Taxotere - WARNING

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Bxy5528K
Bxy5528K Member Posts: 3 Member
edited October 2017 in Breast Cancer #1

 

The risk of permanent hair loss is real! Some will experience total hair loss and others only partial hair loss.

 

Here is my story….

 

I was treated with Taxotere in 2013 and 2014. After treatment my hair initially grew back. I noticed it was thinner than normal but I believed it would eventually fill in. In fact, the exact opposite happened. Over the course of the next two years my hair got thinner and thinner until I was left with about half of my original hair. My hair was not falling out in clumps instead it was falling out at a normal rate, but new hair was not growing back in. I believe that the drug Taxotere did permanent damage to my hair follicles resulting in an overall loss of about 50% of my hair. When I was given Taxotere I was told that I would lose my hair temporarily - not permanently. I was never told about the percentage of women that were experiencing permanent hair loss (at least 10%). I was also never told that there was another drug I could use that did not have these serious side effects (Taxol). I was not given the information I needed to make an informed decision.

 

I was lucky that I at least have some hair back, but I am very angry about the effect this has had on my life and the fact that it could have been totally prevented. In my case I started with a lot of hair. If my original hair had been thinner I would probably have bald spots right now. I believe there are thousands of women like me who have had a similar experience. They got their hair back initially, but then experienced a year or two of "thinning out". I called my doctor to tell him what I was experiencing and he told me he didn't think it was related to Taxotere.

 

I believe that medical professionals are not taking this seriously and as a result that are still not informing women of all the risks. In cases like mine, patients are not reporting what has happened to their doctors. They are just suffering in silence. After all, who would care (or believe them) if they said they only lost a portion of their hair. The loss of hair I have experienced is an overall loss that is spread out over my entire head with more thinning in the crown. As I stated, I believe my hair loss is attributed to the fact that only some of my hair follicles are now producing new hair. People may think I am crazy...or that some other problem is to blame, but I believe that if you took a punch biopsy of my scalp before and after I had chemo with Taxotere there would be evidence to support my beliefs. I am very concerned about the fact that this drug is still being used and that doctors are not telling patients the truth.

 

Please ask your doctor for the facts. At least 10% of women are experiencing permanent hair loss and that is a VERY significant risk. I believe the numbers are actually much higher because women like me have not been included in the statistics.

 

Comments

  • HapB
    HapB Member Posts: 527
    edited October 2017 #2
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    Taxotere and permanent hair loss

    Bxy, this is not a revelation. It has been well known for years that Taxotere causes permanent hair loss in a percentage of patients. There are class action law suits that you may want to look into. It is your right to be compensated because the consent that you gave apparently was not informed.  Women given Taxotere today are warned in writing and they sign off on the risk. You may have signed something that you did not read, or maybe you were never informed of the risk. You should search for a local attorney or do a google search of nationwide class action suits.

    I was supposedly given Taoxl, but after 5 months I have no new growth and I suspect I may have been given Taxotere.

  • Teach76
    Teach76 Member Posts: 351 Member
    #3
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    Other meds?

    After treatment were you put on an aromatase inhibitor?  After my taxotere all of my hair returned.  Like you, over the last year I have experienced a tremendous amount of loss/thinning.  I was put on Femara (Letrozole) which also causes thinning of hair.

    there is no quick solution, but I added Biotin to my regiment, and I feel it has at least slowed down the loss.

     

    Kathy

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    edited October 2017 #4
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    Oh, it's very true

    I had Taxotere in 2010.  I have maybe 25% of my original hair, which was not very thick to begin with.  I cannot go out without a wig and I buzz off what I have because it is horrible to look at and I don't want to.  I was not warned back then.  It was not reported because this side effect was not disclosed by the manufacturer and my oncologist originally said "it couldn't possibly be the chemo".  Well, it was!  And she now agrees and warns her new paitients, but I have not heard of anyone signing anything and I do keep in touch with lots of breast cancer patients undergoing treatment.  We should be warned.  We should be given the option.  There is no fix.  None.  Permanent alopecia is the word.  Key word:  permanent.  And I am not happy about it.  And of course I'm happy to be alive!  And had I been warned, and given a valid reason for using Taxotere, I probably would have agreed to do it.  I was NOT warned.  Total surprise.

     

  • Bxy5528K
    Bxy5528K Member Posts: 3 Member
    #5
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    I'm so afraid

    Yes Kathy, I'm on Arimidex, but I have been on hormone therapy before (Tamoxifen and Raloxifene) and never had any hair loss. It seems that everyone with permanent hair loss has been on Taxotere. I am really afraid that my hair will continue to get thinner. It is at a critical point right now. If I lose more I will have to wear a wig or scarf forever. I am so sorry to hear about everyone that has been affected by this. I can't believe that this happened in the United States. I had always trusted that products were heavily tested and safe. I feel totally violated. 

    Double Whammy - did your hair come in initially after chemo? Or did only 25% come back in at that time? 

