Permanent Hairloss-Taxotere

hrf

208Sandy, your situation sounds like mine. I started using just a hairpiece that does the trick as I just can't bear the idea of having to wear a wig all the time. So I wear either a hat or the hairpiece all the time. I don't have enough hair to even pull back into a ponytail. I saw many doctors about this. I was told that the hair follicles are so badly damaged, that they would not be able to survive a transplant. Add Arimidex to the mix and the situation is even worse. I have also encountered stupid comments from people.

Survivorwoman

I think, so far permanent alopecia was "only" caused by taxotere.

encyclias

Many months back when my MO wanted me to start a second chemo, he wanted me to have Taxotere.  I researched and decided it wasn't for me because of the neuropathy, being that I am a diabetic.  However, I also stumbled on the hair loss issue while doing my research on the drug, most of the data came from Britain's national health service.  It was also said that the 6% represented "reported" cases of hair loss; and that since most cases of hair loss are not reported by doctors, the occurence was probably much greater than 6%.

I am so sorry that so many are having hair problems.  I really hope they can find a way to reverse this horrible side effect.  Just being without hair for several months drove me up the walls.

Carol

SelenaWolf

Even with dose-dense ACT, I received literature from my MO stating that all of those chemo drugs can cause permanent hair loss.  I just crossed my fingers and prayed that it was a CYA statement.

jancie

Survivorwoman - sorry for being confused with the 1% versus 6%.  I get easily confused these days because I don't take enough time to really read what is being written and that is my fault.

(((Hugs)))

Survivorwoman

Jancie: no problem.  (((Big Hugs))) to you too!

Miss_Mama_Bear

So...my hair is growing. Anyone have this happen during treatment? I am due for #3 on Wednesday and I have a good 1/4-1/2" of new growth on my head. I know it is new growth because it is all white/grey and super fine (I didn't have any grey before and my hair was rather coarse). I am super scared about this because the hair is only growing on the top of my head where you would have male pattern baldness and I am wondering if it keeps trying to grow and keeps getting hit with chemo if it might cause additional damage. I am also wondering if the fact that I fasted before and after my last treatment is what caused my hair to stop falling out and actually start growing again. I am not fasting this go-round because I am sick with a cold/infection of some kind (not excited about what that might mean, either) I plan to fast for my subsequent treatments though.

taxoteremademebald

After 6 rounds of taxotere (TCH) I have permanent male pattern baldness.  So devastated. I would give anything to go back and not have taxotere. 

slv58

even bc again? Sorry, my heart does go out to those who are devastated by this marring SE, but maybe, just maybe it also gave you life? I was warned about SE of all my chemos and radiation, but any chance I had to stop cancer I was going to take. I am left with very thin hair and if I pull my hair back, exhibit m.p.b. I have very sparse eyebrows and eyelashes but I can't stop thinking how lucky I am to be alive one year later. 

208sandy

Dear Taxoteremademebald - I am so sorry this happened to you too - I had my last chemo five years ago and I WAS NOT told this could happen.  I understand how awful you feel - it's really hard to deal with.  The only thing I can tell you is that after all this time my hair has started to grow somewhat - lengthwise it started to grow about a year ago and just in the last six months there has been some "filling in" - my onc explained to me that taxotere may have damaged the stem cells and that's why there is baldness - in the past month I have finally started to go without a hat, a wig or a scarf - I wear my hair pulled back in a ponytail (like the rest of the population) - I bought a very good (read expensive) wig and it saved my life the last four and a half years - I am pretty ticked off that taxotere is still being used as a chemo it was my understanding it was hardly being used anymore that they use taxol instead - I could be wrong but it would be nice if we were warned ahead of time and given the true percentage of people who don't recover their hair - it's hard enough to have this bloody disease without people being truthful about se's.  Sending you hugs, S.

