taxotere and permanent hair loss

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  • okblessed
    okblessed Member Posts: 92
    edited July 2011

    Hi Carol - Glad to hear from you.  I will check out the natural line Phtologee, thank you so much for the information.  Remember that you might want to keep your nails short and use a strengthener that 'soaks' into the nail while on taxotere. 

    Please keep in touch and let us know how you are doing.  I know you can beat this thing and taxotere is a blessing. We can deal with whateve side effects come along. Have a wonderful, happy stress free week!

    Pam in Oklahoma

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  • heatherpalmerton
    heatherpalmerton Member Posts: 2,247
    edited July 2008

    Hi Pam Its been awhile And yes my hair has thinned quite a bit. It has been very hot here in Klamath falls, Oregon. I don't know about you but my head seems to sweat more. Go figure???

    Carol that sounds very promising and I'ts natural. I will check that out. Thanks

    Also while on Taxotere I have been using tea tree oil and a clear polish without formaldihyde. seems to be doing the trick of saving nails. Heather 

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  • okblessed
    okblessed Member Posts: 92
    edited July 2011

    Hello Heather - great to hear from you!

    I now have a full head of fuzz [thanks to the minoxidil + retinA - i think!] but am still wearing hot wig in Oklahoma steamy heat.  Hopefully this time next year I will have hair.  Really good tip on the tea tree oil and clear polish.  Glad we are able to share tips with others going through same.  Remember to keep them short also so they don't get 'bumped' and knocked loose from the nailbed.  I go back for a mammogram this month and so am a bit anxious --- also, still trying to lose the weight but trying the Hallelujah diet - alternating with the Cabbage Soup diet - working great for my sister but she is more strict with it than I am.  I have so many work lunches that I slip frequently.  It is always so good to hear from everyone - we just keep plugging along! moving forward - getting healthy!

    Gid bless and strengthen each of you.

    Pam

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  • JWallace
    JWallace Member Posts: 33
    edited July 2008

    This is scary...

    My mom was told that she could be put on Taxotrene and Carboplatin....can someone give me more information on the two???? 

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  • janet11
    janet11 Member Posts: 262
    edited July 2008

    I lost much of my hair from TCH (Taxotere, Carboplatin, Herceptin).  I finished the Taxotere in January 2007, so it's been 18 months and here is what I have now:  http://mysite.verizon.net/wb9zph/hair/

     My hair is very thin and fine.... and it's easy to see the scalp through it. I've tried Rogaine (easier to spell than min*) and other things.  And i've learned that this happens sometimes.  It amazes me that some people treat the idea of going on chemo so lightly -- without realizing that they can cause permanent side effects.

     I simply figure that at least my cancer hasn't returned, so it was worth it.  

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  • okblessed
    okblessed Member Posts: 92
    edited July 2011

    Hello Janet!

    We can certainly celebrate that the cancer has not returned! 

    My birthday is this Friday - my first after the initial diagnosis + one year to live.  So I every reason to celebrateCool.

    My hair is very fine fuzz but with the mixture of minoxidil + retin A there is 'fill-in' where there was only shiny, bald scalp before.  I made a committment to try this for 3 months and I can certainly see a difference - now month two.  Not sure if or when it would be enough to not wear a wig but it is worth the try when Oklahoma has a heat index of 105 today [I need hope!].

    Please keep us posted as others of you have hair 'regrowth'!

    Have a wonderful and blessed day.

    Pam

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  • rak
    rak Member Posts: 15
    edited August 2008

    I've been an oncology nurse for 25 years and have never heard of permanent hair loss form ANY chemo.  Radiation to the brain can cause permanent hair loss, however.  I am currently receiving taxotere and carbo (received #1 15 days ago) and my hair is just starting to fall out.  I'm a little freaked out right now.  I hope to God this isn't permanent!!  Anyone else out there post- taxotere who can give some feedback?  Rose

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  • dhettish
    dhettish Member Posts: 501
    edited August 2008

    Hi Rose,

    I finished Taoxtere on 3/12/08 and I have hair. I was freaked out because the crown and part took forever to come in. I had cancer 22 years ago and took Adriamycin, DTIC, and Cisplatin and by 7 months, I was getting my hair cut. That is not happening now. My hair is thick and completely covers my head but it is taking a loooonnnnggg time to grow. My eyebrows began growing back but I still have bald spots which cover well with a pencil. My eyelashes are still very short and I don't want to mess them up with mascara.

