taxotere and hair loss is it permanent? I am having 4 FEC and 4 TAX and now after reading some comments on hair loss twice thread really scared me. Please tell me this is not true? I am going to have my 4th FEC and 4 tax after , do I have any other choice instead of TAX maybe some other chemo? With FEC my tumour has not shrunk only 0.5cm very dissapointing.
Thank you
Gul xxx
Not at all-in fact my hair started to grow back very quickly.Everybody will react differently though-could be sooner/later for you.Good luck with it-and hope you get good results.
Yes it IS true, it has happened to me and the makers of Tax admit it can happen but not very often.
Infact, if you dont believe me i will give you the phone number so your onc can phone my onc and he will confirm it.
Hi Elanie, thank you for your reply can I ask how long ago was your last tax?
Thanks
Hi Gul.
I have had 3 act where I lost my hair (didnt shrink c) and have had 3 tax (1 more to go) and my hair has started to come back just a tidgy bit for now… bit like a 5 oclock shadow! Most eyelashes gone and eyebrows v thin but hope they will reappear eventually. I would not have wanted to change from tax. I believe that most of us do not have permanent hair loss on tax but unfortunately for the minority it has been the case.
Chris x
I have just found the last email i had from my onc. I had emailed him about something and had a moan about my hair (or non excistant hair) and told him i was know as the lady with the headscarf in my local town. At the end of his email he says
Silly are the people in your town ! Just remember that unfortunately some treatments have uncommon but definitive adverse effects
Since I declare your case, some others have been registered all over the world
Pineapple, I am sorry that this has been the case for you and others. Because to my knowledge it is fairly uncommon I think the least the drug company could do is recompense you in some way, even if paying for good wigs for life. I know this doesnt help you much but would be something. I have to say that I quite like my wig now and am confident in it. I actually think it looks better than my’old’ hair and really does not look like its a wig. Do you get on with wigs or are they too uncomfortable? I used to put a ‘stocking’ under mine which made it too tight and caused headaches after a few hours but I dont use that anymore and the wig is comfortable all day.
Chris x
Hi,
I had 3fec/3tax my hair fell out after first fec but started to come back whilst I was on tax.Although I did lose my eyelashes and brows.I now have lots of very curly hair and lovely long eyelashes,but still no eyebrows, very strange.
love mellx
I have a lovely wig but it cost 600 Euros but i needed to get the best one i could because i was going to have to wear it for ever. I hate wearing it though and now it needs replacing and we cant afford another. My onc told me to write to the makers of Taxotere and they replied saying yes it can make you permantly bald - not common - but it was my hard luck (in so many words) and no they wouldnt supply me with any wigs. I then replied asking to know excatly how many cases have been reported to them and they wouldnt tell me !!!
There was someone on French tv that had also been made bald permanatly and she shamed them on the equivilent of ‘this morning’ and they brought in lawyers and in the end the makers of tax bought her some wigs. I couldnt go through that especialy as i am in France.
I have written to them again and asked them why they dont disclose this in their info? and i was thinking about geting a lawyer onto it because of non disclosure but cant afford it.
I get sick of strangers asking me when my treatment finished or ‘how did i find my treatment over here’ they dont bloody know me and i always look like i am on chemo i suppose.
Hi again,
I really understand how frustrated you must feel. Wouldnt you think its the v least the company could do (and afford millions of times over). Do you manage to get over to the uk each year (presuming you are from here!!) and maybe able to get wigs a lot cheaper? I had to pay £60 towards an nhs one that cost £120 normally. I believe we can have 2 a year. When I think about all the wigs that we (in uk alone) just use for a few months, they could be put to such good use. If only there was a central place that all unwanted wigs could be sent and then redistributed according to peoples needs… I may ring my bc nurse and see what she says is available? I will see what people say on here…
Chris x
Hi Pineapple, I am sorry you had permanent side effect on tax , I wish we were told about this even if there is a small chance of permanent hair loss. Of course I believe you , you don’t need to show me anything. I agree with Chris, you should ask the company for compensation or wig for life if you weren’t told before treatment started permanent effects.
