Tamoxifen and hair thinning

Les2
Les2 Member Posts: 3

Looking for anyone who shares this side effect. Just completed my first year of tamoxifen - with little side effects but noticed within the past

month, significant hair thinning.

Had double mastectomy in January 2012 with recon.; BRCA positive.

Anyone have any tips or advice? Did you change to another medication?

Comments

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583
    I am on my last stretch of

    I am on my last stretch of tamoxifen..(I HOPE To take my last dose in Aug for my 5  yrs of taking it) I had hysterctomy due to enlarged uterus. I have so much hair and very thick-and I have not noticed anything different-with thin=ness at all. I may have come and just so much hair (hair dressers always comment-they need to mix up more dye each time, blow dry longer-stays wet for hours not blown out)

     

    I Hope you get advice from others here...I am sure you will..

     

    Denise

  • mmaitle3002
    mmaitle3002 Member Posts: 1
    Hair Thinning

    Chemo through me into menopause so my hair thinned due to hormone changes.  My hairdresser recommended that I use the Redken Age Defying hair products.  They have really helped my hair.  It may take a few months to notice the difference, and they are a little pricy, but worth it.  I have used them faithfully for several years now.  Good Luck!

  • Double Whammy
    Double Whammy Member Posts: 2,832

    Hair Thinning

    Chemo through me into menopause so my hair thinned due to hormone changes.  My hairdresser recommended that I use the Redken Age Defying hair products.  They have really helped my hair.  It may take a few months to notice the difference, and they are a little pricy, but worth it.  I have used them faithfully for several years now.  Good Luck!

    I have minimal hair

    but I believe mine is permanent hair loss from Taxotere.  I simply never grew all of it back.  I've been to dermatologists, had every lab test available, used Rogaine faithfully for 6 months, and tried a number of specialty hair products (have not tried Redkin).  Nothing has worked.   Recently, my oncologist switched me from Arimidex TO Tamoxifen in the hope that Arimidex was contributing.  It's been 2 months and so far no difference.  If you got your hair back after chemo, and your hair is thinning, I imagine it's from lack of estrogen.  And just what are we supposed to do about that? 

    Hope your hairloss stops.  This is simply devastating.

    Suzanne

  • Les2
    Les2 Member Posts: 3

    I have minimal hair

    but I believe mine is permanent hair loss from Taxotere.  I simply never grew all of it back.  I've been to dermatologists, had every lab test available, used Rogaine faithfully for 6 months, and tried a number of specialty hair products (have not tried Redkin).  Nothing has worked.   Recently, my oncologist switched me from Arimidex TO Tamoxifen in the hope that Arimidex was contributing.  It's been 2 months and so far no difference.  If you got your hair back after chemo, and your hair is thinning, I imagine it's from lack of estrogen.  And just what are we supposed to do about that? 

    Hope your hairloss stops.  This is simply devastating.

    Suzanne

    Thanks all.
    It's just so

    Thanks all.

    It's just so discouraging to see my hair disappear. Luckily I didn't need chemo...just the bilateral mast. (DCIS stage 1 and BRCA+).

    Needed an oopherectomy as well...so the hair thinning could be a double whammy of surgical menopause and the Tamox. I'm experimenting with different shampoos...I find my hair and skin

    super dry too.

  • Mariannemm
    Mariannemm Member Posts: 136
    Les2 said:

    Thanks all.
    It's just so

    Thanks all.

    It's just so discouraging to see my hair disappear. Luckily I didn't need chemo...just the bilateral mast. (DCIS stage 1 and BRCA+).

    Needed an oopherectomy as well...so the hair thinning could be a double whammy of surgical menopause and the Tamox. I'm experimenting with different shampoos...I find my hair and skin

    super dry too.

    ME TOO!

