71315members
374567posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Tamoxifen and hair loss anyone?

CVincent
Member

Re: Tamoxifen and hair loss anyone?

Ok...looked it up...Vitamin B7, right? Will ask my doc. Thanks so much for the info!
CVincent
Member

Re: Tamoxifen and hair loss anyone?

From research I've done, it seems Nioxin or Biota are the best hair care products...would like to hear more re: biotin...is it prescription?
Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

So far Nioxin shampoo/conditioner and biotin supplements appear to have stopped it getting any worse ,watch this space as they say!!Been using them both for a month.
CVincent
Member

Re: Tamoxifen and hair loss anyone?

Hi all!  So, I too am suffering w/thin, dry hair from tamoxifen use.  I was hoping to find the best products.  I'll be going to my hairdresser next week, with whom I shared my concerns when making the appt., and I hope to be able to share w/her some solutions.   Please...any advise on the best products???  Thanks for responding! 

Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

That's exactly how I felt Eileen, had visions of having 3 permed pink curls!!!Glad you have finished your rads and feel ok.We have started a moving on thread " onwards in October" if you want to join us.Good luck with your hair, it's horrible to see it falling out, but as someone else said hair thinning is a side effect but not going bald so try not to get too worried .
Eiljones
Member

Re: Tamoxifen and hair loss anyone?

Thanks for the quick reply Jill1998.  I guess I will just have to see how it goes, Only time will tell.  I'm 68 but I dont really feel ready to be a little old lady with thinning hair just yet. lol. I only finished rads yesterday and I feel really well and I don't want another hassle to deal with just yet. Eileen.

Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

Yes, Eileen 2 of the ladies on the rads thread have suffered hair loss on antrazole .It can be a factor with both meds because it affects the Oestrogen production or how your body responds to Oestrogen.I guess you could react differently to Tamoxifen though?My hair loss has settled down this could have happened anyway or may be due to the shampoo/supplements I am using.
Eiljones
Member

Re: Tamoxifen and hair loss anyone?

Has anyone suffered hair thinning when taking anastrazole?  I have been on it for 7 weeks and after a couple of weeks my hair went very dry and looked like straw. Now 5 weeks later I am losing a lot of hair whenever I brush it.  I have never noticed this before I started taking anastrazole.  My oncologlist has told me to stop taking anastrazole for a month to see if things improve and if they do then I can swap to tamoxifen.  I am worried that tamoxifen will have the same effect on my hair. Eileen.

bobjunger2010
Member

Re: Tamoxifen and hair loss anyone?

You should be very carefull what products  and medicamentation you take, because it can cause a various of diffrent problems, apart from the ones you have.

 

If  you started taking something and noticed that you start  to loose hair,  then you should  immediately stop taking that product. In many cases it will  stop hair loss, but maybe it has triggered a chain reaction in the body and you need to take some measures to prevent and stop hair loss.

 

A good  friend of mine had a bad encounter with hair loss, but after reaseaching and dedicating to a treatment, he finally defeated hair  loss  and started to grow  hair back again.

 

His story  is amazing, you should defenitely check it out.

 

How I defeated hair loss

Julesangra
Member

Re: Tamoxifen and hair loss anyone?

Thank you!

 

I didn't have any joint pain on Tamoxifen...I shall give Arimidex another week!

Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

I have found my joint pain settled down after a while,I have been on Tamoxifen since beginning of August.So hard putting something in your mouth every day that you know causes you problems but hopefully the side effects will be liveable with as I don't want to repeat this experience in a hurry .Try the Nioxin it's not too bad price wise if you shop around, recon a bottle will last at least a month ,I have plenty left after 3 weeks, but only have short hair.
Julesangra
Member

Re: Tamoxifen and hair loss anyone?

That is exactly what my GP said....but I didn't lose any hair after pregnancy!  I think it is lack of oestrogen that causes your hair follicles to shrink!

 

Will try Nioxin shampoo I think if you have noticed an improvement!  I have taken Biotin for 2 months now....hope it is encouraging those new ones to grow!

 

I don't know if I will be able to put up with the joint and bone pain though...3 weeks down the line and it has developed big time.  

