HAIR LOSS - How are you dealing with it?

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hlya
hlya Member Posts: 484

I've been gradually losing lots of hair in the past few years,  I was dx in 2009 and have been on Zoladex (overian injection) and Tamoxifen for 3 years, I am not sure whether the hair loss is caused by the treatment.  I am 46 and I do not think my hair loss should be this severe at this age.
  - at least the treatment makes it worse?

My hair loss starts to be very noticable and I can not bear it,  it upsets me very much.

How do you ladies deal with it?  Are you experiencing the same as me at my age?

Any advise would help.

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Comments

  • Nedeza
    Nedeza Member Posts: 666
    edited February 2013

    I'm going on 4 years on Tamoxifin & my hair has been thinning year to year now. I really noticed losing clumps of hair over the last year but have blamed it on stress. ONC recommended having my thyroid checked because hair loss can be attributed to hypothyroidism. I've also had a lot of joint too. It could be a combination of things but all I know is...I'm really tired of it! Yes, the benefits of Tamoxifin outweighs the risks but now I'm conscientious of my hair.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2013

    My doc stopped my tamoxifen as the hair loss was is male pattern baldness and that is not something I can live with. Well be discussing other options soon.

  • hlya
    hlya Member Posts: 484
    edited February 2013

    HVV: Was your hair loss stopped after you stopped Tamoxifen?

    Did your doctor suggest any hair regrow products?

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2013

    Hi,

    I just stopped on Wednesday so nothing to report.  Hairloss seems consistent but its been two days.  

  • april485
    april485 Member Posts: 3,257
    edited February 2013

    I have heard that Biotin (sold over the counter) can help with hair regrowth? I hope this is not one of my SE's when I start on an AI but I am told it very well can be! Ugh...why can't these drugs be a little easier to tolerate...so scared!

    Hugs and hoping that once the tamoxifen is out of your system, you hair will begin to grow in like crazy!

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2013

    It was beginning to grow back from chemo and then an few quik weeks it began to recede. Thank you for all your support.

  • rgiuff
    rgiuff Member Posts: 1,094
    edited February 2013

    Hlya, don't know what stage of cancer you had, but maybe you could stop the zoladex, which is basically putting you into a menopausal state.  Hair loss happens for sure with menopause.  Can you just be on the tamoxifen for now and see what happens with your hair?  I was perimenopausal at diagnosis, did 3 years of tamoxifen, which I finished a year ago. Did not notice any major hair loss during that time.  Hair looked good.  Now that I'm postmenopausal, I'm noticing gradual thinning a little more each year, so I think this is just naturally happening from regular menopause.

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited February 2013

    Menopause does, indeed, result in hair thinning.  For some, chemo-induced menopause and tamoxifen therapy co-incide, which may make natural thinning more noticable.  I know that it doesn't make it easier when you're leaving hair on the bathroom floor.

  • hlya
    hlya Member Posts: 484
    edited February 2013

    rgiuff:  I am stage 1, the zoladex was already stopped few months ago as I had been on it for 3 years,  and my doctor said 3 years is the max. treatment time for zoladex.  Now I am on tamoxifen only.

    I am hoping the hair loss was caused by both Zoladex & tam.  and it would get better since one of the treament was finished.

    Also a question to any other ladies:  Even on menopause,  is there any good hair regrow product to be considered? Thanks.

  • hlya
    hlya Member Posts: 484
    edited February 2013

    SelenaWolf:  I hate shower time now.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2013

    Hi, I'd appreciate everyone's comments please. I was on tamoxifen for 3 months and perimenopausal when I started active treatment last spring. I regrew my hair after chemo and was just getting full coverage when I started losing it in a male pattern specifically quite quickly. Since second week of January I've lost a lot of hair at my temples and lots of body hair. I was told to stop tamoxifen 4 days ago and am on biotin and iron. I understand from my research that minoxidil or propecia and spirolactone can help to stop the loss tho not so good at regrowing hair. I also understand that insulin resistance can increase likelihood of hair loss. I am in the metformin trial.



