Permanent Hairloss-Taxotere

shirleyl

Permanent Hairloss-Taxotere

shirleyl

Ladies, for anyone not on our emailing list for the above problem , if you havent got your hair back after 6 months please contact me.

We are a large group of ladies who give each other support and are busy working on things :-)  you dont have to do anything but you will at least keep up to date with whats going on.

I am gathering stats for my spread sheet so need as many sufferers of this disfigurment as poss.

thanks alot.

dlb823

shirley ~  I've heard of this happening occasionally, but assumed it was extremely rare.  So when you say "large group" that caught my attention.  I went through TC last summer/fall, and in spite of talking to 3 different oncs, I don't recall ever being told that this could happen.  I'm curious to know if it's in the hand-out literature as a potential SE for either T or C.  I'm also curious to know if the # of infusions (4 vs. 6) appears to make any difference.  It would be good to have the facts even if we are fortunate enough not to have had this horrible SE happen to us.   Deanna

shirleyl

Hi Deanna, i cant help you with the literature as i am not in the USA but France.

There doesnt seem to be any pattern as to wether its more likely the more sessions you have, myself only had 3 and without checking theres at least another 2 ladies that had just 3.

The thing is the Oncs dont know about it because the drugs company are keeping it hushed up which is scandalus!

Anonymous

Hi, Shirley.  I had only 2 treatments (stopped because of allergic reactions - one of which being severe folliculitis that lasted three weeks) and the last one was April 23, 2009.  I am getting growth except on the very top of my head, like male pattern baldness.  Very frustrating and I am fearful the taxotere is causing it.  Am using 2% minoxodil for women, as recommended by a pharmacist familiar with breast cancer treatments and side effects.  Only using it 2 weeks, so don't think I am having results yet.

shirleyl

I am sorry it does sound familiar! The minoxodil only works if you keep using it - when you stop any of the hair the drug has prodused will fall out.

Our problem seems to usually look like male pattern baldness - its very destressing.

Give it another month or two before really panicking :-)  please, keep us in mind and if you are another unlucky one get in touch and we can add you to our growing list and you will get plenty of support from people who understand. Hopefully yours will return.

What does your onc say about it, they HAVE to report it to Sanofi Aventis as a side effect - but they will say its extremely rare as this is what they always say. WHATS EXTREMELY RARE!

504EVER

I finished my last round of Taxotere and Cytoxin 3 months ago and my hair has started to grow back, albeit very slowly.  It is very sparse on top.  I, too used the term "male pattern baldness" when discussing it with my husband.  The is my second bout of breast cancer (one, completely unrelated 12 years ago) during which I had Adriamycin and Cytoxin.  I lost my hair, but it all came back.  This time I've lost my eyebrows and eyelashes as well.  No one told me, either, that a side effect of Taxotere might be permanent hair loss.  I'm only finding it out now from these blogs.  I hope that more hair comes back but I'm starting to lose hope.  I have no idea how I'm going to deal with this if more hair doesn't grown back.  It's very hot where I live and wigs haven't been an option for me.  I'm tired of wearing hats and scarves.  I'm tired of not having hair.  

iamever

I wish you luck with hair regrowth. I had taxotere 4 years ago and my hair regrowth consisted of a pitiful baby fine muff around the bottom of my head, none on top, and no regrowth of eyebrows or lashes. Just the hair on my legs grew back, but even that was sparse. I had permanent makeup tattoos done for my eyebrows. Unfortunately I was just diagnosed with a local recurrence and have started chemo all over again (3 infusions of Halaven which I could not tolerate and will start CMF in 2 weeks), so now I am once again as bald as Kojack.  I'm hoping a side effect will be that my hair regrows after I finish chemo this time around. Good luck to you. No one understands how devastating alopecia is until they have experienced it.   

hrf

I also have had bc 2 different times (unrelated). First time was FEC and my hair grew back. Second time was TC x 4 .... and my hair has not grown back. Top is very sparse ... more around the edges but even that is very fragile. I have seen several doctors, even had scalp biopsy and nothing. I'm not a candidate for transplant because the remaining hair is so fragile that it probably won't take. Also had my eyebrows tattooed recently. No hair on my arms or legs....nothing. It is devastating. People say "wear a wig" ... but we all know how uncomfortable that is. I finally got a small hairpiece that sits on top to try to cover a little bit better ... but even the minoxidil isn't helping and I've been using it for a long time. Doctor said at first, it will grow back. But now admits she has a few patients like me. No one warned me. Maybe I would have declined the Taxotere if I had known.

winnie2

....and i thought I was the only one.

