If doctors/drug manufacturers aren't being honest (though in this case it sounds like they've covered themselves in the insert), or are not following up patients side-effects on an on-going basis (after the initial trials) can we really believe the statistics they provide to prove how 'effective' they are? Adjuvant Online for instance, is funded by pharmaceutical companies.
Would anyone have refused taxotere if they had been told their hair would never come back?I wouldnt.I wish I had eyebrows and thick eyelashes,I am lucky to have hair on my head and not to have it under my arms.I wish I didnt still have peripheral neuropathy,dry eyes and fatigue nearly 3 yrs post dx.I wish I'd never got bc BUT I am glad I was given taxotere for my primary triple negative bc as it is supposed to be the most effective drug for my dx.I want to live.
I think the side effects are what patients mentioned in the original trials. Unfortunately, I know of several cases where doctors have not recognised side effects that are listed on the patient insert.
The taxotere patient insert says "short term hair loss (in most cases normal hair growth should return)." Not quite sure that that is far enough from the truth to sue, since the wording leaves open the possibility that normal hair growth will not return. The big problem is that medicines are being approved, at the European level at least, with the expectation that patients are getting information that NHS patients aren't getting, at least for chemotherapy drugs which have to be some of the most dangerous ones.
Sorry to read this thread - can you sue if it wasn't on the chemo consent form? Often wonder where the hell the lists of drug side-effects come from, when docs don't listen to their patients reporting them. I remember taking a drug years ago (not for cancer) that made some of my hair fall out - I was told "no, that's not a side effect of this drug" but when I googled it there were hundreds of women saying the same thing! Luckily it grew back but it did make me question things. Pharmaceutical co.s just do what suits them, I imagine.
Just wanted to say that if anyone wants the official patient insert for any medicine they are getting, google "EPARs for authorised medicinal products for human use." You might have to do a bit of digging, but there is always a patient insert somewhere there. This is information that the body that o.k.s the market of pharmaceuticals in Europe seems to assume that patients are getting. So much for informed consent.
The U.S. national library of medicine is also good (an official U.S. government site with the information for the U.S.).
Just wanted to bump this up incase anyone else is having ongoing alopcia after having Taxotere.
The official term for this is PSA - If anyone is worried about their hair not returning please contact me and i can put you intouch with our ever growing support group.
I finished six lots of TAC chemo June 2008. Still have no eyebrows, or nasal hair (this is a real pain), the few eylashes I have are very thin and short and I am still bald on the crown of my head. My hair has grown back beautifully all round my head, but like Friar Tuck I am bald on top. I keep what has grown very short. I don't mind as much now I am used to it, and I just make sure to wear a sun hat in the sun, I got my head sunburned in Crete last month so am really careful now. People will just have to take me as I am. I also had a bilateral mastectomy and sometimes I wear boobs and sometimes I don't. I am still me and just hope I don't 'frighten the horses' too much. I find that most people are aware of what has been happening to you and either ask outright or ignore it. My grandchildren are wonderful and after a few initial questions just accept me as I am, if children under the age of six can accept you surely adults should be able to.
Best wishes and love to all
oh dear! just come accross this thread. something else to add to my misery. i am reluctantly coping with wig and praying hair will return but it is the thought that my of eyelashes not coming back that worries me most, i know that may seem very vain but i look like a puppy with distemper all pink eyed.
this ####### disease and its treatments.
i have rubbery strippey finger nails,black bruised toe nails,little wisps of white hair about 2cm long,chemically induced menopause with hot flushes all through the night,skin peeling from soles of my feet,aches and pains in my joints, lyphodoema and fear
like the rest of you i was not given the information about side effects and that hair loss may be permenant. in fact whenever i have reported a new symptom to medical team they seem amazed that i have bothered to mention its as if i should have been expecting all that Tax threw at me.however if as i hope i can hang around a bit longer because of treatment and spend a little more time with my baby grand daughter i will remain bald and eyelashless.
I'm also a few months down the line from finishing Taxotere, in mid December last year. I haven't lost any nails yet (touch wood), although I did use the frozen mittens (but found them painful, so be warned!), and still wear dark nail polish all the time.
My hair started growing back whilst still on taxotere, although very wispily, and seemed to shed from time to time. It only really started growing better once I'd finished, but was still very uneven, so once I had signs of hair all over I shaved it all off to let it start again. Felt quite a drastic thing to do at the time, but am very pleased with the result - I have 3 months growth now and haven't worn my wig at all for the past month.