Hi Cris and Mell thank you, I keep hearing about tax how effective on getting to cancer killing it, if I have no other choise if I have to have, I wil have it. I also read many women hair started to grow while on tax.
I am seeing my onc on Monday I will ask him see what he has got to say, let you know.
Love
Gul x
Gul, my last treatment was in August, and I have already needed to have my hair cut once. Of course there will be a few people who have unusual and rare side effects, not just to taxotere, but to any other form of treatment(as we’ve seen with Pineapple). But I think you have to be realistic about weighing up what you stand to gain, against a one in xxxx chance of suffering permanent hair loss. I hope you’ll be ok-the vast majority of people are-and there’s a world of difference between something being likley to happen (as the temporary hair loss is), and very unlikley (as the permanent loss is).
I wish, though, at the start of the taxotere that I’d had my hair cropped very short. The loss, when it started, wasn’t gradual, but rapid, and it would have been slightly easier-both physically and emotionally-if I wasn’t dealing with shoulder length hair.Maybe you could consider a very short cut soon? And finally…so much do I like my new shorter hair that I plan to keep it this length! I have metastatic disease, so will be on treatment of one form or another for ever, and I feel that keeping my hair this short will save me having to deal with it all again, if I have another chemo at some stage which also causes hair loss. Good luck!
Apologies if I was misleading on the other thread. I am not disputing Pineapple’s experience (how could I?), but I am not there yet. It is only 8 weeks since my last dose of Tax, and my hair used to fall out in the 3rd week after each dose - so allowing for those 3 weeks, it has only been a month. I have had some new growth on the top of my head, but almost none around the sides.
After FEC, it grew back well, but I was having surgery and not really paying attention to how long it was taking. This time round, I have little else to do but fret about my hair!
I would support what ElaineD says about weighing up benefits against the risk of this.
Have you considered using the cold cap? It enabled me to hang to quite a bit of hair (tho make sure that you get good contact all round) and was not as uncomfortable as I feared. Just led to a longer session at the chemo suite. The hair that stayed is growing more.
Good luck!
I had 4x FEC and 4xtaxotere and my head and body hair came back within a few months but I have no eyebrows.
I was thinking of doing what ElaineD has done. I have secondaries and will be on and off Chemo - I hope for a very long time - so I think the short cut is the way to go. oh to need a hair cut!!
I had 3 x FEC and 3 x Taxotere. I lost most of my hair after the first FEC in spite of using the cold cap but it started to grow back VERY VERY SLOWLY after the second Taxotere.
Dipstick - I bought one expensive wig but got my second one for £15 from Wig Bank - marvellous organisation. II think there are several in the UK but I wrote to the branch in Scotland and did it entirely by e-mail. If you google Wig Bank you should find them. It’s also a very good place to donate unwanted wigs.
Pineapple - so sorry to read that you’re still having to wear a scarf. I think you wrote that your hair had started to come back at long last? I do hope it hurries up for you.
Take care everyone
Anthi x
Anthi, after i start each new hair product ie brewers yeast and nanogaurd i think its working but i am kidding myself - just wishfull thinking. I am no were nearer being scarfless than i was 2 years ago!
I had 4xFEC,4xTax in '04.Loseing my hair was probably my worst part of chemo.It was beautiful,thick and glossy - and down to my waist…my hair was me!Thankfully it came back very quickly but very white(was previously brown with a few grey hairs) I havent cut it since it grew back and its now down to my waist again- and in better condition than ever -probably because I appreciate and look after it a whole lot more these days! How I feel for poor Pineapple but thankfully in most cases hair grows back in no time.By the way I still havent hair under my arms.
josie x
Hi, thank you so much for all replies, I feel much better than yesterday about having tax as I know side effects are stronger than fec but I now many of you had done it and I can do it.
I am so glad this forums exist , learn so much from each other and comforts.
Take care all ,
xxx
Gul