I thought you might be interested in seeing the letter i recieved from the makers of Taxatere, who i wrote to because my onc has told me my hair will NEVER grow back because of this drug. I wrote to them asking if they would be prepared to keep me in wigs for the rest of my life as i cant afford 600 Euros every 12 months. This arrived yesterday - its been translated from French as thats were i live.
Our Pharmacovigilance service (the service which is on charge about the drugs consequences) has given us your letter, which has been examinated with the best attention.
It is writtten in the Taxotere instructions that people could loose temporarly their hairs very frequently when they use it. In most of the cases, the hair are back when the treament is finished. Unfortnatly the hair can continue to fall after the end of the treatment.
After a chimiotherapy, the appearance of the hair could be different and sometimes the hair don’t grow back even if this case is very rare.
As you said to us, our doctors have been in touch with Dr Lamezec about your situation.
We are really concious how it is hard for you to live with this hairlost.
But we can’t give you any money to help you to buy your wigs.
Not a very fluent translation. You’d think given the profits the pharmaceutricals make they could afford a better translator.
Seriousy though…sorry to read this response. Would have thought it would at very least be good PR for them to give you a no strings attached payment to buy wigs.
It was my friend that just did quick translation for me hehehehehehe
If they offered to keep me in wigs for rest of life i would happily sign a disclaimer. I emailed a copy to my onc and asked for any ideas he might have but not holding out much hope.
Is there a magazine such as Bella in France. You could tell your story, maybe be paid enough to buy a good wig and hopefully shame the makers into stumping up. After all nobody wants to risk what we all think of as a temporary loss of hair to be permanent.
Thats funny you should mention Bella, when i first came to France 8 years ago i used to write a weekly column for them-did it for a year and got 100 pounds per week! its a good idea, the only thing is they would want a photo of my bald head for the world to see and i cant even look in the mirror at myself.
I just feel at a complete loss, hopefully my onc will think of something.
What about telling drug company you used to write for Bella and that you are going to do an article on chemo,hair loss, and your predicament. A bit of blackmail might work.
Also, if you have a contact at Bella, could they write to drug company, asking them to comment. It might be good publicity for them to have your photo in a wig supplied by them, rather than one of you with a bald head
I’m puzzled that an oncologist would say this in the first place - I’ve never heard that taxotere causes permanent hair loss. I had it a year ago and my hair has definitely grown back - it’s costing me a fortune in haircuts! Hopefully yours will be the same and will grow back when the treatment is finished.
My treatment finished 2 years ago !!! My onc has spoken to the makers and they did tell him that its happened to about 3 other people (i dont believe them and think its more)and you can read what they say themselves that it happens but is very rare. My onc and consultant have both said after speaking to tax poeople they are sorry but it will never grow back…
I had 4 FEC followed by 4 taxotere treatments. I found both had many side effects, but Taxotere was worst. I found it very harsh. I lost all my hair. The last treatment was November 2007 & my hair is already growing back, length is about 1mm all over & it’s quite thick. Much greyer than it was before though! Perhaps it’s just too soon for yours to have grown back? Hope you get some soon.
When i was finishing my chemo, one tax left my hair had started to come back and i was very excited - i said to my onc ‘look its started to grow back’ and he said i am very sorry to say but that will all come out after your last tax next week. Anway it did and thats been it now for the last 2 years.When they said it will never grow back i kind of went abit deaf (didnt want to hear it !!) but i remmeber them saying somethingthing about the follicles dying or something. Even the tax people said in their letter as you can read that it can happen albeit very rare.
My consultant huphed and pufed about it saying this has made her life very difficult because she has to warn ALL her ladies that its a possibility of it never growing back and that they wont have it and will ask for alternative.This makes me think that the tax people had not already mentioned it to my team as it was as much as a shock to them. I have been bald now since i was 47 and i am coming up to 50 in June and feel like a fat ugly monster and i hate it and will never get used to it. Feel sorry for my kids and hubby having to look at me.
I’m with others on this - I think getting them to think it would be good PR for them to supply you with wigs. What about NHS - would you be entitled to vouchers for wigs on an ongoing basis if hair loss is permanent.
Otherwise what about trying the Bella line - they won’t want bad PR. I’ve been interested in your story as I had TAC and felt that with no other illness do you start with a 23mm lump and end up being robbed of so much dignity.
