I have just completed 10 years of hormone therapy and was told that Nice guidelines don't recommend more than 10 years so I was intrigued by you continuing after 10 years-did they say why you are continuing?
i was on Letrozole also but it just didn’t agree with me , now I’m on the same as yourself... how long have you been taking it for as I just started today, I’ve read all the side effects and I’m like yep ok, hope you are feeling better chick good luck.
Hi. I've been on Letrozole for 10 years, and have what my GP cheerfully described as "male balding pattern". Great!!! The nano fibres are good to thicken what we have, I have found... otherwise, I'm much more self-conscious about it than others, I think.. Just been taken off Letrozole and put on Anastrozole, but the leaflet says the same about that... 😥
Thank you, yes do try the Curcumin, I have recommended it at work to customers who have undergone treatment, and they have noticed a real difference.
My hair is curly, needs cutting every month, it grows very quickly now.
I remember that after ending chemotherapy my hair has also grew strongly and even thicker than it was before the treatments. However, my normal hair (thickness and flat shape) slowly replaced this thicker and curling one. And then a slow and progressive process of hair thinning and loss has developed. Now, after 2 months with Letrozole, it is getting visibly worse.
Thanks for the suggestion about the curcuma.
I finished treatments in March 2019, and was discharged in July 19.
I have been on letrozole since March and my hair has been growing lush and thick.
I am taking Curcumin supplements which help circulation and strengthen hair.
Hope this helps.
What is the name of the shampoo and where can I get it. I have had terrible hair loss since on this medicine since October 2018
Hi. I have been on letrozole coming up for 2 years, I’ve had just about every SE possible, including hair loss. I found that the hair loss settled down after about two months - although note I havent stopped taking it. I did use the shampoo in a green bottle (called planter I think) it’s a bit expensive but I definitely think it helped. must admit I do have very thick hair so losing some of it has done me a favour. It’s back to normal now. All the best.
After several months of taking anastrozole I developed a rash all over my body. My oncoligist said it was not a side effect he was use to seeing. He then prescribed Letrozole and within weeks I develped a rash again. I stopped taking it but even after being off of the drug for a month now I have noticed my hair has thinned and even saw a handfull the last two shampoos. I am not sure if vitamins or minerals will help restore my hair. I noticed a couple of things others in this forum email thread have had success with but not sure if they are drugs. please respond on what you used to restore your hair growth or how long your hair thinned after you stop taking the drug. thank you
I'm taking Letrozole and have experienced some shedding but I've had far worse hair loss before cancer due to a blood condition, and found the Viviscal supplement helped but don't know if it can be taken with medication. I've also taken Sun Chlorella A in the past and continue to do so now as I've been told by a pharmacist it's safe to take. Did show it to my Oncologist, hadn't heard of it but after reading the box, said it was okay! I found hair loss soul destroying and went to see dermatologists who specialised in hair loss and the trichologist Philip Kingsley, he was very good and said one of the most important things anyone can do for their hair is to eat some protein at breakfast to feed the hair. Lucinda Elleray is also worth looking into if things get bad, not cheap but her hair pieces and clip ins are excellent. I have a friend who lost a lot of hair after having too many extensions, she wears one of their hair clip ins every day and you would never know. Hope this helps x
Hello after 16 months on letrezole I noticed my hair thinning and a friend suggested Nourikrin tablets. Mineral and seaweed based and my hair has stopped falling out and settled down.
My hairdresser said once it had started thinning there was little anyone could do...Oncologist said it happens and Dr suggested iron tablets and a fungal liquid neither helped.
My hair hasn't returned to it's once glorious life and thickness but at least I'm not finding it everywhere and hair balls in the plug hole.
