Taxotere and permanent hair loss????

124

Comments

  • jamaker
    jamaker Member Posts: 10
    edited August 2014

    I looked into it when I had T/C in 2011.  I read that average permanent baldness was 6%, going up to 17% for my age (69 at the time).  I got freaked out, so I used Penguin Cold Caps and didn't lose the hair on my head, although I did lose body hair. I also used ice on my fingernails and toenails during the taxotere part of the infusions, and that protected my nails.

  • LizA17
    LizA17 Member Posts: 159
    edited April 2015

    I never had any problems with my nails. I never got eyebrows back and my scalp hair is very spotty. More bald than hair growing. Still in a wig and have about accepted the fact I always will be. What a cruel side effect.

  • Angelam
    Angelam Member Posts: 13
    edited April 2015

    Jennt28 Do you have this documentation? It is not well documented in the US and we are working with the FDA to change this....

  • MaryJC
    MaryJC Member Posts: 350
    edited May 2015

    I've read on another site/thread a lady saying she didn't get her hair for 2 years and thought that was it. But she started using a product by Aveda (she didn't name the specific one), Biotin, Silica and Biocil and her hair is now growing! Other posters on that thread mentioned TIPA being associated with thyroid levels and getting some specific ones checked. Here's a screen shot of her post.

    Meanwhile I had my last TC 3 weeks ago and am so anxious to have my hair grow back. I just wanna know that it will. I feel like the few stray hairs I still had have grown. I thought I'd at least have peach fuzz by now.

    image

  • MaryJC
    MaryJC Member Posts: 350
    edited May 2015

    oops! I said 2 years, it's was after 7 years

  • lago
    lago Member Posts: 17,186
    edited May 2015

    Mary 3 PFC weeks isn't enough time. That's you're typical cycle. You need to give it much more time.

  • MaryJC
    MaryJC Member Posts: 350
    edited May 2015

    thanks lago- I need to manage my expectations. How long until the chemo is out of your system? Is that when it starts growing?

    I mention the 3 weeks bec this site says hair will start growing in 3 weeks which sounds soon and not everyone's experience from what I read. Thanks again!

    BTW how are you doing overall

  • lago
    lago Member Posts: 17,186
    edited May 2015

    When hair starts growing it starts below the scalp so you won't see it at first. Granted some of us had hair start growing before we ended chemo. Thing is everyone is different.

    Not sure how long before chemo is out of your system but given you are on 3 weeks cycles it's probably close. Granted it takes your body a longer time to recovery. Hair is one of the things that grows fast but it also grows in cycles. So it will take a bit.

    I'm doing great. Almost 5 years NED (August 31st this year). Thanks for asking.

  • MaryJC
    MaryJC Member Posts: 350
    edited May 2015

    awesome, congratulations on your anniversary! May you have hundreds more!!!

    Sigh... I'm so nervous. Seems like the strays I had that never fell out are growing. I noticed stubble on my legs. I pray that suggests my scalp will soon follow. Today makes 4 weeks pfc

  • lago
    lago Member Posts: 17,186
    edited May 2015

    Still very early. I wasn't even looking the first month.

  • Lorbgoo
    Lorbgoo Member Posts: 213
    edited May 2015

    imageoone year past TC! Head full of hair.

  • lago
    lago Member Posts: 17,186
    edited May 2015

    Rose are you on an AI? That looks like it could be caused by an AI. Many women have had hair thinning issues on the AIs. Some worse than yours. My understanding of taxotere induced alopecia is that if you do have hair on the top of your head it won't grow longer than 1.5"- 2"

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited May 2015

    I had severe allergic reaction to Taxotere. My hair is thin like yours Rose, has grown to several inches. I'm also on arimadex. Body hair, lashes, brows not as much as before T.