Good Luck.
Thanks for your encouragement. I dought that the French company would be interested in the ‘Bella’ article - they are like that over here but will look into maybe a Bella type mag over here. I was told that i would get a voucher from my health care every 12 months for 150 Euros and as my wigs are 600 Euros thats a big gap.
As time goes on i get more and more fustrated. Everyday things like walking down the road if its breezy - you can easily see the line of the wig around my face, the time i moved my scarf and wig flew off and landed on the floor by door at stanstead public loos, everytime i get off a plane i have to 'hold on’incase it blows off into the engine (i fly to uk every 4 weeks), cant wear it around the house because i am wearing it out so everytime the door bell rings or kids come in the house everyone one goes into ‘tell mum so and so is here - has she got a hat on’, everytime i swim (big part of my life) i have to wear chemo scarf. I always feel i have to clutch my wig as worried it will come off everyday there are instances.We go away on holiday alot and i usually live in my headscarf as i cant keep taking bloody wig off around the pool or going in the sea.Its such a damn bloody pain in the neck. With hindsight i would have asked for a different drug but there we go.
When i saw that plane at Heathrow the other day, apart from being glad it got down safe, my second thought was imagine if i had been on it - i wouldnt have been able to come down the chute unless they gave me something to tie my wig on!!! thats how paranoid i am - i will never get used to it.
I will see what my onc says, i did email him the tax response.Just feel really desperate.
I know many found it incredibly hard coping with hairloss during chemo and cannot imagine how difficult it has been for you coming to terms with the fact that it will never come back. I wonder having just read your post above if you know that you can get wig tape that will help give you confidence that your wig will not ‘take off’'. Again it is such a shame we cannot put links here when they are clearly helpful to readers, but if you google wig tape there are companies out there supplying it.
Thanks Dawn, yes i do have some double sided wig tape and i suppose i should use it. It makes such a mess on my head though and when i am in the shower the glue stuff seems to spread all over my head and feels terrible.Also when i take the wig off the sides of my head and back and front are abit gungy so puts me off using it.
Just want to add Dawn, that i personnaly didnt find it hard having no hair during chemo as i puked and puked during the first 3XFEC i was very glad not to have hair to worry about! I am sure the ‘permanant loss’ figure is higher than 4 (including me), i suppose as time goes on it will happen to more people.
What a shame! I feel so sorry for you. The hair loss certainly hasn’t stopped you getting on with your life, and you seem to do such a lot, so good on you! I agree with the others, shame the makers, go to the press etc.
I lost my hair during both lots of chemo (Epirubicen and Tax) but fortunately it grew back. However, since I finished Tax last May, my eyebrows have disappeared :(. Don’t know if they’ll grow back. Like you, I felt sorry for hubby and family and friends having to look at me with no hair, and now that I’ve put on weight and can’t get it off and I’ve no eyebrows, I’m seriously thinking of wearing a cardboard box on my head.
I’ve got a wig here that I’ve never worn, still got the labels on, and you can have it if you can get your address to me.
I lost my hair when on FEC followed by Tax last summer at the age of 63. I had said I wouldn’t wear a wig and purchased loads of scarves, only about one of which I wore for about 2 weeks. I did wear a wig very occasionally to start with but then thought “sod it” - I can’t see what I look like and I don’t really care what other people think. If it was hot, or I wanted to shade my eyes I wore a baseball cap, otherwise I went “commando”. All my friends were very supportive and after I had faced them for the first time, just took it all in their stride, especially if we were in the pub!
I had 4xFEC,4xTaxol.Had no problem holding on to my hair with the FEC but was bald as a coot in no time with the Taxol.Luckily it came back quickly on my head but slow everywhere else. Considering how hairy I used to be I haven’t had to shave my legs or underarms since!
Sharon - good for you for going out commando, i couldnt do it (not enough confidence), but it was during the winter and its amazing how much colder you feel.
Grannyscouse, thank you for your very, very kind offer i will email you.
I really believe this happens to alot more people than they are letting on. AND i have just had this message from someone in France that knows about my predicament
Dont know if it was taxatere but i am putting money on it.
This company that charge about 2 grand a shot are not going to want women to know this can happen with their drug i am sure.
I am in contact with someone in USA, and have sent her a copy of the response i got and i will see what she says.