Still BALD Two Years After Taxotere

Hello Ladies - I lost all my hair, finger nails, toe nails after taxotere — nails grew back but not hair. Anyone with similar experience?
I was NEVER TOLD this was a possible side effect.

Hi okblessed, nice to have a play mate on here!
I am a year on from you - if you know of any other ladies with same problem can you point them in this direction.
Whats your story - what have your onc etc said? have you been in touch with SA? what have they said.

I am not in the position as you ladies, but I just wanted to say that I have suffered MANY SE from taxotere that I was not told about, particularly the fluid retention bit.

If there is any justice in the world, then I hope something can be done for you both. If there is a petition to sign point me in the right direction please.

P xx

Hello OKBlessed. My finger and toe nails all came off while on tax - completely peeled away. A year later they still aren’t normal. Neither do I have any eyebrows or eyelashes and my hair is still very thin.

The nail thing bugs me the most. When I went for a follw up check recently the doctor who saw me didn’t believe that I had lost all my nails on taxotere - she thought I was a really, really obsessive nail biter.

I have heard somewhere that total and permanent baldness can be a risk, but it is very small and remember somewhere that a woman on these forums had written to the drug company about it but she did not get a very satisfactory response.

You are right, this is something that we just aren’t warned about at the time of signing our consent. To be honest, though, I don’t think it would have stopped me having the tax. It just would have been more honest, I think, to have been told.


Hi Deirdre, i am the one thats always harping on about permanent hair loss with Taxotere on this and other forums.
We are NOT saying not to have the drug, just we have the right to be told ALL the possible side effects so we can choose weather or not to have the drug. Its our choice. This website, however, does not agree with me and thinks its better if they pick and choose which possible side effects to inform us about! which i personlly find outragous. But there we go. As i said on my thread, i contacted the mcmillan site and they said they will definatly change their info, so at least that site doesnt try to hide the truth from us. Sorry to critisize this site as i have used it sinse i was DX, and its been great however i find it very patronizing and sneaky that they wont include side effects that Sanofi Aventis say themselves happens (albeit rarely).
If i had been told that i would have be bald forever i would never had the drug and asked for another.

Hi pineapple

If BCC won’t include information this is just another example of breast cancer charities being patronising towards women and treating them as small children.

I did know that any chemo can cause permanent hair loss though unsual but it is horrible finding these things out after the event.

Jane x

Hello Jane, yes indeed VERY patronising!
They said
“However, as an organisation we try to offer information that is not only accurate but also balanced and appropriate for as wide an audience as possible. Therefore, based on current data we don’t think that the information about hair loss in our Taxotere factsheet is misleading and so don’t plan to alter it at the present time”.

Obviously i dont agree, as it should be accurate first! which of course we now know it isnt. They might not think its important but had i read it before i had taxotere i would at least been open to the possibilty.

I have an American lawyer that i am in contact with now, they are very interested and also interested in the response that SA gave to this charity, hopefully the ball has started to roll.

I finished taxotere in May 2007 and still have no eyebrows.Lashes are short and stubby but head hair is ok.

Hi Horace, i have sent you a private message, please let me know if you recieve it or not.
Many thanks

ps- maybe you have time to go onto my blog
there is a poll on there about hair and eyebrows etc.

Dear pineapple I received your message and have emailed you.Feel free to contact me via email or this site if you wish.

My God - i had no idea that this was a possible side effect - and i was just whining today about how long its taking my hair to grow back post chemo. I finished tax on 10/09/08 - have full coverage but not yet possible to style. eyebrows back and eyelashes fighting hard to come thro. Why is it that the unwanted hair seems to have no problem growing!!! would love not to have to shave my legs or get bikini wax again… But i promise after reading about this side effect i will not moan about how slow my hair is growing back. Is there nothing that can be done to reverse this? although i thought about using some of the remedies for baldness - but then thought if they encourage fast reproduction of cells it might cause the BC cells to multiply also - so decided not to go down that road - you never know how much you absorb thro your skin.

i agree something definitly needs to be done about the information sharing


You might be interested to know that apart from me 5 women have now taken part in the poll on my blog - so thats another 5 women with some or all of their hair not growning back.
Some other lady has also emailed one of my contacts in USA and she is also same as me and okblessed.
THERE are MANY WOMEN with this problem - Please, if you know anyone that their hair hasnt grown back please ask them to contact us. Things are moving and starting to happen and it would be great to have as large a number as possible before it all kicks off.

