Hi Pineapple,
I'm new to this website so I'm not sure how things work. I followed this thread because to my horror I noticed that my hair, one year on from chemotherapy (not taxotere), is getting very sparse on the crown and I was searching for advice and info. I'm obviously not in the same position as your good self but I can empathise because I was devastated by the loss of my hair and am currently terrified that what has grown back is about to disappear again.
However the reason for this post is that I have a beautiful short auburn wig with a scalp, that I will never wear again as my hair came back silver grey and everybody has got used to the new "me". You can have it with pleasure if there's a way to get it to you.
As i have spent the last 3 years (and believe myself to be more knowledgable than any nursing team about this condition which knew nothing about it till i reared my ugly head) doing non stop research, myself all the other ladies in the group plus many specialist i have spoken to believe it to be much higher than the 3%.
I have had 2 ladies in the last 3 weeks contact me from THIS site alone.
Dear All
The nursing team have asked that I post this message for clarity re the above post from pineapple.
The above was presented at the 29th Annual San Antonio Breast Cancer Symposium, in 2006, as a short poster presentation. Because of this, it is difficult to comment on the quality of its content, and to our knowledge this work has never subsequently been published in a peer reviewed medical journal.
It does however indicate that persistent significant alopecia is a condition affecting small numbers of women following chemotherapy containing Taxotere. Sanofi Aventis, the manufacturer of Taxotere, do say that although there are no specific fully published studies assessing the incidence of prolonged alopecia in patients (as most of the information comes from clinical trials which are of a limited period) that the incidence of this very distressing side effect may be around 3% of patients who receive this particular drug.
Best wishes
Nursing Team.
I have come across the following case study about persistant severe alopecia cause by Taxotere. Some of you might find this interesting
Women developing PSA group A 0/258 0%
group b 0/126 0%
group c 7/112 6.3%
Sedlacek SM.. Rocky Mountain Cancer Centers, Denver, CO
Unfortunately, the one side effect possibly most dreaded by the patient is alopecia. Yet, we have always told our female patients dont worry, it will always come back. This last statement may not be true.
Materials Methods: Consecutive patients treated by the author from 1/94 through 12/04 (11 years) with adjuvant chemotherapy were reviewed. Group A- doxorubicin regimen without a taxane (AC, FAC, A/CMF). Group B- doxorubicin plus paclitaxel (AC/T, AT/T, AC/T dose dense, ATC, AC/THerceptin). Group C- doxorubicin plus docetaxel (AC/Tax, ATax, ACTax, AC/TaxXeloda, AC/TaxHerceptin, ATax/CAF, CAF/Tax). Women who underwent high-dose chemotherapy with stem cell rescue were excluded. Only patients with at least one year of follow-up post adjuvant chemotherapy were included. The average time from the last dose of chemotherapy was 48 months (range 19-85 months). PSA was defined as hair regrowth less than 50% of the pre-chemotherapy amount of hair as judged by both the patient and the author.
So, you can see from he above case study that group A & B didnt have Taxotere. Group c did.
Medics in the know about PSA (persistant severe alopecia) all admit that they believe the figures are much higher than 6%.
In the last month i have had 3 women from the UK contact me suffering from PSA. This is just the tip of the iceberg in the UK.
I had a very thick head of hair before i started my chemo.
Yes, they have to keep all reported cases, i have been in touch with the EMEA so we are building our case against the drugs company.
Our group is getting bigger, and each lady that join us say the same thing - its all very sad BUT everyone too is VERY angry.
The drugs company know about us and we will continue to be a thorn in their side.
Unfortunatly there is no cure, no magic solution to bring it back its definatly permanent. I have been without my hair nw for 4 years but there are some ladies in the group from USA that are 2 years further on from me! There must be a good few in Spain too as i am in contact with a doctor from Madrid who did a case study over 7 years ago on 50 people.