 

 

 

Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

Thanks Jules,I have been taking Biotin and using Nioxin shampoo for past 3 weeks and hair loss does appear to have slowed down.Spoke to G.P about it and she said could be like when you are pregnant and suffer hair loss an initial reaction to the changes of hormone balance.She said that although hair is breaking/dropping out new hair is also growing so watch this space (or should I say hairline)!!
Julesangra
Member

Re: Tamoxifen and hair loss anyone?

http://www.amazon.com/Therapro-Mediceuticals-Hair-Supplement-women/dp/B0077E69IE

 

A South African friend told me she used a dietary supplement called HairGain...she said she had a great improvement after 3 months.... but it doesn't look like you can get it here!  I would be reluctant to buy it on the net.  It is from the States and supplied by specialist hair dressers!

 

Another has said once a fortnight massage castor oil and vitamin E oil into scalp.  Leave on overnight and wash out in the morning!  Hmm!  My hair has become very greasy in recent weeks..I don't know if I would be able to wash the oil out successfully!

Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

Yeh ,it's not fun is it!!!I looked at Rogaine it is very labour intensive twice a day and can be 3 or 4 months to see any results but if you can be bothered may be worth a try.
Julesangra
Member

Re: Tamoxifen and hair loss anyone?

Hi Jill

 

I don't think you can risk it!  We are so lucky we are survivors and don't want it coming back! I am so grateful to Addenbrookes...they caught it in time and saved my life!

 

A friend has mentioned trying Rogaine!

 

I guess it takes time for our bodies to adjust...it is only the last few weeks my implant has felt less like a rubber band strapped across my chest!

 

Grr!  Is all I can say to breast cancer!

 

x

Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

Hi Jules, from what I can gather the hair loss is not permanent ,but will continue for at least the first year of using these drugs then maybe settle down a bit ,you seem to have had the opposite effect however.I am bathing in my own hair at the moment and finding it very depressing to the point where I am considering stoping the Tamoxifen as it is affecting how I feel about myself. I only get a very small percentage gain from the Tamoxifen but even so I feel worried about not doing all I can to stop reoccurrence,can't win really !Good luck with new meds.
Julesangra
Member

Re: Tamoxifen and hair loss anyone?

Hi

I had a mastectomy with reconstruction last October 2014. I was put onto Tamoxifen immediately and I got the side-effects of nighttime sweats and vaginal discharge.  I did notice a small amount of hair loss but in the beginning was minimal however six weeks ago it started falling out in handfuls on a daily basis! I noticed there is stinging sensation especially on the top of my scalp.  

 

I feel as a breast cancer patient I have suffered enough without having to go through losing my pride and joy! Fortunately I had a very thick head of hair before I started the treatment however I would now say it's probably half the thickness!

 

Last week my GP put me onto Arimidex so let's see!  My hair is still falling out and I have noticed more joint pain over the last couple of days! My head still stings and I fear that it could be my hair follicles dying!  And I appear to have an overwhelming tiredness!

 

There really doesn't seem to be much on the Internet about the hair loss affects with these inhibiting drugs or indeed what the long-term effects are i.e. is it permanent hair loss? 

 

I will let you know how I get on especially as far as the hair loss is concerned!  Take care

Jill1998
Community Champion

Re: Tamoxifen and hair loss anyone?

Has anyone tried Regaine for women ,was recommended on an American site for hair loss connected with Tamoxifen, supposed to stop it getting any worse anyway.It is obviously alot more common side effect than the manufacturers want us to believe.Only been taking it 6 weeks and I have receding hairline!!
Anrora
Member

Re: Tamoxifen and hair loss anyone?

Hello everyone, am glad I have found this community whilst searching on google to some answers on my hair being so fine.

I too am on Tamoxifen and soon to start using Arimidex.

I was diagnosed with breast cancer beginning 2013 and had constructive surgery on my breast as well as 6 months of chemotherapy and 1 month radiotherapy. After all my hell my hair has grown back too thin and falls out often. My eyelashes still fall off and my eyebrows are not as thick as they used to be before all my treatments.

My question is the following, is it normal whats happening to my hair? right now am waiting to recieve a hair filler call Topikk and am willing to give it a try for the top of my head where I can see right through my thining hair.