I lost all eyebrow and eyelash hair as well as scalp, and my scalp hair only started to grow back 6 months after the last of 3 doses of Taxol. I wore a wig for 13 months in total. I don`t have permanent hair loss but my hair is considerably thinner than pre chemotherapy and I have a "bald male" pattern of thinness. I previously had a very thick head of hair and was always asking the hairdresser to thin it out. I can no longer go out on a Summers day without a hat.

I did find the hair loss very difficult to cope with at times, and I really do sympathise with those of you who have permanent hair loss. It really is a devastatingly difficult situation to cope with. 

Interesting - and helpful thread 

Fighter_34

My hair came back okay but my eyelashes and eyebrows is another story. Very sparse, but I am holding out to see what will happen before I start doing anything about it.

DoubleWhammy

The small amount of my hair that did return is not fit for public viewing and this is 20 months after my last chemo with Taxotere and Cytoxin.  I cannot go out with out a wig or hat. It's really awful.  I recently had a scalp biopsy which showed I do have follicles, but very few.  Didn't need a biopsy to tell us that!  I've had the thyroid test, iron test, and autoimmune test.  all is normal.   At the recommendation of the dematologist, I've started on the male extra strength Rogaine.  Only been 11 days, so it will be quite a while to know if it sprouted anything new.  I'm aiming for Labor Day as the deadline for the appearance of new hair.  After that, I figure I willl have tried everything and will learn to live with being bald.   

My eyelashes are very sparse.  Without mascara I don't look like I have any, with mascara, they just look puny.   I've had permanent eyeliner and eyebrows done.  Hair is sparse everywhere, but I have enough to still have to shave my legs! 

It does happen, this permanent hair loss thing, but they don't warn us at all and then they act like this is the first time they've heard of it.   My primary care physician says that hair stem cells were killed by the chemo.  Everyone else just shrugs their shoulders!

jancie

((((( Hugs )))))  It was another thread here on BCO about taxotere causing permanent hair loss in some women that I refused to have it and told my onc that I would stick with Taxol even though I was in great pain.

I thank you for getting the message out to the other women as this was a SE that my oncologist NEVER mentioned.

mrsnjband

It took a long time for me to get a full head of hair but it is much thinner that before Taxotere.  I had 3.5 doses.  The 1.5 about killed me (just whining).  Taxotere made me sicker that AC or Taxol. Never again will I take that nasty drug

A year out from chemo I barely had 1 inch long hair. My avatar pic is at this time.  it looks good in the pic but the hair dresser spent a long time trying to make it look good. It was taken at our sons wedding.  My hair came in from the bottom up, the crown is thinner that the rest but at least I have some hair.

 I have sparce eyebrows & very few eye lashes.  Loosing these were my last piece of dignity & to not get them back has been hard.  I have to use any eyebrow pencil on the brows.  I hate not having lashing.  My eyes water terribly in the wind. I try my best to not let it bother me but I am a little self conscience about it.

iamever

Oh my goodness, you all sound just like me!  I am convinced the taxotere is the culprit!  I urge you all to have your doctors file an adverse reaction report with Sanofi-Aventis (the drug company that makes taxotere).  I sent Sanofi an email complaining about the side effects of taxotere and they sent me the form which I gave to my doctor to sign and file with FDA and Sanofi. No apology or admission of guilt, but just a canned response that indicates hair returns in most cases. I think this is a wider spread problem than Sanofi will admit and they are ignoring it.  $$$$$$$ is the most important thing to them.  It has been four and a half years for me. Of course, I now have local recurrence and am currently undergoing chemo treatments for that so it will be interesting to see what effect that has on my hair.  Before this latest diagnosis, I had a monk-muff, male-pattern-baldness look with very thin fine hair. I have no eyelashes, no brows, no body hair anywhere. Brow tattooes (done two years ago)  help me feel 'somewhat' normal, but the permanent eyeliner did not take (because of the chemo, according to the makeup artist who did my permanent makeup)  There are other women who have experienced this. There is a site  where like women 'gather' so to speak and all of whom had taxotere and are left with permanent hair loss and thinning. I know I can't name the site here or they will remove my post, but you can easily find it with searches.  It's easy for people with hair to say "wear a wig" or "better to be alive without hair than dead with hair" but I think there are other alternatives.  When I got my recent diagnosis, I told my oncologist I would fire him if he even suggested Taxotere as a treatment. Needless to say, he didn't and my regimen this time is much more tolerable. All I can say is God Bless You All. I feel your pain and understand what you are going through.   