Miss_Mama_Bear

I totally agree Sandy! And I am so very sorry taxoteremademebald. All the other side effects are bad enough, and to have this thrown on top if us. Taxotere is an AWFUL drug on so many different levels. And yes, sly, it is good that it attacks the cancer so well, but when there is a perfectly good alternative - Taxol- to use that has greatly reduced side effects, why are they not using that?! Taxotere made me unable to climb half a flight of stairs after just 3 rounds, and I was an active 33 year old. I had to have steroid treatments to make me able to even do basic care for myself and my kids. I am over a month out of treatment and still have neuropathy of my feet, and the muscle pain/weakness has come back again. My hair and eyebrows were growing really fast during treatment and then 3 weeks after finishing treatment it all fell out again. At this point I don't know what my hair is going to do, but I do know that it is growing sooooo much slower than it did even during treatment, and I haven't even had my Herceptin in over a month, either. The point of the whole matter is that we all (I am pretty sure) went into this completely uninformed of the potential consequences. THAT is what makes me angry. And when I brought it up to my MO, he said that it was absolutely NOT a possible side effect. Then he backpedaled a bit when I brought up the 6% statistics that I had read, and said he didn't think it would happen to me because of my young age and the healthfulness of my follicles. That lack of disclosing potenital side effects is what has frustrated me through this whole thing. Not just the hair loss, but all of it! If I weren't on this site, I wouldn't have been prepared for half of what I was prepared for. 

taxoteremademebald

Hi All,

Thanks for the support. I am sure in time this too will seem manageable too but it is all so overwhelming right now.  I think the most frustrating thing is that I feel it was entirely preventable. I had spoken with my physician before getting TCH about the risk of permanent hair loss and was assured the risk was very small.  Every study I have since seen has shown a 2-6% risk. Despite how terribly devastating this complication is there does not seem to be much awareness in the medical community and there certainly does not seem to be a lot of effort to understand or mitigate the risk. I think a lot of women given all of the risks/benefits would still choose to take taxotere but others would chose not to. 

208Sandy thank you so much for the hope that maybe in time it will at least improve.  I am doing everything possible right now to try to get it to grow back. 

jumpy

T--like you I have read every academic article on Taxotere-induced permanent alopecia (TIPA) I'm not in healthcare, but I am an professor at a university with a med school and I have full access to any article I can find. I think the best two articles are among the most recent. The first (Miteva et al. 2011) is by a group of dermatopathologists who indirectly propose a non-validated test that distinguishes TIPA from androgenetic alopecia (AGA). The test requires a biopsy and a lab/ dermatopathologist who knows what to look for. Robo47 had this done, I think. The second paper (Kluger et al. 2012) presents a list of readily observable characteristics of TIPA that when combined with the characteristics in Miteva et al. 2011 may help assess your condition. So, here's my integrated review of the literature.

TIPA is appearing more frequently. The frequency of occurrence is 3-6%. Clinicians may be missing this as differentiating TIPA from AGA is a challenge as many of the clinical and histological features of these distressing conditions are the same. Compounding this problem is that the samples used in these studies have been small and the cytotoxic chemotherapy regimes have varied making it difficult to identify a single cause. Yet, reviews of the literature on chemo-induced permanent alopecia have consistently found taxanes, and Taxotere in particular, to be among the agents most associated with CIPA. However, many women who received Taxotere also receive one of several endocrine therapies and/or become menopausal during treatment--both of these are also know to be associated with hair loss. To add greater confusion the cause of AGA in women is believed to be more complex than in men. So, this persistent/incomplete hair loss/recovery may have one cause (Taxotere) or many causes occurring simultaneously.

The mechanism by which CIPA occurs is not well understood. Some have suggested that it destroys the follicles stem cell or disrupts the pathway by which the stem cell communicates with the hair matrix. But, again, there may be multiple causes so my advise to myself is to exercise as many options as make sense. And, I believe time is of the essence. Now, I am getting in dangerous territory because I am not a physician and I do not really understand this. But, simply put I want to do everything to revive the follicles before "scarring" occurs and it is not possible to do so. So, for me I have been using minoxidil (5%) foam 2x/day, Hairmax laser comb 3x/week, and biotin. My dermatologist friend suggested finasteride (Propecia) because even though my androgen levels are normal there is a change in the balance/ratio of estrogen to androgens. In the past the estrogen could over power the androgens, but not after Taxotere put me into menopause AND/OR Tamoxifen blocks the estrogen allowing the androgens to to my follicles' receptors instead. This occurs for some women, but not all. The only way to know is to try.

