taxotere and permanent hair loss

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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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  • Onehalf
    Onehalf Member Posts: 171
    edited December 2008

    Shirley-

    I seen my oncologist today and mention what Iread on here.....Her response was that in all her years she has only seen on other women that had no hair regrowth. She did mention this was not common....she asked me how I felt, I explianed that I was too far into the game to make any changes, and we did talk about my choices of Chemo why and why not. My onologist did reassure me that she felt I would not have any problem on my hair growing...she also let me know that this was not something she was just saying to make me feel better,

    Soooooo at this point I will stick with what I am doing ( I only have one more treatment left) And then I will hope for the best.

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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

    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

    I am sure your hair will grow back.

    I was also told my hair would def come back too. My hair started growing back after the 2nd tax but after the 3rd every bit came out and the rest is history.

    The more tax is used the more women will be left permantly bald.

    Oncologist cant possibly know if it will have this effect on you or not so them being 'sure' is the same as saying maybe it will but maybe it wont.

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  • shirleyl
    shirleyl Member Posts: 167
    edited December 2008

    < What does one have to do around here to get the attention of admin?

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  • shirleyl
    shirleyl Member Posts: 167
    edited December 2008

    Hi,

    admin ??????
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  • okblessed
    okblessed Member Posts: 92
    edited July 2011

    Hi Shirley - I missed the broadcast so don't know if they answered my question or not - they did not respond to me by email.

    My oncologist, Dr Jess Armor, Mercy Hospital, Oklahoma City, OK can also confirm my '2-year-to-date' total hair loss.  He also sent me to a dermatologist who was unable to offer any suggestions other than minoxidil.

    Maybe you should have asked a 'posting keeps haunting me' question rather than the 'where is our hair' question --- we might have been afforded a response:)

    I want to wish everyone a very Merry Little Christmas - this is my second one that I am 'more than blessed' to have --- but I am once again, still, asking for hair!

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  • mary6204
    mary6204 Member Posts: 373
    edited December 2008

    I'm sorry that happened to you.  I didn't realize it was a possiblity.  I've made a few friends who had taxotere like me and we all have hair coming in.  I had my last tx 5-1/2 months ago and I have an extremely thick (although still short) head of hair coming in. I wish you the best, but I'm happy your still around!!  Mary

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  • okblessed
    okblessed Member Posts: 92
    edited July 2011

    thank you mary - when i look around at all the loses other people have i try and put my 'hairloss' into perspective and use my sense of humor ...

    whenever i went to the hairdresser before 'bc' - i was always told i had enough hair for three people - so now i just tell myself that those three people must have come and taken their share because now all that is left up there is what looks like lint from the dryer door

    thank you to everyone for your kindness and support for one another.  this side effect absolutely does not effect everyone - but for those of us that it has, we just need to form our own little club and find ways to make ourselves feel feminine, sexy, pretty --- whatever it is we feel we are missing.  women are amazingly creative and i am sure that we can figure out ways to lift one another up from hair-dispair.  i am thinking about using a magic marker on the bathroom mirror to draw some hair so that when i am brushing my teeth i can remember what it was like to just have a 'bad hair day' --- :)

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  • Onehalf
    Onehalf Member Posts: 171
    edited December 2008

    okblessed

    I love your mirror idea....great sense of humor. Sometimes that is more needed then anything else! You keep going girl!

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  • shirleyl
    shirleyl Member Posts: 167
    edited December 2008

    They probly didnt asnwer my question either ! 

    We are like hot potatoes :-)  and look like them too.

    Yes, i too am so happy to be alive this christmas also my hair is on the top of my list. 

    In Jan its will be 3 years since i finished tax and had no hair - i was only 47 at the time, impossible to feel sexy or femanine (i feel like a man) and i wont except my hair loss ever, i also dont want to except it - how are you expected to move on when every time i look in the mirrow there is 'chemo face' looking back at me.

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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

    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

    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

    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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  • kfeustel
    kfeustel Member Posts: 2
    edited December 2008

    My last Taxotere was on November 12th and I was starting to be concerned about my hair regrowth.  I only had 3 treatments but I had hoped I would see more than just fuzz coming back in patches.  I also had a full thick hear of hair before my chemo treatments and am just a little anxious to see at least some hair on my head.

