15 months after last chemo still waiting for my hair...:-(

[Dog Lover]

Hello,
I finished chemo Sept 2011 for breast cancer and I have very little hair on top and front. I was never told that there was a possibility that my hair would not grow back.

[Jaydun]

My hair is certainly not coming back hardly at all.  It seemed to be growing a little after I finished chemo and before surgery and radiotherapy, but then I started taking anastrazole(2 years ago), and one of the side effects is thining hair, so I am expecting it to be no good for the next 3 years. I don't bother with NHS for wigs, as there are some good wig shops with prices from £15 where I live.

[sara12]

Nannabarb, I got a second wig too because my hair wasn't growing very fast. Got my first wig in April last year and asked for a second one later - must have been around the November time when I finished treatment. If you still have hair problems you should be able to get another one - not sure if it's one a year or one every six months I expect it depends on your PCT or whatever they call themselves nowadays. Probably worth asking your GP. In the end though I've continued wearing the one I bought myself. In my area on the NHS you can only have ones from a limited range stocked by the hospital and they're not great - I did try to wear them but felt self-conscious. I know in other areas people can get a 'prescription' or voucher up to a certain value that can be used to pay/part pay for a wig of their choice from any supplier.

[nannabarb]

Hi Val,
I've not tried FAST, but a good friend of mine with thinning hair (not chemo related) has, she used it religiously for 6 months and it made no difference at all, so that put me off a bit.
I have also just bought a new wig, but I never knew you could get help with a second one? Is it because you have had a second diagnosis?

[geordiex]

Hi 7 weeks after taxol finished and my hair growing again lost my hair to fac chemo 4 years ago a nd the same thing happened guess I'm just lucky down side is get hairy face back 😕 x

[scottishlass]

I got a wig in December by in June I was going abroad and that wig was far too heavy and hot. I found out that I was entitled to another wig. This one is very short and is light it weight and is a joy to wear. I had it on today but I still have to whip it off when I overheat. But I like this new short wig very much.
Thanks for letting me know your opinion about FAST. I wonder if it works for anyone at all? It woul be good to know because if it did work for some people I would give it a go if my hair does not return to its usual mode. Val

[sara12]

I tried FAST too and it did nothing for me I'm afraid. I'm now a year on from finishing chemo. My hair has regrown to some extent, but is fine, greyer than it was and is impossibly frizzy (I used to have nice straight glossy hair). Also have thin patches on top. I would say that it is now 2 - 3 inches long but that's slow growth for a year, and it looks shorter because of the curl. I use mini-straighteners to 'stretch' it but in the heat/damp the curls bounce back.


I have been wearing a wig for 15 months now and am getting fed up with it especially in this hot weather. I'm going to have my first post-chemo hair cut in a couple of weeks time but anticipate still having to wear my wig for a while as I also have non-chemo-related frontal fibrosing alopecia which means I need more length at the top to pull forward to cover the hairless area at the front. First thing I do when I get back home though is take the wig off and sling it on the stair post!

[Faith_63]

Hi all, new to this forum I'm 7 months post chemo,
tried the shampoo, think its a waste of money ! Xx

[scottishlass]

Hello nannabarb, I don't know if you have seen the new shampoo that is out called FAST which helps with hair growth. It doesn't work I understand if you do not have active hair follicles but you do. You can buy it oneline or Boots the chemist sell it. I had a look at it in Boots a few weeks ago but my hair is just appearing after recent chemo so did not buy it. It is expensive at £27 but there are two bottles in that pack, one shampoo and the other conditioner (I think). But you can buy it oneline individually. I have not heard back from anyone on here who has actually tried it with success but if my ceases to grow I will be giving it a try.
I have just looked it up on here and Boots have it for £24.99 There are also reviews and youtube have a video but I haven't watched that yet. If you try it and it works let us know! Val

[nannabarb]

Well Ladies, It is now exactly 2 years since I had my last Chemo, and I am 2 years into my Arimedex /tamoxifen treatment, and sorry to report that my hair is no better at all. Still baby fine, very thin on top very slow growing.
I even tried dying it so I could monitor the regrowth, and it just proved what I already knew.... that it bearly grows at all on top.

Hope you are all having more luck xxxx

PS still feel a little guilty as apart from this I am doing very well

[Lucy_BCC]

Sorry Nannabarb I'm afraid we can't discuss any individual forum members

Kind regards

Lucy

[nannabarb]

Thanks Roadrunner, will have a look to see if she is still active on the forum - CAN THE MODERATORS HELP??

