Hello there, i’m aged 45 and currently having chemotherapy as breast cancer treatment. After my second session i’m now going through the trauma of coping with hair loss. My nerves are on edge and as my third cycle approaches i am struggling to eat and keep my strength up. I suffer with bad anxiety and wondering how i am going to cope under the strain. Can any body reassure me? I will over come this, and focus primarily on getting well for the treatment. I just want to hear from people who are going through it as well. How did you cope or coping?
Hi Diane,
Sorry to hear you are not coping too well, I am following a little behind you. I am due to start chemo 3xFEC 3xTAX next Tuesday and one of the biggest fears of mine is hair loss. I can honestly say I am more upset to be losing my hair than having lost my breast. Isn’t that awful? I am going to get a wig sorted out tomorrow and I shall probably shave my hair off and start using the wig before my hair starts to fall out as I really dread that. I know that I won’t be able to do bald or scarves so I have to be prepared well in advance!! I am 51 a bit older than you and I also have an anxiety problem. Many years ago I was prescribed venlaflaxine which I do find helps me. Do talk to your BCN or GP or even your Onc about your concerns, I am sure they can help you. We need all the help we can get right now. Please don’t suffer in silence and this is def the place to come and talk about your feelings, we all know what it is like and you too will be able to help us just by your posts. You can help me get through the chemo side cos I havn’t had the pleasure yet and you have managed two sessions so far.
I ame sure you will get through this, we all will!!!
Take care,
Jane
So sorry to hear you are struggling with all of this.It isnt easy.I’m 40 and just about to have my 4th lot of chemo on friday.
I was very concerned about loosing my hair but actually once it had gone i didnt find it too bad.When my hair started to fall out initially i had a crew cut at the hairdressers just to ease me into the total hair loss phase.I only had the crew cut for a week because i was finding a lot of hair on my pillow in the morning and in the end just asked my husband to shave it all off.I cant say i like it but i’m getting used to it.I found some pretty headscarfs on suburbanturban.co.uk. They arent cheap,approx £30-40 but i figured as i wasnt spending on haircuts i would spend on scarfs that i really liked.There are obviously lots of other cheaper scarfs you can go for on various other websites and in shops.
Have you had been offered an appointment for a wig yet?Personally i didnt go down that route.I found it a bit uncomfy and have been getting hot flushes and to be honest the scarfs just felt cooler.I did get a ‘false fringe’ from the wig lady and find that looks quite pretty with the scarfs.If you normally have a fringe you might find that it helps you get used to scarfs.
As for feeling so stressed perhaps you could talk to your GP to see if he can give you anything to help.I happen to be on anti- depressants which i was on before all the cancer thing happened.I guess they may be helping me cope.
I’m not quite sure what else to tell you to help.I have found my friends and family very helpful.I have a wonderful husband and for us, using humour to joke about my bald head and one boob has really helped.Its not for everyone i know.
You will get through the treatment.It is a long haul but every time you have another chemo its one less to go.
Take care.All the best.Sorry if this hasnt been helpful.Its difficult to know what to say to support people.
So sorry Diane i didnt see your name at the bottom of your post.I only saw the ‘stressed’ name at the top which is why i addressed my reply to that.Sorry that must have seemd unfriendly.
K xx
Hi Stressed lady/Diane
I just want to tell you how i coped.It is horrible losing your hair but I must say it was worse when it was coming out than when it had gone,I had my hair cut very short which helped and then when it started coming out I got my daughter to do a no 1 with a haircutter.I have finished my chemo , I had 6 lots of tac which was not nice but it does fade away all the problems you have!and had 15 sessions of radiotheraphy!My hair has started to grow,all i can say to you is the time months seem to come round quickly and it definitly helps coming on here! I had a masectomy and a reconstrucion which has had its problems,
I think its very hard but if you can try to except losing your hair ,the one good thing i found was it was lovely just having a shower and letting the water run over your head is a nice feeling !and easier to get dressed up with a wig , and not having to wash and dry your hair !and also talk to others,very best wishes julie
Have you enquired as to whether your hospital offers the cold cap which is a scalp cooling system - you wear a cold helmet for an hour before and after chemo and it can dramatically reduce hair loss. It worked for me on the same drugs regime as you - and there are lots of other ladies on here which have used it too. My onc tried to put me off by saying it wouldn’t work - but I remained determined and glad I used it.