    Maybe it is still too soon but I really don't want to wear a wig for the rest of my life.

    If anyone who had hair come back would let me know how long after their last treatment they started seeing some regrowth please let me know.

    Thank you all and have a Happy New Year.

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  • mumito
    mumito Member Posts: 4,562
    edited December 2008

    My last tax treatment was mid oct.I'm 49 years old and have 1inch of growth covering my head but it came in mostly grey.  Even sign of life in the eyebrows and lashes.  It may seem slow but hang in there.

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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

    Hi, I have had a look for the transcript but cant find it any where - can someone point me in the right direction please. Thnaks

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  • mumito
    mumito Member Posts: 4,562
    edited December 2008

    I see there is a bunch of us up so early this morning. I would like to wish you al a happy and healthier new year.

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  • kfeustel
    kfeustel Member Posts: 2
    edited December 2008

    Thank you mumayan, your response gives me some hope.  I am 58 and had red hair w/grey so I guess I'll see what color it is when it reappears.  I never did loose my eyebrows but my eyelashes got real thin but still enough to put mascara on.

    Again thanks for the hope.

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

    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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  • moonwolf
    moonwolf Member Posts: 130
    edited January 2009

    okblessed

    So sorry to hear of your problems.  I am due to start Taxotere next week and after reading this forum am really put off.

    Did you experience all of the side effects after your first dose?  Were you on a high dose?

    Thanks.

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  • okblessed
    okblessed Member Posts: 92
    edited January 2009

    Hi - yes but i was about to die - had less than a year to live

    after the first dose i had extreme reactions - was given second dose - body looked like a burn victim - oncologist cut back dosage

    lost nails, hair, skin sloughed off

    but I am here!

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  • shirleyl
    shirleyl Member Posts: 167
    edited January 2009

    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 January 2009

    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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  • okblessed
    okblessed Member Posts: 92
    edited July 2011

    moonwolf - don't be afraid - i had extreme reactions --- it saved my life!

    you can do this - just focus on taking the very best care of yourself.

    keep your nails trimmed very short

    drink lots of fluids to flush your body

    vitamin e is wonderful for your skin

    just envision the cancer dying and being carried away and then when treatment is over help nourish your body to build clean, strong beautiful new cells:)

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  • Snappygoddess
    Snappygoddess Member Posts: 91
    edited January 2009

    Thanks for this thread. I am getting ready to finish my AC round in two weeks and then onto Taxol or Taxotere..not sure which yet. First my onco said Taxol and then when I was in his office yesterday before chemo, his nurse said Taxotere and I said, I thought he said Taxol..and she said there is not much diff in the two, so I said, well then it shouldnt matter which one I pick! I have been hearing that Taxotere has more severe SE then Taxol. I have tolereated AC very well..very little nausea.. hair loss and that's about it. I have lost only 3 lbs..my appetite has been good for the most part.

    I am hoping to survive the 12 rounds of Taxol or Taxotere as well....I know everyone reacts differently to different chemo drugs, but this thread along with some others have been very informative.

    Best wishes to all of you to fare better in your chemo journeys.

    ~Belinda~ 

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  • Onehalf
    Onehalf Member Posts: 171
    edited January 2009

    Snappygoddess-

    I have just finished with four treatments of Taxotere (and Cytoxan).

    I just wanted to say the side effects for me from the Taxotere was very easy for me. I was able to keep working through my treatment and all through the treatments my side effects were the same each time. I am going to celebrate my last treatment by scheduling Monday off from work. I have found that with the 5th day after my chemo is my "fatigue" day. (Saturday and Sunday is tiring, but Monday is the worst). In the past I have gone in to work on Mondays but I just sit down way more then normal....so just to reward myself. Next Monday I'm staying home.

    As far as the Taxotere and hair loss......I have not lost all my hair, When I was buzzed I had a little fuzz on top, and kept it. Throughout my treatment my hair has been growing. I talked to my Oncologist about what Shirleyl has claimed, My onocologist said she has been doing this for over 10 years and she has only heard of one women with the same experience.

    I agree with you and I feel we all react differently with our Chemo cocktails.

    I do encourage to talk more to your oncologist and express your concerns.

    Best of luck to you and let us know how or what you decide.

    Denise/Onehalf

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