  • HapB
    HapB Member Posts: 527
    edited October 2017 #6
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    Double Whammy said:

    Oh, it's very true

    I had Taxotere in 2010.  I have maybe 25% of my original hair, which was not very thick to begin with.  I cannot go out without a wig and I buzz off what I have because it is horrible to look at and I don't want to.  I was not warned back then.  It was not reported because this side effect was not disclosed by the manufacturer and my oncologist originally said "it couldn't possibly be the chemo".  Well, it was!  And she now agrees and warns her new paitients, but I have not heard of anyone signing anything and I do keep in touch with lots of breast cancer patients undergoing treatment.  We should be warned.  We should be given the option.  There is no fix.  None.  Permanent alopecia is the word.  Key word:  permanent.  And I am not happy about it.  And of course I'm happy to be alive!  And had I been warned, and given a valid reason for using Taxotere, I probably would have agreed to do it.  I was NOT warned.  Total surprise.

     

    Double Whammy, I am a little

    Double Whammy, I am a little surprised that you did not sign an informed consent form before chemo.  Have you joined the class action suit?  

  • teresa41
    teresa41 Member Posts: 471
    #7
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    Me to

    i had chemo in 2009 taxotere was one of the chemo drugs my hair has not been the same since i had it very thin I don't keep it long anymore I did before chemo I never signed anything before the chemo either was never told anything ! 

     

    Teresa

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #8
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    HapB said:

    Double Whammy, I am a little

    Double Whammy, I am a little surprised that you did not sign an informed consent form before chemo.  Have you joined the class action suit?  

    2010

    I had chemo in 2010.  No consent forms presented or signed.  Only verbal conversation.  No mention of permanent hair loss.  Yes, I am part of the suit.  I hate that this is the ONLY way to make the pharmaceutical industry and the medical profession take note, but it is.  I was also part of the interview with the FDA that confirmed this side effect and resulted in requiring the manufacturer to disclose this information.  Did no good in 2010 but maybe now.  It's all about informed consent, not that it is not an effective treatment choice.

    Suzanne

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #9
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    Double Whammy said:

    2010

    I had chemo in 2010.  No consent forms presented or signed.  Only verbal conversation.  No mention of permanent hair loss.  Yes, I am part of the suit.  I hate that this is the ONLY way to make the pharmaceutical industry and the medical profession take note, but it is.  I was also part of the interview with the FDA that confirmed this side effect and resulted in requiring the manufacturer to disclose this information.  Did no good in 2010 but maybe now.  It's all about informed consent, not that it is not an effective treatment choice.

    Suzanne

    PS

    I do not regret having done chemotherapy - I was not borderline (high oncotype score), but my stage (1b) and grade (2) were low and I do always wonder if I could have gotten away without it.  My regret is only in not being warned that this might happen.  I probably would have taken this risk, but to come as a total surprise is really not ok.  And then the emotional stuff surrounding NOT being warned. . . and to know I probably could have had Taxol instead of Taxotere, well, . . . 

    Suzanne

  • Bxy5528K
    Bxy5528K Member Posts: 3 Member
    #10
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    Hoping things will change in the future

     Suzanne - I agree with you that it's all about informed consent. As long as women are told the true risks upfront then they should be free to make their own decision. I'm glad that women like you spoke up so that the FDA would finally put a warning on the product. I'm hoping things will get better in the future. 

    Bxy

     

     

  • RalphM
    RalphM Member Posts: 1
    edited November 2017 #11
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    Long Term Affects from chemo

    I had chemo in 2010, and i have faced quite a bit of bone problems and I had Taxotere aned Cytoxan. 4 treatments over a 4 month period.

    I had cervical spine surgery in 2016, and i believe its the result of the chemo.  I had 4 vertabrae and discs that had deteriated and now have 4 new

    replacements (man made) with a cage and screws, from c4-c7 in my neck.

     

    I now have severe lower back pain, and pain in the hip joint area.  The neuropathy also exists accross the shoulder area.  This year i have also experienced

    spasms in my fingers, forearm, and severe cramping in the calf area, enough to wake me up at night from sleep.

    I thought i never would ever take any drugs, but in order to sleep each nite I take a regiment of 200 Mg gabapentin, for nerve pain, 50 mg of trazadone for sleep, and

    4 mg of musche relaxer in order to sleep at night.

     

    I wish i had never taken the chemo.  I was stage 1 , and believe that i could have lived fine without all the affects I am receiving now.

     

     

  • Apaugh
    Apaugh Member Posts: 850 Member
    #12
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    What to do...

    It is a journey no one wants to be on and just try to get through.  It leaves your body devestated inside out.  Between the surgeries, the chemo,  and the anti estrogen pills.  It is hard to pinpoint which one did this to you or that to you.  I believe it is a combination of it all.  I did not take Taxatore but my hair came back odd and thin on the top and continues to do so.  My bones feel shattered, my joints ache so bad all the time.  Another disc in my back busted.  My hips feel broken.   My skin is dry, the nausua continues.  Sleep is irratic, fatigue off the chaarts.  Neuropothy continues to drive me insane.  Take a pill for this, take a pill for that.  I dont want to anymore because they cause more side effects.   You can only do so much physical therepy to keep yourself loose.  I am thankful I learned it but knew going in it would not cure it.  So what to do...you just keep trying and you just keep going forward.  Enjoy the day the best you can.  No one knows how long it last.

    Hugs,

    Annie

  • sparton
    sparton Member Posts: 5 Member
    #13
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    I am angry that I wasn't warned about Taxtoere and permanent hair loss! It has been 15 months and I am on topical Minoxidil, Nutrafol pills, and steroid shots each month. I am praying.

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