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Tamoxifen and hair loss anyone?

98 REPLIES 98
Bibi44
Member

Re: Tamoxifen and hair loss anyone?

LOL Charys xx

Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

With such a variety of "hair talent "we should do well...
Charys
Community Champion

Re: Tamoxifen and hair loss anyone?

Not sure about the walking on the hands thing lolol.....could you just cut some off and transfer it to your face?
Charys
Community Champion

Re: Tamoxifen and hair loss anyone?

How strange the human body can be sometimes!
Charys
Community Champion

Re: Tamoxifen and hair loss anyone?

Ok ....now please understand I'm not medically trained.....but I reckon that somehow after treatment your body has given the hairy areas the wrong memo. They have clearly swapped their briefs (pun intended). Hope this helps ?
Bibi44
Member

Re: Tamoxifen and hair loss anyone?

Jobey I'm the same...I REALLY struggle to stay awake until 10pm these days.  I was hoping it's the Herceptin & will go in 6 weeks when I finally reach the end of my active treatment road.  I think my other half will have a fit if it ends up being permanent. This is far too much information, but I would like to know why my lady garden grew back straight & brown (previously greying & curly obvs) & my head hair grew back grey & curly (previously brown & straight). Let me tell you a pant moustache looks highly odd ladies....perhaps I could be the one walking around on my hands!xx

Charys
Community Champion

Re: Tamoxifen and hair loss anyone?

I......ermmm......look forward to seeing your efforts Jill. Lol

Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

Well , I see they are advertising for the next series now so better get working on the routine...think may be able to cultivate a pretty impressive beard before the auditions 😃.
Charys
Community Champion

Re: Tamoxifen and hair loss anyone?

It would be a modern dance Jill, not a ballet lol your waving legs will be just fine, it'll be a gritty performance....we can build in a synchro element to it with other people. Isn't it past your bedtime now then Jobey ??!  Well we are used to showing our  

 Cat Tongue ( I couldn't find the puppy image so had to use a cat) to plenty of people already through medical avenues, what difference would live television make ? 

 

Jobey68
Member

Re: Tamoxifen and hair loss anyone?

We can win him over if we show him our puppies........ 🐶🐶😜😜 I can also make copious amounts of Gin disappear! That can be my show stopper 🍸🍸🍸🍸🍸 

we have to keep a level of humour about us after all the stress we've been through! 

My hair is very dry and definitely thinner around my hairline but it's quite long so easy enough to hide, I'm so tired all the time too , can barely keep my eyes open past 9 most nights 💤💤💤 

Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

Not sure the Tamoxifen side effects dance would go down so well ,waving my legs in the air due to cramps every night is not a pretty sight ....
Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

Juggling, balding ,bearded ladies on unicycles yes I can see Simon Cowell going for that ...
Charys
Community Champion

Re: Tamoxifen and hair loss anyone?

bald bearded ladies lolol Well, Jill, can you juggle, ride a unicycle or swing from a high trapeze etc.? if not then I think maybe a Victorian freak show act rather than a circus act, as we d be a bit disappointing on the thrilling exciting act front. Mind, there is plenty of time to learn something in the circus skill field.....what with 10 years of treatment !!!! Hey, how's about Britains got talent? To showcase the Bald bearded look, we could choreograph a tamoxifen dance routine based on side effects. 

 

Apologies to whoever started this important thread, please don't be offended, or rather to the recent commentators as it is an old thread.... it was the laser advert started this off.....oh and Jill And Jobey. To be serious, hair loss is a really upsetting side effect as so tied up with femininity and self esteem. I am on a break, but mine as already coming out more than I had expected after 6 weeks, and it was very unsettling ...a constant reminder of the BC to be honest. It's hard, as some people Have to adapt to major body changes on this treatment, but this is such a visual one and tied up with identity. 

Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

We could form a circus act or something ...😃
Jobey68
Member

Re: Tamoxifen and hair loss anyone?

We are all going to end up bald bearded ladies!! 😝😝

Charys
Community Champion

Re: Tamoxifen and hair loss anyone?