I am working and am using a natural wig which I purchased from Japan online and hardly anyone  knows it as a wig, but to be honest if I could find a way of going natural with concealing my thin hair and willing to give it a go.

I would appreciatte advice as well as input if this is normal during tamoxifen and if arimidex will be less awful than tamoxifen?

I hope to hear from you all soon 🙂

Kess
Member

Re: Tamoxifen and hair loss anyone?

hi I just wanted to say please dont assume that you will be as unlucky. My hair is thinner than before I started treatment, but I am not loosing hair still.
sunnyside46
Member

Re: Tamoxifen and hair loss anyone?

Me too! I've been suffering from hair loss for about 6 months. My hair line totally receded about an inch. And then the joint pain on the tamoxifen keeps getting worse. I still need to take this for three more years. I'm really not sure what to do about the hair! I'm really impressed you are brave enough to shave your hair!
Caz2015
Member

Re: Tamoxifen and hair loss anyone?

Hello, I am new to this site, I stumbled upon it after doing some research regarding treatment of Tamoxifen and hair loss. Glad that I found this site, have now joined, as I believe that the more knowledge that we can aim ourselves with, the calmer within we become.

A little about myself.... in late Nov 2010 I was diagnosed with life threatening breast cancer, I had left breast removed and 34 lymph nodes removed (10 of which had cancer) I had chemo (nearly killed me) then radiation - (got 3rd degree burnt skin from that) (** not everyone experiences this side effect**)... and then went on Tamoxifen - duration of 5 yrs, I have about 18 months to go...

After reading a lot of posts here by other lovely ladies, I just wanted to reply and hand over my experience with this hair thinning, and then hair loss. Much to my heartbreak, I am now losing my hair, too many bald spots to cover now, my hair is shoulder length and for a while I could gaither it all up and wear a messy ponytail to cover the thinning of my hair, but not anymore...alas....it is now too thin and hair loss is happening., so... I have come to the conclusion, that I will buy some caps with scarves (that I wore when dealing with hair loss from the chemo treatment) It is a great look...like being a gypsie 🙂  I am going to shave my head, a number 4...and wear the caps/scarves once again till I am finished taking the tamoxifen treatment. It is driving me insane, having to sweep and vacume the floor/carpets because of my hair loss.

I  am in no way here to scare any of you lovely ladies, I just thought that knowledge is empowerment....And my hair will once again grow back, and become healthier after the Taamoxifen ceases.

Much love and hugs to you all...from a like-minded soul, that knows....and cares xx

anime475
Member

Re: Tamoxifen and hair loss anyone?

Hair Loss is a common problem in any type of cancer and breast cancer also. One of my friend suffering from the same problem she is in second stage and she take Tamoxifen medicine everyday and suffering from Hair thinning problem . She also looking for a shampoo or a condition which stops this problem. Thanks to sharing these products name I must recommend these products to her.
kit20
Member

Re: Tamoxifen and hair loss anyone?

Nizoral is for dandruff but has ketonozole which slows down hair loss. Use only twice a week and condition well

Cyara
Member

Re: Tamoxifen and hair loss anyone?

My hair dresser warned me it might fall out, as her friend's hair did fall out/thin greatly. I have found keeping my hair coloured has helped the condition in general, to be better. My hairdresser recommended it too. As soon as it starts getting unmanageable, thinning, or the roots show through (about every 4 - 5 weeks now) I re-colour it.

kalyson
Member

Re: Tamoxifen and hair loss anyone?

The drug company says hair loss is rare, but they are absolutely wrong. My hair is thinning in the FIRST MONTH of taking it, and the number of posts on the Internet indicate it is a very common side effect.

Of course they don't want to admit how prevalent the effect is.

Most patients don't realize the connection between Tamoxifen and their hair loss to even report it.

Annelee
Member

Re: Tamoxifen and hair loss anyone?

I am on Arimodex, and I am having aching legs and joints, and my hair is getting very thin. I used to have beautiful thisk hair, and it came back nice and curly after the chemo, but not the curls ahve gone and it is thinner - If I stopped the arimadex would it start growing properly again - it is all very detressing - people say that thin hair is better than no hair at all, but I amnot happy with my very thin hair.

simmyjo
Member

Re: Tamoxifen and hair loss anyone?