Hi Pineapple, I'm interested to know that the drug companies are supposed to keep data on side effects. I asked at clinic whether they reported side effects in any way and the registrar said no. I will check with the consultant when I see him. My last tax was 6 weeks ago but I wasn't allowed to continue with the final cycle as onc said side effects were in danger of becoming permanent (severe hand/foot syndrome/nerve damage, lost finger prints etc - too early to say whether it has affected hair growth). Registrar said that lost finger prints had not been reported with tax - well it's no wonder if they're not recording and reporting!
A colleague of my husband had tax - only 2 cycles and has had very patch re-growth, but she said that her hair had started to thin before chemo.
Good luck with everything. Alice x
It does not surprise me that Taxotere can cause permanent hair loss. I will never forget the agonising pain I was in 3 days after I had the first cycle or the horrific burn I suffered to the back of my hand when it punctured my vein on the last cycle. I'm just thankful there was no tissue damage, but I've been left with a mottled purple hand. I've suffered from poor circulation and coldness to my hands and feet all my life and can honestly say it's been worse since I had chemo. If it can do that it must be capable of other things.
As i have predicted all along. PSA due to Taxotere has started to be on the increase in the UK now.
Our group of ever growing ladies for mostly USA and Canada that suffer with permanent hairloss due to Taxotere hav been contacted by 2 ladies this week from the UK. So it looks like it has started to grow and will grow and grow - shame the hair wont!
Now had 19 people take part in my poll on my blog
http://taxoterehairloss.blogspot.com/
I have just found out that drugs companys are supposed to always keep data on side effects - Sanofi Aventis say they dont hummmmmmmmmmmmmmmmm
I have let the right people know 😉
My blog has been up for a few weeks and thought i would bring you the latest results from my poll so far-this was asking if their hair has grown back after having taxotere.
not completely
8 (50%)
not at all
2 (12%)
need to wear wig/scarf
4 (25%)
lashes/ brows not returned
10 (62%)
Nice bum, shame about the head! lol
OMG Pineapple .... nice bum! .... love FB xx
Hi Pineapple
Haven't seen this thread for some time as I haven't been on the site too much, just a quick look here and there. Still not too good at navigating the site.
Well, I've just looked at your link and totally didn't expect what I saw and heard - especially the end, hahaha. I wish you the very best of British in your quest. Good on you, girl. I was on tax. My hair came back but eyebrows didn't and eyelashes very thin. If I can help in any way, just give me a shout.
Maureen xx
Eileen - why dont you get some false eyelashes and trim them down to a normal length. I am thnakfull i have some eyelashes - not many and no brows.
Watched the blog but as no sound on computer couldn't hear it. I as you know have never got eyelashes back, well a couple of stubs so still have trouble with my eyes.Yes you are angry at the drug company why wouldn't you be. I would hate not having any hair, yes I coped with it when going through treatment you know that is going to happen because you are told it will. When I asked oncologist if my loss of hair was permanent she said it was unlikely I would get my eyelashes back after 2 years. I felt as if I was being trivial asking about eyebrows/eyelashes, but I would like them. Having said that pineapple I would rather have had the treatment than not. I like you think that it should be mentioned that you may not get hair back, then you could at least have been prepared for it. Hope you get some answers and aknowledgement of drug company soo. They should fund you for really good wigs. I don't want false eyelashes as at nearly 59 would look stupid. Just a few to mascara would be nice. Love Eileen
All done- you can see it here
http://www.youtube.com/watch?v=wYCgYl7VSJ8
good job i dont take myself too seriously lol
plenty of clicks please everyone
I wont give up till i am heard! I havent even started yet so if the relevent people are reading (including this site) i am watching and waiting - i am not going anywhere.