Oh good point Jill, not considered that aspect of hormone therapy!! LOL

Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

Or on my chin even...😁
Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

So wish the hair in my chin was going rather than the hair on my head .....😳
Charys
Community Champion

Re: Tamoxifen and hair loss anyone?

My post below relates to a now removed advertising pitch for laser hair removal in India. I seem unable to edit/ delete my post below, so explaining why it's there.

Charys
Community Champion

Re: Tamoxifen and hair loss anyone?

Ha ha, I don't think us ladies suffering with tamoxifen hair thinning need laser hair removal!!!!! 

Reported 'advertising' post below. 

Kimbliss
Member

Re: Tamoxifen and hair loss anyone?

I have been on Tamoxifen for 5 years. I too had nice thick hair at the start of my tamoxifen journey. So when my hair began sheeding one year on the medication I didn't panic because of my hair thickness. By year three thinning at the hairline was noticeable. Year four my scalp was tender, similar to what it felt like while in chemo treatment.
I was told oncologist wants you on tamoxifen for life. They will tell you 5 years, then 10, begore telling you life. I plan to stop my tamoxifen this year.
Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

Hi r.h do you mean your hair has improved on Arimidex?
r.h.
Member

Re: Tamoxifen and hair loss anyone?

I have also been taking tamoxifen for 3 years. It is only now, that I just changed to arimidex that hair loss is evident. As I've been taking arimidex for just 9 days, I am fairly certain that hair loss is due to tamoxifen.

Kerrie AT
Member

Re: Tamoxifen and hair loss anyone?

Hi there

i've been on Tamoxifen for 2.5 years and only just in the last few months has the hair loss kicked in.  I have to use a drain cleaner ever 3-4 weeks due to the volume of loss.  But considering I've already been bald for this journey, a little thining is not the end of the world.  Stay away from the hair loss stop products though, many are carcinogens. Watch what hair products you use too so that you are not too hard on your hair.

 

Cheers

Kerrie 

t4263dc
Member

Re: Tamoxifen and hair loss anyone?

Hi.  I have been on Tamoxifen for 3 years and until recently have not had any side effect.  About 3 months ago my hair starting falling out and it continues.  Thank God I started with very, very thick hair, but I am very concerned.  I see that many have posted about hair loss in the beginning with it tapering off.  Has anyone had the same problem as me - hair loss after 3 years?   I had a complete physical just recently and extended blood work to help find the cause, but alas nothing.  Any I haven't changed any meds I am taking.  Yikes!!!

kyliebelinda
Member

Re: Tamoxifen and hair loss anyone?

Hi,

 

I totally understand your sentiments. I have been on Tamox for 5 years since 2010 and was told by my onc recently to take it another 5 years. However, i suffer the side effects of oily scalp and hair thinning and is having 2nd thoughts taking tamox for another 5 years, although drs have informed me about increased survival rate. I have stopped it for 2 months to enjoy the feeling of being off tamox after 'suffering' for 5 yrs of side effects. But i think i will resume it and heed advice of my drs. However, i will stop it if i cannot bear the side effects anymore but hopefully we be able to take it through for another 5 years.  

 

God bless everyone here!

Kess
Member

Re: Tamoxifen and hair loss anyone?

I have had thinning of both eyebrows and head hair whilst on tamoxifen for the last 18 months. It's not getting any worse now though, and it's not so thin I don't have a full covering.
Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

Hi Jules,yes I would say very similar to you ,hairloss has def slowed down and I'm not quite as self conscious about it as I was,I try not to stand under any spotlights though!!!
Julesangra
Member

Re: Tamoxifen and hair loss anyone?

Hi Jill

 

how are you doing?  My hair thinning has reduced quite a bit now!  Not to say that it has stopped but def better!  My hairdresser has cut my long hair to shoulder length with layers with a particular layer across the back of my crown.  It does seem to stop my hair from parting and showing patches!

Julesangra
Member

Re: Tamoxifen and hair loss anyone?

Hi Sandy

 

How are you getting on?  Are you back on Tamoxifen?  I am pleased to say that although my lovely long thick hair has been replaced with thin wispy hair, the hair loss seems to have diminished quite a bit!  It still falls out but not as badly!  I have also had it cut and my hairdresser has layered it...it looks so much more bouncy!  She has cut a short layer across the back of my crown to stop my hair parting and showing the patchy areas!