I find it hard to comment on the fatigue side of things, as I've had a mastectomy and radiotherapy and started tamoxifen, all since taxotere. I do get tired, but it could be any or all of these things!
I still have sensitive fingertips and sore feet, but I gather that these symptoms can take quite a while to resolve.
It's about 16 months since I finished chemo 4 each of FEC and Taxotere.
I lost my hair on FEC but it started to return on Taxotere and it carried on growing throughout. However I did lose my eyebrows and lashes on Tax. My fingernails went a whitish colour, and my fingertips were sore, but I didn't lose any of the nails. I did lose my two big toenails, but not until new ones had started to grown underneath, so it was no big deal.
Everbody has their own experience and it seems I was fortunate in the hair and nail department. I hope you are too.
I will say, though, that Tax really knocked the stuffing out of me, and it took me some months to get over the exhaustion.
I've just found this thread again and thought I would come back to say that now, after finishing Tax in October, some of my nails look bruised, like I've banged them, and are so so painful. They're not black, yet, but does this sound like what happens to the nails?
They've been splitting and very fragile for about 3 months, but this bruised and painful stage has only started this week - 6 months after finishing tax!
Hair, well I have a covering but no eyebrows and very short eyelashes still.
When i had my Taxotere they didnt have the mittens but i had to keep my fingers in buckets of ice. It didnt do much good as i still lost every nail. Every night in the bath i usewd to remove that days grubby looking micro pore tape from each nail. When they were detached the nail would come off with the tape. I used to leave the nail on the side of the bath knowing my daughter was next in for one. I used to think it was so funny hearing her scream as she saw it or put her hand on it lol
A lady down the road from me had Taxotere afew months ago and she has lost all hers too. I think you are lucky if you dont loose them.
I really agree with what Starfish says. I had my last Chemo in Dec. and my hair is still like that of a baby - but much less attractive! I don't envisage being able to wear it "out" for at least 2 more months. Like Starfish I have got on well with my wig and may well continue to wear one -it is definitely easier than having to do one's own hair - especially if it is like mine, wavey and wild. I have had a lot of compliments on my nice hair doo from folk who didn't know it was a wig. (Maybe it's my age but I never thought going bald was an option- I didn't want either sympathy or 'aren't you brave' looks for having chemotherapy - which is the inevitable reaction if you have a bald head.)
Re the nails- mine have are still hideous - some growing new under the old ones, some lost - one became infected and resulted in cellulitis in my 'bad arm' as a result. The possible side effects of all my treatments was explained to me at each stage but they were certainly not dwelt on. I guess the oncs know that most people will accept initial treatment whatever the potential side effects- it is only later when we are not so shell- shocked that we begin to question - and particularly if we get unhelpful comments from BCNs etc.
I think some hospitals provide iced mittens and socks - which would work similarly to the cold cap on the head. I've used the latter and it has been quite effective so far re hair loss - so you could ask about the mittens.
well ladies I have just finished fec and start tax just 6th May. I did speak to my onc about my concerns and just as I thought I was told it is a small minority and that I would be fine. I really don't understand how they can just come to that conclusion. I still don't know what to do for the best, as I said before al the other side effects I am coping with really well but the thought of possibly losing my nails really scares me I am going on Holiday in August and don't really want to cover up my fingers and toes with plasters. I don't usually sound so vain but I just can't help it this time .
P.s is there anyone out there who hasn't lost their nails
Maybe you could take the time to vote on my poll on my blog
I finished tax Nov 08. I still do not have a full head of hair. My husband has just given it a light trim. Mainly until and if it ever all gets the same length. Others I have met who had FEC it seemed to grow back pretty quick. Mine started to grow back at end of FEC and then fell out again when I started tax. I am seriously considering not bothering to grow hair again. I quite like the wigs. Less expense and less bother. Has anyone else done this I wonder.
As to nails my toenails are still there but I am having a chiropodist every 6 weeks. She says they are loose. This is over 6 months later.
Also finger nails half came off about 3 weeks ago. A new nail grew under the old one and pushed the old one off. Also I had to wear plasters on nails for about 3/4 weeks as they split but not right across and I was afraid of catching them as they were still attached to nail bed.
