Hair again! couldnt keep away

Hello ladies, i just couldnt keep away. hehehehe
Just wanted to let you know (the ones that know my plight) that i have now got round to writing to my onc for a name and address of makers of taxatere. I am going to see if they would like to keep me in wigs for the rest of my life.I am not holding out much hope BUT its worth a try. I cant afford 600 Euros every year for a wig and my insurance wont pay any more towards another. They think one is enough - dont these stupid people realise that every time you brush it afew hairs come out. AND THEY DONT GROW BACK.
Anyway, i will let you know if i every hear back from them.
I want to say ‘Happy Xmas to you all’ XXXX

Hi Pineapple

What is it with Taxotere? Has it caused you to lose your hair? I have just started taking it (today) and my hair is growing back from chemo. Hope it doesn’t go again!

Cecelia. x

Hi Pineapple

I really really feel for you and hope the b******s pay up. It wold be a pinprick to them. And although it won’t solve your problem it might make you feel better.

Strength to you my dear

Dilys
xxxx

Thanks, Cecelia taxatere has made me permantly bald. When it happened i was only 47 and i feel abit abandend - like to feel sorry for myself! Alot of the time i just dont care then other times its difficult. Just been to my parents in the UK and when i got off the plane it nearly flew off (if it had it could have blown straight into the aircraft engine-imagine the embarrasment), if its just a windy day can be a problem, cant swim in it etc etc. The other weekend i went to London, went in the public loo at Stanstead and was standing infront of the mirror. I adjusted my scarf and must have caught my wig in a certain way because it took off and flew across the toilets like a bird and landed on the dirty floor infront of the door. I have never moved so quick in all my life, luckly there was no one in the loo BUT imagine if someone had been standing there washing there hands! they would have had a terrible shock.
I know it sounds funny but i was close to tears when it happened.
I have to wash it about every 3rd week and it takes 2 full days to dry so have to go back to my ‘chemo scarf’.

Hi Pineapple

God it must be awful. All the pestilential things about a wig, but forever. Is there nothing at all the oncs can suggest? Sillyquestion really as I am sure you have tried everything. In your shoes I would be feeling extremly sorry for myself. Disease and treament is bad enough without this as well.

Cecelia, don’t panic. This is the chemo Taxotere having the effect, not the hormone treatment pill Tamoxifen.

Much love

Dilys
xxxx

Oh Pineapple that’s so awful, I feel so bad for you.

Sorry I was confusing Taxotere with Tamoxifen, all the Ts an Xs…

It’s outrageous they won’t pay up for your wigs, they wear out pretty quickly and that is so unsympathetic of them, it’s so much for you to go through.

Do you know for sure that you are permanently bald? Could it be another condition like alopecia? I’m sure you have investigated all of this, I feel so for you. It really scared me when it was windy and thought that my wig might get blown off, it must have been so distressing for you.

Cecelia. x

Hello again Pineapple/Shirley

Glad to see you back although sorry that there’s still no sign of your hair. When I saw your heading I hoped that it might at long last have started. I seem to remember a discussion some time ago when a lady said that hers had taken about 2 years to come back after Taxotere.

Sanofi-aventis
1 Onslow Street
Guildford
Surrey
GU1 4YS
UK
Telephone: +44 (0)1483 505 515
Facsimile: +44 (0)1483 535 432

Above is the name and address of the makers of Taxotere. I got it from the Electronic Medicines Compendium website (a very useful site).

Shirley - I wonder if you know about the wig bank? I bought an expensive wig but also got a lovely secondhand one from the wigbank for £15 - in fact I liked it more than my expensive one. I did the whole thing via e-mail. Their website has pictures of some examples of wigs and I wrote to Agnes who runs the Edinburgh wig bank. I told her the sort of thing I was looking for and she sent me two wigs to try. If you don’t like the ones she sends you simply send them back and she will try again. She is really nice and very helpful.

wigbank.com/

One other suggestion. I took throughout chemo - and still take - ‘hair and nails’ tablets. I get mine from Healthspan but you can get them in health shops. I think the significant ingredient is Biotin which is meant to help with hair growth. In fact my nails are in a dreadful condition now - but I think that’s because I’m on Herceptin - and that’s a known side effect. However my hair is coming back just as thick and strong as it was before I lost it on chemo. It’s growing very slowly - due also I think to the Herceptin and I’m on Aromasin as well which doesn’t help either. By the way - I had exactly the same chemo that you did - 3 x FEC and 3 x Taxotere.

