taxotere and permanent hair loss

shirleyl

Kathy61  -are you there? i am now compiling a name and addresse list for permanent hairloss caused by Taxotere.

Could you please contact me

shirley ledlie @ hotmail.com

i have left the spaces as i dont know if we are allowed to put email addresses on here. 

heatherpalmerton

I am so sorry that you have lost your hair and it hasn't come back. I was on taxotere for almost 10/11 months. Yes my hair did get very thin. I have been off it since Nov 12th. My hair has come back full force even my eyebrows and lashes.  One thing my hair dresser said to me after a couple months of treatment she could feel the tightness in my head. Like a person going bald. She said to massage my head everyday and this will help. I must be one of the lucky ones. I hope the very best for you. Heather

shirleyl

Pam2622 are you there? has anyone seen Pam2622 on another thread - thanks

GEECH

I was bald when on Taxotere but it did come back but now I am on Abraxane and after 2nd treatment I was just about bald. I  told by onc that my side effects are the same as when I was on Taxotere and she said  Abraxane is suppose to be milder. I don't think it is.   I am praying my hair  comes back since this is the 2nd time for me.

Take care,

Geech

shirleyl

Does anyone know where Kathy and Pam are on this website please????????

shirleyl

 I dont think admin read these posts because i have reported my technical problem so many times i have lost count. i reported it on here and i have emailed admin about 4 times - no reply.

If anyone knows how i can contact Pam and kathy on this website could they please let me know.

many thanks. 

I do apologise - i have just found the Pm section. Sorry about that. 

cocop

I've had three treatments with taxol & carbo. Because I was experiencing some symptoms of neuropathy, my doc switched me to taxotere. I was under the impression that this drug was less toxic than taxol but after reading these posts I'm getting freaked out. For those of you who have experienced permanent hairloss, can you tell me: (a) what your taxotere dosage was; (b) what other drugs you've had; (c) how often you received an infusion - every three weeks or weekly; (d) whether you had other problems before that may have contributed to the permanency of your hairloss.

Sorry for all the personal questions but I just had my first round of taxotere yesterday and want to make sure I don't wind up regretting anything. I have two more rounds to go. I've maintained some peach fuzz throughout (I had it buzzed when it started falling out) and some has actually grown during the first three cycles (I'm talking just a few hairs, but you all know how important the little things are!) I need as much info as I can get as soon as possible to be properly armed and informed. Thanks so much -- and best to all of you!

shirleyl

Hi, cocop, i had 3 X FEC then 3 X taxotere, my hair started growing back after the second Tax, looked like everyones elses when growing back.  I got excited and my onc said dont because it will probly all come out again after your 3rd. It did and that was it, 6 months later they reported it to SA.

I had it (dont know the dose) once every 3 weeks and before chemo i had the thickest head of red hair you could imagine.

I have just got some interesting figures through.

The figure for permanent hair loss with Taxotere is a stagering 6.3%, i cant reveal my sourse but enough to say its from the medical world in sweden.

This is outragous. 

crazy4carrots

Shirley, that truly is outrageous, and definitely a statistic that every onc should be aware of.  Can your source provide any stats on taxol?  I'm wondering, because the taxanes seem to be fairly interchangeable.

Linda

okblessed

Hello - I believe I had treatment every 3 weeks [can hardly remember now] doctor had to reduce dosage by 25% because of extreme reactions.  One interesting thing I remember is that the doctor looked into my nose [6 months after treatment ended] and said nasal hair was an indicator of whether or not head hair would return [I have nasal hairs - a few]. Hadn't thought of thaqt in a long time.

Don't be scared - I think we are going to get to the bottom of this as more and more of us join together to be recognized as suffering from this side effect.  I didn't and don't take any other drugs.

Perhaps we need to form an email group and try and keep up with one another.  I have noticed that I have not heard from several ladies who originally said that they did not have their hair return.  I don't know if they are 'okay' or if things have changed.

I had a negative PETscan - shows in my bone marrow --- so, I would like to focus on this project as intently as possible to bring about some sort of positive change.

I appreciate all of you and we can make a difference if we stay focused on making SA do research to GET OUR HAIR BACK!

Blessings,

Pam

shirleyl

 Hi Pam, i have lots of new info to email to you. Will do it over the weekend!

Linda, the biotech group in Sweden that gave the stats said it was for Taxotere - i am intouch with them so i will ask if they have any data on Taxol too.

