Taxotere - side effects - permanent hair loss !

Essentially all my hair fell out

EXCEPT

one long eyelash right in the middle of each upper eyelid. Weird!

To Shirley at Fonsorbes, France
Please see http://her2support.org/vbulletin/showthread.p...
another permanent Taxotere hair loss blog

I had taxotere in 2002 and have permanent balding! I spoke to my oncologist about this and he said now that I brought it to his attention, he has noticed this in other patients too. When I spoke to Aventis about this they totally denied that it causes permanent hair lose. I then received forms from Aventis asking me not to sue them! I just want my beautifuk hair back! It used to take me 45 minutes to dry my hair. Now it takes 3 minutes! I have been taking Biotin 5000 mg for years, as well as eating a lot of protein. Recently I tried Redken Intraforce which caused my hair to fall out even more. I am devastated. I look like an old bald-headed man! I was considering Bosley hair transplant, but now I don't know if this is a possibility. Help!

Rochelle Rosen wrote:

I had taxotere in 2002 and have permanent balding! I spoke to my oncologist about this and he said now that I brought it to his attention, he has noticed this in other patients too. When I spoke to Aventis about this they totally denied that it causes permanent hair lose. I then received forms from Aventis asking me not to sue them! I just want my beautifuk hair back! It used to take me 45 minutes to dry my hair. Now it takes 3 minutes! I have been taking Biotin 5000 mg for years, as well as eating a lot of protein. Recently I tried Redken Intraforce which caused my hair to fall out even more. I am devastated. I look like an old bald-headed man! I was considering Bosley hair transplant, but now I don't know if this is a possibility. Help!

Rochelle, are you taking an AI or Tamoxifen? I know (from personal experience) that AI's can keep hair from growing back. Not sure about Tamoxifen.

I have been done with Tamoxifen and Arimidex for more than 4 years. The thining just got much worse from the Redken Intraforce.

shirley ledlie wrote:

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.

I have been reading some post about taxotere and hair loss. I finished chemo 1 week before Thanksgiving in 2009. I expected hair loss from chemo (I had taxotere, herceptin & carboplatin), but I didn't expect that I wouldn't have a full head of hair almost 2 years later. Before chemo, my hair was very thick, now it is very thin and I have big bald spots. Needless to say, I still wear a wig when going out. I have used Rogain & I don't know if it has helped or not. I would love to have my beautiful hair back, but that doesn't seem to be possible. When having chemo, I had frozen mittens & booties placed on my hands & feet for the duration of the taxotere. I haven't had any problems with neuropathy. I have since seen a TV show where a lady had a "frozen" helmet placed on her head to avoid hair loss. Wonder if that was successful.

Good luck to you. I a thankful to be alive and pray that I never hear the 3 worst words, "It's come back". Thank goodness for cute wigs!

Phyllis

Phyllis Tumlinson - Texas wrote:

<quoted text>
I have been reading some post about taxotere and hair loss. I finished chemo 1 week before Thanksgiving in 2009. I expected hair loss from chemo (I had taxotere, herceptin & carboplatin), but I didn't expect that I wouldn't have a full head of hair almost 2 years later. Before chemo, my hair was very thick, now it is very thin and I have big bald spots. Needless to say, I still wear a wig when going out. I have used Rogain & I don't know if it has helped or not. I would love to have my beautiful hair back, but that doesn't seem to be possible. When having chemo, I had frozen mittens & booties placed on my hands & feet for the duration of the taxotere. I haven't had any problems with neuropathy. I have since seen a TV show where a lady had a "frozen" helmet placed on her head to avoid hair loss. Wonder if that was successful.
Good luck to you. I a thankful to be alive and pray that I never hear the 3 worst words, "It's come back". Thank goodness for cute wigs!
Phyllis

Phyllis, here's my question for you -- not to prove anyone "right" or "wrong" but because it seems to have happened to me. I also had Taxotere, and I also had very poor hair growth afterward. HOWEVER, I was also on an AI.

Now they've discovered that AI's profoundly affect hair loss, so the combination of the chemos (not just Taxotere, I had something else before Taxotere that made my hair fall out)... and the AI's BOTH affected my hair.

I finally dropped the AI because I simply could not tolerate the side effects -- even though it is absolutely certain that AI's lower the number of women who hear the words "It's come back." My hair hardly grew at all, and I could *not* find a hairdresser who believed me, so every time I had my very thin hair trimmed they took off MORE than had grown out. It was extremely frustrating.

I also had a bald spot and wore my wig much longer than I expected to, but in my case the real culprit turned out to be the AI.

Taxotere saves lives. AI's save lives. I really don't like that I had to cut the AI's off but I had no choice.

Gail Perry wrote:

<quoted text>
Rochelle, are you taking an AI or Tamoxifen? I know (from personal experience) that AI's can keep hair from growing back. Not sure about Tamoxifen.