By Thursday i will have something on youtube -i will let you know the link 🙂
Don't give up, pineapple, you are right, drugs co are wrong - totally totally feel for you.
s
Complete waste if time. I went into the beauty therapists room - checked my name and said " when did you have your first chemo? 2 or 3 weeks ago?" so of course we just ended up talking'hair' and she got on the phone to order some paperwork for me to get abit off a wig , which i wont get because on paper they will say we can afford to pay for one but its different in reality. But thats not the point. After about 30 mins of chatting she took me through to the phycologist. She asked me afew things, i explained how i cant cope anymore with peoples comments, every time the door bell rings everyone looking for a hat for me to stick on, she said i should wear a swimming cap when i go every week (so had to say no-way was i looking like an alien) then she laughed and said i obviously wasnt depressed about it becauce i was cracking jokes !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
I said it took away all of my femininity and i felt like i look like a man etc etc etc. In the end she said that i could go and see her when ever i want but she feels that my problem is my anger with the drugs company and not the fact that i am BALD. For gods sake - i could of stabbed her. This was just after i said that i constantly feel that nobdy really listens to me. LOL
So, , i have my campaign manager coming round later today for the next plan of action.
I am off to the hospital tomorrow for my free beauty treatment and then the phycologist (whatever thats for) but obviously my lack of hair will be the topic as far as i am concerned (theres nothing else to talk about) and hopefully they can get the legal people involved - will let you know how i get on.
Hi pineaple
Yes would be interested to see that information. Mind you I never used cold cap.
I am pleased to say that having being bald three times now I discarded Tia the wig last week and rather like the three quarters of an inch slightly bleached hair that I've got.
best wishes
Jane
Thanks Jane, yes i found that a while ago and one of the ladies also posted on this site, i am on that thread to but later on.
I know you like reading interesting stuff Jane, i have some interesting facts/data from that Swedish biotech company about scalp mets etc due to wearing (possibly)a cold cap. If you would like me to forward it onto you for reading send me your email address and i can forward it on to you. They have sent me alot and i havent read all of it.
Hi pineapple
Interesting thread here about permanent taxotere hair loss.
http://community.breastcancer.org/forum/23/topic/701423
Jane
I am living in France so next step is to lobby our health minister.
These figures cant be ignored. The 6.3% figure must be higher because that couldnt possibly include people who died or went onto other chemos before being recorded.
I am making sure i have copies (several just in case) of all my info etc.
The biotech company also gave me their data on scalp mets after cap cooling - so if anyone is interested i can forward it onto you if you contact me.
Very interesting stuff. Have you found a supportive lawyer who will look at this as pro-bono? It looks as if you are doing absolutely the right thing by correlating evidence. Getting significant people onside can only help your cause. Have you written to your MP and MEP? And Alan Johnson? And Andrew Dillon who is Chief Executive of NICE?
Well, i have had a very interesting couple of days.
A Doctor at top hospital in Madrid did a case study on people that lost their hair permanently to Taxotere.
His case study was completed on 50 (yes 50 ) patients.
Out of the 50 people non had their hair grow back apart from one person who had almost full recovery using moxidil but this was after 7 years !. He tried to get his study printed in the JCO but they would not put it in. No suprises there. So now he is increasing his case study and will try a different medical journal with the results. He also said he has contacted hundreds of breast/oncoligist doctors and only afew will agree with him but the majority do not think its relevent! NOT RELEVENT.
Then, on to the realy interesting bit, i have been intouch with the top biotech company in Sweden and guess what. They have figures for permanent hair loss with Taxotere and guess what they are......6.3% which i think is outragous. So, if you are reading this BCC, i dont really think you can say 6.3% is irelevent for changing your info on chemo do you? No wonder SA say they dont keep this kind of data. Truely outragous.
Thanks Molly, it is devastating. If i was single how would i be expected to find someone new? My poor hubby must hate it and i know it emv´barrases the kids. Sometimes i meet people and can spend an hour or 2 with them then i can bump inot them the next day and they dont know who i am! so when i explain it makes it the bloody talking point again. Everytime i look in the mirror its there. I know i have been harping on about it for the last 3 years and everyones sick of hearing about it but i feel as though nobodys interested or bothered and just want me to shut up. Even my onc, i have a great relationship with him, doesnt email me back any more (i emailed afew days ago and asked who i should see next, him or the consultant and he hasnt replied )and i have an appointment for my 6 monthly check up next month and dont know if i should make it to see him or her as she probly doesnt want to see me either. Its like i am a bad advert for them or something - i feel totally abandonded by everyone. The only person whos interested is my lovely surgeon and thats because hes bald too!
