taxotere and permanent hair loss

diana50

hrf

i was on arimidex for 5 and half years and my hair became very thin....i wasn't bald but i didn't have my normal hair the last few years of arimidex. after i ended the arimidex; my hair came back thicker and pretty much like it was 8 years ago.

my doc didn't tell me about side effects of any of my treatments. for me, i just think they are trying to find the most effective treatment to kill cancer cells. i never asked either....at the time of diagnosis i just wanted the cancer GONE...* but, looking back...i think i would have still done the same treatment .  i ende up with four broken ribs and damage to my chest from rads...and the side effect didn't appear until 4 years AFTER rads....i still have rib issues.

the treatment for cancer messes with our DNA and is ..."poisen"  i feel bad for people struggling with damaging side effects.  hang in there.

charmainejensenvoisine

I finished with chemotherapy in February 2 2010.  All my eye lashes fell out within 10 days of chemo and I too was on Texatere.  They started to come back again some at the end of March and then started to fall out again at the end of April.  Now a few weeks ago I tried to put mascara on for the first time since finishing chemo and some eye lashes fell out.   I wonder if this happened because my eye lashes are not strong enough to withstand mascara at the moment.   I do not have that many layers of eyelashes (possibly one on top and bottom).   Eyebrows are coming in very sparse and next to none.  I have to pencil them in.   The thing I hate about my eyebrows (is the right eyebrow has a higher arch and rounded and the left brow is lower more less and straight across) Unfortunately as a result of my having a mild case of bells palsy last Summer (2009).   I have been trying to draw on the brows to match lol

I go to Carolyn Visage to get my brows fixed monthly and the lady there has suggested having them tattooed, but then I have spoken to my hairstylist and she has told me that when one gets older that the tattoed brows become very unshapely (so it would be more or less a loss of money).

Charmaine

ktym

Charmaine, I can't wear mascara anymore either.  The eyelashes coming out hasn't gone away in over a year, but, I too have noticed that mascara makes it worse.

I actually read this thread and questioned the taxotere neuropathy and hair loss and was told never happens.  Now I'm told that since taxotere use is more common they are indeed finding neuropathy, and though it occurs rarely, permanent hair loss.  I'm told people had high hopes for taxotere being less harsh and are finding it not to be the case.  Too early for me to know how good a job having had it will do in keeping me alive.  That point comes up every time we get a lot of posting on this thread.  I don't think anyone says I'd rather be dead, but there is no doubt it has effected my career and quality of life.  To answer a previous question, if I had it to do over, I would have insisted on a change to either Taxol or an AC regimen.  That I blame myself for and regret daily.  I should have stuck to my guns and made someone really listen to how miserable I was.  I was flat out told by the NP caring for me that it must be I had poorly fitting shoes (I saw my chart, she actually put that in the notes)  that I could not have neuropathy.  I should have walked and found someone who would listen.

Firni

Charmaine, I never heard that about tattooed brows.  I have a friend who is in her 60s and she's had her brows tattooed for years.  The thing with hers is that she has to have them redone every 4-5 years because the color fades.  I didn't lose my lashes and brows until after chemo was done.  But now it's been almost 17 months since and the brows are a no show and the lashes are sparse.  There is enough to get mascara on but they are spaced pretty far apart and short.  My lashes fell out completely maybe 3 times before they actually stayed.

ktym

Just read what I posted and had to laugh.  Haha, I should have walked.  I wasn't walking very well at all at that point.  Even now can't walk as long or far as I used to.  Sick humor I guess but it did strike me funny.

hrf

At least I know I'm not the only one....that does help.

enjoylife

No one on this site is the only one we are all in the same boat and it all is sad because we got punished because they were greedy money is what it all has to do with I hope Mike Douglas doesnt get Taxotore or he might look like us but he has the money to fix any head problem I am sure..

crazy4carrots

Enjoylife -- I just read some info about costs (Taxotere vs Taxol) in Canada, and it turns out that Taxotere is almost twice as expensive (the drug and the administering of it) as Taxol.  That being said, it would seem that in our single-payer, non-profit medical system here, Taxol would be the preferred chemo because it's cheaper.