Now, back to what I understand about TIPA. It is usually also associate with the rarefication (thinning) of hair on the scalp, brows, lashes, arms, legs, axilla (underarms), and pubic area. However, I want to add that there is an old thread on this site where women associated these with Tamoxifen. Also, Miteva et al. (2011) found in a sample of 10 that people with CIA do not grow scalp hair  longer than 10 cm/4". And, Kluger et al. (2012) based on a sample size of 20 noted that TIPA is almost always associated with significant loss of brows and lashes.  My brows and lashes are growing as is what scalp hair I have. So, I want to try the Propecia.

I hope this is helpful. Please know I AM NOT A PHYSICIAN! I am just trying to find my on solution to this distressing problem.

CarpeVinum

I had taxotere and Cytoxan X 6 from Apr - July '13. My hair started to grow back mid Sept, and it did come back very full and thick, but my eyebrows seem to be gone forever. I am about to have my 2nd infusion of AC tomorrow for mets to T4 spine, and I'm having the same very painful scalp that I experienced with the taxotere with this regimen also. Hubby and kids shaved it into a mohawk for me 2 nights ago but I think I'll have to shave it all off today or tomorrow as it is really very painful. Too bad because I'm actually loving this 'do

Mely19

thanks for the info jumpy.  I believe that TIPA may be more common than they are reporting but it may have different degrees of alopecia. I am hearing that many are not growing hair on top of the head  very well myself included.  Are they not considered TIPA even if it always stays thin on top?  I don't know.  I will be one year out from last chemo this month and my hair is still so thin. I've had several haircuts to give it shape so I do know what little hair I have can grow but there is so few of them there. I had given if all this time to grow back on its own but it's not so I too started the to gain but will see if it helps or not.

taxoteremademebald

CarpeVinum, so sorry to hear about the reoccurrence. Sending prayers. 

hrf

I agree with all of you. If I had known about the possible alopecia as a result of Taxotere, I definitely would have chosen the Taxol instead. My MO is great but she also will not acknowledge that it was the drug that caused it. She claims it's because I had to have chemo 2 x within 4 years. But I find the Arimidex has caused even more hair loss and now I can't go out without a hat or hairpiece. I use the Minoxidil, the laser comb and take Biotin. I don't know if it helps but I figure it won't hurt. I don't know what propecia is. Can anyone enlighten me?

And I get upset when people tell me it's not so bad. These are the women who spend hours making their hair look good!! I tell them not to tell me that. Just empathize with me and don't lie to me. This hair loss is devastating!!!

yensmiles

I'm so sorry to hear of your experience ladies, and glad that you shared, it's making me rethink treatment. Nothing i say would probably make anyone who got surprised by the nasty side-effect, so... *hugs*

Ldeb

Permanent hair loss from Taxoterre is a real thing.  I had 6 treatments of TAC in 2007.  My hair came back sparsely.  Had fine, thin hair before treatment but no bald spots and it came back about the same.  Then began losing it again with male pattern baldness.  Was not told about possible permanent hair loss from Taxoterre.  Also hypothyroid so saw endocrinologist to see if under-active thyroid was culprit.  Endocrinologist  said hair loss can be caused by thyroid disease but not to the extent I had.  Had been on Aromasin since 2007 and had read that hair loss was rare side effect.  Talked with oncologist about discontinuing Aromasin to see if my hair would grow back.  Was off of Aromasin for over one year and still had more hair loss.  Now my oncologist tells me about Taxoterre associated alopecia.  Minoxidil did nothing.  Have upcoming appointment with dermatology.  No eyebrows, sparse eyelashes.  If I wear mascara,  eyelashes come out in clumps.  Disliked wearing wigs and settled on hats when on chemo.  Their is much anxiety associated with this.  But I'm alive.   Oncologist would like me to start Aromasin again.  My insurance always considered aromatase inhibitors as preventive drugs so there was no charge to patient.  Well, now they have been removed from preventive list and my charge is $1300 for 3-month supply!

taxoteremademebald

Still bald on top 14 months after Taxotere. So ugly. Nothing is helping. 

