Taxotere - side effects - permanent hair loss !

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Gail Perry

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#22
Mar 13, 2009
 
"I have NEVER said it doesnt save lives. i have NEVER said DONT take it."

And I never said you said that. ;)

I am terribly sorry that you weren't told this could happen. My point (you don't have to accept it but I get to say it) was that when all of this was discussed with me in 2006, I *was* told the whole story. I also researched it myself and found it.

I have absolutely nothing whatsoever to do with any drug company. I'm another woman who had breast cancer, was treated with Taxotere, and has had very significant trouble with her hair since then.

I don't know why you had more permanent hair loss than I did. It'e only been in the last month (2 years since my hair fell out) that I've come up with a hairdo that doesn't make me look like Art Garfunkel.

So while Shirley is mad at me -- and even starting to make personal attacks -- we're both saying the same thing: Taxotere can cause permanent hair loss.

I do think it's more common than patients are told. I know it hasn't been taken seriously by my medical team. However, in fairness to them, they see a great number of patients come back because their cancer has spread and they are now in Stage IV. So far I'm not one of them, although my tumor was large and aggressive and it easily could have gone that way for me. I had to use every tool available to me to do the most I could to keep that from happening.

I have had other side effects diminished or ignored by my medical team as well. The AI's give me terrible insomnia. The only reason the doctor took it seriously is that lack of sleep was giving me severe migraines every 3 - 4 days. I've had just about every side effect you can have from the AI's and I really wasn't told about the possible side effects in any honest and open way --*I think* because they wanted me to take it and just hoped it wouldn't happen.

I did my own research on these issues. Not everyone can do that. It can be tricky to find accurate information online, but knowing that the hair loss could be permanent, I went ahead with the Taxotere.

Rather than focusing on the side effects, I would like see to get more potential chemo patients get a second opinion on their treatment options.

I think there's a bigger issue here; I certainly have had the experience of not being given full information. There was a tremendous bias against having a mastectomy instead of a lumpectomy, even though the risk of it coming back in that breast is so great that it would have been six weeks of radiation afterwards.

My point is that it isn't the drug company hiding this information. It is the medical staff, telling us what they think will cause us to make the choices they think we should take.

When it comes to Taxotere I was told these things. It wasn't emphasized but I was told, but I also found it easily online. When it came to mastectomies I really had to push to have all choices open to me (I chose mastectomy and am glad i did; it was right *for me*), and imo they did try to hide information from me about the numerous and significant side effects of AI's.
shirley ledlie

Nantes, France

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#23
Mar 13, 2009
 
LADIES - have you had Taxotere and then your hair hasnt grown back? are you still wearing your wig?
If so can you please contact me. You can contact me on my first posting on this thread, untill it was hijacked, is my blog - you can contact me through this.
Many thanks
Gail Perry

United States

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#24
Mar 13, 2009
 
No, your thread was not hijacked and this is not "your blog." It's a public bulletin board.

I seriously considered continuing to wear my wig because I am nearly bald just behind the hairline. Fortunately my hair is very curly, and although it grows incredibly slowly now, it finally grew enough that a lot of curls minimize the very significant thinning. I was told this was a possibility.

I have what happened to Shirley, but to a lesser extent.

Shirley, you did not actually include a link to your blog.

By the way, the only reason that I defended Taxotere as a treatment in this thread (not "blog") was that you challenged whether it actually does anything. I'm just saying that it's a double-edged sword.

Shirley, you might just try not making any more digs at me. You might be pleased at the results.
Gail Perry

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#26
Mar 13, 2009
 

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I've read your first post, Shirley. I suggest that people read BOTH of our posts. Your message is important.

So is mine.

Get over it.
Gail Perry

United States

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#28
Mar 14, 2009
 

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Shirley, I'm sorry it left you bald and healthy. I wish it had left you with a full head of hair and healthy. I wish it had left me with a full head of hair and healthy. However, I think you are the one acting bizarrely because you went to a public internet bulletin board and expected to control what other people say. You asked for people's experiences with Taxotere (you can't control other people to the extent you want to).

I'm not going to go away. I WAS told about this possibility and the manufacturer is not trying to hide anything. They know their medication is a chemical club, as it were. The people who did not serve you well were whoever explained this medication to you and didn't tell you of this possible side effect.

Misguided lawsuits cost all of us money, but me even more so than some because I have no health insurance and have to shoulder the entire cost of my health care.

Cancer can make everything feel out of control, and you seem to be a person for whom control is very important. That has to make it all very hard.(No, I'm not going away.)
Gail Perry

United States

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#30
Mar 14, 2009
 

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Shirley, just suck it up. You cannot control what other people post. I am really sorry this drug left you bald. I'm sorry it left me with bald areas. It wrecked my toenails.

But that's not the fault of the manufacturer. They have been completely honest about the side effects. If you didn't know, then whoever informed you about this treatment misled you. I'm sorry that happened too.

But let's make sure everyone understands EXACTLY what you want, since it is so important to you that everyone march to your command.

She only wants to hear from people who are permanently and completely bald. Ugly, large bald patches aren't good enough. I suggest that candidates send pictures, and for heavens sake don't discuss it publicly first unless you want to be called names for not being EXACTLY what Shirley wanted.

Even though she brought it up publicly.

It's all about risk vs. benefit. The likelihood of benefit is markedly greater than the risk of baldness, and even if baldness occurs, the patient has still increased his or her likelihood of surviving a cancer that is very prone to spread.

