Taxotere - side effects - permanent hair loss !

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Gail Perry

Pinellas Park, FL

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#2
Mar 6, 2009
 

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My hair is thinner (two years later) but some of that could be the Femara. I simply don't have as much body hair as i used to (ex: on my arms).

However, I do believe that Taxotere has played an important role in saving my life. These are not innocuous drugs. Although my fingernails are normal now, I still have a couple of very ugly toenails.

But even if I were permanently bald I would still be grateful that I didn't have to die of breast cancer.
shirley ledlie

Toulouse, France

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#3
Mar 7, 2009
 
Thanks for your reponse Gail.
However, as i am 3 years after having Taxotere, i could have been cancer free with another drug too and with my hair back. Having Taxotere is no garentee. My aim is not to put people off having it. My aim is for every onc to inform their patients that this is a genuine possible side effect - its not as 'small' as the drugs company are saying either. Then women can then choose wether to have it or not.
The trouble is, this is the most expensive chemo, so oncs DONT want patients opting out of it - its not good business.
Gail Perry

Pinellas Park, FL

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#4
Mar 8, 2009
 
Actually, Shirley, I had to fight to get Taxotere -- because given weekly, it is less likely to cause nerve damage to hands and feet,which is important to me.

My oncologist showed me the research for everything we chose. No, there's no guarantee it will work, but it really is the right choice (or in another form, such as Taxol), for many women.

I was told that in rare cases it can cause permanent hair loss. I am terribly sorry this happened to yu, but I think you're going to have a hard time with any kind of lawsuit, because there's no doubt that it works for a lot of women.

It IS a "small" risk that the hair loss will be permanent, but no one is hiding that fact. The fact is that for most women their hair does grow back.

I am very sorry this happened to you, but all our tools against breast cancer right now are "blunt force" weapons.

The thing is that you and I both could live for another 30 years as my mother did after breast cancer and never know whether any of the treatments after surgery directly contributed to our survival. But for myself, I made those final choices. No one forced chemo on me, and ... I was told all the risks.
shirley ledlie

Toulouse, France

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#5
Mar 9, 2009
 
Gail, you were lucky to be told. I and others were not. We were all told our hair would grow back. At the time i had Taxotere there side effects info lied saying that hair always returns. I know the lady who is responsibe for getting them to change their wording. That was obviously too late for me.
There is a large charity for BC in the UK, when i chanllanged their chemo info (all charitys say it will return non mention it could be permanent) they contacted Aventis Sanofi, who told them that they dont keep this kind of data. What a load of nonsense. at the moment i am trying to get my hands on SA reply to them. I certainly wouldnt try to take legal action against SA, they are used to class action for non disclosure, however what they wont want is bad publicity about that drug which is excatly what they will get from me.
Taxotere doesnt work for everyone. If i had been given these options

Have a chemo that might work and theres never been a case of permanent hair loss
or
Have a chemo that might work and might cause permanent hair loss

Its doesnt take much time for me to know which option i would have picked!

And by the way, the amount of women aftected in the same way by this drug is not as small as SA would have you believe!
Gail Perry

Pinellas Park, FL

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#6
Mar 9, 2009
 
Unfortunately, it's just not that simple, Shirley. And since you don't know "how small" I think the number is, you don't know what I believe about it.

I had to SIGN something that listed the possible side effects. I really am sorry this happened to you but it does happen. There are of course many, many different chemo options, but they all have potentially devastating side effects, and chemo is chosen by its likelihood that it will save your life. Any doctor who offered chemo on the basis you proposed would be just plain incompetent.

I live in Florida and I can't wear sandals because my toenails look so awful, and it doesn't look as if they're ever going to improve. That's rare too, but it happens. Yes, I'll take bad toenals over ugly hair, but it looks as if I have a very bad case of nail fungus and I do everything I can to avoid having my feet seen -- in Florida, where I moved to be near the water.

But there's no one to sue. It is rare, but it happens, and it happened to me.