Miss_Mama_Bear

I just wanted to share this like with you all! Someone is finally doing something about this! I am hoping that this will help motivate drug companies and oncologists to be more forthcoming with potential side effects and allowing patients to have informed consent in regards to their treatment. I hope this finds you all well.

http://taxotere.linkwithlaw.com/2a

Charley

holy cow! I am just now seeing this and I recall looking for others in a similar situation in 2011. I have a large bald patch on the back of my head. Finished tcx6 in 5/2010. Very thin eyebrows and eyelashes as well. I use bumble and bumble spray hair powder. Does a good job of covering. Will definitely check out this website posted by Miss Mama B..

Meow13

I keep seeing commercials on class action law suits against taxotere.

amanda6

happened to me too, had taxtere (6) plus 5 years femara. I have male pattern baldness and bald spots. I use a hair topper

awefiown

Hey ladies,

I usually spend more time reading than posting, but I came across some information about lawsuits that I felt I had to share. Hopefully, some of you find this helpful in making an informed decision about a Taxotere law suit.

A dear friend of mine works at a law firm in NYC. I asked her is it true that lawyers will end up pocketing most of the money if women were to file lawsuits against the manufacturers of Taxotere for permanent hair loss? It is not true.

My friend cleared up a few other things as well. I've decided to post them in this thread to inform as many women as possible.

If anyone has been harmed by using Taxotere, the best thing to do is talk to a lawyer immediately.

This is not because lawyers are going to throw your name in with thousands of other women for a class action lawsuit. Class action lawsuits are not the default. In fact, lawyers often settle with big pharmaceutical companies, meaning individual injured parties make off with decent sums. Some lawyers charge you only if they win—and if you do win, they often take less than half of the financial reward. If you've been injured by any drug, you only have a set period of time to do something about it. Otherwise, the makers of that drug are not liable. Sometimes it's more beneficial to your case to sue in a state that isn't where you live. Only a lawyer can tell you the best way to build your case. My friend said that too often, people don't realise they can take legal action, and big name companies take advantage of this. The best way to make big pharma suffer is to cripple them financially—what ELSE would these unethical companies respond to?

I would link you to the law firm, but I don't want to come across as a spammer. Feel free to PM me if you'd like a link.

She has told me that of all the firms she's worked for, the one in NYC knows best how to talk to women and fight on their behalf.

Really hope this helps some of you ladies.

EDIT; i see people have linked to lawyer pages above me, so i'll just go ahead and post the link too: http://www.rheingoldlaw.com/Product-Liability-Overview/Drugs-Overview/Taxotere-Causing-Permanent-Hair-Loss.shtml

tracy77

Thank you for this information. Just reading about all the loss people have from this drug is making me cry.. such an emotional roller coaster being a survivor is. Although my hair is returned and grown in, it is falling out rapidly, my eyebrows are very think eye lashes no where they use to be and my nose hairs appear to be gone as everything is intensified. Thanks again and hope you are feeling well.

posij3

I used Taxol and have permanent hair loss; am not completely bald but might as well be. I've had to spend thousands of dollars to feel "normal" by extensions, wigs, etc. Very frustrating and upsetting that hair loss permanently is not being discussed. If Taxotere has this issue and lawsuits have been filed to make Sanofi-Aventis accountable for not sharing that information, than why is Pfizer not being told to do the same.

Taxol and Taxotere are very similar and since hair loss is also an issue with Taxol, we need to come up with some answers as to why Pfizer hasn't addressed this issue. If anyone is interested in filing anything legally, please contact me.

Thank you,

Charlotte

posij3

Tracy,

I just posted comments re: Pacliaxel (Taxol). Took Taxol in Oct 2007 and my hair eventually became so thin, I've had to resort to extensions and now wigs. My diagnosis was 2007 and after chemo/radiation, I realized my hair wouldn't be the same after it grew back at the end of 2007.

Like Taxotere, I believe Taxol has a higher percentage of permanent hair loss than Pfizer is telling patients. The product is very much like Taxotere and now that I'm researching it, believe many more women have had the same experience. Would you be willing to catch up by phone?

Thank you,

Charlotte

santabarbarian

I was warned, and I iced my scalp during my taxotere drip. (Not with paxman; I did a facsimile with caps designed for migraine sufferers that you freeze.) I did not ice on my first taxotere but did ice for the next 5. Most of my hair fell out from chemo #1, but my hair started to regrow even before the last chemo. If you have to take taxotere I think icing is somewhat protective.