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.
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
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
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
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.
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
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.
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.
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
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
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
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!!!
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
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
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
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
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…?
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
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
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.