How is your daughter getting on? I hope she’s doing OK.

Take care and have a lovely Christmas.

Anthi x

Hi Pineapple,

I have my second Taxotere tomorrow, I am dreading it as I was hit for six with my first, 11 days in bed, never been that bad in my life and I have had extensive procedures on other health issues. My hair fell out after 2 weeks I was really surprised how fast. I had a fully head of hair Friday morning, I had to leave work in the afternoon as it started to drop out and it was embarrassing others. When I got home I brushed my hair and I was near bald. When the family got home they were agog. Still I have got out my scarves for the second time (FEC before was fine, hair loss more gradual). I hated the wig I hastily chose last time, I wonder if I can ask for another prescription?

Good luck in your pursuit of new wigs.

Take care

Hi cb102, i found my first tax a big shock to the system but because there was no sickness i didnt dread the 2nd one. I found it alot easier and the last one i didnt even go to bed!
Hi Anthi, i will keep that address noted. The reason i have asked my onc is because he has already spoken to someone (he said they are in USA) about me, so i want that persons name and that address to see if they can do anything. I will keep you address incase i dont get a good response from them.Thanks for asking about my daughter. She is fine, left home (sob sob)afew months ago, they said they removed it with a clear margin and nothing else to do but will check her moles every year.
I will speak to the lady at the wig bank - thanks for that. They do have cheaper ones over here but because i have to wear it all the time i need the ‘extra comfort’ ones and thats what costs.
I will let you know how i get on. I posted my oncs letter yesterday so he maybe will phone me today or tomorrow.
I will get some of those tabs you sugest Anthi, but i think they said something about the hair folicles were killed off so…
XX

One more suggestion about wigs… I got some super ones on … ebay! there are some to be bought in UK, but many for quite cheap in China or Hong Kong. They cost very little (most of the cost is shipping, about 20 US dollars each), artificial hair but quite good. Come in all colors, length and so on… I like having several ones, and that means I can change it. If you want, I can post here the reference of the guy I bought from.

Not the same quality than my “good” one… but it may be good if you want to have a choice hidden in your shelf! (or, an ace up your sleeve… )

I have just recieved a letter from my onc giving me the name and address of the Taxatere people in Paris. He says its these people that already know about my hair not coming back.He says its a French product, i because i live in France i suppose that we he gets his supply from. So i will write to them and see what they say.
In the meantime i will look up the ‘wigbank’ thanks Anthi.
I will let you know when i hear back from them.
I now have another problem - painful sex! it was so bad that we had to stop, so i was at the docs this morning, i asked him for Replens but he said its just a lubricant and that i need a hormonal treatment but because i am progesterone pos he has to get the onc approval to give me a script for it. I dont see the onc for another 4 months! so will buy some Replens tomorrow and try this first.He said hormonal stuff doesnt get absorbed into the blood when it in your vagina.

MERRY XMAS EVERYONE
XXXXXXX

Hi all, i am still waiting for a letter/aknowledgment about my letter i wrote to the Taxatere people.
I did mention in the letter that i was suprised to learn that it has happened to a few people before but i was never warned about it.
I will let you know when i hear from them.I wont let it go - how can i, i am only 49.

Not a happy bunny.
I have just recieved a reply from Sanofi. I knew it was going to be fruitless. They say they sympathise about my hairloss and that its extremly rare. They also say that are refusing to buy my wigs for me. SO WHAT AM I SUPPOSE TO DO FOR THE REST OF MY LIFE !