BCNS and oncs as far as I can see gloss over all the side effects and risks. The same for lymphoedema. I think they are worried that if they told people the realy likelihood of side effects more women would refuse the treatment.
i had 3 fec and 3 tax finishing in dec 08. Hair is growing back tho slow and had first veryy small trim on sat so very sorry to hear about your hair not growing back. I also wasnt told of all the side effects of the drugs i was being given. I lost my toe nails and fingernails peeled off. Although fingrnails have grown back they are very weak and continue to peel and break. My toe nails or should i say the lack of them is a different story. No sign of them coming back and toes still have a numbness that they say can take up to 2 years to resolce if at all. I also seem to have a lot of joint pain and take voltarol and gabapentine daily and occassionally tramadol as well. God knows how long this pain will last. My point is that i agree that we are not given enough information on what they are pumping into us.
I have had afew women email me saying that their hair hasnt reutrned after tax but now the cancer has come back they obvioulsy have other things to think about. Its not a wonder drug and if we only have our oncs advice to go on what else can we do?
If you go a head with Taxotere hopefully your cancer wont come back and you will escape from permanent hairloss, bone problems etc etc and you can concentrate on getting on with your life.
Thats why sites like this are so vital to us, so we can learn for ourselves what our oncs dont want us to know.
I suppose alittle knowledge is dangerous as the saying goes.
He has just basically said that "they" have decided what is the best treatment for me and the fact that they say because of my age that want to give me the best possible chance,I'm not going to lie, I have having serious thoughts as to whether to carry on, part of me feels stupid for even thinking this way but the other part is saying why put yourself through all this, If I continue, yes, I am possibly preventing it, but it could still come back and if I stop am I without sounding morbid, signing my life away
Then they need to be told that they are not doing their best if they keep fects from us that might stop us (or at least question)from having certain drugs!
So, has your onc told you its not because of the chemo?
I agree with you that we are guinea pigs to these new drugs.
There should be some structure in place to help people with permanent side effects no matter what they are.
Thanks for you replies I am just so confused about everthing right now. I was just saying to my husband, you go into ons room they tell you what drugs you will be having and for how long and really you just accept it because at that time you think it's the right thing to do and that you would be stupid not to accept it. Now I find myself wanting to know all about these drugs before I have anymore. But I am seeing my onc on Monday and will be asking a lot of questions but I know what will happen, he will bamboozle me with all this technical jargon and tell me it's the best thing for me.
As an ex-nurse, one of the things we were BRAINWASHED with was to treat the patient bio-pysch-social fashion..ie, the whole person and not the condition. I don't think many doctors have been told of this approach! My experience is that if I complain about my spine to Oncologist, he tells me it's not his field or his problem; the spine man says chemo is not his field, pain amanagement say it's not Their field, etc etc!
I think we are really just 2nd generation guinea pigs with some of the new regimes. When you think that a lot of the old chemos have been around since 2nd World War, and they know just what to expect long-term.
But I guess they are just trying to do their best by us, so I don't want to sound too angry.
By the way, the old dark nail polish trick did work for me, and still does. If I don't wear it for a while, my nails really complain!!
Best wishes, Jax
Carole, i cant say as i know how you feel because i dont. When i had my tax 3 1/2 years ago i was told me hair would grow back and i wasnt informed of any other possbile damage long term. But had i been told i dont know what i would have done. What i do know is that if i had been told that my hair definatly wouldnt have grown back then i would NEVER have had Taxotere. there are plenty of other drugs. If i had known the full scale of problems and stats which everyopne seems to keep close to their chest or deny they exist then i dought very much if i would have had it. But this is why its all kept hushed up and not talked about.
i wasnt told about the nails either, i lost all of mine plus a big toe (well hidden and dark)so no sunlight getting to that! its not as bad as it sounds but paying in shops when i have micro pore tape on all my fingers plus no hair i look like a lepher and sales staff used to put the change on the counter top because they didnt want contact with me!
I know when you have secondaries these all must sound so pathetic and they would love to have our problems without secondaries , but for us that so far are on our primary Dx trying to get on with our lives these have a massive impact on wether we can do this or not!
I certainly dont want to sound blaze etc or offend anyone but i will do everything i can to annoy whoever till we all the facts/possilities given to us so we can choose wether or not to take the risk.
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.
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.
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
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
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?
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 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.
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.
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.
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
Dear pineapple I received your message and have emailed you.Feel free to contact me via email or this site if you wish.
Hi Horace, i have sent you a private message, please let me know if you recieve it or not.
ps- maybe you have time to go onto my blog
there is a poll on there about hair and eyebrows etc.
I finished taxotere in May 2007 and still have no eyebrows.Lashes are short and stubby but head hair is ok.
Hello Jane, yes indeed VERY patronising!
"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.
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.
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.
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.
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.
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.
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.