[RoadRunner]

The lady campaigning a few years ago to get the drug company to pay for her wigs had a user name Pineapple I think

[nannabarb]

Hi January,
Sorry to hear you are in the same position as me. Its so frustrating, as apart from the hairloss my treatment went really well with few problems.
There are now several threads on here with other ladies having the same problem. Some have tried the various 'stimulating' shampoos with varying degrees of success, others are opting for weaves / extensions.
So when my ONC said to me 3 weeks ago that he has never seen such a bad problem of poor regrowth in 30 years... somehow I dont believe him, and they just say that to shut us up rather than admit its a problem that they dont have an answer to.
Please feel free to message me either on this thread or as a private message if you want to talk more.
Barb xx

[January]

Hello
I heard about you from a friend of mine who like you and me is suffering from lack of hair. I finished my chemo in May 2011 and still have virtually no hair on top. Two what look like bald patches on the back and a little more hair around the sides. A Coco the Clown look I suppose!
I seem to be finding this side effect very hard to cope with and am really cross I was never told that permanent baldness was a possibility. Of course there is no way I would have refused the treatment but I would certainly have asked if there was an alternative Drug which was just as effective and gone for the cold cap.

Over the last year I can't really see much improvement. I have tried some lotions and potions to rub in but really feel the follicles need to be stimulated from inside me rather from outside.
It is very aggravating that we in this position are constantly being told that it is very unusual but I am not so sure that it is such a small percentage as the medical profession would like us to believe.
I would be interested to hear from you.

[nannabarb]

oh nonny, so sorry you are still waiting...I think it is what we all dread.. how do you cope? Do you wear wigs, or (like I do most of the time now) say sod it, this is me,take it or leave it?? I find it hard to imagine never having a full head of hair again, having had really thick, lustrious hair before
Have sent a friend request , please keep in touchxx
Barb

[Nonny]

Hi all, I had six lots of TAC back in 2008 and I have male pattern baldness and very fine hair, not a bit like it was before. I also suffered from periodic outbreaks of alopecia prior to TAC, I wonder if this does affect how the hair grows back. I was Triple Negative so am not taking any medication but it looks as if my hair will never grow on the back of my head. I have not tried any of the lotions that are supposed to help men keep their hair as there is a disclaimer on them saying not for chemically induced hair loss, and as they are so expensive I have never bothered. I did think of asking my GP if Minoxidil would make any difference but haven't plucked up the courage yet! My Oncologist sat there and said before I started TAC "your hair WILL grow back" I wonder if he has changed what he says now.
Love and hugs to all
Nonny

[cherub]

There's no doubt some of the drugs affect the length of time it takes for your hair to grow back. I was really unwell on Taxotere back in 2007 and I had Herceptin for months after, which the oncologist told me affects hair growth. It took 6 months after the end of Tax before I had enough to resemble a very short crew cut and I didn't really have anyhting I could actually have styled for about 3 months after that.

[nannabarb]

Little update: Saw Onco today, yes, Tax and Armidex are to blame.. not a lot I can do except wait.... she suggested we might try a different aromatase inhibitor, but not for another 3 months, as on Friday they removed another little lump (almost sure this one is benign, but have to wait for path report to be 100%), and dont want to change meds until we are sure... so looks like a hairless/wiggy christmas for me......

BTW - on a happier note I GOT EYEBROW TATTOOS in April and would DEF recommend them to anyone who has lost their hair = stops you waking up looking like an alien in the mornings... considering eyeliner tattoos too (have to save up though).
ALSO.... booked places for me and my daughters on next years Race for Life - 4th year running (even in the middle of chemo last year *blows her own little trumpet* - sign up girls, great fun xxxxx

[nannabarb]

WOW!! I never realised there are so many of us! Thank you all for your comments and suggestions, my baldness is in the same 'male pattern' you are all mentioning. I have cut it very short two or three times this year, trying to encourage growth, but that has not really worked, just made it a little neater for a while. I did wonder if the Arimidex was partly to blame, and as I have a follow up with the oncologist tomorrow, will definately raise the question with him.
As you all say, given the choice of recovery or hair loss, what choice do we have, but I was never warned the hairloss could be permanent or long term... and the platitudes from well-meaning friends or relatives do not help. I HATE photos of me with my new grand daughter without my hair, almost as much as I HATE pics of me in my wig, which is very convincing in the flesh, but somehow looks very 'wiggy' in photos !?!
At 52 going on 53 I dont feel old enough to completely give up on being just a little bit vain, I would like to feel attractive in front of my man, but just dont, we like like Morcambe and Wise in bed together lol
Thanks for all the support, us baldies must stick together !!! xxx