iamever

Jancie - GOOD for you for speaking up about the taxotere and insisting on something else.  I wish I had known before I had it.  I am happy that the message is getting out and touching people.  Breast cancer is devastating enough without having to deal with permanent hair loss and thinning.  We all need to be our own best advocates!  Reading your post made my day.  

hrf

It's interesting that my mo has finally admitted that she has several patients now with permanent hair loss/thinning etc but she attributes it to the fact that all of us have had 2 rounds of chemo....so still no admission of the Taxotere itself. My permanent eyeliner also didn't take well but the permanent brows do help me to fell more normal. But the hair loss is so devastating. People who say "wear a wig" just don't get it. 

SpecialK

I was made aware of the potential of permanent hair loss from Taxotere before I started chemo and did talk about this with my MO.  His specific experience was that one patient in his 15 years of practice did not have a return of hair on her head, and he was very willing to discuss this with me.  The potential for permanent hair loss was in the material I read provided by Sanofi-Aventis, it lists alopecia in the warnings.  My lashes and brows are thinner than before but I do have a full head of hair.

hrf

Robo47. Sorry you also have the same problem.

iamever

Sorry you have the same problem. I can sure sympathize because I live it everyday.  Oncologists and Sanofi don't address it (what do you want to bet none of them have suffered the side effect? It's easy to minimize the effects when you have a full head of hair.) The almighty buck reigns supreme. It reminds me of the Ford Pinto gas tank fiasco of the 1970's. Ford decided through a cost/benefit analysis that it would be cheaper to just pay off any claims that arose rather than address the problem. SO SAD!

Linda-n3

There are MANY SEs from taxotere, as well as the other taxanes, and because there are so many, they are just listed in the literature from the drug company, the MOs don't go through each and every one or at least the minimize the risks because they haven't personally had more than one or two patients with those SEs and just don't know what that means to us in our daily lives.  I was told I would lose ALL my body hair, and I did, but I was lucky in that it grew back, but there were days when I was so anxious because it took a long time and I knew there was a POSSIBILITY of it never coming back.  I was also aware of the possiblity of permanent peripheral neuropathy, which I DID get.  It has taken over a year for my MO to getting a report filed with the FDA, and I have asked and reminded her multiple times.  We HAVE to get these docs to do those reports!!!  Thank you for starting this thread to encourage ALL women with SEs from this drug to get them reported.  DEMAND this from your MO - and if they don't do it, start talking to your patient advocate folks.....

Here's the other thing: there are some ways that may potentially reduce risks, including cold caps - but so many of the oncs just dismiss these as "no evidence in the literature" so don't even bother to mention them unless we do.  I did not do cold caps because I didn't know about them before treatment, but I have an acquaintance who is doing them - she lost her eyebrows but not here mid-back length hair (it did thin out, but she still has more than 50% of it!!!).

What really angers me is that there are less toxic regimens, cheaper, but allegedly "less effective" - but they cannot say that one particular regimen is "less effective" for any single patient, only that out of 100 women, 5 of them would get recurrence with one regimen but 8-10 on the other... so if you are the individual in the one group, you will get recurrence with either regimen, so only 3-5 women would be better treated with the more toxic drugs.  In retrospect, I would choose a less toxic drug initially - and if the first ones don't work, you still have options. If you have toxicity with the taxanes and have recurrence, you probably cannot take them again (hair loss would probably not be considered a contraindication to more taxane therapy, but the neuropathy is).

shinning_like_me

Hey shirley!

A total hair loss is also what trigered my very close friend. And she was going through a lot of sad feelings of the ailment and depression of the hair loss. In the early time sthere was a little hair regrowth but later it all was in patches and than it was all gone. Its very irritating for a woman to see herself like that.So what we all our team of girls did was bought these beautiful human hair wigs from the www.remyhairsecrets.com and gifted her. Trust me seeing this she was more than happy ever. The looks of beautiful hair made her more confident and positive to live lively and happily. She also tried some hairstyles with the wig hair. So you know what options you have.

Miss_Mama_Bear

I have just started to lose my hair and just heard about the potential for this side effect. I have done a bit of research on this but I figured you were all knowledgeable and would already have the answers. Would I have a better chance of this not happening if I switched to Taxol now, and can I even switch now that I already started Taxotere? Are the two comparable as far as how well they treat the cancer? I am also HER2+ so I have Herceptin in my corner treating my cancer. Thanks in advance for your help and I am so very sorry that you are all going through this and so very angry that we are not told especially if there is a decent alternative to it. 