    I had every SE that Taxotere could dish out to the max. I loss my sense of taste and lived on banana popsicles and still gained 27 lbs from fluid. I had a "moon" face and could barely bend my arms because they were so swollen. My ankles looked like elephant feet. I had extremely bad leg pains, excessive eye tearing, extreme fatigue and shortness of breath. My onc said she had never seen someone so bad and wanted to stop tx. But I am triple negative and said "No". Oh, I also had my nails loosen from the bed but I never did loose any of them.

    Most don't get the extreme SE that I had. But by 6 weeks, most of them were gone. I still suffer from mild shortness of breath and some fatigue. I just can't go like I used to. Naps are a part of my day most of the time.

    I am positive your hair will come back. It just may take a little longer. I think age has something to do with it as well. I just turned 50 in June. The funny thing is my underarm hair is even slower. I only have to shave about every 10 days. That is a blessing. My leg hair is another story. Five o-clock shadow by 3PM. One more shock. I always colored my hair so I did not realize that I was really grey! These wispy white hairs grew first, then the dark brownish black hairs started coming in. Right now, I am dying to color my hair (no pun intended).

    I have never known anyone whose hair did not come back either. I was worried I would be on of those but no....I have thick short hair. But I have hair!

    Debbie 

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  • okblessed
    okblessed Member Posts: 92
    edited July 2011

    Hi Debbie & Rose - my chemo ended a YEAR AGO in May and my hair is just now beginning to cover my scalp and is mostly the white downy fuzz with some dark patches of real hair returning.

    I truly believe that the mixture of minoxidil and retin A have made it start to return.  When it didn't come back 8 months after treatment ended my oncologist sent me to a dermatologist who prescribed minoxidil - didn't help the slick spots on top.  I did internet research and tried Dr. Lowenbrau's [sp?] formula and within a few weeks my head started peeling [like a sunburn' and little hairs started popping through.  Right now - 15 months later it is about a 1/4 inch on top.  I highly recommend you try the mixture - you can read the research on how the different mixtures interact to make hair grow.

    My oncologist also had never heard of hair not returning [i.e. reason i started this topic].  He has now had two other patients with similar extreme reactions with nail loss, skin burns and no hair return.

    Does anyone have any suggestions on getting the weight off?  I still tire out very easily but am concerned about getting the weight off to decrease reoccurence chances.  I too gain 42 pounds propbably because I could not swallow anything but shakes for months.

    Good news - I just had my 2nd '3 month mammogram' and ALL CLEAR! Taxotere is rough but must be working.

    Thank you all for sharing your experiences. I appreciate each of you!

    Blessed in Oklahoma.

    Pam

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  • dhettish
    dhettish Member Posts: 501
    edited August 2008

    Oh Gosh Pam, I am so sorry about your hair loss. Truly, I have not known anyone who had permanant hair loss. I am glad your are getting the "wispy's". My real hair followed after that. It took about 4 months for me to loose my bald spot. I have a picture of me and my girlfriend who was going through throat cancer. I finished my chemo 2 months before her. She has a full head of hair and I had male pattern baldness. I wish I would have gotten a picture of me and my husband. He is bald. It would have been too funny....now that I have my hair back. Congrats on your clean mammo! 

    The only thing that worked for me in getting weight off is Weight Watchers and exercise. So, since I cannot exercise now, I am trying to just stay stable on my weight. I liked WW online. It was cheaper and taught me a lot about eating habits. With WW you lose about 2 lbs a week which is safer. I was wondering about Alli? Has anyone tried that. I know you still have to diet and exercise but does the weight come off faster? 3 lbs a week would be great. I just need to loose about 20 lbs and firm up what I have. Once I got off T, I lost the 27 lbs of fluid but still had the weight from the steroids where I ate and ate and ate. That is not coming off.

    Debbie 

    Debbie 

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  • shirleyl
    shirleyl Member Posts: 167
    edited November 2008

    Hi, am posting from France. I posted on here afew weeks ago but it never apeared.

    I finished Taxotere in Jan 2006 and i still have no hair. My onc reported it after a few months and they told him yes it does sometimes happen, but very rarely, i was only the 4th women in the world for it to happen to. I dont believe this at all.

    The more this drug is used the more women will have to cope with this disfigurment. 

    ADMIN - help. Since i have posted this reply the post made afew months ago has suddenly started appearing several times! 

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  • shirleyl
    shirleyl Member Posts: 167
    edited November 2008

    Hi, i finshed Taxotere amost 3 years ago and have been told this drug has made me permently bald. i am gutted and feel very disfigured apoart from all the other everyday problems i have with this.

    I have written to the makers of this drug with my oncs blessing and they replied sorry its happened but we will not keep you in wigs for the rest of your life. I am sorry but that will just not do. If i had the money i would sue them for non discolsure and they are still not delaring it. my onc has informed me afew weeks ago that sinse he declared my problem there are cases all over the world of it happening.

