Oh great! Permanent alopecia??

EZLiving66
EZLiving66 Member Posts: 1,482 Member
in Uterine/Endometrial Cancer #1

I started looking around the web to see if there was anything about permanent baldness and chemo.  I was given Taxotere and Carboplatin.  Look what I found!!

"Breast cancer is the most commonly diagnosed cancer among American women. Taxotere is an injectable concentrate commonly used in chemotherapy to treat breast cancer. It has been found to cause permanent alopecia in breast cancer survivors. There is no antidote for chemo-induced alopecia.

Currently there are more than 2.8 million women with a history of breast cancer living in the U.S. It is estimated that 75% of these women were prescribed Taxotere for breast cancer treatment. A 2013 study published by the National Cancer Research Institute found permanent alopecia to occur in 10-15% of patients who took Taxotere."

Love,

A bald Eldri

Comments

  • molimoli
    molimoli Member Posts: 514
    #2
    Thanks for the info. My running shoes are still on.nuff said

    Bald Eldri I hope you are wrong.Some people takes a little longer than others ,hair follicles took a beating so give more time.

    You too humorous, A Bald Eldri, geez!

    I am hugging and rubbing thy head. Moli.

  • Hybridspirits
    Hybridspirits Member Posts: 209
    #3
    thinning after chemo

    Eldri

    thanks so much for sharing this information.  I finished my Carbo/Taxol treatment 5/2013 and my hair came back VERY thin on top/front and and was curous if it had to do with the treatment.  my fingers crossed yours is just delayed and you body is slower in getting back to normal.

    i believe others on this board have posted in the past similar results.

    it has been a hard transition as a result as my oncologist is really against coloring hair her lecture:  you have gone through so much why add chemicals to your life so she would kill me if I cam in with colored hair.  So now all grey and thin.  My hairdressor has been great and we keep it short and I have learned through this process to love life and feel good about myself no matter the exterior appearance. 

    i have to admit i do still wear my wig at work as I have a high position in an Insuarnce company and haven't had that guts. 

    When i first went through treatment Jan had shared this website with me:  http://www.4women.com/

    the owner has alopecia and started this.  I have a few of these scarves and love them.  I actually spoke to the ower and she was great as she lives in Florida and makes these for hot weather.  They are a litle pricy,  sales are great but  I thought they were well worth the money and you can have fun with them

    hope all else is well with your healing and starting to feel better

    Sharon

     

     

     

  • Unknown
    Unknown
    #4
    Hybridspirits said:

    thinning after chemo

    Eldri

    thanks so much for sharing this information.  I finished my Carbo/Taxol treatment 5/2013 and my hair came back VERY thin on top/front and and was curous if it had to do with the treatment.  my fingers crossed yours is just delayed and you body is slower in getting back to normal.

    i believe others on this board have posted in the past similar results.

    it has been a hard transition as a result as my oncologist is really against coloring hair her lecture:  you have gone through so much why add chemicals to your life so she would kill me if I cam in with colored hair.  So now all grey and thin.  My hairdressor has been great and we keep it short and I have learned through this process to love life and feel good about myself no matter the exterior appearance. 

    i have to admit i do still wear my wig at work as I have a high position in an Insuarnce company and haven't had that guts. 

    When i first went through treatment Jan had shared this website with me:  http://www.4women.com/

    the owner has alopecia and started this.  I have a few of these scarves and love them.  I actually spoke to the ower and she was great as she lives in Florida and makes these for hot weather.  They are a litle pricy,  sales are great but  I thought they were well worth the money and you can have fun with them

    hope all else is well with your healing and starting to feel better

    Sharon

     

     

     

    I have one of the beau beau scarves too

    I bought one on their sale, and it's easy to wear, but it's kind-of heavy for me.  I also found that etsy has some pre-tied scarves with ties and scruncies.  I use a pearl pony tail band with my square scarf and can usually fashion a pretty head scarf look.  I find, I'm going without anything however, just wearing a smile.  Hugs Nancy

  • Sandy3185
    Sandy3185 Member Posts: 229 Member
    #5
    Wow!

    I guess I didn't do enuf research when I was getting chemo! After my third chemo my gyn/onc switched me from Taxol to Taxotere due to worsening neuropathy. He never mentioned permanent hair loss! Its been almost 2 years since I completed chemo( April 2014). My hair did grow back but much thinner especially on the top and front. It hasn't gotten any thicker in the last year. While surviving cancer was and is the most important thing to me, I wish I had been given more information. Several articles said that lower weekly doses of either drug reduces the side effects( neuropathy and permanent hair loss). Well, live and learn. Sandy

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    #6
    Sandy3185 said:

    Wow!

    I guess I didn't do enuf research when I was getting chemo! After my third chemo my gyn/onc switched me from Taxol to Taxotere due to worsening neuropathy. He never mentioned permanent hair loss! Its been almost 2 years since I completed chemo( April 2014). My hair did grow back but much thinner especially on the top and front. It hasn't gotten any thicker in the last year. While surviving cancer was and is the most important thing to me, I wish I had been given more information. Several articles said that lower weekly doses of either drug reduces the side effects( neuropathy and permanent hair loss). Well, live and learn. Sandy

    Same with me, Sandy!  No one

    Same with me, Sandy!  No one said ANYTHING about permanent baldness.  I see there is a lawsuit against the company that makes Taxotere.

    http://www.coloradolaw.net/html/taxotere-chemo.html

    Love,

    Eldri

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #7
    EZLiving66 said:

    Same with me, Sandy!  No one

    Same with me, Sandy!  No one said ANYTHING about permanent baldness.  I see there is a lawsuit against the company that makes Taxotere.

    http://www.coloradolaw.net/html/taxotere-chemo.html

    Love,

    Eldri

    Permanently bald

    Eldri, I posted on the other thread about my hair loss from Taxotere.  Yes, it's real and yes, there is a lawsuit in the works.  But I don't think you should worry just yet.  You've had a whole lot of other medical issues and your body may just not have enough ooooomph to push that hair out yet.  Give it a little more time and see what happens.  IF after a reasonable amount of time you're not seeing progress, please PM me. 