What is (AI)?

What is AI?

Hi Phyllis,

I finished Taxotere and Carboplatin in Oct' 09. Did 33 rounds of Radiation and a year of Herceptin. I had a bilateral mastectomy and three reconstruction surgeries. My body has had more drugs in it than I care to think about. I was hormone negative so am not on any medications now. My mother is Spanish and has a VERY thick head of hair. My hair was thick before and is just as thick if not more than before.

I have read quite a bit of this thread and really wonder why some women have lost and not recovered their hair after Taxotere and some have. Do genetics have anything to do with it? Hormone drugs? or a combination of various things?

I'm so sorry that some of you have little or no hair. One of the things I have tried hard to do since diagnosis is bring cancer full circle by looking somewhat like my old self again. I hope you can find a different way to make this happen and keep moving forward with your lives. If Taxotere is the culprit, I hope something can be done about it.

Take care...Liz

well well well i have had taxotere and my hair is growing back (i used the cold cap so it didnt all fall out ) my haiwent a lot thinner but is growing back lovely and thick now but i wouldnt be bothered if it hadnt i am alive and thats all that matters to me

jayne jessop wrote:

well well well i have had taxotere and my hair is growing back (i used the cold cap so it didnt all fall out ) my haiwent a lot thinner but is growing back lovely and thick now but i wouldnt be bothered if it hadnt i am alive and thats all that matters to me

I'm with you Jayne. I'm glad to be alive.

shirley ledlie wrote:

I have been left permanently bald by this drug.
Trying to find as many others as possible, please contact me if its happened to you so i can tell you our plans. there are a few of us already so need as many on board as possible.
I have a blog that you can contact me through
http://taxoterehairloss.blogspot.com/
If you know anyone that this has happend to please ask them to contact me. many thanks

It is nice to hear there are other people who had the same chemo and had the same side effect. My chemo was 5 years ago, I still don't have my hair and I gave up. I'm grateful that I'm alive without hair. I guess is there other thing which can reverse it or work to have some growth back?

Ruth B wrote:

<quoted text>
It is nice to hear there are other people who had the same chemo and had the same side effect. My chemo was 5 years ago, I still don't have my hair and I gave up. I'm grateful that I'm alive without hair. I guess is there other thing which can reverse it or work to have some growth back?

Ruth, are you on hormone suppressing therapy? It will keep your hair from coming back.

In 2009 I had Taxotere, Adriamycin, and Cytoxan. I have terrible pain from neuropathy and my head now is almost bald. It was very thick and healthy before the chemo.
No one told me I could possibly lose my hair permanently, nor did they tell me I could have this terrible pain.
We aren't promised the chemo will keep the cancer from coming back either. Believe me, I'd have taken a different approach if only I had been told.
Gail, I think you should stay out of this if you aren't having any problems. Those of us that are having to deal with no hair are devistated. The oncologists need to know how many of us are out here suffering from the medication they are using.

Excuse me, Faith, but you haven't read all my posts if you think I had no problems. I had the same chemo combination you had. I declined the last session of Taxotere when neuropathy started in my feet. My big toes are still numb five years later and I have CP, so neuropathy would have been very serious for me. I was already clumsy.

I also lost all my hair. I am entirely entitled to relate my experience and I do not appreciate your attempt to silence me. You should know that most people, including me, will react in the opposite.

I WAS told that rarely hair doesn't grow back, and doesn't grow back well. That was the case for me until I ended hormone suppression therapy, so it was an ENTIRELY reasonable contribution to the conversation.

I was also told that neuropathy was a real possibility. I was also told that it was more likely with Taxol, the first drug they were going to use, than Taxane, but that it was possible with both.

I agree with you completely, though. Oncologists need to be more honest about the consequences of these therapies. We're all grown up and we can handle the truth. I was devastated when my hair didn't grow back also. I consider myself quite lucky that in the end it did, and I don't think ANY facts about side effects should either be hidden or downplayed from patients. It's just wrong to do that.

My onc was completely honest about the chemo but not about the hormone suppression treatment. I have had permanent, negative effects from that. So the only real difference between you and me was where we weren't told the whole truth.

I suggest you rag on someone else. I won't take it.

I totally agree with you Gail.
I was devastated when I went through this thread while on Taxotere only to discover that apart from this horrible event there were more to come.
I spent days and nights crying because I didn't know what to expect.
My hair came back eventually and I hope that every single woman facing this nightmare,doesn't have to cope with hair loss as well.
The oncologists are doing their job some of them better than others.They are only human but their relation with the pharmaceutical companies is to be questioned and controlled at last.
All the best to all of us...

Gail Perry wrote:

<quoted text>
Ruth, are you on hormone suppressing therapy? It will keep your hair from coming back.

I'm not on any medication!