I was diagnosed in July 2008, had 4x FEC, 4x Tax, surgery & 15 Rads. Started Tamoxifen in March 09. Still wearing wig much to my disgust! My hair is very very thin on top. I saw my onc last week and asked if there was any other drug i could go on to give my hair a chance. I've now started Zolodex, which She agreed to let me try for 3 months. She thinks my [lack of] hair growth isnt due to Tamoxifen, but prior to loosing my hair in August 08, it grew like weeds!!
So am giving it a chance - will keep you all posted.

BertaNYC
Member

Re: Tamoxifen and hair loss anyone?

I am new to this site. I was on Tamoxifen for the 5 years and in October will complete my 2 years of Femara. While on Tamoxifen I did have hair loss at the crown of my head where my skull would show very noticable and my parts were very wide. I was really concerned and self conscious about this. The past 6 months I have noticed my hair is frizzy and with broken hairs sticking out all over the place (like static).
Well my hairdresser brought to my attention that the hairs that I lost during my Tamoxifen treatment were growing back and causing this static look. I noticed that when parting my hair now the separation was not wide and looked like it should.
Bottom line: I know many women who did not follow their oncologist's protocol and got into trouble. Whenever I heard about a recurrence from a survivor of this disease, it came out later rather than sooner that they did not follow their doctor's first choice of protocol for them or just stopped altogether.
The side effect I have experienced from both Tamoxifen and Femara have really dampered my quality of life. I have severe sweats ALL THE TIME, I have tried everything from Black Cohossh Accupuncture and Neurontin. Nothing has helped. I am praying that once I come off the Femara in October the sweats will end.

Janice
Member

Re: Tamoxifen and hair loss anyone?

Well maybe I was wrong to stop, my cancer has come back for a third time, fortunately it has'nt spread and I am getting away with just rads.

I have been given fermara being as I did'nt get on with tamoxifen or Arimidex last time round. Have been taking it for 5 weeks now and so far apart from a few aches not so bad. I have told myself though that no matter what I can't give up on it, its given me a real fright this time. I went 20 years between first time and second and only 4 years this time.

Hope you are all coping well.

Jan

PollyH
Member

Re: Tamoxifen and hair loss anyone?

Hi

I was diagnosed in Dec 2007 and had a mastectomy, lymph node removal (Grade 2, 2.5 cms and 2 positive nodes), 6 TAC and 15 rads. I lost all my hair with the chemo and started taking Tamoxifen 2 weeks after the last chemo (August last year). My hair has been very slow coming back - I only got rid of my wig in May and my hair is still very fine and thin especially on the top. I had curly hair before and now it's straight and grey! I look like a very old woman!! I started taking Viviscal (recommended by Cheryl Baker and Jennie Bond) about 6 weeks ago. The details for it say that you will not see a difference for about 3 - 4 months but friends have said it looks thicker already although I can't see a lot of difference myself but I do try not to look at it much or it depresses me! It's good to chat to other women in the same situation. Will let you know how I get on and good luck to everyone!
Regards
Polly

stocky
Member

Re: Tamoxifen and hair loss anyone?

Hi,I too am experiencing hair loss/thinning. I am really anxious about it now..! I seen an artical in the paper where a 'cure' for hair thinning was being advocated by both Jenny Bond (newsreader) and Chery (thingy, from Bucks Fizz). Can't think of the name of the product at moment but was going to ask my Onc about it. How did you get on when you asked about hair thinning....?

rachelle
Member

Re: Tamoxifen and hair loss anyone?

HI
I am new to this site. I have been on tamoxifen for nearly 2 years and I didn't realize that tamoxifen and hair loss were linked. My son came with me to the hairdresser the other day and commented wow your hair is getting really thin. So that's when i decided to search the net and found that many women are experiencing the samething. Its comforting to know that and that I'm not alone. I use Nioxin products but I guess its not doing the job. If there is something else I should try, let me know.

rachelle

jennyh
Member

Re: Tamoxifen and hair loss anyone?