    And I'm not cue ball bald.  I look like an 80-year-old man.  Being truly bald I think might have been better than this.  Doesn't matter really.  I was fine being bald during treatment, but I'm not fine with this surprise.  I simply don't have enough hair to cover my head, have male pattern baldness and it is hidious.  I don't mind a "tude as Moli mentions, but hidious I do mind.  And I was not warned this would happen.  As a member of the Taxotears group via aheadofourtime.com, we have made some great strides lately, including an investigation by the FDA who now requires that the manufacturer list this as a potential permanent side effect. 

    Suzanne

  • molimoli
    molimoli Member Posts: 514
    #8
    Double Whammy said:

    Permanently bald

    Eldri, I posted on the other thread about my hair loss from Taxotere.  Yes, it's real and yes, there is a lawsuit in the works.  But I don't think you should worry just yet.  You've had a whole lot of other medical issues and your body may just not have enough ooooomph to push that hair out yet.  Give it a little more time and see what happens.  IF after a reasonable amount of time you're not seeing progress, please PM me. 

    And I'm not cue ball bald.  I look like an 80-year-old man.  Being truly bald I think might have been better than this.  Doesn't matter really.  I was fine being bald during treatment, but I'm not fine with this surprise.  I simply don't have enough hair to cover my head, have male pattern baldness and it is hidious.  I don't mind a "tude as Moli mentions, but hidious I do mind.  And I was not warned this would happen.  As a member of the Taxotears group via aheadofourtime.com, we have made some great strides lately, including an investigation by the FDA who now requires that the manufacturer list this as a potential permanent side effect. 

    Suzanne

    Oh Suzanne  ,so sorry to hear

    Oh Suzanne  ,so sorry to hear this but so glad you are fighting back, They took your freedom to choose away with their non-disclosure and they should answer to their dirty deeds.Tripple whammy I'd say.

    Oh how I wish I could go on a rant rampage but brain is tired tonight.

    I am hugging, good luck with your group. Moli.

  • EZLiving66
    EZLiving66 Member Posts: 1,482 Member
    #9
    Double Whammy said:

    Permanently bald

    Eldri, I posted on the other thread about my hair loss from Taxotere.  Yes, it's real and yes, there is a lawsuit in the works.  But I don't think you should worry just yet.  You've had a whole lot of other medical issues and your body may just not have enough ooooomph to push that hair out yet.  Give it a little more time and see what happens.  IF after a reasonable amount of time you're not seeing progress, please PM me. 

    And I'm not cue ball bald.  I look like an 80-year-old man.  Being truly bald I think might have been better than this.  Doesn't matter really.  I was fine being bald during treatment, but I'm not fine with this surprise.  I simply don't have enough hair to cover my head, have male pattern baldness and it is hidious.  I don't mind a "tude as Moli mentions, but hidious I do mind.  And I was not warned this would happen.  As a member of the Taxotears group via aheadofourtime.com, we have made some great strides lately, including an investigation by the FDA who now requires that the manufacturer list this as a potential permanent side effect. 

    Suzanne

    Suzanne, I also have a little

    Suzanne, I also have a little fuzz that never fell out but I am holding on to the fact I didn't lose all my eyebrows and eyelashes.  My eyebrows are a little sparse but they were always like that.  My eyelashes look fine.  Before the chemo I had enough hair on my head for two people and when I was younger, it was more like THREE!  LOL  I'd be happy if enough came back for one!!!

    If I had to wear wigs for the rest of my life, I guess I'd live.  I'd have to get a custom made one though because I have a big noggin and most off-the-rack wigs are too small.  It just makes me angry I wasn't told this was a possibility or I would have asked for an alternative chemo treatment.  I remember asking my gyno-oncologist if I'd lose my hair and he said, yes, but don't worry, it'll grow back.  Yeah.....right!!

    Love,

    Eldri

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #10
    EZLiving66 said:

    Suzanne, I also have a little

    Suzanne, I also have a little fuzz that never fell out but I am holding on to the fact I didn't lose all my eyebrows and eyelashes.  My eyebrows are a little sparse but they were always like that.  My eyelashes look fine.  Before the chemo I had enough hair on my head for two people and when I was younger, it was more like THREE!  LOL  I'd be happy if enough came back for one!!!

    If I had to wear wigs for the rest of my life, I guess I'd live.  I'd have to get a custom made one though because I have a big noggin and most off-the-rack wigs are too small.  It just makes me angry I wasn't told this was a possibility or I would have asked for an alternative chemo treatment.  I remember asking my gyno-oncologist if I'd lose my hair and he said, yes, but don't worry, it'll grow back.  Yeah.....right!!

    Love,

    Eldri

    My Expressions page

    If you look at some of the photos on my Expressions Page (click on my name and then go to the link at the top Expressions) you will see my hair journey, beginning when I first was so excited about getting hair growth.  That was about January, 2011.  I finished chemo September, 2010, so it was slow to even start.  I was SO excited!  You will see that SOME of my hair did come back, but I do not have enough to cover my head.  I even tried coloring it at one ponit.   I buzz it and wear a wig.  It's really not so bad, just bad that I was not given the option of taking the risk.  Hang in there, Eldri, I know many wormen who had Taxotere and did get all of their hair back. 

    Suzanne

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