    I have had scalp issues ever since my hair grew back!  It is so frustrating.  About 3 months ago I started loosing large amounts of hair.  I had already been seeing a dermologist and nothing was helping with the huge flakes of skin that was coming off then 3 months ago the hair loss began.  Derm did a biopsey and they said I have 3 different scalp conditions going on.  I asked if it could be the tamoxifen and he said no.  Last week I cut off all my hair so it is really short now.  I just couldn't handle seeing all that hair go down the drain again.  I didn't mind being bald it is the loosing part that is so hard.  I am going to go see a specialist in Portland to see if there is anything I can do.  My derm here said there isn't anything more he could do for me.  So I am moving on to a new derm!  I will do anything and try anything to stop the flaking, itiching, pain and hair loss!  Keep us posted on how you are doing with that.  I will be interested in hearing!!! Marianne

  • JJDS
    JJDS Member Posts: 258
    Les2 said:

    Thanks all.
    It's just so

    Thanks all.

    It's just so discouraging to see my hair disappear. Luckily I didn't need chemo...just the bilateral mast. (DCIS stage 1 and BRCA+).

    Needed an oopherectomy as well...so the hair thinning could be a double whammy of surgical menopause and the Tamox. I'm experimenting with different shampoos...I find my hair and skin

    super dry too.

    Menopause can cause hair

    Menopause can cause hair thinning.  I don't know if it is a side effect of tamoxifen.  Hope you find something that will help you.

    JJ

  • Susan742
    Susan742 Member Posts: 2
    Nails thinning

    I started Tamoxifen in December 2012.  I haven't noticed hair thinning, but my nails are week and thin.  I am doubling up on my calcium and getting Vitamin D to help store it.

  • KarenR2012
    KarenR2012 Member Posts: 2

    I have minimal hair

    but I believe mine is permanent hair loss from Taxotere.  I simply never grew all of it back.  I've been to dermatologists, had every lab test available, used Rogaine faithfully for 6 months, and tried a number of specialty hair products (have not tried Redkin).  Nothing has worked.   Recently, my oncologist switched me from Arimidex TO Tamoxifen in the hope that Arimidex was contributing.  It's been 2 months and so far no difference.  If you got your hair back after chemo, and your hair is thinning, I imagine it's from lack of estrogen.  And just what are we supposed to do about that? 

    Hope your hairloss stops.  This is simply devastating.

    Suzanne

    Hair never grew back

    Hi Double Whammy. I had bc last year and had taxotere for my chemo. It is now  been over a year and my hair is still very very thin see through to scalp and flyaway. It never grew back like normal hair. I think it is either from the chemo or from the Tamoxifen that I have been taking since last Nov. No one can give my any answers. Did your hair ever grow back? I have tried various natural oil products but no success. I have not tried Rogane yet but may have to resort to trying it. Any biotin product I believe interfers with Tamoxifen. 

    Forever hoping.

    Karen

  • Double Whammy
    Double Whammy Member Posts: 2,832

    Hair never grew back

    Hi Double Whammy. I had bc last year and had taxotere for my chemo. It is now  been over a year and my hair is still very very thin see through to scalp and flyaway. It never grew back like normal hair. I think it is either from the chemo or from the Tamoxifen that I have been taking since last Nov. No one can give my any answers. Did your hair ever grow back? I have tried various natural oil products but no success. I have not tried Rogane yet but may have to resort to trying it. Any biotin product I believe interfers with Tamoxifen. 

    Forever hoping.

    Karen

    I've made peace with it

    Karen, that's all I can say.  No, my hair did not ever all come back (it's been 3 years now since my last infusion) and my oncologist now admits it was the Taxotere).  You might want to visit the website http://aheadofourtime.org.  It's for folks with permanent hair loss from Taxotere - which is a known side effect but one oncologists, dermatologists, etc. don't want to own up to for some reason.  I personally know another woman who had this happen to her, but the women I've worked with as a peer navigator who had Taxotere all got their hair back in spades!  It is rare, but it does happen and it is devastating.  And there's nothing that can fix it.  I tried everything medically and a little snake oil on the side.    I now shave my head because I look like the crypt keeper or a zombie with the hair I have and there is no way to make it look good.   It's simply horrible and sick looking.  I wear wigs most of the time and my stubbles sort of act like velcro.  If I have hair, the wigs slip and if I wear a cap under the wig it's too tight. 