Hi Rateena,

Sorry your hair is suffering too. I can't seem to get any real information on this, even from the "ask the nurse" service on this website. It seems to be quite rare to get this side-effect from Tamoxifen. Hope you don't mind me asking a few questions - how long after you started taking Tamoxifen did your hair start changing? Did it "level off" or has it continued to get worse? Is there new hair growing all the time? I've also seen the advert for Shen Min but don't know anything about it. I think I saw somewhere that hair grows back after tamoxifen, but again, there's not much to go on. Does anyone else out there have experience of this??

Jenny

Rateena
Member

Re: Tamoxifen and hair loss anyone?

I am 61 and have been menopausal since I was 39 when I had a complete hysterectomy. I had no hair loss from menopause. I have been taking tamoxifen for four years. I had both radiation and chemotherapy in 2004-2005 for stage 2 breast cancer and lost every hair on my body. When my hair grew back initially it was just as thick as it had been prior to the chemo. Gradually, my hair started thinning however, and now it is so thin that my scalp shows, especially in the back of my head and above my forehead. I am wearing scarves in my hair to hide the bald spots. I've been taking "hair vitamins" but haven't seen any improvement. I noticed an ad on the internet for "Shen Min". Has anyone tried this organic "cure" for hair loss? Does anyone know if hair grows back after tamoxifen is discontinued?

I feel great and I hike about 30-40 miles a week, so I am not in ill health. Tamoxifen definitely is the culprit and I can't wait to stop taking it. I have one more year left, and I'm considering just stopping on my own and not telling my doctor. Maybe that would be dumb, but I don't really want to go bald again.

Rateena

jennyh
Member

Re: Tamoxifen and hair loss anyone?

Hi Roxanne,

Welcome to the group! Sorry you've also had problems. It's comforting to know there are others going through the same thing. I couldn't have imagined how distressing it would be to anticipate your hair thinning or falling out and have found it hard to explain to other people not in the same position.

Hi again, Jan! Did they mention any other alterniatives drug-wise apart from arimidex? I'll try to do a bit of finding out before going to the clinic next week.

Got an appt this morning with a gynaecologist to discuss the mirena coil - anyone have this? Onc said it could stay in as although it releases a small amount of progesterone it is very localised. Other sources (including leaflet it comes with)say it should come out... It's not at all straightforward and would like someone to make all the (right!) decisions for me. Feel very unqualified to make any judgements, although was told by a BC nurse that it's personal choice!!

Good luck everyone
Jenny

RoxanneJ
Member

Re: Tamoxifen and hair loss anyone?

hi! i'm a newbie so hello all.

i've been taking tamoxifen for almost two years now and i have noticed a dramatic change in the quality of my hair. it fell out in chunks before i was even diagnosed and so i'm not sure that the fact it still does is tamoxifen related. however, i have found that it has become more uncontrollable sometimes. if i get rained on, i have a full on 'fro going on!!!

Janice
Member

Re: Tamoxifen and hair loss anyone?

Hello again

I have'nt been taking anything now for the past 18 months, only time will tell if I am doing the right thing. I felt I gave tamoxifen a fair go and when I was changed to Arimidex I tried that as well, but my skin was drying out so quickly it frightened me, I assume lack of hormones would do that as it is the opposite to hormone therapy is'nt it.

I got really depressed and decided that quality of life was important, hence my decision.

Its good you have got an appointment next week good luck.

Take care.

Jan

jennyh
Member

Re: Tamoxifen and hair loss anyone?

Hi Jan,

The fact that after 12 months you still didn't actually have bald patches is very encouraging! You're right, it's not just the scars on the outside... I got into such a worry about it yesterday that I phoned the hospital in tears and spoke to a lovely registrar. She has arranged for me to be seen next week rather than having to wait till March, which is a relief. Having got so far without much real impact on my "public" life (apart from the obvious absence from work for surgery) this hit me between the eyes and made me panic. I feel a bit calmer today, but am looking forward to seeing them at the clinic next week. Am I right in thinking that you aren't taking any tablets at all now?

You don't really anticipate all these hurdles when they matter-of-factly tell you what the treatment will be, do you?

Best wishes,

Jenny

Janice
Member

Re: Tamoxifen and hair loss anyone?