 

Are you eating a good diet?  I have a really good home made muesli with oats, coconut, walnuts, banana, strawberries and raspberries and I really think it helps make the side effects seem less dramatic!

 

Julia

 

Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

Kitty may be worth speaking to Oncologist or another doctor about the hair loss if yours is not sympathetic.
Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

Yes, if only it would go from my chin and my legs!!!!Tell the doctor to read the side effects leaflet in the box of tamoxifen it says1/10 experience hair thinning.
kittykel
Member

Re: Tamoxifen and hair loss anyone?

I not only have rapid hair loss but bald spots. It seems to be going to my face instead.
kittykel
Member

Re: Tamoxifen and hair loss anyone?

hi Jill. Doctor says he never heard of Tamoxifen causing hair loss. My hair is so thin and rapidly getting thinner by the day that I am considering a wig. Also hair on face but no where else. Good luck to you
Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

V difficult decision,my hair thinning has def slowed down after 7 months ,I can live with it in its current state but if it went any worse I would struggle as it would really affect my state of mind.
sandylo
Member

Re: Tamoxifen and hair loss anyone?

I started on arimidex was in total agony after two years out on exemerstane not much different then last two years on letrozole which was much bearable but have me trigger finger. Discharged last week hoping to finish tablets as it's just over five years since my ok and onc has put me on tamoxifen now for another five years my hair has gone really thin now i am an ex hairdresser as retired now so not sure what to do now as to whether just stop taking tablets altogether and take my chances
annietoo
Member

Re: Tamoxifen and hair loss anyone?

thanks Jill, very helpful

Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

Hi Annie,I found this info on the site from one of the nurses of its any help.
I thought you may like to know that evening primrose oil does not produce oestrogen. However there are some manufacturers who combine evening primrose oil with phytoestrogens (plant based oestrogens) and it is not known whether phytoestrogens are appropriate for women who have had breast cancer. This is due to concerns that they could potentially stimulate oestrogen sensitive breast cancer cells. Evening primrose oil (EPO) alone does not contain phytoestrogens but it is worth checking the ingredients on the label if you choose to buy EPO.
The latest studies suggest that there is little or no evidence to support that evening primrose oil reduces menopausal symptoms (if this is what it is taken for). However as many women do say that they find it beneficial, some doctors and nurses will still recommend its use.
If you would like to read more about evening primrose oil, phytoestrogens and herbal remedies, you may wish to read a booklet that Breast Cancer Care has written called Menopausal symptoms and breast cancer. This can be read online by clicking on the following link:
http://www.breastcancercare.org.uk/upload/pdf/Menopausal_symptoms_factsheet_BCC18.pdf
Kind regards
Information Nurse
annietoo
Member

Re: Tamoxifen and hair loss anyone?

I've been on Tamoxifen 5 years and just been told to stay on it another 5. Been loosing hair from eyelashes, eyebrows and head since 2010. Also my nails split from base to tip. I want to try Boots own Skin hair and nails suppliment, however, if having cancer that needs Tamoxifen you mustn't have eustrogen. This suppliment has Evening Primrose in it, does anyone know if EP has eustrogen, I am getting conflicting answers.

Thanks

Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

Didn't notice any change to eyelashes .
Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

Certainly worth asking re wig.My hair went quite dramatically after about 6 weeks,but slowed down and new hair started to appear ,still a lot thinner in places though.Having been using Nioxin shampoo /conditioner not sure of that is helping or if it would have slowed down anyway ?
magicme
Member

Re: Tamoxifen and hair loss anyone?

Hi, I started Tamoxifen at the end of August this year. I noticed some thinning of my hair at first, then it seemed to be ok.

Over the last couple of weeks, I have noticed a dramatic reduction in the amount of hair on my head and most of the strands are extremely fine! The air is getting to my scalp too easily and I can practically see through my hair to my scalp. I find I'm losing a lot of body heat quickly.

I am on Zoladex too, which I started 2 weeks after the Tamoxifen.

 

Can anyone tell me if I would be entitled to a voucher for a wig(NHS) with just being on hormone therapy?