Cancer is a disease where the treatments all present significant risk -- all of them. I had a mastectomy. The risk of lymphodema was considerable. i got lucky there. i didn't want a lumpectomy because I didn't want radiation. Turns out that NOW they know that the type of radiation i would have had can have serious side effects that they didn't fully realize then. Wouldn't have been their fault if it had happened.

I had three different chemos and Herceptin. They each had their risks and my heart output dropped for a while on the Herceptin. Thank goodness it went back up again as it "usually" -- but NOT always -- does. I've had miserable side effects from the Femara.

I'm sorry this happened to you but I do not think it would be right to sue anyone over this. Taxotere saves lives, and the choices you think you had were less likely to be effective. You could have ended up being buried with a full head of hair.
Lucky Lady

Sebring, FL

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#7
Mar 9, 2009
 
I had 12 treatments of Taxotere in 2007, a treatment every week. I lost my hair with the 4 Adriamyacin & Cytoxin combo I had first.I didn't lose my eyebrows or lashes with the Adria combo, but was surprised to do so with the Taxotere.Also after a year,I still have neuropathy in my feet and don't think it will ever go away.I am very healthy other than that and credit my primary Dr. for fixing all the problems the chemo caused My oncologist saved my life, but never did anything to fix the things the chemo did.My hair is thick and healthy like before the chemo & my nails are too.Which I lost several toenails.Lashes & brows are thick & healthy too.
shirley ledlie

Tours, France

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#8
Mar 10, 2009
 
My mission is to spread public awareness that this drug can and does cause permanent hair loss. Now if women still want it fine but at least they were warned I WASNT.
The drug companys just produce these drugs and dont care about the devasting side effects that can be left and they should do more to help eleviate them, if this means buying 'extreme confort' wigs and paying for scalp treatment (or even doing research into it themselves)then thats fine but to be left on the rubbish heay is NOT excptable. I WAS NOT told there was a chance my hair wouldnt grow back. And actually Gail, i do know that the amount of women left bald by this is drug, is not as small as you think it is. We are intouch and its gathering pace, just about everyday there is another lady joing our group.
I knew about the risks from chemo (apart from the hair one) because i was told, i was told about the risk from radiation i WAS NOT told by my team because they didnt know that it could happen themselves and was as shocked as me.
The drugs company keep it quiet and someone wether its them or the French government will pay the full costs for my wigs! Your nail problem is not really the same, if people see you toes they dont think 'cancer pateint' do they. I look like i am permanent chemo.
I did say in my post that i wasnt going to sue SA because it would be a waste of time - they are used to being sued for non disclosure!
I have several freinds in the UK that had BC (worse prog than me) and are still alive and healthy having had other chemos and the only things that drug companys care about is money.
Gail Perry

Pinellas Park, FL

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#9
Mar 10, 2009
 
Yes, Lucky. Taxotere can cause neuropathy. However, as you and I received it -- weekly -- it is less likely to cause neuropathy than Taxol. That's why i switched to Taxotere. I already had mild coordination problems and didn't need that complication.

In fact I only had 11 of the 12 treatments. Right after the 11th both my feet went significantly numb and I refused the 12th treatment. It gradually faded for me although half of both big toes are still somewhat numb.

Shirley, it would not be a waste of time at all to sue anyone for nondisclosure, but I can show you information from the manufacturer about what happened to you. It does happen.

I'm sorry you feel the way you do. On the other hand, I'm glad you're alive.

I didn't say my nail problems were "the same." But it sounds to me as if the people to sue would be the people who, you say, didn't know the hair loss could be permanent, because my oncologist and the oncology nurses where I went did know it could happen. The mfgr knows it and doesn't try to hide it.