I have never liked my hair very much, not natural enough to be curly but too curly to be straight, but it really affected me alot when I found it thinning, if I had only to take the pills for 2 years I may have put up with it but 5 years is such a long time. I did'nt have bald patches but who knows if I had carried on taking them.

12 months later it is just about back to normal whatever that is, but it took a while for the new hair to catch up.

Its not just the scars on the outside is it? its the accumultion of everything, it seems never ending.

Good luck when you see your consultant in March.

Jan

jennyh
Member

Re: Tamoxifen and hair loss anyone?

Hi Timetraveller!
Yes, I see that it IS mentioned as a possible side-effect, along with so many other things! Thanks for the encouragement. Glad your problem has improved. I've left a message with the BC nurse so will see what she has to say.

timetraveller
Member

Re: Tamoxifen and hair loss anyone?

No hair loss or thinning that I'm aware of, but it is listed as a possible side effect on the leaflet inside pack of Tamoxifen. Might be worth giving it a bit longer to see if it settles...I know it is not in the same league at all, but my scalp and hair became very dry when I started Tamoxifen, and suddenly I found myself having to use rich conditioner and shampoo for dry hair which I'd never had to before. After a few months it did improve a lot. But I would definitely mention it at hospital and say how distressing it is.

jennyh
Member

Re: Tamoxifen and hair loss anyone?

Hi again!

Thanks Jan and Aliceinwonderland for your comments. Why is hair loss / thinning not mentioned as one of the potential side-effects? It seems quite an important one to me. Did you actually get bald patches or was your hair just a lot thinner? I'm scared of what might happen next!

Jan - when you stopped taking the tablets did your hair get back to normal? Like you, my prognosis is good and the consultant said at the beginning that they would take me off Tamoxifen if the side-effects were unpleasant, so will definitely ask about that when I go in March.

Good luck everyone - it's a steep learning curve, isn't it?
Jenny

aliceinwonderl
Member

Re: Tamoxifen and hair loss anyone?

Have been on Arimidex since the summer and hair that was very thick and long is now half it volume and still more thinning, really whispy at the front where have lost the length. Suppose I am lucky that I had so much in the first place and did not have to go through chemo, but I do wonder when it will stop thinning. Worse things could happen so not to worry. It is not cause enough to stop the Arimidex, but that is my personal choice.

Janice
Member

Re: Tamoxifen and hair loss anyone?

Hi there

I took Tamoxifen for about 12 months and had quite a few side effects, the final straw came when my hair started to fall out, I changed to Arimidex but was no better. After discussing it with my consultant it was agreed I could stop taking it as my prognoses was good and I was only getting minimal benefit.

She explained that only a small percentage of us actually benefit but of course they are not to know who those will be so tend to prescribe to everyone.

I'am not suggesting for one minute anyone else should discontinue, but I feel it was right for me.

Best wishes

Jan

jennyh
Member

Re: Tamoxifen and hair loss anyone?

Hi Louise,

Interesting that you've experienced the same. I'm surprised there isn't more about it in the forums. I didn't have chemo so it can't be related to that at all. Now that I've thought about it a bit more, I think the hairs themselves are thinner rather than it falling out. As you say, let's hope it doesn't get worse for eiether of us! Thanks for the good wishes.

Jenny

lmlauder
Member

Re: Tamoxifen and hair loss anyone?

Hi,
I have also been having this problem. I have been on Tamoxifen for 15 months now after a year of arimidex. My hair some times comes out in clumps though it comes back it is thinner than when it first came back after chemo. I think it is just one of those things. I told the nurse when I had my check up but she didnt think anything of it. I have always had fine hair but did enjoy having thicker hair for a little while before the tamoxifen. Hopefully it doesnt get too thin for you.

louise

jennyh
Member

Tamoxifen and hair loss anyone?

I have been taking Tamoxifen for 6 weeks and apart from the odd hot flush was thinking that I had got off lightly with the side-effects until I noticed that my hair was at first more silky than normal (no problem there!) but is now definitely thinning out. Has anyone experienced this and does it reach a plateau or could it get worse? I am beginning to panic that I'm going to lose more hair and don't know what to do about it. I'll definitely ask at my next appointment.