The reason it isn't is because many studies have shown Taxotere to be more effective than Taxol, which is why it is used far more often here.  However, the good news is that recent clinical studies have shown that Taxol x 12 given weekly is now proving to have an advantage over Taxotere.

Now, with more and more incidences of taxotere-induced permanent hairloss, coupled with these new studies, Taxol x 12 may soon become standard of care.

LadyinBama

Those of you with permanent hair loss, do you know the dosage you got of Taxotere? How many treatments of it did you have?

Firni

Dosage is based on weight.  So it would be different for everyone.  I had 6 rounds.

hrf

I don't know dosage but I had 4 rounds

survivorat28

Wow,

If I only knew, I was diagnosed at 28 and they put me on TAC which now i figured out about taxotere which is now to late as the last 4 years i've been trying to figure out why my hair won't grow back.. I don't know if it would have changed my mind on wether or not to take this route but I do think it would have been nice to know. All i have been told is that it must be genetic. Im thankful to still be here and have beaten this horible disease but it has changed my life. My friends and family know that i am bald so its not to bad but i do not leave home without a wig. I tried to do so for so long and i could not put up with the stares.. it eventualy made me very depressed and now I live in a wig or hat. I had long full head of hair so i could not understand why it was genetic.. next time im in for my check up this will deffinatly be brought up as one of the topics.. im sure they are more aware of this issue.

thanks for listening,

survivorat28

By the way I had 6 rounds of TAC

Kathy044

Re genetics: my father's hair started receding when he was in his late teens, all three of my (adult) sons  the same, so I assume I'm a carrier of a male pattern baldness gene.

My hair started thinning and receding on the top and on each side when I started going through menopause, not as bad as a man, but bad enough that by the time I was diagnosed with bc (age 65) and considering chemo I hated my hair already so much that the possibility of  more loss didn't mean much. I expected to do so as I aged anyway.

So I guess where we start from makes the big difference. I was more worried  about chemo and heart effects, so 3 x FEC + 3 x D (taxotere), as offered, seemed the better choice over 6 X FEC.

I don't know what will eventually happen hair wise, I had my last infusion April 1st,  my hair has been coming back very slowly after the taxotere as others have found, but it is coming in evenly, about 1/2 inch on the top so far and an inch around the ears, and in this hot weather I've started going topless, ( got a strange look one day coming out of a women's washroom) but hey I've got some hair! 

 Whether I will lose it again due to genetics we shall see, but apparently having the male pattern baldness gene hasn't made a difference in the hair starting to come back in. 

shirleyl

Diana, you say 'your hair became very thin' so i take it it grew back after your chemo then and then became thin when you started taking you AI ?

The women that have permanent hairloss because of Taxotere is around 6.3% but probly higher than that, more like 10% and its permanent. Nobody has grown their hair back, years later, the top derma in Paris believes it caused stem cell damage so i think we are still along way off any help.

kittycat

I just read that the weekly Taxol treatments are more effective.  I'm glad to hear this because my onco put me on weekly Taxol to give me a better quality of life during chemo.  It sure helped!

shirleyl

In north west France there has been a study, which is still ongoing, to discover the true figure of this disfiguration caused by Taxotere. Sanofi Aventis are refusing to talk to the oncologists about it! Sanofi know that they are guilty of non disclosure about this subject and want us to just shut up but they must realise by now that is not going to happen and that they cant carry on disfiguring women with their drug without the true info/stats being known by every women about to have this drug. Every women has the right to know and understand the real threat of this happening. It is not 'very rare' as they say but actually common and frequent as anything above 0.01% and under 10% is classified as common and frequent. Thats why they dont want the true figures to come out because they know they cant class it as very rare!

Firni

I find it interesting the some don't grow any hair back at all and some of us had some hair come back but are dealing with the male pattern baldness thing.  I have a nice ring of hair around the sides and lower 1/3 of my head in back.  But the crown and upper 2/3 of the back of my head are pretty much comb-over.  I can count the actual hairs that have grown back in that area.  If I could wear a yamica (sp) all the time, I'd be set. 

How can women report their own SEs to the FDA?  We shouldn't have to rely on our docs to do it especially since they don't believe it's the chemo keeping the hair away.

