I’ve trawled the Forums as far as page 8, Ive read loads of Posts I never intended to and by turn I’ve felt scared, anxious, relieved, angry etc with all the information and concerns I’ve come across.
Don’t we go through it?
However I’ve no more time today to look further, so if there is a thread on this subject already I apologise.
The whole breast cancer experience is devastating but I think the hair loss issue is just adding insult to injury. Perhaps we transfer the fear for our lives to the actual loss of our hair, which is why it has a huge impact.
I used “cold-cap” with only limited success, ended up with a wig (which I hated) and at the end of treatment hair returned. Not hair as I knew it though. It was wavy, dense and grey rather than mid brown, straight and rather fine. I wasn’t impressed. It’s taken a year to get used to this but I noticed about a month ago that I was starting to lose hair again. At first I thought that it was just the natural cycle asserting itself but now I can see it is getting very sparse over my crown. I’m having to do a “comb over” to disguise it.
Has anyone else had this problem? The chemo was epi-cmf by the way.
Any advice as to what to do? I’m really scared it’s all going to fall out again.
Just to say i havent really got any advice as to what to do except to say that i am struggling too. I had 4 FEC & 4 Taxotere which i finished approximately a year ago. I too tried the cold cap but it didnt work and hair fell out before 2nd FEC. I have worn a wig since when I go out. The wig is very nice. I bought it myself from the internet.
But my own hair i am very unhappy about. I used to have very thick, curly hair. After approximately one year it has struggled to grow back, I have thin patches at the front. It is curly but short. I despair that it will ever grow at the same rate again. I have just coloured it this weekend for the first time with a semi permanenet colour. I am also on Arimidex and feel that this is affecting the hair or lack of as I understand Arimidex is supposed to block the production of oestrogen and everything i have read on menopause says that after menopause hair slows down because of lack of oestrogen.
I am consideering going to a trichologist for some advice.
I was desperate about mine. It grew so very slowly. Finished 3 x FEC and 3 x Tax in October 2007. Then herceptin and of course Arimidex. Only now is it growing fast again. Hang on in there and it will be ok.
Many thanks for your words of encouragement. I too have just finished 18 Herceptin. So it is good to know you are doing well 2 years later. I am in the place of being afraid at the moment as apart from Arimidex treatment has finished. So worrying now it may come back. Hair seems the least of problems really. Lymphoedema is much more of a problem than no hair.
Overall the way treatment leaves you is not generally the same as you were before if that makes sense. ie no breast, no hair, rubbish nails and lymphoedema for life.
Sorry just me feeling sorry for myself. I’ll get over it
Oh Starfish do not despair. My nails were beyond disgusting but back now. Thankfully I seemed to have dodged lympho. But it really does get better. Hang on to that my love.
I know exactly how you feel. No breast, no hair, rubbish nails and Lymphoedema for life.
I am due my 6th Herceptin on Friday, one third of the way through. On New Years Day I am due my 9th, halfway there. That’s how I am living my life now, goal reaching, whether it be a stage of my treatment, a day out or a holiday, just something to reach for. I have given up wondering ‘will it come back’ as all it was doing was making me depressed.
Hairwise; I was lucky that I had a months break between chemo and rads and then 2 weeks break before I started Herceptin. That gave my hair a chance to start growing again after the Tax, then I noticed it slowing down. I saw my Herceptin specialist last month and she said that hair only grows at half the normal speed on Herceptin. Perhaps yours will start growing properly now, let’s hope so.
What a good job we have BCC to have a good moan on. Hope you are feeling better today.
Just to let you know that I’m now 1 year on from epi and my hair has come back thick and curly with no grey(I’m 57). If I leave it, I look like Susan Boyle, and if I blow-wave it, I look like Camilla Parker-Bowles. So can’t win really although I feel so much better now I have a full head of hair.
My hair took ages to grow back when I was on Herceptin and I was also told by the nurses that it slows things down a lot. Still, I was just glad to have anything at all. When it got to about an inch and a half it was like a silver afro perm from the 70s. One of my friends is African-American and he used to joke it was curlier than his. I bought hair straighteners and was terrified of them. Thankfully the kink left after about 6 months of getting my hair back.
I had 3 FEC and 3 Tax completed in November 2007, nearly 2 years ago.
