The truth about Tamoxifen and thinning hair.

stef324 · October 2014

I'm 43 and have been on Tamoxifen since the beginning of August. I have very long hair and have been noticing my hair thinning for over a month now and it's starting to freak me out. Will this slow down??? Every time I comb my wet hair the amount of hair I find in the sink has doubled - tripled. I know I shouldn't complain since I was very fortunate, not to have to undergo chemo, but I feel that no one prepared me for this possibility. What do I do? If I am on this for 5-10 years will this never get better. Should I considered giving myself a short haircut. When I grab my hair into a ponytail it's half the size it used to be

Meow13 · October 2014

Stef,

Before BC I was about 44/45 when I started menopause. I lost tons and tons of hair. I was taking estrogen patch and that didn't help. Thank God my hair was super thick before. When I turned about 50 the hair loss dramatically stopped and has continued to get thicker even though I got BC at 53 the AI drugs don't seem to effect my hair.

I am thinking it is the menopause induced from Tamoxifen that is causing this. I think you'll experience what I went through.

My hair is about shoulder length and looks nice and thick even with 3 years on AI.

Hope this helps.

alizbeth · October 2014

I went on Tamoxifen in early August also. The first two weeks I was on Tamoxifen, I had significant hair loss; however, I noticed it subsided after two weeks. I was freaked out also and went to my hair stylist. By the time my appointment came around, she did not notice any excess shedding of my hair.

My husband (a physician) thought the hair loss may be related to "telogen effluvium", which is significant hair loss about 2 or 3 months following a physically traumatizing event. I had a mastectomy in early June, and the hair loss was about 2 mos later, so he was probably right.

I was blaming the hair loss on tamoxifen also and it may have been related to starting on the tamoxifen, but mine did substantially slow down after a few weeks. I actually went off tamox for the past three weeks and will be off another two b/c I had my exchange surgery, and the reconstructive surgeon recommended it. Not looking forward to going back on tamoxifen again. I will enjoy the next two weeks off it.

foobs · November 2014

Stef

After about 4 months on Tamoxifen my thick hair began thinning drastically also. Like you, I wonder if anyone out there has had the experience and if it reversed after discontinuing the drug? Or if it slowed down after awhile. I'm 60, have just completed 5 years of Aromasin. For complicated reasons, my Onc prescribed Tamoxifen for the next 5 years, for a total of 10 yrs hormonal therapy. I'm happy that I don't have joint pain as bad as while taking Aromasin but I HATE losing my hair.

Ridley · November 2014

Robo -- I'm sorry about your permanent hair loss -- I've been on the wrong end of the side effect chart a few times myself and it sucks.

For the others on tamox -- I had significant hair thinning a few months after a significant surgery (bilat mast and diep recon -- about 12 hours) -- thinning lasted for a few months, and I got really tired of the little piles of hair in the shower, and finding hair everywhere else. I had been on tamox for a few months when it started, so I don't know if it was related to the tamox/surgery or both.

However, the good news it that it stopped!! I started taking the supplement Biotin (2,000 mg per day). I have no idea if that helped or not (I'm still taking it and afraid to stop!)

foobs · November 2014

Thank you for your responses. Robo I'm so sorry! Some of this stuff really sucks! Taxol was rough for me I only got part of my 12 doses because of neuropathy issues. But I know others who didn't seem to have lasting problems. I'm so thankful we have these drugs because in the grand scheme of things, hair loss doesn't compare to having a recurrence. duh But of course it sure would be nice to have hair just like everyone else. I'm just sayin….

Ridley, I also had hair loss a couple of months after my 10 hr reconstruction surgery, but it resolved, didn't seem to last as long as this 'episode' is lasting.

I've also been taking Biotin for over 2 yrs, (since chemo) but it sure doesn't seem to be helping. I'm trying not to get down about this. Vanity? I guess chemo didn't kill that. ha

Ridley · November 2014

foobs -- I bet it is the tamox and I bet/hope it resolves. Let us know what happens.

AlohaGirl · November 2014

I hope it resolves. I feel like I lost a ton of hair when I started taking Tamoxifen and then it stabilized but remained much thinner than it had been. (My mom's hair thinned post-menopause so maybe it is genetic.) I finished my 5 years on Tamoxifen today and am not continuing so am hoping the hair comes back!

sherridl · November 2014

I took Tamo for 4 years with many side effects. Hair loss was one of them. It would come in waves, subside, then come again. My hair is still not a thick as it was before Tamo, but it does get better. My oncologist, who was very upfront with all my side effects, told me it wasn't Tamoxifen per see that was causing it - it was the stress the drug was having on my body.