No doubt people should know the risks of chemotherapy, but I was told -- by two different oncologists in two different cities -- that my chances of long-term survival were about 60% without the treatment plan and over 90% with it. I chose the increased chance of living in spite of the risks of complications from treatment.
shirley ledlie

Nantes, France

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#10
Mar 10, 2009
 
I am in contact with lots of people with the same problem as me _Non of us were told and you are the only person thats been told that it could be permanant. And as i said they changed their wording to say hair generaly comes back about a year ago after my freind took action over it! so thats only been changed about one year. Until then their site said hair always returns.
I had an intersting email from adr in Spain yestreday. He has made a study on 50 people with same problem from taxotere- thats a different 50 to the people i know. This is a fairly widespread side effect.
Gail Perry

Pinellas Park, FL

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#11
Mar 11, 2009
 
No, I'm the only person you're in contact with who was told. You're asking for people who had this problem, so that's what you're going to find. In research they call that "skew" -- your results look "bigger" than they really are.

I am sorry it happened to you and I would be really upset if I were still bald. I don't like it that I can't go barefoot in Florida.

On the other hand -- I'm glad to be alive.
shirley ledlie

Nantes, France

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#12
Mar 11, 2009
 
On the other hand you might have had nice 2 nice toe nails had you had a different chemo.
I am also in contact with 2 women who had taxoetre and have cancer back. Its not a miracle drug you know.
Gail Perry

Pinellas Park, FL

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#13
Mar 11, 2009
 
Yes, Shirley. Nothing works for all people. It's more than two toenails, and I don't care, because I'm alive to hide my feet. I did everything I could to save my life, and it's all better than a premature death.

Taxotere was the best choice for me. Anything else was second best and I was looking to improve my chances of survival, not keep my feet pretty.

I also had two other chemos and my hair fell out long before I ever even got to the taxotere. I would be distressed if my hair hadn't come back. I got lucky that it was only my toenails and my big toes that still have any kind of problem ...

but I'm alive.
shirley ledlie

Nantes, France

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#14
Mar 11, 2009
 
The thing is we dont really know if the taxotere has worked. You might think its worked and hopefully it has but you dont know for sure.
Anyway, your toe nails dont cost you 40 or 50 euros per month - i have been left with this large financial burden so i want rembursing so that i am not out of pocket.
I started this thread to ask people to ge in touch with me if they have had the same problem not to nit pick.
S o, if any of you has trouble with hair growth afer taxotere please contact me as the number is growing almost daily.
Gail Perry

Pinellas Park, FL

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#15
Mar 11, 2009
 
No. i don't know whether the Taxotere accomplished its goal or not. I don't know whether the Herceptin worked or not. I don't know whether the Femara is working or not. I have to take that for at least five years (who knows what research will show about long-term use). I've had tremendous (and expensive) side effects from it and I don't know whether any of it worked or is working. I don't know of the chemo combo I had before this is working.

My toenails don't cost me? What does the Femara cost me? What did chemo cost me? What did the Herceptin cost me? What does the bone scan I have to have once a year, and the Reclast, and the things I have to take to counteract the side effects from the Femara cost me?

I will tell you that it comes to a WHOLE lot more than 50 Euros a month.

Sorry, Shirley, but pointing out that Taxotere saves lives is not nit-picking. I do believe women should know that although side effects may be "rare," that word "rare" is there because they DO happen sometimes.

But I'll say again that I would rather live bald than be buried with a full head of hair.
shirley ledlie

Nantes, France

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#16
Mar 11, 2009
 
I am not telling people not to have Taxotere - i have never said that so dont know why you keep harping on about this.

The FACT is Taxotere has left me and many others disfigured in a way that causes great mental distress and i want the drugs company to pay for wigs and scalp treatment so that i dont have a financial burden for the rest of my life.

I also want every women about to start Taxotere to be made aware thats its a very real possibility (hows small is small)they this drug could cause them permanent aloplecia.
Thats all.
Gail, i would thank you not to contribute to this thread anymore but if you feel so strongly about my thread you start your own.
Gail Perry

Pinellas Park, FL

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#17
Mar 12, 2009
 
Actually, Shirley, I'm sorry, but I feel quite passionately about seeing both sides presented, and you will not be able to order me away.