[topsymo]

Hi Nanabarb- oh,what a familiar story! Although failure of hair to regrow is not the norm, there are in fact quite a lot of us out there. I'm so sorry you have had to join us.
There are 3 main factors as far as i can see
i) Taxotere
ii) Taking Arimidex
iii) Being 'older'- ie over 60
Maybe wearing the cold cap would possibly have helped but I'm not sure on that
I wore a wig for two and a half years and am now 4 years post treatment. My hair has continued to grow a LITTLE more as time has passed but there is still a lot of daylight to be seen between the strands.
A couple of tips:
i) Don't waste your time and money on so -called baldness cures, lotions and potions.
ii) Once you have some hair, find a good hairdresser and have it trimmed and shaped regularly. I now have mine cut very short every 8 weeks and I know this has helped.
iii) Unless you really can't bear it, DO wear a wig- it is always better than the alternatives - in my view.(and it doesn't tell everyone that you have cancer - which is important to me) My wig did a lot for my confidence because i knew it looked OK.
Now- with my own thin hair, just when i think it doesn't look TOO bad i see a photograph of myself and realize i am deluding myself. No matter how kind people are "it's really growing" etc etc --I KNOW I am semi- bald. I know some of my friends really think I would have been better to continue to wear my wig which did look pretty good. It was an inexpensive NHS one trimmed by a Trevor Sorbie trained stylist. Maybe i'll get it out agani.............
PS This week I have seen my Onc specifically to discuss coming off Arimidex early - ie after 4 years rather then 5. This is largely because of the drug's effect on my arthritic joints but I'm also fed up with hot flushes and I'm also VERY fed up with my hair. The Onc was sympathetic and, as I expected, said the decision must be mine. He didn't tell me I was being stoopid- and he DID say that quality of life is important and at my age(70) I have to weigh the risk of BC recurrence or secondaries agaimst other factors. I have decided to go with my instinct and am coming off Arimidex for a two month trial - initially.
Obviously that is MY decision and MY cirumstances- I would never presume to advise anyone else on this- but with or without aromatose inhibitors our BC might still recurr - we are never 'cured', are we?.

[janipi]

Hi I am 18 month post chemo and I gave up waiting for my hair to grow back and now have a new wig. I hated wearing a wig through chemo and wore hats/scarves. I waited and waited patiently as everyone said it WILL grow back but it hasn't. I have soft fuzzy hair with male pattern baldness. There was a thread recently about this problem. After a bit of googling I am finding out that TAX chemo could be the culprit and in as many as 5% of cases hairloss is permanent. There has been a study done in France and there is an article on PUBMED but I'm sorry I don't know how to do a link. There is a lady under the name of lazycat on here who is trying weaving as an alternative to a wig. I'm waiting to see how she gets on with it as I might consider giving it a try. I have never been a vain person and didn't mind too much when I lost my hair as I thought it would grow back. I am learning to come to terms with my looks but I will admit it has been very hard for me. I did not use the cold cap and I'm wondering now if that would have made a difference. I always feel so guilty about moaning about it as I know I am so fortunate to be NED and getting on with life. I draw in my eyebrows and use cheap false lashes for going out. Nice not to have to get rid of hair in the unwanted places though. My new wig was cut by a Trevor Sorbie salon who cut wigs for free. It does look really good and not "wiggy" so I am feeling much happier to glance in a mirror now and again. It cost 79 pounds in total which is close to what I used to spend for cut colour and highlights befor BC. Hugs to all fellow baldies xx

[sara12]

Tors, that's comforting to know that there can be improvements, albeit small ones, a year and a half down the line. I guess I will just have to be extremely patient!

Likeslilac - yes, my sparse patches are in the areas affected by male-pattern baldness now and I know what you mean about feeling your femininity is being taken away. I'm a similar age to you and keep telling myself it shouldn't matter so much at my age, but it does. I get a bit impatient as well with well-meaning people who keep telling me about people they know whose hair grew back thicker/denser/darker/curlier etc etc - I'm sure it did, but it's not a comfort to me to hear that! I agree we're lucky to still be around to moan about the hair though.