If I had a friend who was this angry I would actually encourage them to get some counseling.
cocop

Leominster, MA

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#31
Mar 14, 2009
 

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Gail - lighten up! I can't imagine going through what Shirley has been through. Her going public in this manner is very helpful for those of us who may not have been aware of these possible side effects as we try to make a decision about treatment. This disease and its treatment takes so much away from us. Can't we as a group at least maintain our empathy toward each other?
Gail Perry

United States

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#32
Mar 14, 2009
 

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Cocop, i can imagine what Shirley is going through, because I have a lesser degree of it myself. I have tremendous empathy for Shirley and she has done nothing but attack me.

It can be extremely hard to decide what treatments to have and what not to have, the more so if the medical professionals around you give you less than complete information. Apparently this happened to Shirley, and I think it's an outrage. It happened to me to also. I was able to counteract it by getting a second opinion and by doing a lot of my own research but for a variety of reasons that isn't going to work for everyone, and they're going to end up in Shirley's situation -- with incomplete information.

But she's picked the wrong target. It isn't the drug company at fault here but the people who gave her incomplete information. That's my opinion and I'm going to say so. And I'm not going to sit around and not nudge back while Shirley repeatedly lashes out at me.

I basically have a very curly comb-over. I really do understand what Shirley is going through but it's not the drug company's fault. I have to help pay for misguided lawsuits and I WILL speak up when the issue is so close to my life.
penelope

Riverton, WY

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#34
Mar 15, 2009
 
I am just about to start my last week of radiation following a lumpectomy last July for Triple Negative IDC. I had A/C and Abraxane chemo which I finished Jan 15th. What side effects are you referring to about radiation?I guess I hadn't heard of anything awful, but now I'm curious. By the way, I'm still bald although maybe a little fuzzy and the eyebrows might be starting to come back. Thanks alot if you answer this. I haven't talked to a single other BC patient since this whole thing started.
Gail Perry wrote:
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.
Gail Perry

United States

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#35
Mar 15, 2009
 
Penelope, i didn't have radiation because i had a mastectomy with clear lymph nodes. I really don't know a lot about it. I have a friend who made your choices, though, and her hair did come back beautifully.

My eyebrows never fell out, but my eyelashes did -- all but one, right in the middle, on each eye -- go figure!

My eyelashes grew back but they aren't as thick as they were and they aren't as long as they were, so I use lash-lengthening mascara when it matters to me. I have no hair under my arms (oh DARN!)
penelope

Riverton, WY

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#36
Mar 15, 2009
 
Thanks very much Gail, I guess I can look forward to shaving my legs again too then. I hope you are feeling well. It really hasn't been too bad, I only realized how lousy the chemo was making me feel when I started to feel better after it stopped-it is pretty insidious. It was kind of you to answer.
Gail Perry

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#37
Mar 15, 2009
 

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Penelope the chemo really didn't make me feel bad at all except for when my hemoglobin dropped from 16 to 9. The nurses weren't taking it seriously because they had forgotten to compare current levels to where I had been.

It's been a long time coming back. Six monnths ago it was 11.5 but now it's up to 14.7 (it was just taken for an entirely unrelated reason). Sudden anemia like that feels really, really wretched.

I also had a very hard time adjusting to the AI's but that is mostly behind me. At least you won't have to take that one.:)

I called those single eyelashes my "rhino horns." I think it does help to laugh at it.
Gail Perry

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#39
Mar 16, 2009
 

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One of the good things for Shirley is that active discussions are high on the list for this site. So any time someone posts in this thread, her message is more likely to be seen.

So this is my post to keep it near the top of th elist.
Just Saying

North Port, FL

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#40
Mar 16, 2009
 

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Gail-Shirley didn't ask somebody to write a book about having trouble with bad toenails and how Taxotere saved your life. She was putting her question out there concerning herself and other people that could be going through the same thing she did and not being warned of the problems that this chemo might cause.All oncologist aren't so through about explaining things. You gave a lot of good information and readers can benefit from it.In knowledge there is power. Glad you're doing well.
Gail Perry

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#42
Mar 17, 2009
 
Thanks for the lecture, Just Saying. Believe it or not, it improves conversation when one person doesn't try to hold another person in lockstep.

So I gave good information, but I should not have??

Whatever reings your bells, Just Saying. My baldness problem is not as severe as Shirley's but definitely there -- or did you miss the part where I'm a woman with basically a comb-over hairdo?
Gail Perry

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#43
Mar 17, 2009
 

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Shirley, just keep digging at me, and I will just keep pushing back.

I NEVER, EVER said Taxotere is wonderful. Taxotere put me into severe anemia, left me with sigificant baldness and ruined my toenails.

It just happens that it ALSO have saved my life.

I described the available treatments as "slash, burn and poison" (I left out "menopause cubed -- the AI's).

What in calling it a poison makes it sound wonderful?
Gail Perry

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#45
Mar 18, 2009
 

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And ... partially bald isn't good enough for this.
Gail Perry

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#47
Mar 20, 2009
 

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Thought I would post one more time so the topic will get bumped up the list again.
Rita Fink SSMarie Mi

Sault Sainte Marie, Canada

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#48
Mar 24, 2009
 
Has anyone had problems with diarrhea from Taxotere? I had a treatment 3 weeks ago and had to miss my scheduled second round because of it. After reading all these posts about permanent hair loss I'm not sure I want to take it anymore, period. Plus, does anyone know the statistics on neuropathy from this drug? My oncologist has said he would reduce the dosage by 25% once the diarrhea stops. Does anyone know if this would make much of a difference?
Gail Perry

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#49
Mar 24, 2009
 

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Rita neuropathy is fairly common with both Taxotere and Taxol. It's a risk vs. benefit thing. Ask your doctor what your risk of having it spread is with and without the Taxotere.

I didn't have diarhea but it's also a pretty common side effect.

While permanent baldness happens it really isn't all that common. I don't really know whether it's the Taxotere or the AI's that have caused my extremely thin hair on the top of my head.

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