Lorbgoo · November 2014

Tamoxifen for 5 month. Extremely thick hair.

peggy_j · November 2014

I've always had extremely fine hair. After being on tamox awhile, it actually became somewhat thicker (I don't use gel any more to make it presentable). My hairdresser said she had sometimes seen this when women have hormonal changes (girls going through puberty, women being pregnant and then having the baby, going through menopause). She's seen straight hair get curlier, curly hair go straighter. In her experience, she can't predict who will have this or which way it will go. I googled and was surprised to learn that we have estrogen receptors on our hair follicles. So it's not our imagination! I heard there are Ayurvedic oils that can supposedly reduce hair loss, i.e. after menopause. Not sure if this will help but FYI.

Hopeful82014 · November 2014

Peggy - that is fascinating about the ERs on our hair follicles. Thanks for the great tidbit of info!

Annette47 · November 2014

I have had a similar experience to sherridl - the hair loss seems to come in waves, along with brittle nails. It will be be noticeable (to me, not necessarily to the world) for a few months, then subside for a few months then come again. I've had the same experience with most of the Tamoxifen SE's (hot flashes, leg cramps) - they come and go.

When I was pregnant with my girls my hair got SO thick, and then tons fell out about 3-4 months after they were born. The thinning from Tamoxifen reminds me a lot of that, so I blame the hormones. No noticeable thin patches, just less volume overall. As the OP said, if you put it in a ponytail, it feels like half the hair is gone.

So far (will be 2 years on Tami in April), I would classify it as annoying, but not as traumatic as I would imagine the hair loss from chemo to be (I was fortunate to escape that).

LtotheK · December 2014

I think my hair loss is mostly thanks to Taxotere. 6% don't get their hair back, but I'm sure the double digits get their hair slammed, like I did. It is really fine/thin in front, much thinner on the top with absolutely no body. The back is basically what it was. It is extremely depressing, even though I have full coverage. My heart goes out to those who didn't get their hair back.

I know Tamoxifen does not help matters. My friend who was on it had really significant thinning that was noticeable to me as her years progressed. Lucky her, she had curly hair. Us gals with the straight hair gotta another set of complications! I know it was the Tamox because since she's been off it, her hair is about 3x as thick.

There are some things to try. I don't know if they've worked or not, as I'm not all that committed to any one of them, but I am going to try again. Biosil gets great reviews. Anti-hair fall oil by Himalaya Herbals is also supposed to be good, but I found it too much of a nuisance to keep up with. I particularly like the hair soaps from Chagrin Valley. They give the hair a bit of "tooth" to my otherwise ridiculously fine hair (was that way before, I just had a ton of it). Hair powder is also supposed to be quite good. I am on fish oil, and I think that does make some difference in my health overall. Haven't done the 10,000 mgs of biotin, as it constipates the bejeezus out of me, but some people swear by that.

Other more radical steps are hair transplants, which I've considered for the front (too expensive and time consuming for me now.) I know many folks stand by Rogaine. I haven't tried that, but probably should. Not thrilled about putting chemicals on my head, so I feel like I'm saving that as a last resort. And finally, there are some great new shampoos out to thicken the shaft. Loreal just put out a new one that gets good reviews. I think this basically renders the Aveda Avanti system an overpriced, overscented product.

So with you on this. Very hard on the self-esteem. Fortunately, my hair wasn't my finest feature. I can't even imagine what it's like for folks for whom it was. My heart goes out.

windgirl · April 2015

I had hair loss due to telogen effluvium years before BC, 2-3 months following a flu with ver high fever for a number of days. As a poster mentioned above surgery can also cause this so if your loss is around this timeframe it could be that. A dermatologist can tell you in five minutes, it's pretty easy to diagnose. I didn't get it after my BC surgery as I was already bald from chemo

Professor50 · April 2015

My hair was falling out at an alarming rate (to me) a few years ago. This was pre-cancer. I think it was just menopause symptoms. I freaked out about it for several months and then it sort of just stopped. Anyway, during my tamoxifen days I didn't have hair loss...

Anonymous · April 2015

I take a biotin supplement every day and my hair is thicker than it was before chemo, meno, tamoxifen, and now arimidex.

scvmom65 · April 2015

I took Tamox for almost 2 years and had some thinning but I am not sure if it is due to the drug or menopause. I definitely saw hair loss after surgery and it started at about 2 months after surgery for some reason. I had surgeries before my DX and experienced the same thing so I know part of it is surgery/anesthesia related. My mom, who went through natural menopause, also has thinner hair so that is why I am not sure if it was caused by the Tamox or not. I got off the Tamox and had my ovaries removed and the thinning never improved sadly.

Anna

The truth about Tamoxifen and thinning hair.

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