I will be contacting all newspapers and mags shortly, think i will contact the French health minister first though and see what reply i get from him.
Everywhere i go people talk to me and ask me stuff as though i am on treatment so how can i move on!
There is a group of us now, more joing all the time and 6 people have now found my blog and taken part in the poll.
Have you tackled the media yet? Daily Mail lap up stories like yours. Just email/call their Features desk.
I am appalled these buggers haven't had the decency to respond but unsurprised. Hit them with some adverse publicity.
I wish you lots of luck with this - it must be devastating for you.
Well, their time is up ! they didnt even bother to reply to me even though i have proof they signed for my letter. Shows how arrogant they are.
I have another meeting with my campaign manager in a weeks time so will decided the next step.
Five other ladies have now taken part in the poll on my website. Thats another 5 ladies that have a permenant hair problem after Taxotere.
Things are starting to happen so please contact me if you have been affected, we are collecting names etc as the more we have to start with the better.
My contact in the USA has just recieved an email from yet another lady with same as me, if you know anyone PLEASE get them to contact me.
Hi Katerina, thanks for all your advice. I did replay to you before but its so difficult to find anything on this new site!
Anyway, i dont want to take chineese herbs. Not enough know about them and if you dont know what you are really taking they can do more harm than good.
I have always eaten a well balanced healthy diet.
Dont want to do too many pulses etc as they contain phytoestrogens and because my cancer was hormone receptive my onc told me not too eat too much and no soya etc.
As with everything in life and the world balance is the key word - so believe that a well balanced diet is the best way to go. I do need some dairy because i want to get the calcium to keep my bones strong. I dont eat much red meat, never have but everything is as well balanced as i can make it. I buy organci when i can afford it and my eggs and from a freind so i know they are healthy hens, free range and no drugs!
Because i am almost half way with my hair i think it looks much worse than totaly bald - i have been like this since i was 47 !!! which is no bloody joke.
i know this doesn't help at all, cuz it didnt help me feel any better at all; but objectively looking at it, i think that a lot of people probably stare out of empathy and dont actually mean to stare, they are just interested. Sometimes i find myself fascinated if someone is slightly different, but there is no judgment or particular thought process involved; its just simple curiosity. (example -a friend of a friends has these raised scars on her torso - she's a really pretty girl and the scars dont detract at all from how pretty she is; but i just find myself fascinated by them; so i have to stop myself looking. I'm not looking cuz i think she's ugly; i actually think the opposite). Sometimes i think people who are bald look just as beautiful as with hair; or more so; (I didn't - i looked like an egg; but some people do look good). However now i know how irritating it is i make sure i dont do it as much as possible. Because i know that i felt like all i wanted was just to be ignored. So i try to do that - just ignore anyone who looks different.
(hope none of this has annoyed you. I feel very chatty tonight..sorry :/)
oh and i also think (hope im right) that if a persons immune system is working well enough and they are eating the right things and in the right environment (including emotional environment) the body should even be able to fight off cancer, regardless if its genetic or not. Because not all genes are expressed. even if you have the gene, it doesnt mean it has to be, or will be, expressed.
i think the immune system gets depressed via bad diet or environmental pollutants or emotional stress, and as a result of this weakening effect on the immune system, we get sick; and either we get a virus; or whatever bad genes we have will express themselves with nothing to stop them anymore. Although it could also be as simple as adults drinking milk - esp. for breast cancer. see: the china study, by Dr campbell. Asians dont drink milk - much lower rates of cancer.. dutch, french, scandanavians eat a lot of dairy - highest rates of breast cancer in the world..
oh i also completely avoid sugar except for honey or maple syrup or anything unprocessed and natural - maybe agave syrup or stevia is okay. Make sure you dont eat anything with aspartame in it - this is a poison apparently (in nutrasweet, equal, coke and even some vitamins etc).
