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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  • 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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  • karen1956
    karen1956 Member Posts: 6,503
    edited December 2008

    My hair was thick, coarse and wavy prior to chemo.  Luckily it came back it almost as thick, wavy/curly but not as coarse.  This past summer it went straight and started to come out and thin. For the 1st time in my life, you can see parts of my scalp.  My hair is thin and fine.  It is a side effect of AI's.  I had been on them for 2 years. When it started to thin I had been on Aromasin for a year - no change in hair on other AI's in fact started AI's 3 weeks post chemo.  I  looked up side effects or Aromasin and hair loss is one of the side effects - I don't remember my onc telling me this - but he did tell me the main ones. When I was on Arimidex I developed bilateral CTS and at the time it was NOT listed as a side effect.  I called the drug company right after they were changing the drug package insert so I found out before my onc.  My onc specializes in bc and only treats bc so he does stay on top of things.  For me, my hair was a big part of me, so the thinning of hair has been hard emotionally.  BC - the gift that keeps on giving!!!

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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

    I am on Taxotere and Cytoxon #2 of 4 has been done...no I was not told anything about permanent hair loss....in fact everyone say's it will grow back....

    Would I have changed my mind if I knew this was true....????? thats after the fact.....

    Somethings are more important....like living a good healthy life....

    now pardon me as I go to bed ( and proabaly will have some hair dreamsUndecided)

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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 

     I am fed up of keep deleting duplicates of my old posting. I wont bother deleting any more. I have email admin twice and nobody has responded

    IS THERE ANYONE OUT THERE!!!!!!!!!!!!!! lol

    just ignore all my posts please. There is obvioulsy a tech fault and noboy wants to sort it out! 

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

    Wow I am 7 weeks out of chemo no one told me that my hair might not grow back I am getting 1/2 inch fuzz on my head but no sign of any hair on my brows or eyelashes. Its the lack of facial hair that bothers me the most because without it we look permanently sick all the time.I think our oncs should be more upfront with us about the sideeffects. On the otherhand this drug worked very well on my tumors so its hard to say whether I would of changed my therapy.

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  • okblessed
    okblessed Member Posts: 92
    edited July 2011

    Lets acknowledge that for many of us - hair is either not coming back OR not coming back to normal.  So, lets please try and share ideas, tips, etc. to cope, improve conditions - whatever. I did find that the 'dr. lowenberg's' formula definitely helps.  I had NO HAIR on top after a year - it was squeaky, shiny but his formula has put hair up there.  Only drawback - cost --- i think it comes to about $300 for a 3 month supply - pretty pricey.  I also put it on my eyebrows and they are starting to come back. Eyelashes came back in okay.  Both the dermatologists that i consulted took me off Nioxin - I believe because one of the products coats the scalp and prevents minoxidil from soaking in.  The best way to buy minoxidil is from a store like wal-mart about $20 for a 3 month supply.  I contacted a 'compound pharmacist' but he said it would be extremely expensive to mix liquid retin 'a' with the minoxidil --- I guess he just didn't want to mess with it.  I do NOT want to go through another Oklahoma summer in a wig.  So - any ideas? do any of you in other countries have access to an easier, cheaper way to get this formula? Other formulas that work?  I have also created some hairpieces from '3/4' or 'half' wigs that I sew onto a wide stretch headband. It is very cool [front and top of head can 'breathe'], stays on in wind, riding bikes, showering, swimming, sleeping, ....  I don't know if any of you have the problem of the wig slipping on that baby-fine-fuzz but I surely do and I won't wear one of those stocking on my head to hold the wig on - just makes it itchier. 

    I will probably reorder the formula despite the cost - the reason it seems to work [seems logical to me] is that the retin 'a' peels/sloughs off the layers of cells on the scalp so that the hair follicle is exposed then the minoxidil can seep in and regenerate the hair to grow.  When a new hair is coming in I can feel it when i touch my scalp and it feels almost like a little 'spring' of tightly curled hair coming through.  So, something is working.