Survivorwoman

Hi Mama: your question has been on my mind too  since I have been dealing with my permanent hairloss: "should I have switched to taxol when I could have?" As far as I have read taxotere is only 1% better than taxol and as far as we know all women who did taxol got their hair back. So you have to decide on this one. However, it appears that women who got taxotere seperately from other chemos (such as carboplatin) or that they got it weekly and NOT in a dose dense regiment also got their hair back. I think you should talk to your onc asap and let them know you are aware of this horrible side effect. And let them do some research on this so that you can make an informed decision.

Miss_Mama_Bear

Thank you so very much for the info! I am due for my next dose on Wednesday. I will call on Monday and hopefully we can get something arranged. 

Another question that has been on my mind. I kind of have a scientific mind (am even considering science as a career) and it would be awesome to figure out what exactly causes this and why in some people but not others. I was pulling my hair out for awhile after it started coming loose and thought maybe that was a horrible idea. How did you deal with your hair loss? Did you shave it off or leave it long? Did you pull it out when it started falling out or leave it be? Did you shave it completely bald when it started falling out or did you just leave it covered much of the time or do nothing at all? Maybe there is a common denominator here. If no one else wants to figure it out or even admit it is happening, maybe we can collect some data here and find something. 

jancie

Survivor - the literature I have read is 6% of women will suffer permanent hair loss.  And if you go back and read the first 2 pages of this thread - I believe that same figure has been mentioned several times.

I was on Taxol and having major SE's to the point where my onco was talking to me about switching to Taxotere.  OMG - I am so thankful for this thread because I told him no way would I take taxotere.

As far as what to do when your hair falls out - that is such a personal choice.  Mine started coming out one day and I could pretty much run my hands over my scalp and handfuls would come out.  I was going to just let it fall out but within 8 hours my head was hurting so bad from the hair follicles pushing the hair out of my head that I shaved it and within 15 minutes all of that pain went away.  It was the pain as though you wore a too tight ponytail for 24 hours straight.  I used dog clippers.  I worried that I would get razor burn or skin irritation if I tried to use a regular razor.

Now when I have growth spurts of hair - my scalp feels the same way.  I always know when I am having a growth spurt because of how my scalp feels.

Miss_Mama_Bear

Mine hurt too. I actually had mine in a mohawk for the last week or so. I figured why not, and I actually liked it lol. Well, last night the long part was hurting horribly so I shaved it short too (1/2"). I just shaved all of it all the way down just a bit ago so I am just stubble now.

I am just trying to see if there is a link in what people did when thier hair started falling out and those who lost it permanently and those who got it back. That is what I was asking if that makes sense? I mean, if it were a matter of "immediately get your shaved and don't pull it out at all or you will lose it permanently", I am sure that those who HAVE to take Taxotere would really appreciate that info. Or maybe there is less incidence of permanent loss if you DON'T shave it right away. I know it would likely take years of study to put all the pieces together (and quite possibly it has nothing at all to do with anything like that and is just gene-related) but you have to start somewhere, right? And feel free to point me in the direction if there have already been studies done on it.

IngridJ

mamaStewart;

From what I can gather, the hair loss/re growth factor is nothing to do with how, or when it goes.. Mine had no painful scalp itching or anything, just came away painlessly around day 19 or day 20.. I did 4xTC. Must say, had no idea the risk of permanent hair loss was around 5%. So far, at week 7 post chemo, it appears to be growing back, but verrrrry thin and sparsely.. It was very fine anyway so....If I had known re the risk, would have tried the cold caps. The hair loss is harder than I thought.. Although, wig is good etc..

Survivorwoman

Jancie:  Sadly, I am very much aware of the statistics that taxotere may cause permanent hairloss in 6 % of women. I am painfully aware of it, as I am in that 6% . I was talking about the comparison of the two different chemos (taxol and taxotere) that there is only 1% difference. 

hrf

I wish I had known about the risk before I started the Taxotere. I would definitely have requested a different protocol.

208sandy

I also wish I had been told of the risk.  BTW the consensus is that the stem cells are damaged and that is why the hair won't grow back.

I am four years post treatment and have managed to grow my fringe long enough to be seen under ball caps and actually have a tiny ponytail for when I am around the apartment doing laundry and stuff but have to wear a wig or hat when I go anywhere and in the summer the wig is a miserable choice even though I was lucky enough to afford a really good wig it is still most uncomfortable.  Only one person has said the dreaded "but you're alive" comment - wish people would think before they open their mouths - not having hair is a huge impediment.