  • MaryJC
    MaryJC Member Posts: 350
    edited May 2015

    hi rose, I know you're sad about your hair but from what I can see it does look pretty. Do you go to a stylist? Maybe she can style it in a way to hide your thin spots since it seems like mostly the crown. Have you tried any of the tricks the other ladies have used?

    BTW- this is for everyone having taxotere issues, saw this on another message board and did a screen grab. Pardon me if I posted already, my chemo brain may be kicking inimage

  • MaryJC
    MaryJC Member Posts: 350
    edited May 2015

    ok that's valuable info too but not the screen grab I was looking for. Here it is

    image

  • Spookiesmom
    Spookiesmom Member Posts: 9,568
    edited May 2015

    All my MO said was I WOULD loose my hair. None of it has come back as before. Imsure it's the Taxotere.

  • MaryJC
    MaryJC Member Posts: 350
    edited May 2015

    Rose50, did u lose all hair, head and body? If so when you had the biopsy done, was it on your body hair too? I ask bec I'm curious if it damages all hair follicles of just head hair? In any event I'm very sorry you've spent so much $ and to no avail. I heard inklings of a class action suit. I def pray you get some of your money returned to you. I pray anyone with perm hair loss gets compensated for pain and damages.

  • taxoteremademebald
    taxoteremademebald Member Posts: 16
    edited June 2015

    I am still bald two years after taxotere at age 33. Our online group has a lot of women that this has happened to and we get new members every month. Everyone is the same, thick beautiful hair before taxotere and severe male pattern baldness usually with loss of eyebrows and eyelashes after taxotere. Some of the women in our group are 10 years out and are still bald. We did our own online survey and the one thing we all have in common was taxotere. The risk of this happening appears to be between 2 and 6%. That is huge for something that makes you permanently deformed in a very public and inescapable way. If this has happened to you please let the FDA know and make sure to put permanent in your report. Please also contact Sanofi to let them know.

  • MaryJC
    MaryJC Member Posts: 350
    edited June 2015

    hi taxoteremad, what is the link to your on line group? I've read that another commonality is having loss all body hair. You mentioned losing lashes brows. Are both the case? Thanks again!

  • Stormynyte
    Stormynyte Member Posts: 650
    edited June 2015

    Hello everyone! I've been MIA for about a year or so, but seen this thread was still active and thought I would update as it's been quite a while since I had chemo. I had total hair loss, I mean, all my hair, everywhere. Never thought I would miss nose hairs. Not having to shave was awesome tho. Nose hairs seem to be normal now, but brows, lashes and body hair are patchy and thin, as well as my hair hair. It's very thin and showing no signs of getting any thicker. It is growing well, past my shoulders now, but still very fine and thin. Before I had lots of thick hair, couldn't see my scalp other than in my part. Now most of the front has very visible scalp. I was hopeful it would thicken up over time, but it's not looking like thats going to happen. :(

  • Sunny_Girl
    Sunny_Girl Member Posts: 111
    edited June 2015

    Hi Stormynite,

    I'm two + years out & on Armidex (taxotere, carboplatin & herceptin x 1 year). I have hair on my head that is now thin & fine. Thin/thin eyebrows & really not many eyelashes left. They are short & blond (I used to have thick, full coarse hair). Male pattern hair issues as well.

    I was unsure if it was the Taxotere or the Arimidex. It's a new me, but it's also a reminder of what I went through & what I'm going through with the Arimidex.

    Wish you well -

  • Momine
    Momine Member Posts: 7,859
    edited June 2015

    m4, I had total hair loss during taxotere treatment. However, all my hair is back. The only permanent effect is that my eyelashes seem a bit thinner than before. Permanent hair loss can happen, but it is a rare SE.

  • lago
    lago Member Posts: 17,186
    edited June 2015

    SunnyGirl that does sound like the Arimidex. Have you tried Minoxidil. It seems to be working for me. Keeping the receding at bay. I also took a 1 month vacation before I switched to Exemestane (Aromasin). Many of my lashes grew back. Brows are on the thin side but I actually brush a little Minoxidil on them too. Be careful not to get in your eyes.