    Any other ideas? suggestions? I wish we could make the drug company pay for our treatments for regrowth but I am not sure how to make that happen.

    Lets work together and do our very best to get our hair back - I miss mine:)

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  • shirleyl
    shirleyl Member Posts: 167
    edited December 2008

    What AS wont like is adverse publicity- this is our only weapon.

    My campagn manager is writing one last request for the 2 peices of compensation i want and if i get no satisfaction then its publicity time.

    Nobody is saying that we dont value the effectiveness of this drug it is the being lied to about the side effects that is oúr beef so we cant make a valid choice on wether to take the risk or not. 

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  • shirleyl
    shirleyl Member Posts: 167
    edited December 2008
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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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  • mumito
    mumito Member Posts: 4,562
    edited December 2008

    Shirleyl You might get some back I am 6 weeks out of taxotere and I have 1/2 inch baby hair on my scalp. No facial hair comming back though.I feel for you.

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  • okblessed
    okblessed Member Posts: 92
    edited July 2011

    http://www.medhelp.org/forums/BreastCancer/messages/595.html

    Ladies - on the above website I found other women with same hairloss --- one since 2001 and NOTHING BUT FUZZ.  One entry says oncologist not aware of other women.  How can we build a website/webpage so we can all come together?  We need to get some help finding out the cause of the permanent hairloss to see if there is any possibility of regrowing our hair.

    I honestly had hope but now that I see women have been bald for 7+ years I am truly upset.

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  • okblessed
    okblessed Member Posts: 92
    edited July 2011

     also - here is info on the combination of retin a plus minoxidil

     Retin-A has 3 main uses

    1. It is used in the topical treatment of acne vulgaris
    2. It is used in treating the visible signs of ageing and can diminish the lines on the face and can help in fading age spots
    3. It is also used to help enhance the effects on minoxidil for the treatment of alopecia or hair loss

    Topical tretinoin appears to increase the beneficial effects of minoxidil, and it is thought that this is due to increased absorption of minoxidil through alteration of the stratum cornum barrier.

    One study showed a triple absorption with 0.05 tretinoin as compared with a control vehicle.

    Does Retin-A assist in hair growth?

    Tretinoin is sold under the trademark Retin-A. Retin-A was originally used in the treatment of acne and other skin disorders. Studies have shown however that Retin-A alone or in combination with minoxidil can result in moderate to good hairgrowth in individuals with Androgenetic Alopecia and Alopecia Areata.

    Retin-A has been shown to effect cell proliferation and vascular proliferation. Studies have shown that Retin-A alone can result in good to moderate hairgrowth. The effect that Retin-A or Tretinoin has on growing hair is even more enhanced when used in combination with topical minoxidil. Dr Adam Lewenberg who markets a combination of minoxidil and tretinoin which is known as the Lewenberg formula carried out studies and recorded results of treatments carried out on patients. Dr Adam Lewenberg treated 484 people with a mixture of topical minoxidil and tretinoin. After two years of treatment "cosmetically satisfying" results were obtained in about 90% of these people. In an article written by Dr Lewenberg about his studies, Dr Lewenberg noted the following.

    Unlike Minoxidil which effects on the vertex of the scalp, the combination of Tretinoin and Minoxidil results in hair growth in all regions of the scalp.

    Also maintenance therapy requires less frequent and smaller doses of the combined medication.

    The third point that Dr Lewenberg noted is that the combination treatment of topical Minoxidil and Retin-A is highly effective in women.

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  • okblessed
    okblessed Member Posts: 92
    edited July 2011

    Here are the types of hairloss the formula says it helps.  Please read about the Androgenetic Alopecia.  Could it be a hormone imbalance? Anyone have an oncologist who might research this?

    Alopecia Areata
    This is generally considered an autoimmune disorder. It causes small, patchy circular bald patches in several parts of the scalp.