    I have told my oncologist that I intend to complain about this for the rest of my life and since she extended my life, she was going to hear about it for a long long time.

    PM me if you want more information.  There are a few threads on here by others and there are threads on breastcancer.org forums. 

    Suzanne

  • mjjones453
    mjjones453 Member Posts: 155
    hair thinning

    I have been on tomoxifen since May of 2010.  My hair falls out alot, and definatly is thinning.  I also have issues with my fingernails thinning and are brittle, and have ridges in them.  I am wondering if pre-natal vitamins will help. The girls I work with are trying to grow their hair out, one is taking pre-natal vitamins, the other some type of vitamins for hiar growth. it's a thought!

    Mary

  • CanadianGirl58
    CanadianGirl58 Member Posts: 10
    edited September 2017 #12

    I have minimal hair

    but I believe mine is permanent hair loss from Taxotere.  I simply never grew all of it back.  I've been to dermatologists, had every lab test available, used Rogaine faithfully for 6 months, and tried a number of specialty hair products (have not tried Redkin).  Nothing has worked.   Recently, my oncologist switched me from Arimidex TO Tamoxifen in the hope that Arimidex was contributing.  It's been 2 months and so far no difference.  If you got your hair back after chemo, and your hair is thinning, I imagine it's from lack of estrogen.  And just what are we supposed to do about that? 

    Hope your hairloss stops.  This is simply devastating.

    Suzanne

    Permanent hair loss

    Hello Suzanne/ Double Whammy - I know that you have made peace with this but I am hoping you don't mind me asking how much of your hair grew back, even if it left you with permanent losses.  I, too, was on taxotere (docetaxel).  i do have a faint shadow over all of my head but there are spots on top and on crown where it is very, very sparse.  Next Tuesday would be 3 months post final chemo.  Also - I am getting back a fair amount of eye lashes, but eyebrows nothing to speak of except light fuzz that doesn't seem to be doing anything week after week.

    I am wondering whether my hair regrowth - or lack of regrowth in places - mirrors yours?  Thanking you in advance if you feel you can share this information.

    And I think you look marvelous in your picture!  If that is a wig, it is fantastic!  Carolynn

  • disneyfan2008
    disneyfan2008 Member Posts: 6,583
    Never an issue. i was on

    Never an issue. i was on Tamoxifen 5 yrs , i have very thick hair to start with but no thinning for me personally.

  • ballerina06
    ballerina06 Member Posts: 57
    My hair got thin

    My hair got thin and some came out but I didn't take tamoxifen for the 5 year duration because it made me fatigue and my joints started to hurt. I'm very sensitive to medicines so I did 2 years. Mary I may take those pre-natal vitamins my hair & nails grew off of those.

  • Olami791
    Olami791 Member Posts: 2
    edited January 2018 #15
    Mee too Lee

    My hair is starting to thin all over and coming out on the edges. I have only been taking it for abt. 4 months. I am also BRCA positive. I want my hair. i wonder what will happen if i stop taking it.

  • Apaugh
    Apaugh Member Posts: 850
    Hair thin on top...

    After chemo my hair came in wild.  Short in areas, curly in the back, straight in front, thin on top.  Three different textures.  Crazy wild hair.  It still is 6 mo. after last treatment.  I am on Tomoxifen now, and it is staying thinner on top but it is trying.  I came across a shampoo by John Fredia called Root Awakening, it seems to be helping.  I am always looking, dont give up.

    Your body was stunned, it has to wake up.  It takes awhile.

    Hugs,

    Annie