Hi Pineapple, i know how you feel with the scarf with the 'what the f are you looking at' sticker - i wanted to wear a t-shirt with that written on it or stick a note to my forehead when i was having the chemo and wearing a scarf. it drove me nuts although i tried not to let it bother me, it did.
i think i've posted this before, but i'm a total believer in it so i'll post it again anyway - cuz before i started taking chinese herbs after the chemo my hair growth was pretty thin and not that great; but after i started taking them it got really think and wavy. so i think it helped me. so just passing it on (again) (sorry). incase someone else might be interested in using them.
It looks like you've got some hair, that its trying to grow back, I really hope it does for you.
i think diet could be critical for recovery from chemo including weight (or fluid) loss after chemo. i am on a diet where i just eat vegetables (many green leafy - cucumber, avocados, brocolli, lettuce, spinach etc), and other coloured vegetables; and some fruit; nuts (every day - almonds are great); seeds (on my salad - sunflower, or pepita/other seeds/flaxseeds); beans (in my salad or on bread/w rice); and occasionally some fish or eggs. (as well as grains - wheat or bread or rice or other grains) I really recommend this diet for recovery from chemo (and maybe even from cancer); plus chinese herbs; as i think after chemo, the immune system is shot to pieces by the drugs and you need to get it working again (garlic is good for this - garlic and onion in everything are generally good; so are carrots); apparently the body runs mainly on vegetables but you also need protein (from nuts/seeds/eggs or fish/corn). I drink a lot of green (anti cancer) tea (also wheatgrass juice) instead of coffee/black tea; also herbals are good. juice or vegie juice is good. I dont eat any dairy products or red meat or even poultry. i think there are too many hormones in this which can be bad for you; also dairy is often linked to cancer - via the protein in it called casein. I think dairy is for young animals (milk) not adults and can send your body systems haywire if you drink it as an adult - why many people are lactose intolerant.
Hi Eileen, thanks for your understanding comments.
I have sent you a private message on here but not sure if i have sent it to you or just to myself - this site is not the easiest, bring back the old one please.
I have started a blog yesterday, i know SA have till the 7th March to respond to me in a favourable way, but as i dought it will happen and because of SEO i need to make a start on my blog to get it moving up the search engines abit.
If anyone would like to see it so far (not very interesting yet but will get better i promise its
http://taxoterehairloss.blogspot.com/
i am not sure if we can add blog addresses to this forum or not.
I have always read your posts pineapple and feel for you re. the hair. I had taxotere I finished in May 2007. My hair has come back very thin and feel very self conscious about it. I use all sort of products which I never used before. Now eyelashes, virtually none same with the eyebrows. Eyes look so weird with no eyelashes and like you I feel I shouldn't moan about such trivialities but it does knock your confidence. As I have said before I have those horrible boiled gooseberry coloured eyes and NEED mascara. If I just use eyeliner it looks harsh. Well moan over. Your hairloss mis much worse and I hope you get some help to buy a fabulous wig xx Eileen
Well its 2 weeks since they recieved my letter- is it 'no new is good news' or are they just ignoring me?
Thanks for your comments Nursing team - however i dont agree with you.I am sure all the 'newbies' on here about to start chemo will be absolutely thrilled that you pick and choose which side effects to inform them about !
Had i read on here about 'Taxotere could possibly cause permanent baldness' before i had mine it would have prepared me for the possibility of it happening. It would also of been my choice to 'take the risk or not' instead of being kept in the dark about it - as your site is doing.
Response from Nursing team for Pineapple.
Dear Pineapple
As promised, Jo has passed your post from yesterday onto the nursing team. The personal response you received from our publications team explained that we will look at this issue in relation to our Taxotere factsheet when it comes up for review later this year. Regarding the general information about chemotherapy side effects on this site – it relates to all chemotherapy drugs, and aims to provide balanced and appropriate information for as wide an audience as possible, so listing the possible side effects of individual drugs here wouldn’t be suitable.