    We need to do something 

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  • shirleyl
    shirleyl Member Posts: 167
    edited November 2008

    Hi, i finshed Taxotere amost 3 years ago and have been told this drug has made me permently bald. i am gutted and feel very disfigured apoart from all the other everyday problems i have with this.

    I have written to the makers of this drug with my oncs blessing and they replied sorry its happened but we will not keep you in wigs for the rest of your life. I am sorry but that will just not do. If i had the money i would sue them for non discolsure and they are still not delaring it. my onc has informed me afew weeks ago that sinse he declared my problem there are cases all over the world of it happening.

    We need to do something 

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  • shirleyl
    shirleyl Member Posts: 167
    edited November 2008

    Hi, i finshed Taxotere amost 3 years ago and have been told this drug has made me permently bald. i am gutted and feel very disfigured apoart from all the other everyday problems i have with this.

    I have written to the makers of this drug with my oncs blessing and they replied sorry its happened but we will not keep you in wigs for the rest of your life. I am sorry but that will just not do. If i had the money i would sue them for non discolsure and they are still not delaring it. my onc has informed me afew weeks ago that sinse he declared my problem there are cases all over the world of it happening.

    We need to do something 

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  • shirleyl
    shirleyl Member Posts: 167
    edited November 2008

    Hi, i finshed Taxotere amost 3 years ago and have been told this drug has made me permently bald. i am gutted and feel very disfigured apoart from all the other everyday problems i have with this.

    I have written to the makers of this drug with my oncs blessing and they replied sorry its happened but we will not keep you in wigs for the rest of your life. I am sorry but that will just not do. If i had the money i would sue them for non discolsure and they are still not delaring it. my onc has informed me afew weeks ago that sinse he declared my problem there are cases all over the world of it happening.

    We need to do something 

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  • shirleyl
    shirleyl Member Posts: 167
    edited November 2008

    Hi, i finshed Taxotere amost 3 years ago and have been told this drug has made me permently bald. i am gutted and feel very disfigured apoart from all the other everyday problems i have with this.

    I have written to the makers of this drug with my oncs blessing and they replied sorry its happened but we will not keep you in wigs for the rest of your life. I am sorry but that will just not do. If i had the money i would sue them for non discolsure and they are still not delaring it. my onc has informed me afew weeks ago that sinse he declared my problem there are cases all over the world of it happening.

    We need to do something 

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  • BMac
    BMac Member Posts: 650
    edited November 2008

    I finished Taxotere in March.  I am still on Herceptin and am blaming the slow hair growth on Herceptin but maybe Tax is contributing too.  I had ovarian cancer 6 years ago and finished chemo in March 03 and I know that at this point I had more hair; i.e. longer.  I currently have a good head of hair as far as thickness is concerned; it just isn't as long as it should be.  I'm hoping once I'm off the Herceptin it will grow faster.  This is what I've heard happens.

    My heart goes out to those of you who are not getting your hair back.  This is so unfair after everything you've been through.

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  • shirleyl
    shirleyl Member Posts: 167
    edited November 2008

    Hi, i finshed Taxotere amost 3 years ago and have been told this drug has made me permently bald. i am gutted and feel very disfigured apoart from all the other everyday problems i have with this.

    I have written to the makers of this drug with my oncs blessing and they replied sorry its happened but we will not keep you in wigs for the rest of your life. I am sorry but that will just not do. If i had the money i would sue them for non discolsure and they are still not delaring it. my onc has informed me afew weeks ago that sinse he declared my problem there are cases all over the world of it happening.

    We need to do something 

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  • shirleyl
    shirleyl Member Posts: 167
    edited November 2008

    ADMIN, are you there??????  my old post keeps reapearing everyday? you obviously have some tech prob.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2008

    Ya know, I never connected my slow hair growth to taxotere.  I finished chemo December 05 and didnt even see fuzz until April.  I had very thick hair.  It had a curl to it, so I could wear it straight or squish it and make it curly.  I have a widows peak and my crown was the last to come in.  So here I am 3 years later and my hair finially has some length but is still think and baby fine.  If I try to put a barette in, you can see bald spots.  It's growing back but very slowly.

    shirleyl:   send the moderators a pm and let them know whats going on.  That usually works the quickest.

    Nicki 

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  • shirleyl
    shirleyl Member Posts: 167
    edited December 2008

    Hi, i finshed Taxotere amost 3 years ago and have been told this drug has made me permently bald. i am gutted and feel very disfigured apoart from all the other everyday problems i have with this.