My hair was shortish, straight, quite fine and brown with a little grey at the sides. My hair came back a dirty grey and very wavy. It grew back slowly. In the May after I had enough hair to take my wig off and went to the hairdresser and had it dyed. Unfortunately at the first attempt my hair went a pinky ginger so the hairdresser immediately put a stronger colour on and since then the grey never grew back(only at the sides ).
It is only now - 2 years on - that it is starting to feel like I am getting back to normal. I still have a wave and don’t like the texture of my hair. I keep it about 3 inches long and use straighteners on the ends as they are frizzy, as it can look like a bad perm growing out.
I think it takes a long time to get the last of the chemo out of our systems.
And I imagine that if our hair was one of the first places to be affected by it, it may well be the last to recover, too.
I took Femara a little while ago and my hair thinned all over. I lost my thick curls, which I didn’t like.
Now having chemo (again!) and love my spiffy wig to bits. My hair is now slowly growing back, but I think I might keep it very short and stick with the wig - looks far better than my own barnet ever did.
I find wearing Marigold’s for housework and washing up has helped my nails no end.
Have to agree with Starfish and emmbee, tho’. I’ve found lymphoedema-for-life the most devastating aspect of this poisonous disease - disabling rather than cosmetic. No quick fixes for that.
Dilys, be vigilant, won’t you? Average time for developing lymphoedema is about 3.5 years afterwards.
Hope I don’t sound unsympathetic - I do genuinely feel for those whose hair has not regrown properly or has totally changed - and I hope for a sustained improvement for you all.
Oh lord, thanks for the warning about lympho. I do try hard to avoid hurting the affected arm, and still do my exercises. Not really sure what else I can do! So sorry to hear you are having chemo again though. Sending you much love
Sounds like you are doing good by your arm already!
There is a school of thought that recommends issuing everyone ‘at risk’ with a sleeve to wear whilst carrying out tasks and activities thought likely to trigger lymphoedema, such as ironing, shopping, computer work and expecially flying.
Trying to obtain a prophylactic sleeve on the NHS is very difficult and while there seem to be a few people on here who have got one, the majority haven’t. Some have then gone on to order and pay for them privately.
I have to say that wearing a sleeve as a preventative measure seems like a sensible idea, but I don’t honestly know if there have been any reliable studies to back it up. I think that you would have to be very careful that it was a good fit, otherwise it could end up causing the very situation it was intended to prevent.
Apologies to all the ‘hair’ people for thread-jacking.
Wow, I’ve been away for a few days and I wasn’t expecting all this action following my post! Thanks for the responses, although I don’t think they apply to my situation as I’m Triple Neg I had only epi-cmf chemo and no follow up hormone therapy. Someone has suggested it may be down to stress, so now I’m worrying about worrying.
My hair has returned though i don’t like it short and curly but then i feel guitly because i suppose i should be happy with having some hair. I thought i would mention and intative by a company called Racoon International, they make hair extentions and have amazing results on even the thinest hair. Hair has to be about 4 inches long and you mustn’t have any scalp problems, but its worth taking a look. I went for a consultation today and think i may go ahead and have it done, i am thinking of strating a blog on it so anyone that is interested in following the process just PM me
well thank you aquarian lady for the original posting xx
I too am triple neg, and i am struggling with my hair like you would not believe, well maybe you all would actually
Before it was long straight and naturally blonde, never ever had it dyed something i was “proud” off, now it has grown back thicker so much darker and a kink to end all kinks and challenge even the hottest straighteners
I make a joke, but it is far from a joke, i have been truly distressed about it, sobbing most mornings, not going out some days, absolutely despair…i sometimes wonder whether it is doing me “good” having my hair to be so angry with rather than cancer itself…weird…
I just cannot seem to find a trustworthy good hairdresser either despite asking, having consultations and trying different salons, paying a rather lot of money too…it has been / still is an awful experience…
i too saw the racoon extensions a while ago now and logged on to the site and sent my details in but i have not heard anything…
Thank you for letting me know indirectly that i am not alone…i wish you all speedy and morale boosting hair growth…
BlondeBird - give them a call. I know they are trying hard to get hair dressers trained up to take part in the Hair in Recovery programme and they don’t have many outlets taking part at the moment.I too loved my hair, as i loved my breasts, and my body yet through all this at times i feel all the good bits of me are being taken away :9 I am trying hard to claw things back. I rarely wore scarves when i was bald, yet I sometime feel i have to cover up my curly short hair it makes me look so old.