Best wishes
Nursing Team
If you look at 'hot topics ' there is ANOTHER lady that this has happened to !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Hi Jo, they have already emailed me this afternoon to say that because SA dont keep records of reported (yeah right) side effects like this they havent got info to give to this site.
I cant believe for one min that this site believes that.
Anyway, i have kept copies of everything and it will be used against this company in due course. I am just dissapointed that this site (that i haved used since first DX and helped me through a terrible time) has decided that they would rather just believe the lies from a drugs company and keep their members wrongly informed about something as important as this. At least the macmilan site are not withholding this info.
Hi Pineapple,
We have passed your comments on to the nursing team at BCC who will get back to you on this.
Kind regards,
Jo, Facilitator
I am very shocked to say the least. Well, maybe not????????????????????
I have been informed by this website/organisation that they will NOT be changing their info to say that Taxotere in some cases cause permenant hairloss BECAUSE, they have contacted Sanofi Aventis who say THEY DO NOT KEEP FIGURES OF REPORTED PERMANANT HAIR LOSS. So, they lie as i have proof. My onc has seen their info and knows about other people from around the world reporting this.
The Macmilan site have agreed that their info will be changed to include this so that makes this sites info a little out of date.
HELLO! I ALSO HAVE PERMANENT HAIRLOSS 2 1/2 YEARS PLUS!!!
My oncologist was unaware of this side efect and continually assured me that my extremely thick hair would return. He was shocked when it did not and said that he would inform future taxotere users of the possibility.
I contacted the pharmaceutical manufacturer and, with the help of an attorney, convinced them to change the side effects. From that point we learned that as far back as 7 years ago it was know that some women had permanent hairloss from the use of taxotere.
My hair is beginning to cover my head now with fine fuzz BUT ONLY AFTER USING a combination of minoxidil and retin 'a'. Not that I have actual hair but I do have fuzz covering my head and it no longer 'shines' or 'squeaks' when I run my fingers over my head.
I JUST WANT THE DRUG COMPANIES TO BE HONEST WITH THE SIDE EFFECTS.
Thank you.
I have refreshed this as i have now added a picture of my head!
So this is what Taxotere has done to me and i am supposed to just go away and live with this !
I know katie, its the bloody pits!
Everyone is told it will definatly grow back.
When i lost mine i was glad actually (how ironic)because the FEC was making me vomit constantly it was a relief to get rid of it. I never gave it a second thought. I finished Tax on Jan 25th and by June they were concerned so phoned SA and they told them that yes it can happen.
They were suprised but that was it really, i felt abandoned, i understood that they were treating people with secondaries and didnt make a fuss. I always thought it would return even though SA told them it would be permanant.
Three years later i really want my hair back, and unless i die i am not going to go away and except it. I know there are afew people on here that are bored with my moaning but although i REALLY feel for others on here that have secondaries this is my life and i need financial help with buy extreme comfort wigs.
My beautiful wig is on its last legs, its gone all hard and matted and i am getting desperate so i want SA to realise i mean business.
I have contact with some other ladies in USA and Germany with the same problem and we are sticking together. One thing that really pisses me off if the info on chemo side effects on the various sites that are not correct (like i said before including this site)that ignore my requests to change their incorrect info as its very misleading.
The unhelpful woman at SA that wrote to me before will now have my registered letter in her sweaty french mitts and i eagerly await her reply.
Oh, my, god, I had taxotere about 2 years ago, and at no time was I ever told that the baldness could be permanent, I was just told that I would lose my hair but it would grow back once treatment stopped. Losing my hair was the worst thing about the whole bloody nightmare and I cant imagine how you must be feeling....
Ooooops sorry (i wish we could edit our postings?) it wasnt a Tracy from this site it was from the Macmillan website.
I have just recieved a very nice email from Tracy at BCC and she informs me that this site will change their Tax side effects to state that it doesnt always return - thank you Tracy.