 

I have always dreaded the thought of losing my hair and my daughter is worried about it too!

 

 

 

 

tfailing
Member

Re: Tamoxifen and hair loss anyone?

I've been on Tamixifen for about 3 weeks and have noticed my eyelashes are thinning. Has anyone else had this problem? My hair doesn't seem to be thinning. Yet.

nickif
Member

Re: Tamoxifen and hair loss anyone?

Only been on Tamozifen for a month and loosing lots of hair. I am a hairdresser by trade and know its not a normal amount. I am starting my Rads after Xmas and that can cause hair thinning too 😞 I am going to start using Nioxin shampoo and conditioner as it is especially for hair loss so fingers crossed!

 

sandybruce
Member

Re: Tamoxifen and hair loss anyone?

BRAC 1 Triple Negative Diag. 2006           Left Breast Lumpectomy/Rads- Stage 1, 1 mm, No Nodes Involved

BRAC 1 ER+PR+ HER2- Diag. 2012         Right Breast Lumpectomy/Rads-Stage 1, 9 mm No Nodes involved

Hysterectomy--done 25 years ago---age 63 now

 

I had been on Tamoxifen since Nov. 2012, but was changed to Femara on Oct. 22, 2015. I was having severe anxiety and nerve issues & some hair loss with the Tamoxifen. With Femara hair began to fall out within a couple days and my long, very thick hair is now a wispy mess of fly-away hair with thin strands that are invisible when held. At least 50 hairs (I counted) come out each time I brush; what's left gets oily in a day or two.  I am stopping the Femara today until I see my oncologist on Jan. 5th.  In addition, I have the shakes about 5-8 times a day, cry many, many times a day, am jittery, can't think clearly or logically, have joint and bone pain plus sharp, shooting pains, and the like.  I am torn about whether to go back on Tamoxifen since I had depression and nerve issues, plus some hair loss with it too. Any advice would be welcome!  

Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

Well it's not getting dramatically worse think it has slowed down, you could be right re biotin and hair in other places, my beard is coming on nicely !!!!Hairdresser cut hair a bit differently to disguise more sparse areas !!!It is depressing isn't it, but not as depressing as having BC again so I am hoping it will settle down .
Julesangra
Member

Re: Tamoxifen and hair loss anyone?

Hi Jill

 

How is your hair?  I am now back on Tamoxifen and my hair is still falling out!  What is so annoying......it is growing elsewhere!  I am wondering if the Biotin is promoting that now!  Grr!

 

Maybe we need lots of sunshine!

 

Julesangra
Member

Re: Tamoxifen and hair loss anyone?

Hi Anrora

 

i have just read your post.  I had a mastectomy and reconstruction with implant last October and was put on to Tamoxifen straight away.  I had night sweats at the beginning and coped fairly well ..... I think it can play havoc with your emotions at times but to me, that is nothing compared with the thought of losing all my hair.  I was fine until about 8 weeks ago when my hair started falling out on a daily basis.  My oncologist suggested I try Arimidex but unfortunately, I still have the hair loss and am now suffering from joint pain.  So....I have been in touch with my cancer surgeon and he thinks that I am better off with Tamoxifen!  Hopefully I can change it next week.  I guess it is finding a drug that suits you best!

Julesangra
Member

Re: Tamoxifen and hair loss anyone?

Hi Eileen

 

I was on Tamoxifen since last November.  I had a few weeks of night time sweats and a vaginal discharge ...it eased off and I was fine until about 8 weeks ago when I noticed my hair was thinning dramatically! I had long hair and fortunately it was very thick but I would say it is now half the thickness! Oh...and my hair has gone greasy not dry!!

 

Just over three weeks ago my oncologist changed the prescription to Arimidex (anastrozole) but my hair loss has continued! However, I have experienced joint pain so much so that I could hardly place weight on my ankle.  I spoke with breast cancer surgeon today and we have agreed that I should to back onto Tamoxifen.  However.....I suspect the hair loss is going to continue because these inhibitors act similarly.  This is such a challenging journey! 

Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

Good luck!!Let me know if you discover any miracle cures!!Yes, Biotin is just a B vitamin supplement that is known to help with hair and nail growth you can get it from health food shops etc