    Stormynyte That sucks. I know 2 other people who had this happen. Ironically they too had really thick hair.

  • MaryJC
    MaryJC Member Posts: 350
    edited June 2015

    hi ladies, I think I posted earlier a screen shot of blood work for thyroid. It's not regular thyroid blood work, you have to request it. It's T3 and two others I'll have to find and re-post the info. This bloodwork is said to not always be taken when testing for normal thyroid function bec it doesn't have a large impact on health if off. BUT in this case, the taxotere does interact with it n cause perm hair loss. I've read other ladies say that they got it checked, it was off and once back on their hair grew back! It's worth a try!!

  • MaryJC
    MaryJC Member Posts: 350
    edited June 2015

    Hi Rose, wow I'm so sorry. I'm just such a big person of hope and was hoping this was an option. I now recall reading about the scalp biopsy. I also read of a class action suit which I think is very appropriate! Hugs to all

  • angie231775
    angie231775 Member Posts: 13
    edited July 2015

    I finished Taxotere / Carbo March 5th 2014 and my hair is still so thin on top I look like a balding man. Any ideas of what I can use to help? I'm so desperate I'm about to pay 1000's for a transplant! Please help!

  • Superbody
    Superbody Member Posts: 17
    edited November 2015

    Hi all, I spent the last hour reading this thread since I too have been affected with post-chemo thin and stunted hair growth. I first had Taxol (did not shrink tumor), so onc switched to Taxotere/Carboplatin for 6 rounds. My last chemo was Feb. 3, 2014 and yesterday (21 months later) had my first real hair cut (she only cut 1.5 inches from back) because I was getting a mullet look - only 2 inch growth on top while long in back.

    My new hair is much thinner overall; I definitely have a balding crown and very thin spots on top with little growth. I was hoping to grow my hair long like before but it's too thin and looks awful so I cut it above chin length. I am somewhat lucky I have some curl that gives it a slight illusionary volume. I call my hair cotton candy cuz it's so fine yet it looks like I have more than what I truly have because of some curl.

    I've considered a hair transplant to the balding crown and thin top but since I'm not 5 years out (fearing recurrence) the hair dr advised against it. Another hair dr advised Platelet Rich Plasma therapy (PRP) but my onc advised against it since I could develop antibodies. Has anybody done PRP? It's seems promising but I can't find enough info for cancer survivors.

    I'm taking 10,000 mcg biotin and Vit E with some little effect. I'm now considering Rogaine but hate the thought of taking it for life (?). Not sure if I'm ready to take that plunge. Like everyone else, I had great hair pre-chemo and didn't really get bothered being bald thinking I'd get it back. Not fair my onc didn't give me warning or even offer the idea of a cold-cap which I had no idea about. I'm a single 44 yr old and my stylist says my hair feels like a 70 yr old. :(

  • shoppygirl
    shoppygirl Member Posts: 694
    edited November 2015

    My hair never grew back properly. It is very thin especially in the front. Before breast cancer treatment I had a shoulder legenth bob with bangs. I feel very unattractive without hair on my forehead. This is why I now wear a clip in piece of human hair that allows me to have thestyle I want. It blends perfectly in to my natural hair and I feel so much better about myself with it on. It is surprisingly comfortable and when I don't feel like wearing it, I wear a fashion hat . What ever it takes to look normal again!

  • BlownOffCourse
    BlownOffCourse Member Posts: 37
    edited November 2015

    Rose50 - when I go to the aheadofourtime site all I see are a few posts from a few years ago. Do you have a link that you could post where others connect, maybe to the FB page as well?

    I'd love to find others who are going through the same thing. None of my doctors have even acknowledged that there's a problem. They keep saying give it time :(

  • BlownOffCourse
    BlownOffCourse Member Posts: 37
    edited November 2015

    Thank you, Rose. I will do that!

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