Dont want to cause alarm but i feel (and so does Pam) that we all have a right to know the true facts of possible side effects so we can then make our own choices instead of being lied to. 

shirleyl

admin - please can you sort out this technical problem

shirleyl

Hi, i finshed Taxotere amost 3 years ago and have been told this drug has made me permently bald. i am gutted and feel very disfigured apoart from all the other everyday problems i have with this.

I have written to the makers of this drug with my oncs blessing and they replied sorry its happened but we will not keep you in wigs for the rest of your life. I am sorry but that will just not do. If i had the money i would sue them for non discolsure and they are still not delaring it. my onc has informed me afew weeks ago that sinse he declared my problem there are cases all over the world of it happening.

We need to do something 

shirleyl

Hi, i finshed Taxotere amost 3 years ago and have been told this drug has made me permently bald. i am gutted and feel very disfigured apoart from all the other everyday problems i have with this.

I have written to the makers of this drug with my oncs blessing and they replied sorry its happened but we will not keep you in wigs for the rest of your life. I am sorry but that will just not do. If i had the money i would sue them for non discolsure and they are still not delaring it. my onc has informed me afew weeks ago that sinse he declared my problem there are cases all over the world of it happening.

We need to do something 

shirleyl

Hi, i finshed Taxotere amost 3 years ago and have been told this drug has made me permently bald. i am gutted and feel very disfigured apoart from all the other everyday problems i have with this.

I have written to the makers of this drug with my oncs blessing and they replied sorry its happened but we will not keep you in wigs for the rest of your life. I am sorry but that will just not do. If i had the money i would sue them for non discolsure and they are still not delaring it. my onc has informed me afew weeks ago that sinse he declared my problem there are cases all over the world of it happening.

We need to do something 

shirleyl

Hi, i finshed Taxotere amost 3 years ago and have been told this drug has made me permently bald. i am gutted and feel very disfigured apoart from all the other everyday problems i have with this.

I have written to the makers of this drug with my oncs blessing and they replied sorry its happened but we will not keep you in wigs for the rest of your life. I am sorry but that will just not do. If i had the money i would sue them for non discolsure and they are still not delaring it. my onc has informed me afew weeks ago that sinse he declared my problem there are cases all over the world of it happening.

We need to do something 

lolanovak

hi.  i just found this place.  my last chemo was april 2007.  i've experienced about 90 % hair loss.  i've pretty much lost hope of getting any more back.  great to know that i'm not the only one.  will be avidly following these posts.  any other canadians out there?

Rusty123

Hi All,

I have just started treatment 3xFEC and then I will have 3xTaxotere.  I'm getting really concerned about not getting my hair back when I start the Taxotere.  My Onc. told me that normally the people who don't get their hair back have male pattern baldness....which I think I have because I have thinned at the crown over the last few years.  I live in Canada and am wondering if Taxol is easier on your hair.  Anyone know?

Diane

moonwolf

I finished Tax 4 weeks ago, after 3 FECS.  After 2 weeks on FEC I lost most of my hair - some fluffy stuff left.  To my surprize it has been growing back all the way through Taxotere!  It's now half an inch - not quite as thick as it was, but I can see some new growth appearing.  I lost most of eyebrows on Tax tho and half of eyelashes.

 I found Taxotere much better than FEC side effect wise.  I was really worried about taking it after reading that it is a nasty one.

Good luck with it.

Rusty123

Moonwolf

Thanks for your reply.  I know what you mean about the hair.  I had to have my head buzzed on Thursday because it was falling out in handfuls.  Glad to hear that you're getting your hair back.  I hope I'm so lucky!

Have a good day!

Diane

enjoylife

I finished my taxoter August of 08 I am still wearing my wig first the hair came in Fuzzy I was told to cut it off there wasnt enough to wear without a wig any wasy and now it might be coming in a little faster but I have had a wig on next month 1 year I use to have thick hair so far its in spots not thick yet I also used Nioin wash and cont. and I used Biotin vitiams I was told not to use Rogaine because when you stop it your hair will fall out. It is a very hard thing to go through and I hope it does come back I have dreams about thick curly hair NOT MINE YET.....

Maura

enjoylife

 I hope I am not the 6. percent that will not get the hair back I have been reading this and most people get it back before now 9 months since my last one but its growing fuzz again after chopping the fuzz a few weeks ago .... 32 weeks out of chemo

Debonthelake

Hi, everyone,

I just finished Taxotere.  I'm hoping I won't be one of the 5% with permanent hair loss.  I have a sister-in-law, Jan.  She did experience this side effect.  Her docs said they had never experienced someone with permanent hair loss before.  I guess it's more common than people thought.  Thanks for the thread.

okblessed

Hello debonthelake --- please keep in touch and ask your sister-in-law to contact us if she will so that we can share stories/progress with hair regrowth/etc.  I am two years out --- I trim the 'fuzz' occasionally but no real hair has ever grown back in.  The top, after all this time, barely has a 'down-like' covering --- but it is nothing that could ever be considered hair.  If enough of us get together we might be able to get some research done and make some progress. 