    I am scared. I don't want to be bald and need to intervene before I am more noticeably bald. This is not gradual or thinning. Whole areas have been lost and are bare. I am going to seek out an endocrinologist. I have an appointment with my mo who I'm pretty sure will only focus on what to substitute for the tamoxifen ... I am not sure who else may be able to help me. Have you experienced anything like this? Please weigh in.

  • gentianviolet
    gentianviolet Member Posts: 316
    edited February 2013

    Hlya and HVV- I have experienced male pattern baldness since menopause when I began using minoxidil.  It worked for me for years, my hair never was as thick as when I was younger (now I am 72) however I had a fair amount of regrowth and the shedding did stop.  Fast forward to my diagnosis in 2009 and I was put on tamoxifen.......within 6 months I began to lose hair and lots of it even though I was still using the minoxidil.  I was so despondent, but I continued the tamoxifen; I was scared to stop it.  But within another 8 months my hair began to regrow, lots of new hair.  Then I found that I was allergic to the propylene glycol in the minoxidil (it made my head itch).  Subsequently I found another product call dualgen-5 which has no PG and have been using it for 6 months now without an itching problem, and the regrowth continues.  I know just how depressing hair loss can be so I hope some of this information helps you.  Sending good thoughts to you.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2013

    Barbara, thank you. I am so great full for your words. Really. I know you understand how upsetting this is. I would appreciate learning anything else you care to share. Hvv

  • gentianviolet
    gentianviolet Member Posts: 316
    edited February 2013

    Hvv - Do you have specific questions?  I would be happy to try and answer anything you might ask.  Good thoughts

  • hlya
    hlya Member Posts: 484
    edited February 2013

    Barbara:  Is minoxidil actually Rogaine?  I saw lots of positive feedbacks but also was scared by lots of negative feedbacks as well.

    I never had lots of hair either but just OK, average when I was young.  I really envy those women who had lots of hair, and after the hair loss their hair still looks good.

    I tried one bottle of a Germany product, but only one bottle it's hard to say whether it works or not.  I will try to order more from Europe and see whether it works.  It's very hard to get this product in North America.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2013

    Minoxidil is rogaine.



    Barbara, have you ever tried spironolactone? I understand it can help. I am concerned about going with minoxidil alone as my male pattern hair loss was very significant within just 5 to 6 weeks. Did you ever try propecia? Thank you. I am fearful and stressed because although I had hairloss due to perimenopause before dx, it was very limited and most was diffuse thinning as opposed to any male pattern baldness. The quickness of his change is of great concern o me.

  • gentianviolet
    gentianviolet Member Posts: 316
    edited February 2013

    Hlya - Yes minoxidil is the generic of Rogaine and the cost is significantly less for minoxidil.  Until I realized I had developed an allergic reaction to the propylene glycol in both Rogaine and minoxidil I had been using it for about 20 years.  I do not know anything about the German product you mentioned.  Before using minoxidil my hairloss was diffuse also however it was most noticeable on the top of my head.  It does take about 3 months before new hairs can be seen.  I now use dualgen-5 because it does not contain PG.  It works the same as minoxidil and can be found through a google search or PM me if you want the web site address.

    Hvv - I have not tried spironolactone nor propecia, not that I didn't think of trying them.  The side effects from those products scared me away and at the same time I was getting good results from minoxidil.  I definitely have male pattern baldness issues (I have a bald brother and a balding son).  It really started during menopause and it was extreme on the top but all over loss at the same time.  The minoxidil that I started using some 20 years ago did work.  Not that my hair ever returned to the original fullness but new hair did grow and the shedding did stop.  I know I was helped from the minoxidil because I did stop using it at one point (about 10 years in) and within 3 months I had extreme hair shedding, so back to using it and the shedding stopped within 6 weeks or so.  I so understand your desperation to resolve this issue.  If you have more questions, please ask. 

    Sending good thoughts to you both.

  • hlya
    hlya Member Posts: 484
    edited February 2013

    Hi, Barbara:  I saw lots of people said when they started to use Regaine, they had much more hair loss at the begining and some had to stop. - some people said you have to lose hair first then regrow,  it really scares me.