    Androgenetic Alopecia
    Androgenetic alopecia is hormone related. Androgens are any of the many hormones that shape and control a human chrematistic. A human body is programmed to produce an enzyme know as 5 alpha reductase. When the Androgen hormone in the scalp produces testosterone which mixes with 5 alpha reductase, it produces Dihydrotestosterone, or DHT. DHT is not well received by hair follicles, cutting off blood supply which is critical to growth of new hair. Thinning and or balding process begins when this occurs.

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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

    mumayan, thank you for the kind words BUT you are 6 weeks after tax i am 3 YEARS !  i doubght that it will return after so long.

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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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  • okblessed
    okblessed Member Posts: 92
    edited July 2011

    December 16, 2008

    Dear Breastcancer.org Community Member:
    Every December, experts from around the world gather at the San Antonio Breast Cancer Symposium to present the latest updates in breast cancer research. This year's meeting took place from December 10th through 14th. Join us December 17 for expert answers about the latest updates on breast cancer treatment options, side effects management, and more.
    Join us tomorrow night between 7:00 p.m. and 8:30 p.m. (EST)* for this month's Ask-the-Expert Online Conference: Updates from the 2008 San Antonio Breast Cancer Symposium. Ruth Oratz, M.D., F.A.C.P. and Carol Kaplan, M.D. will answer your questions about the latest research on risk, treatment, side effects, and more. 
    Ruth Oratz, M.D., F.A.C.P. is associate professor of clinical medicine at New York University School of Medicine. She is the founder of The Women's Oncology & Wellness Practice in New York City where she specializes in treating women with breast cancer and other malignancies, as well as women at risk for cancer.
    Carol Kaplan, M.D. is an assistant professor of clinical medicine in the Rena Rowan Breast Center at the Hospital of the University of Pennsylvania. Her work revolves around the clinical care of breast cancer patients, as well as teaching medical students and house staff.
    If you'd like to ask a question for our UPDATES FROM THE 2008 SAN ANTONIO BREAST CANCER SYMPOSIUM conference, but will not be able to join the conference tomorrow night, you can submit your question now.  We'll answer as many questions as we can during the conference. A conference transcript will be posted at Breastcancer.org by December 24, 2008.
    To join the conference, go to Breastcancer.org any time between 7:00 p.m. and 8:30 p.m. EST* tomorrow night and click on the "Join Conference" button. It's easy to participate; no special software is required. The live conference will appear in text on your screen.
    I look forward to having you join our Ask-the-Expert Online Conference tomorrow night!
    Take care,

     Marisa 

    Marisa Weiss, M.D.
    President and Founder
    Breastcancer.org
    *Breastcancer.org welcomes conference participants from all over the world. Be sure to see what time the conference will take place in your time zone
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  • Onehalf
    Onehalf Member Posts: 171
    edited December 2008

    Shirley-

    I am on Taxotere and Cytoxan. I was not told about losing my hair for ever. Of course this does scare me...Atomorrow I have an appointment with my oncologist right before my ou got 3rd of 4 treatments.

    Could you please share where got your information.

    Also just wondering why do you have to keep deleting post that you make?

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  • Onehalf
    Onehalf Member Posts: 171
    edited December 2008

    Shirley-

    On another note....
    I did lose my hair in the time frame the doctor and nurses said I would...I had my shave my head, but he did not go all the way to the scalp.

    I had short little stubbies all over my head.

    Well I never did lose all my hair....most of those stubbies stayed and have grown taller. Even by my side burn area I hand shaved there, to have hair grow back within two weeks...the hair is colorless though.

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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

    Onehalf - i have to keep deleting my messages because every time i logon my old massage from last year keeps appearing! i have reported it to adlin several times, never had a response from them and they havent done anythin g about it so i assume this site is a free for all !.

    My onc is Dr lamezec from St.brieuc in France - he would confirm to any other medics that my case is true and has been reported my himself to Aventis sanofi. He speaks very good english so no problems there.

    I also have a letter from AS telling me that yes it does sometimes happen - i would be happy to email anyone a copy of this so they can show their oncs and theirefore they are upto date with the latest side effects.  

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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 have posted my question to the experts, i cant wait up for it as in France its about 1 to 2 in the morning!!!

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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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