I agree, I don't think it is nearly as 'uncommon' as we are told that it is.

What I want to know is --- is everyone just wearing a wig or have you come up with other solutions????

okblessed

Hello Heather - just checking to see how you are doing. Thanks for the tip on massaging the scalp - please keep in touch and let us all know how you are doing.

Blessings,

Pam

okblessed

Hello Maura - I have had the same dreams!  Funny that I don't realize I am thinking about my hair so much until I wake up and have had dreams about going to the beauty shop and getting my beautiful thick hair cut.

What is everyone doing in the hot summer time? wigs? should we just all get together and buy an island somewhere just for 'bald' people?  It is already getting uncomfortable here in Oklahoma.  I am finding that I am becoming a recluse because I am not comfortable any play that is not [1] air condtioned [2] has low wind velocity, and [3] equipped with lots of mirrors to make sure my wig is on straight.  I have given up on vacations because everyone wants to go to the beach or on a cruise and all I can think of 'will my wig stay one???' or, 'will I suffocate in this wig????'

I think I like 'buying the island' idea best - now if we can just find jobs that we can do 'from our home island ... '

enjoylife

I am 9 mohts out of chemo and still wearing a wig and I have cut my fuzz once and trying to be patient if I have to wear a wig this summer it will be my second summer the thing I hate the most its made me a reclous I was always out and about and now I have to shove myself out the door and think of any excuse to stay home ecept work I am there does anyone else have this problem my son even told me all you do is stay home now I shampoo carpet etc and work in the yard but I stay home too much..

okblessed

Hello - I completely understand about the 'recluse' mentality.  Mine is mostly because I am afraid the wind will blow my wig off - it slips because of the down fuzz on my head which i hesitate to shave off] and it is so darned hot to wear a wig.  Do you have wigs that you like?  The Korean wig shops are the best and cheapest but again the hair is usually dark so I have gone from a dark blonde [natural] to DARK browns in wigs. I always get compliments on my 'hair styles' from people who don't know its a wig but I still feel like taking it off everytime I come into the house and put my purse down.  I am not sure that I will ever get used to the sensation that I am 'wearing' something on my head. 

First step is to get a cute, edgy-cut wig in a color that makes your eyes sparkle!  Are there any wig shops where you live in Missouri?  If you will email me at my yahoo address [kirbypk@yahoo.com] I will send you some sites that sell really nice wigs - inexpensive - that look great.

Pam

rosebuddy

Hi, 

I'm new to this site.  I was talking to my sister this morning and was crying because I hate my hair since chemo!  Then I got on this site and I was put in my place....some of you don't have any hair.  My question is for those who have hair not your same hair before chemo but this damaged, extremely thin hair. My last chemo was Nov. 07 and it took about 1 year before it started to grow any longer than about 2 inches.  I have been doing prenatal vitamins and I had a beautician tell me to use this special medicated shampoo......Alante - nature's encore, pure herbs, shampoo treatment ( a scalp and follicle cleansing for thinning hair.)  She said that if your hair follicles are still alive it will help if they are dead of course nothing will help.  I can't say if I have had any luck yet.  I can see some new hair growing in but I don't know if that is "normal".  Does it take a long time to get hair to grow in thicker and not so damaged???????? 

I read the pamphlet on my drugs and taxotere did state that hair may not return.  That is the drug that played a number on my body!  Nurve damage in my feet, joint pain bad in my hips and back, I guess I have arthritis.  Anyone with joint, bone problems?   I'm a case I guess.

Life is good!

enjoylife

Rosebuddy I too too had Taxatore and it did a job on my hair I am taking Bioten vitiam and I tried some shampoo's havent tried the one your hair dresser said but its been slow for me I have to wear a wig out in public its probaly not but a inch in some places I have been out of chemo since August 08 but its been so slow I never dreamed it would take this long and I dont see it coming in thick and lovely like people say you will get it back.I was never told the chemo might make it not come back but I dont think I woold of changed my mind I want to live. I know its discourging my son graduates next week and I figured ths summer I wuold have nice hair NOT but I am not going to give up I am going to stop wearing the wig and go to the ball cap next week ecept at graduation. I massaged my head etc so I dont know what to tell you works but you are not alone there are more of us out there then we know.

Life is good hair just sucks...