JCJ - the LGFB workshops are good fun and worth attending for the freebies, if nothing else, but they have nothing to say about hair loss on the head. They do give advice about pencilling in missing brows, and applying eyeliner, but that's it.
Sara x

[JCJ]

Hi ladies. I didn't have chemo, sorry, (I know that shouldn't make me feel guilty, but it does!) but I would just like to mention that since having Zoladex injections and taking Tamoxifen, MY hair has started to recede at the temples and seems to be falling out more than it used to. I have long, thick, hair; greying because I have never coloured it.

Perhaps when you stop taking hormone therapy, the situation might improve? I know it's a long time to wait but I wanted to show SOME light at the end of the tunnel.

Have you heard about Looking Good Feeling Better workshops? Many ladies on here have been to them and say they are brilliant. You may get some helpful advice. Here is a link:
http://www.lookgoodfeelbetter.co.uk/site/index.cfm

I hope that helps. Hugs.

[Lilac51]

Hi Nannabarb
I wish I had an answer.
I finished chemo (FEC/taxotere) at the end of May. I'm post menopausal and shall be taking anastrozole for the next 5 years. I was told it was a component of the FEC that would make me lose my hair but it would definitely grow back - I only found out after the event that the TAX can influence it even more, and it might not grow back. As with Sara, the TAX knocked me for six but I was (and still am I suppose) grateful I had been given it as everyone says it is the gold standard. My oncologist told me he was going to give me the strongest chemo he could and more or less told me I was a tough old bird and could take it! (Actually he was quite kind and said I didn't look 60, in fact I could be in my 50's). So .. even if I had been warned in advance, I wouldn't have refused it but that doesn't stop me from feeling so down about my hair. It is growing but it's thicker at the sides and at the front, receding in a masculine way at my temples and thinnish on the crown. Every time I swallow an Anastrazole tablet I feel a bit more of my femininity is being taken away from me but I daren't stop taking them even though they might cause thinning hair.
Having said all that, I'm grateful to be here and to still have the chance to moan about my hair.

[tors]

Hiya, I know exactly how you feel losing my hair was rubbish but I always naively assumed it would come back well, so I wasn't as bothered as I might otherwise have been. I had fec-tax chemo from April 2010 to august 2010. The hair came back in a sort of male pattern baldness way. The sides and back were much quicker to reappear and much thicker than the top. My hair used to be quite fine, but very dense. I had loads of it. It's only in the last few months that it seems to be thickening up a little more. I used one of those hair loss shampoo and lotions from Boots, and it seemed to grow ok on that, but it's also coincided with the (sporadic) return of my periods, so maybe it's higher oestrogen levels affecting it. The fuzzy fine baby type hair round the front has now started reappearing, which suggests it's thickening up. It is definitely still changing and progressing though, that much I do know!

I used to part my hair on the wrong side as this automatically made it look fuller and thicker. I found volume boosting products could actually make it look sparser as it lifted the hair away from my crown more, so you could see my scalp more easily. I preferred to use Frizzease serum on it, a tiny bit, and it made it less fluffy and weighted it down a little so my scalp wasn't as visible. The maddest thing I did was to basically colour in my scalp so it wasn't so visible against my brown hair. It was all very low tech, but if I was going out I'd use my normal everyday brown mac eyeshadow (which always has great staying power and good colour pigment) and with a long eye make up brush I would just dab it on all over the bits on show. It did make a difference. There were products you could buy, Joan Rvers does a range, but I couldn't bring myself to buy those.

My hair is much better now it's a little longer and nobody would know I had issues with it, it's looks objectively alright and is still improving I think. But I know it was better before cancer, and that annoys and upsets me. But it is still improving, 27 months after chemo ended. And I figure that if it took my body 20 months to kickstart my periods, and they are still not settled, then this chemo can have a longer lasting effect on all parts of our bodies, and it can reasonably take a few years to get the effects out of our systems.

Good luck with it. You're not alone, many of my chemo buddies have had exactly the same and we know it's sh!t.

Xxx

[sara12]

Nannabarb - I don't have any advice I'm afraid - but you do have my sympathy as I think I may have the same problem as time goes on.

Like you I had high doses of TAX which wiped out my tumour and my surgery just removed dead cells. So my body had a strong response to the docetaxel in a good way - but unfortunately in a bad way too - TAX knocked me for six and I suffered all possible SEs! I finished my chemo exactly a year on from you and I'm about to start my rads next week.

