case of “spot the lash” when putting on mascara now!! I have taken to a thin line of liquid eyeliner above my eyelashes and just below the eye which tends to distract from the lack of lashes a little. Falsies are good for special occasions but I couldn’t bear to wear them everyday - they make my eyes water after awhile!

Britney - eat your heart out luv!!

Wendy xx

Hi everyone
I lost my hair after third week. Had bald patches one morning and when my 4yld grandaughter said I looked
like a baldy peacock ( kids dont you love em) I shaved the rest off. My husband shaved his head as well. Look like a couple of bookends . I wore a scarf for the first couple of days .I now go without anything and I love it no more hairdryer ,straightners or hairspray can be ready in no time. People who care soon get used to you without and those who dont care dont matter .I say go with what ever makes you feel best.

Dear All

I have no hair loss but it’s only 12 days after my first chemo. I am tyring to prepare for it mentally but find thinking about it makes me want to cry. I have had my hair cut very short (it was quite short anyway so no loss there) and am using the cold cap but as much as I’m trying to remain optimistic I think I should prepare for it.

Do the eyebrows and eyelashes go at the same time in everybody’s experience?

Cecelia. x

I noticed my a gap in my eyelashes for the first time last night - one week after my 3rd FEC. The eyebrows are a bit sparcer but still there.

I don’t think I’ll bother breaking out a new mascara!!

Sharon x

Hiya cecelia,

I lost my hair after my 2nd epi but I’m now just about to start CMF and my eyebrows and lashes are still v.much with me! Admittedly I haven’t had to pluck my eyebrows for about 2 months but they are still there. Apparently it is entirely poss to lose all your hair but for your eyebrows and lashes to stay.

One of the ladies on here recommended something form Benefit to me that you can buy from Boots, it’s called ‘Browzings’ and apparently its awesome if your eyebrows thin or you lose them altogether.

FYI, I got my b/f to shave my hair off for me after my 1st chemo. Thought it would prepare me but I still cried like a baby when it came out. I was inconsolable. I’m telling you this because I can hardly believe I was like that now. I am totally used to my little white bald head and I am loving the fact I no longer have to mess about with straighteners and hair products! I’m saving a fortune at the mo!!!

Take care,

Kelly
-x-

Thankyou ladies for the information and advice.
I lost most of my pubic hair last night in the bath! Only 13 days after my 1st chemo.
Bit of a shock but saves on the waxing!

Thanks
Cecelia. x

So on day 16 I am losing an incredible amount of hair from my head but as it’s thick it is un-noticeable so far. I will have to decide what to do within the next couple of days though, I don’t think it’s going to be with me for much longer.
Cecelia. x