Hi Eileen -get your doc to write Accord only on the script....I had to do this as was allergic to some of the brands. Then shopped around -found boots pharmacy very obliging & they get the specific brand in for me every time. Xx
I find Accord and Cipla both Ok but I was given a dutch brand called POM which was horrible. Asked pharmiacist- ( attached to our GP surgery) if I could always have Accord and she said they just get given whatever the wholesaler has in stock and they can't specify! Next time I had a much more sympathetic pharmacist who said she would request it but she also told me that Accord and Cipla much smaller producers so can be more difficult to get hold of. So I guess big pharma call the shots as usual. Good news was though she did manage to get Accord for me this time.
Hello ladies I too am taking Letrozole for 5 years. I have taken it now for about 16 months. During that time I have had the brand changed 4 times. I am currently taking Manx! I am finding that my hair is more noticeably thinning on this brand! Not as bad as the chemo but just hoping it doesn't get worse! My nails are still very bad and wondering if that is also the Letrozole? My finger nails have white lines down them and several of my toe nails have white spots on like a blob of paint!🙀
Is there anyone else suffering from nail issues???
Mush don't be hard on yourself never underestimate what we have been through and what we have to live with a result! You are not alone in how you feel, some days I feel very lonely. I currently live in Cyprus where I was diagnosed and had all my treatment, with my husband who is a workaholic! My children and grandchildren all live in the Uk and France and I don't have any close friend here. If it hadn't been for this forum where there is always someone to listen to you and understand you I would have been very depressed! Hope you are having some better days!💐
Hey Mush -hair is a huge part of our self image. It's also on show for the whole world to see. I hate looking in the mirror and seeing my thin hair and balding top.
I decided to get wigs -now proud owner of three all different. Feel so much happier then without. It's not a proper solution but it's far better then the whole world also seeing it. Also can wear hair of any length I fancy. Yesterday I bought a wig sporting shoulder length hair -love it! I still don't feel great but have to admit the wigs are taking years off me. There are of course issue with wigs such as hot in summer but in the whole I feel so much better when wearing one -feels like my feminity has been returned.
My Oncocligst feels that after all this time my hair loss is due to Docetaxel and is likely to be permenant. I am doing some treatment on my hair that is experimental but not much/if any sign of change after two months. Since Docetaxel I can feel the new growth as prickly when touching my scalp but it never progresses. It's like my hair has got stuck in one stage. I am waiting to see a dermatologist but I know from my own research that apart from this one treatment which isn't proven there is nothing out there to return my hair back to how it was pre-treatment.
I do think I should've been told that this can and does happen.
I can't believe the amount of hair I have lost in just a few months. I can't even look at myself in pictues anymore and do not even like taking pictures anymore. My hair is so straggly and looks terrible. Even the texture has changed to a very dry burnt looking texture and I do not even wash my hair every day. I can't go mor than 2 days without washing it because it becomes very flat and nothing can be done with it at all.
I had lost my hair to chemo when I was 44 because I had leukemia and I beat that, but my haor came back so so nice. Now this crappy cruel disease hasd me on letrozole and I am losing my hair again. Excpet it's in a different way and I can't even cut it really short because first I wouold look teririble and secondly it's comdition would become worse. Seems like whatever weight there is is halping to weight it down.
Yes, I am extremely mad about this diagnosis and the fact that this is now for life, Let's face it, if your haior grows back after treastment..................that is not the case since this treastment is for life, hiowever long that is. I am sorry to vent but am totally alone this time around and am very depressed over all this. The pills are suppose to give me some kind of quality of life but I feel like I am becoming more of a prisoner so how am I having any quality of lfe. My oncologist wants to put me on anti-depressant meds but I refuse. I was on I brtance also and weas taken off of it since it was doing a very bad number on my mouth and throat and tongue. He wants to put me on something valled Everlomus ( something like that) I am afraid, I do not want to have any swelling or weright gain. I will not deal with that. It took me too many years to get myself to a place where I liked how I was and now this disgusting thing is tearing me apart.
It actually makes me think about all the treatents. If they hurt you so bad and the side effects are terible then really are they doing more harm in the end,
Sorry but I am in a bad way with all this. I know I am not dealing with this in a positive way.