Thought you might be interested to know that Trevor Sorbie has set up a charity to train hairdressers to cut wigs and to help them become more aware of aftercare needed when hair grows back after chemo.
It looks like this is a pretty new charity because the website is still under construction.However there is info about salons who are currently participating,approx 170 of them, and an email address and contact number for more info.The website is mynewhair.org
It might be useful to get in touch with them if you do decide to get a wig and see exactly what service they offer.
Hi girls,
Thanks for all your kind messages re hair loss, I did go today and sort out a lovely wig which my 13year old daughter tells me makes me look about 30. Wonder what she’s after?? My BCN told me about Trevor Sorbie and gave me a leaflet to read. Luckily the wig I picked and it was a hard choice, will not need any trimming. I did wonder about the cold cap but decided against it as I thought it sounded a bit like torture and as my hair is already thinning due to stress and menopause, I thought it might as well all go and I could start again. I have heard it grows back better and curly, its taken me thirty years to lose the curls and I didn’t really want them back!!! We are never happy.
Take care, love to you all,
Jane
Hi everyone - I have just had 2nd FEC today and had cold cap again but it was much more uncomfortable this time as i am moulting big time. Have decided it is time for hats scarves and wigs! I like you already have curly hair and rejoiced when straightners became my new best friends!! Really dont want to lose it in the first place and then have very curly hair. maybe by that time I will just be grateful for hair!!!
Take care
Denise x
I don’t know if this will help but I have just had my fourth EC chemotherapy whilst using the cold cap - and I still have hair - admittedly it is thinner than it would normally but and some does still fall out - but I still don’t need a wig… yet! I was actually scared of using the cold cap as I thought it would be painful but to be honest, it’s no biggy. Its uncomfortable for about the first 10 minutes and then seems to disappear. I get the nurses to give me a couple of paracetemol before hand as well - just to ward off any cold headaches!
Oncologists don’t always seem to be keen on promoting the cold cap as it lengthens the time that you are using a seat in the hospital. i was put off from the start as well - but insisted! I’m now about to start Taxol in the next few weeks which means sitting there with it on my head for 6 hours. My onocologist was dead against it but once again, this is about us, not how many bottoms they can get in and out of the unit in one day and if it means keeping your sanity going through this horrid ordeal - have a go. The worst case scenario is you don’t like it and you take it off and don’t use it again. I will say though, please persevere for the first 10 minutes as it does feel better after then.
I keep getting told that it won’t work on Taxol but I’ve spoken to Paxman who make the cold caps and they were extremely helpful and have given me hope for my next regime of drugs. All this said, i still have a wig in the cupboard ready to use if it does all come out!
I am 45 and have my final chemo on Monday. I had FEC first and lost all my hair, then had a 5 week break before surgery during which time my hair started growing back. By the time I started my taxotere my hair was at a length where I could go out without a wig or scarf. You can imagine my frustration at losing hair again! This time i’ve a couple of patches of hair loss at the front and a lot of thinning.
the cold cap wasn’t even on offer at my hospital but I suffer from headaches so wouldn’t have done it anyway.
My advice is:
Get your hair cut very short before hair loss starts. The worst part for me was seeing clumps of hair coming out in the shower.
Wig - Get this asap as it’s reassuring to have this ready. I was really surprised at how good my wig was. I don’t find it that comfortable and bit hot particularly during the summer but very useful for going out. I wear it shopping, or going out somewhere.
Scarves - get a few in different colours. I use them for going out for walks or for when I don’t feel like wearing my wig.
Jersey lace cap - I have found those the most comfortable and wear these at home all the time. You can get from quite a few suppliers and often come under night headwear.
It is hard thing and I was surprised about how much I have minded at the hair loss but I have kept reminding myself that this although this is a harsh treatment it is potentially life saving.
You do get used to it to a certain extent and whilst I am looking forward to my hair growing again I’m not so bothered by it all now as I was in the first few weeks of hair loss.
By the way, when my hair came back in between chemos it was thicker. My eyelashes had thinned and these came back extra thick and black! That was a real bonus.
elinda x
I agree that the hair loss is a very difficult pill to swallow. My hair I felt was my best feature and the thought of losing it filled me with fear (sounds so superficial after everything else were going through) anyhow I’ve had 2 of 8 FEC cycles so far and used the cold cap for both, although my hair was hanging on and I still had a coverage it was very thin underneath and my scalp was starting to be exposed, I therefore bit the bullett and shaved it off, the relief of not walking around malting like a dog was imense. Of course it’s filled me with great sadness to lose my hair but I keep reminding myself this is temporary. Try to look at this as part of the journey and we will all come out stronger and with thick curly hair hopefully!!