Before chemo I was already suffering from a type of alopecia that is non-reversible, so I was scared that the condition would take advantage of the empty hair follicles to spread, when the chemo hair loss came. I mentioned it to my onc but he wasn't sympathetic at all and obviously thought I was making a fuss about something trivial. When I said to him that I'd heard some people never got their hair back with TAX he just looked uncomfortable and said it was 'rare'. I think the lady mentioned above who was campaigning about it said that it could be as high as 10% of people affected. I agree with you that we are lucky the treatment destroyed the tumour, but living with hair loss is hard. On the other hand, if I'd been warned, would I have taken the risk of refusing chemo to preserve my hair? I don't know.

Again, like you, my hair used to be my crowning glory before the alopecia started. Then I was just about able to camouflage that with a fringe and keeping my hair at shoulder length - I wasn't happy about it but could just about cope. Now after chemo my hair is growing back patchily and extremely slowly. 3 months on from last chemo and it's about 1/4" long and very fine. I can also see that my hairline has receded even more than it had before and at the moment I can't imagine that I'm ever going to be comfortable going out with my natural hair. Scarves and hats don't suit me either, but I have a wig that's OK - however, the thought of having to wear wigs for the rest of my life is something I'm having trouble coming to terms with.

So if anyone does have any advice I'd be interested in it too. Unfortunately nothing can be done about my alopecia ( the hair follicles are destroyed and close over) but I would certainly like what hair I have left to grow more evenly and thicker.

Good luck - I hope you find a solution.

Sara x

[supertrouper]

I finished chemotherapy at the end of November 2011 and was on a high doseage of Taxotere for 4 cycles and prior to that on 4 cycles of EC. I tried the cold cap but all my hair left within 4 weeks of the first dose so didn't continue with the cap after that. I rubbed emu oil into my scalp every night and my hair started to grow back before the end of the Tax chemotherapy but it was very thin and white. I decided to shave it all off again on New years day and was able to go without my wig at the end of May. Prior to all my treatments I had very thick hair, it is now very soft but I have good coverage and have had my hair trimmed three times so far this year. I am on daily letrozole tablets as post menopausal. Hope you find the answer you are looking for.

[nannabarb]

Thanks for your post Lily, I will have a look through, I have tried searching before with out sucess, but now I know there was someone else posting about it, I might have more luck. If anyone can remember this lady's name it would be much appreciated. I have a follow up with my oncologist on Monday, and I am definately going to be quizzing him about it.I think I was on a high dose of TC (taxotere / cyclophosphomide). Good luck to you too Lily, stay healthy xx

[Lily200]

Hi, I am not in a similar situation but can imagine how I would feel in the same situation, as 'oh no my hair' was my first thought when told I should have chemo. Some may say it was my vanity but I just wanted to blend in and not be noticed and not have people able to identify me as having cancer. There was a lady campaigning a few years back as her hair had not returned and she was trying to get the drug company to warn people in advance that this was a possible side effect of the drug she had. So if you can hunt through the archives or search it, you will find a lot about it. her name escapes me at the moment and I don't think she still posts but someone else may recall her name. I vaguely recall that one of the T drugs was the one involved. You are definitely not the only one although it may be an unusual reaction. If you find her posts you may get some comfort or help from reading her thoughts and what she did. Good luck and wishing you well love Lily x

[nannabarb]

Has anyone else had this problem? I suppose I am 'lucky' - I had the best possible result in that my chemo prior to surgery wiped out the tumour, and surgery was just to make sure it was gone. Chemo was one bout of FEC=T , which was then changed to 4 more of TC, as they had found a minor heart problem (nothing to worry about I'm told...). Last dose was on 25 July 2011 Had radio which finished in November 2011.
But my hair resolutely refuses to grow back in all its former glory. I used to have thick, curly hair, which was the envy of a lot of people, I now look like a man. It has grown a little, but is very sparse and fine, receeds at the front and the sunlight glints off my scalp. I have given up wearing my wig except if we are out in the evening, and scarves and hats just look awful on me. I know compared to a lot of people this is nothing to worry about, but it has affected my confidence big time, I never feel attractive as my hair really was my crowning glory. When it was falling out it never bothered me too much, I thought it was a small price to pay for my health... but all this time later... anyone else I know who has had cancer has not had this problem...is there anything I can do? My well-meaning daughter keeps pointing out lotions and potions by celebrity hairdressers trying to sell their wares, but I cant help feeling that putting something on my skin wont heal the damage inside.
I feel guilty for complaining about this, especially as a good friend I made when we started treatment together has mets in her lungs/liver and brain and we are doing all we can to encourage her to keep fighting.
Advice please?
PS Forgot to mention I am post menopausal (since before BC) and taking Arimidex (Anastrozole) for the next 5 years