Hi Pinapple,
I find the situation you are in to be absolutely horrendous, and I hope that you do get some compensation for your suffering. I do worry about the information given out by the medical profession re chemotherapy.
Although I have had no problems with hair growth, 2 years on my nails still refuse to grow without shredding, but the biggest problem has been with bone degeneration. I know that many women on hormonal therapies have problems, but I am triple negative, so I have only had Taxotere and FEC. Just before treatment I had perfectly clear bone scan and was fit and healthy. I am now in a wheelchair, have had disc collapses, hip, ankle and other spinal prolems, and latest scan showed major degeneration in my sacral spine area, for which I had treatment yesterday, but nothing is working as bones are collapsing faster than they are repairing! Am I the only one this has happened to?
I thought having the cancer and treatment were bad, but my life has been ruined since, as I am not even able to sit upright without pain. But whenever I mention the words Taxotere and bone problems in the same sentence the idea is rubbished! I would love to hear if anyone else is suffering from this problem. I do understand that it may be due to early and sudden onset of menopause causes by chemo, but it seems a bit more extreme than that.
Best wishes,

Jax it is a bit more extreme than that - many people have early and sudden onset of menopause on chemo but do not end up having to use a wheelchair and having their bones crumble painfully. It would seem not unreasonable to suppose the chemo is a factor. I would have thought that a person with an interest in these things, someone like a doctor for example, might be fascinated, scientifically, and medically, to know what’s going on there. But no, they have a certain agenda and aren’t interested in this process because it doesn’t fit with that agenda. So they don’t hear when you tell them about it. You might as well talk through glass. They’ll watch with amusement as you gesticulate, and then call the next patient in.


Hi Jax,

That is horrible. Are they at least giving you medication to try to stop the bone loss? The average bone loss for chemopause is around 8% of bone mass (about 4 times the rate of normal menopause). It is not at all normal to be completely falling apart like you are.

Jax, thats terrible for you, makes me feel guilty harping on about my hair not returning because of taxotere. However i do undertsand what you mean about nobody listening - they are not interestind at all in the side effects. Your situation is such a serious one someone MUST listen to you - have you seen anyone apart from your team?

Hi all

My name’s Carole, I on my FEC at the moment, last dose 14th April then onto TAX. I must say I am really disturbed by the fact that your hair may never grow back AND you nails. I certainly wasn’t told this, my onc told me that my hair would grow back about 3-4 months after chemo. There was no mention of me possibly losing nails aswell. I am aware that everyone is different but am not liking the idea of these possible effects. My chemo nurse told me to paint my nails a really dark colour like black and I was told that would protect them from the sun, but whats the point if I amy lose them anyway. I am seeing my onc on Monday, I will have something to say !!!

Nice to speak to you all

Love Carole x

Hi Jax

I was just reading about your situation and I have to say that I am shocked and a little worried. I am on the same treatment as you, don’t start tax until next month, 3 doses. Just lately I am finding it very hard to understand the whole “Chemo” business. I was told that mine is just a “mop up”, I was diagnosed with stage 3 Grade 2 BC with 3 out of 13 lymph nodes affected. I have been told that because of my age they want to throw everything possible at me,ie 3x fec, 3 x tax and then herceptin for a year. Whilst I am very grateful that I am having the best possible treatment, I don’t understand why we are not informed of ALL the possible effects. I saw my onc last week, I had a slight concern about herceptin, mainly reading that it has affected people’s hearts so much that it has caused severe damage, now whilst again I know everyone is different, he actually said to me “don’t worry you will be fine, that can happen to about 5 in every 100 people”, how does he know I am not one of those 5. I have to say I love this website because it contains REAL information form REAL people who can actually tell it like it is. I hope on the whole you are ok xxxxxx

Hi Carole, this is excatly the thing that annoys me and many others. We are not told the whole truth - most of the websites that provide us with the info we desperatly need feel its ok to just tell us about certain bits that they see fit for us to know! that includes this site but hopefully this will change very soon as i have faith in this website that has helped me a great deal. So i am very sure they will be changing their wording to include about permanent hairloss possibility with taxotere in the next few months… The most annoying thing is our oncs who dont tell us the full possible side effects - well they wouldnt would they! they dont want us asking for drugs that dont do this to us. So its just give us these drugs and hope for the best. They all saythe same , they havent seen it happen before. Surely there must be some regulatory body that oncs have to be kept informed of the latest side effects being reported.
I have also been intouch with NICE, so i will see what reply i get.

Hi Pineapple

I know that you can’t answer my questions for me but I just wanted to let you know how I am feeling right now. I never thought for one second I would say this as of course I want the best possible chance, but there are no guarantees, I am not sure if I want to carry on with the Tax, I wouldn’t do anything hasty I have a lot to think about but I have to admit they make it sound like we shoud be grateful the help is out there without really thinking of a any long term effects. I have 3 kids, 5, 8, and 13 so of course I don’t want to do anything drastic but I’m just not so sure anymore.