Thanks Anna. I think the lady who spoke to me was nice and am sure she didn't mean to be so insensitive but I came off the phone feeling really let down and hurt -certainly not supported. Am not keen to ring the helpline again about this matter to be honest in case I have a similar experience. However if breastcancercare wish to contact me they are very welcome.
There are thousands of women on these endocrine treatments, many of us taking them long term. I really do feel it's time patient literature was reviewed. The stats I was quoting was from medical research carried out in 2013. No one talks to you aabout hair loss not related to chemo it's like a taboo and one has the feeling it's not really meant to bother us. Surely it would be more helpful if it was explained why this happens, suggestions were put together about how to manager alopecia, where to go etc....rather then it not being acknowledged?
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well when I looked up the research on pubmed up to 25% of women get alopecia as a result of endocrine treatment! Letrozole specific is 2.5%, tamoxifen 6.9% which by my reckoning is a fair few of us! More common in breast cancer treatment and much under reported the research said!
What really annoys me is the literature that they gave me did not mention it apart from a possible bit of thinning hair -thinning indeed it's far worse then that! If only! I phoned breastcancercare today to comment on this and ask them to update their booklet on Letrozole to reflect the truth! I didn't feel I was heard but was told that that if they did that they were worried people wouldn't take it! Sigh....surely we should be informed properly before taking medication not be in the middle of it finding out by chance. Sorry Grrrr -moan over. Hope the moderators read this post!!
ok the chap I saw was Daniel Fields. He is developing his own treatments and has had a lot of success but it is all in the early stages as of yet so experimental. Frankly it's an easy treatment to apply involving daily spray and weekly treatment....not hard to do! Cancerhair.co.uk are going to be running a trial with his treatment..so you could contact them -they spoke of his work as being very exciting. He explained to me that Letrozole causes hair follicles to hibernate resulting in thin fine or balding head. My hair was classic of it.
I believe that once we finish the Letrozole and its out of our system the hair will start to grow again. But am on it for five years so not a great thought with another 4 year to go. No one has offered me a long term wig for example and the helpline on here seem to think as its only 'cosmetic' I wouldn't be eligible for one on the NHS! Cosmetic it might be but psychologically its devasting! I found that comment very upsetting. I have no eyebrows and a few short eyelashes still. Surely that can't be right?! I have to endure comments from people around me -someone at work said -'haven't you got a wig!' Charming! Without make up etc I still look like A chemo patient!
Anyway rant over. Fingers crossed Daniels treatment works -he was confident of his product so we shall see!
He also showed me how to disguise some of the baldness and how to use hair filaments which does help.
It sounds like we are at the same stage of Letrozole.
I have posted about this on another thread ( can't remember which one but maybe that is another side effect of the medication!)😂
I feel the same as you and also if somebody could say that my hair won't get worse I could cope but of course nobody can say that!
About two weeks ago I started using Regaine, I am not expecting much but live in hope that it might help.
I was surprised that my GP has prescribed it for me, the 5% men's one.
I am a bit worried about the side effects of that as well .
What treatment has your hairdresser suggested?
All the best to everyone
Am 15 months past chemo -FEC-T 6 rounds. Had the works radiotherapy, Hercpetin , mastectomy and put on Letrozole a year ago. My hair has sort of returned at the sides but is very scant on top HArdly grows!. So fed up with it. It's fine and infact is getting thinner not thicker. I went to a specialist hairdresser last week who told me that it is the Letrozole that is doing the damage now and the cause of my ongoing hair problems. He has a treatment for it which he has had good success with getting hair back so am still hoping. Well what have I got to loose?? Haha.....
Anyone else had this problem? The hairdresser told me it is common problem on Letrozole. I looked it up on pub med and sure enough there is recent research showing exactly the type of balding I have -all due to Letrozole. I have another four years of treatment yet so at this rate I will be bald as a coot at the end. Lovely!
Dont get me wrong am grateful for the treatment saving my life but wished I'd been told about the baldness cos then I could've prepared myself for a fair few years of wigs! Lol...rather then keep hoping it will come back!!
Be be good to hear from others with this problem.