Experiment with hats, scarves and wigs and try to stay positive.
I have been through 3xFEC and 3xTax and lost all of my hair -everywhere - not one single hair did I have left on my body. I just want to give you hope that you will come through it. I am 6 weeks on from my chemo, about to start rads, and my hair is making a good comeback. On the downside I now have to shave my legs again! Soon I’ll have to start blow drying and styling my hair. I have to admit that I enjoyed putting on the wig to go out rather than spending ages blow drying.
There are lots of options out there such as scarves, bandanas, hairpieces etc. You just need to experiment and find out what you feel most comfortable with. It took me a while but eventually my personal favourites were a cashmere beanie hat for casual and indoors and my wig for going out dressed. I bought a few of the cashmere hats in various colours. They were great because they are cool enough to wear all the time but warm enough to keep you warm on cooler days.
Elinda, it’s good to know your eyelashes came back nice and thick. It’s the only area of mine that has been slow to return. Mind you, they were the last to go so I suppose it makes sense they’ll be the last to come back.
I won’t pretend there weren’t days when I looked in the mirror and felt like an alien had taken over but thinking of it as a temporary situation definitely helped.
Losing it was a bit of a laugh, and while I was going through treatment I didn’t much care. But now I’m beginning to get fed up with waiting for it to come back. It’s 8 weeks since my last tax, and it’s about a centimetre long, but very fine and growing quite sparsely, so that I still look more-or-less bald. Am I just being impatient, or is this normal?
Hi Sorry to hear that your hairloss is upsetting you. I must admit i had my hair cut shorter before i had my treatment but nothing prepares you for the handfulls of hair just dropping out or the lumps on your pillow in the morning. In the end i got my friends clippers and got my husband to take it all off. To be honest my poor husband felt awful but i coped much better once it had been done. Everyone is different and i think you will have to find your own path through this. On a more positive note it will grow back.
I think it was easier coping with the loss because (a)I had more significant things to worry about, and (b)it was part of moving INTO treatment. Now I’m finished with the treatment, I want to leave the whole damn thing behind as quickly as possible, and the continuing glint of sunshine off my baldy bonce is a constant and inescapable reminder every time I catch a fleeting glimpse of it.
I’d really like to know what other people’s experience has been of grow-back. Has anyone on Arimadex had similar slowness? Or is it not slow at all, and I’m just being impatient?
Sorry you are finding the hairloss difficult to cope with. I lost mine around day 15 of cycle 1 so by the time I had my 2nd chemo, it had been shaved by my fab friend. I cried buckets when I looked in the mirror for the first time (I did lose my lovely bob and have a short crop before chemo started to try and make the process more bearable). When it started to come out and fall in my food etc, I found that more traumatic. The last shower was the last straw, I was covered in it. That was trulyt awful. It had to come off and it is really suprising how you get used to it. I have a fab wig (being modelled in the picture) and some scarves and funky hats. I got through this awful phase, by thinking that if the chemo is killing off my hair, just think what it is doing to the cancer. It will grow back. I have chemo No 6 tomorrow and now have a fine convering, which I am really excited about. It is hard, but I am baldy round the house, and in the garden etc. I don’t care what people think. I just think to myself that losing my hair is part of the journey to getting better.
Hope this helps. Check out Bohemia Fashions on line - their padded scarves are fab and really comfy and you can slip them on and off when tied.
xx
Hi Ladies,
Its good to read all your positive comments. I have my first FEC tomorrow and am feeling very positive about it. I have decided I am going to breeze through it but I know my hair will go and I am all prepared. I was recommended a shop callled Trendco and saw them last week. I came home with a dark blonde highlighted bob but had a huge choice of wigs in all colours. I am def going to cut my hair or shave it before it starts falling out. I am looking forward to no waxing or shaving other parts of me though!!
Stressed, you haven’t come back and told us how you are getting on, I do hope you are feeling better now, there are lots of us here who know just how you have been feeling.
Take care, love to you all,
Jane
PS Janey your new hair looks great!