Google or Bing Taxotere hair loss France study and you'll get a ton of info on it.  It's disgusting how women are being lied to. 

LadyinBama

I was scheduled for taxotere after my FEC. But in my appt with my onc yesterday, I told him about all this. He said he'd never seen this happen, but he said he would switch me to taxol if that made me feel better about treatment. I appreciate him being open to a change in drugs. So, no taxotere for me!

okblessed

It is August 2010, this topic is still receiving inquiries about women around the world who have used TAXOTERE and are permanently bald.  We have made every attempt we can think of to let others know of the risks.  None of the Breast Cancer Organizations have joined us, the Susan G Komen Foundation 'wished us well' and we never heard from them again.  I have decided to not visit this site anymore.

If you need support, you will find a great group of 'taxotere-induced bald ladies' at www.aheadofourtime.org

Blessings. 

marcy4

LadyinBama

I did the same thing as you did and my oncologist was did not have any problem agreeing in switiching me from Taxotere to Taxol.  He said weekly Taxol was more effective than Taxol every 3 weeks and with some work on his part, he was able to make that happen for me.  My hair and eyebrows are already beginning to come back in and I still have 3 Taxol treatments left. Even my husband has commented on how much hair I am getting and how dark it is.  I have these wonderful ladies to thank for saving me from the possible of permanent hairloss.  I only wish that they did not have to go through it in the first place. 

dlb823

Having done TC and now feeling so grateful that my hair came back, I've still been following this thread with interest.  I have nothing to add, except to give Firni and others who might want it a link to how to report an adverse drug reaction.  This link is tricky to find, so you might want to bookmark it:   

https://www.accessdata.fda.gov/scripts/medwatch/medwatch-online.htm

shirleyl

Patients being told they have to have Taxotere need to start putting abit of pressure on the oncs and question them on the % etc. The ladies that do ask get told 'its very rare' or 'i have never seen it' which of course means they are getting fobbed off.

They need to ask what %, what studies have been done, can they see the results, and ask for something in writing about the % - its only when these questions and abit of pressure is put onto them that they will keep to the truth and give it some thought.

Dont forget 'rare' means less than 0.01% 

If its a year and your hair has not returned you need to report it.

hrf

It's been a year. To whom do I report?

Today my onc admitted that there is now evidence that taxotere leads to permanent hair loss. I'm not the only one of her patients in this situation. She said no matter what I do, it won't grow back. F**K!!!

dlb823

Without going back through this entire thread, I'm wondering if those of you in this situation might have grounds for a class action lawsuit, especially if this is a SE the drug manufacturer possibly knew about but did not fully disclose, or if the percentages are turning out to be significantly higher than reported, so something they should have known about.  Just a thought...    Deanna

shirleyl

hrf i am so sorry you have got this now! It doesnt get any easier.

You need to get your onc to report it and you should also report it yourself to to make sure its done!

In the USA you report it to the FDA - is that right Pam? if not Pam will tell you how to do it.

In the meantime you might like to join our support group www.aheadofourtime.org    i believe there is a form on there to make your own report.

Deanna - we are working on 'stuff ' which is as much as i want to say on here but i can say with 100% confidence that Sanofi Aventis have def not fully disclosed even today they are fighting to keep this under wraps which disgusts me.

hrf

I'm in Canada so I don't know who I would report to. I will ask my (lawyer) son.

kittycat

hrf - I am so sorry to hear this.  I hope your son can help you fight this. 

hrf

Unfortunately, no one can make the hair grow again and that's all that I want. I think that's what all of us want who are affected by this.

marcy4

I agree with hrf.  Although  I did not take Taxotere.  I cannot imagine not having my hair grow back.  No amount of money could replace it.  A young lady in my town had brain cancer and the radiation caused her permanent hair loss.  She has got a wig that she has had glued in placed.  I would be relunctant to do this, but she had it done at a place in Mississauga this summer and seems happy with the result so far..  My concern would be how it would affect cleaning my scalp.  I believe the wig was about $2000 so it is expensive too. Once again, as I see my hair beginning to grow back in, I think of you ladies often and wish a remedy could be found for you.  I don't think anyone really understands the impact of hairloss until they experience it for themselves.