    I have written to the makers of this drug with my oncs blessing and they replied sorry its happened but we will not keep you in wigs for the rest of your life. I am sorry but that will just not do. If i had the money i would sue them for non discolsure and they are still not delaring it. my onc has informed me afew weeks ago that sinse he declared my problem there are cases all over the world of it happening.

    We need to do something 

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  • shirleyl
    shirleyl Member Posts: 167
    edited December 2008

    Nicki, i already emailed them afew days ago!

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  • shirleyl
    shirleyl Member Posts: 167
    edited December 2008

    Hi, i finshed Taxotere amost 3 years ago and have been told this drug has made me permently bald. i am gutted and feel very disfigured apoart from all the other everyday problems i have with this.

    I have written to the makers of this drug with my oncs blessing and they replied sorry its happened but we will not keep you in wigs for the rest of your life. I am sorry but that will just not do. If i had the money i would sue them for non discolsure and they are still not delaring it. my onc has informed me afew weeks ago that sinse he declared my problem there are cases all over the world of it happening.

    We need to do something 

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  • shirleyl
    shirleyl Member Posts: 167
    edited December 2008
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  • enjoylife
    enjoylife Member Posts: 578
    edited December 2008

    I took Taxotore for 6 treatments and i am 13 weeks out of chemo and I am getting black fuzzy hair in and I have never been told it wont come back it is slow but it will come back so dont be afraid anyone I am the first person to tell you I have missed my hair but I have all hope its coming back and by spring I will be a head full of hair and a sexy 57 year old with a new TA TA. There are side effects with any meds anyone takes but keep the faith that you are better and it will be better your hair then before....

    Maura...

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  • enjoylife
    enjoylife Member Posts: 578
    edited December 2008

    I took Taxotore for 6 treatments and i am 13 weeks out of chemo and I am getting black fuzzy hair in and I have never been told it wont come back it is slow but it will come back so dont be afraid anyone I am the first person to tell you I have missed my hair but I have all hope its coming back and by spring I will be a head full of hair and a sexy 57 year old with a new TA TA. There are side effects with any meds anyone takes but keep the faith that you are better and it will be better your hair then before....

    Maura...

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  • carol1949
    carol1949 Member Posts: 562
    edited December 2008

    Certainly, if it is truly the Taxotere I would check into what ever information you can find.  I did see some information regarding possible permanent hair loss.  However, there are so many things that can cause hair loss not the least of which is trauma and/or stress which we all have.

    I also recommend for you to have your thyroid checked and also listen to your body.  It seems that blood tests are considered the least accurate measure of thyroid disease.  Take your temperature under your arm, daily before getting out of bed.  If you run a low temp... chances are you have thyroid issues.  Unfortunately, the chemo as well as the rads can destroy the thyroid.

    I have had thin hair for years and strangely, since chemo, mine appears to be coming in thicker.  A product I have had wonderful results from is Phyto products from France.  You can Google them and read about their hair growth program on line.  It is a plant based product, unlike Nioxin which is full of chemicals.

    Best of luck and if you have any questions regarding the Phyto, I would be glad to answer as much as I know.  I am a hairstylist since 1968!

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  • ShellyJo
    ShellyJo Member Posts: 132
    edited December 2008

    I had 6 treatments of TAC..hair is growing back full and lush..Takes about 6 weeks before any noticeable growth starts. Everyone is different. But the Taxotere killed 99% of my cancer. I only had a few non invasive cells left that were undetectable by MRI..so GO TAX!!

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  • shirleyl
    shirleyl Member Posts: 167
    edited December 2008

    Hi, i finshed Taxotere amost 3 years ago and have been told this drug has made me permently bald. i am gutted and feel very disfigured apoart from all the other everyday problems i have with this.

    I have written to the makers of this drug with my oncs blessing and they replied sorry its happened but we will not keep you in wigs for the rest of your life. I am sorry but that will just not do. If i had the money i would sue them for non discolsure and they are still not delaring it. my onc has informed me afew weeks ago that sinse he declared my problem there are cases all over the world of it happening.

    We need to do something 

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  • shirleyl
    shirleyl Member Posts: 167
    edited December 2008

    Maura, i am glad your hair is coming back, but i am afraid you can no long tell people it definatly will come back as more and more cases of permanant baldness due to Taxotere are being reported. the more this drug is used the more those figure will go up, so you are wrong to tell people not to worry and it will return. It may do but it may not. We should have these facts given to us. As for your onc not telling you, oncologists need to keep up to date with latest figure and yours obvioulsy is not.If he cares to read the latest info from the makers of tax they admit it themselves that it could happen. If anyone would like i can email you the letter written to me my the makers telling me that 'yes' it can happne. Its in French but you can give it to your oncs and they will be better informed about the possible side effects.

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