Haven't you noticed that I have agreed with your message? But by itself it's been a highly biased message. You've said things such as that we don't know whether the Taxotere has helped us or not. That's true, but clearly it seemed like a good idea to you at the time to have the POSSIBILITY of long-term survival from it.

Another problem is that Taxotere is probably not the only treatment you had. Taxotere chewed up my nails but my hair was already long gone. I believe that both Herceptin and AI's interfere with hair growth. My hair grows extremely slowly since I had all these treatments. I don't know whether it's because of the AI or something that came before that.

I also think my message is just as important as yours, to try to find a way to live in peace with the effects of surviving cancer.

Sorry, Shirley, but it's a public forum. I'm sure other women who have experienced what you have experienced will contact you, but I don't want people scared away because in fact it IS a rare effect.
shirley ledlie

Nantes, France

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#18
Mar 12, 2009
 
Apart from the fact you are HIJACKING my thread.
My medical team told me that Taxotere has made me permanently bald! ALSO, Sanofi Aventis HAVE written to me acknowledging the fact so maybe you would like to nit pick with them? Actually the recorded figure for permanent hairloss with Taxotere is running at 6% which is not a small % in my book.
I will repeat myself again - start your own thread on how wonderful Taxotere.
Gail Perry

Pinellas Park, FL

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#19
Mar 12, 2009
 
I'm not hijacking your thread. I agree with you. People should know about all of these possible side effects.

No, I'm not going to start my own thread. I am going to state again that Taxotere saves lives. All cancer treatments, however, can come with a heavy price. And if this side effect is at 6% I think that's pretty significant.

You just want a thread where nothing good is said about Taxotere. in fact, Taxotere is less likely to cause neuropathy than Taxol is. Both will make your hair fall out, and I would hazard a guess that if Taxotere can do that permanently (and we know it can)-- then probably Taxol can also.

If you want to see me dig my heels in, Shirley, just keep trying to tell me what and how to post.
Gail Perry

Pinellas Park, FL

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#20
Mar 12, 2009
 
I just did a quick GOOGLE search about Taxotere and hair loss and found this statement on the very first website:

"Hair loss is usually temporary and, for most people, hair will start to regrow once the treatment has finished."

Usually and for most people. That means that for some peopl, it won't be temporary and their hair won't start to regrow when treatment has finished.

I really do sympathize with your problem, Shirley. My hair has been (apparently) permanently thinned, and grows extremely slowly now. It doesn't bother me on my arms and I hardly ever have to shave my legs, but it's been a real trial to come up with a hair style that hides the nearly bald spot near the front.

But Taxotere really does save lives. All our treatments are clumsy and heavy-handed right now: I've described it as "slash, burn and poison."
shirley ledlie

Nantes, France

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#21
Mar 13, 2009
 
I have NEVER said it doesnt save lives. i have NEVER said DONT take it. If you got your head out of you know where for a min and read my posting, WHICH YOU HAVE HIJACKED,you will see that i am warning people of the possible side effects which is actually higher than 6% its actually 6.3 % but will acxtually be higher than than because they havent included the people that die shorlty after have taxotere and others that have other chemos so i think we could confidently say 8%. Like i said if you read my posts, 3 or 4 years ago their info did not say what you are reading now. I know the lady who fought to get their lies changed, which happend 1 to 2 years ago.
I started this post to ask people with the same problem to contact me NOT for people to comment about it. So yet again i am telling you to start your own thread - so why dont you? no, because you just want to be agumentative.
Actually i smell a rat......it sounds like you have something to do with Sanofi Aventis. So anyone reading Gails posts please take that into consideration.
This is not a thread to tell of the benefits of Taxotere it is to warn women & men about to start Taxotere that you will almost certainly not be told of this sie effect because they dont want people knowing about it and turnung their drug down. i am not advising anyone to turn this drug down just to be aware of the facts and make you own mind up. I and hundreds if not thousands were not given this advise.

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