    Is that true?

  • gentianviolet
    gentianviolet Member Posts: 316
    edited February 2013

    hlya - I was shedding so much to begin with that I was okay with it taking 4 to 6 weeks to make the shedding stop.  So whether it was the minoxidil that caused it to continue immediately after starting it or whether it took awhile for the minoxidil to actually stop me from shedding, I don't know........however I just knew I couldn't continue the way it was so I was willing to put my faith in the fact that it would stop within weeks.  I was desperate and had purchased a hair piece for the top of my head.  Fortunately I never had to use it.  I did try to hide the top thin area with oblong scarves wrapped double around my head until I had about an inch or two of regrowth.  Good thoughts.

  • hlya
    hlya Member Posts: 484
    edited March 2013

    Barbara:  I am looking back to the posts here,  may I know what PG is?  Is it harmful?

  • Moderators
    Moderators Member Posts: 25,912
    edited March 2013

    hiya, PG is propylene glycol. Barbara/gentianviolet notes in her Feb 24 post that she is allergic to PG, which is why she was avoiding products that contaied it.

    • The Mods

  • hlya
    hlya Member Posts: 484
    edited March 2013

    Thanks!

    I just google Minoxidil and I am so scared by it's side effects which people mentioned.  But I am really suffering from hair loss. Cry

  • lekker
    lekker Member Posts: 594
    edited March 2013

    I've had issues with thinning hair on and off for years. Between perimenopause, iron deficiency and stress it's been pretty bad lately. I will start an AI after my hyst/ooph next month and I am aware it might get worse. I'm not sure what I will try going forward, but I urge you to use caution when considering spironolactone after being diagnosed with breast cancer. The drug definitely interacts with hormones (young men are warned about gynomastia, erectile dysfunction, etc) and I have even seen passing reference that it might increase your risk for developing breast cancer (but I acknowledge that I don't have the sources in front of me for that). Something to ask your doctor about anyway...

  • gentianviolet
    gentianviolet Member Posts: 316
    edited March 2013

    Hlya - I just sent you a PM about minoxidil.

  • hlya
    hlya Member Posts: 484
    edited March 2013

    Hi, Lekker,

    Thanks.  Is spironolactone one of the ingredients of Minoxidil?

  • lekker
    lekker Member Posts: 594
    edited March 2013

    Sprironolactone is a separate medication. I saw it mentioned a couple of times on this thread so I wanted to throw it out there.

  • QCA
    QCA Member Posts: 1,539
    edited March 2013

    I'm glad to see this topic and hope everybody who has any solutions to the hair loss problem will post!  I've been on arimidex for a little over 2 years and the problem has only increased.  Due to a combination of heredity and side effects of blood pressure medicines, I already had some (but manageable) hair loss, but now it's awful.

    My dermatologist said to use minoxidil in the men's strength (5%), which I was already doing, and I also take 5000 mg Biotin daily, plus vitamins, calcium, and D-3.  Nothing helps.  I found a product called Toppik at Sally's beauty supply, a fiber like powder that you sprinkle over balding areas, so I do use that daily.  Cosmetically, it's better with it than without, but it gets all over the bathroom sink, etc. 

    Don't we all just hate this???

    Kathy

  • sherridl
    sherridl Member Posts: 42
    edited March 2013

    I had pretty severe hair loss while on Tamo - my oncologist said it was caused by the stress Tamo was putting on my body.  After a couple of years, the hair loss slowed down.  I quit after 4 years and my hair finally started growing back.

  • hlya
    hlya Member Posts: 484
    edited March 2013

    Hi, Ladies, may I know your age?

    Does anyone start to get severe hair loss at my age 46?

    Also I am not sure whether to continue anti-hormone treatment after 5 years when I get off from Tam,  as my tumer was ER+PR+,   is there anyway to protect our hair without affecting our treatment?   I know I can not always take benefit of both sides, but still wanna try as hair loss upsets me very much.

  • QCA
    QCA Member Posts: 1,539
    edited March 2013

    Hyla, I just turned 63.  Hair loss is the pits at any age!

    Kathy

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