Im the same just come off 10 days ago after 10 years insomnia trigger finger hips terrible going for hip xrays today as using a walking stick now my right hip gives way and fell a few times. High blood pressure and cholestral hair loss. I too was a hairdresser nothing changed so far but it is only 10 days x
Its seems you are taking about me I have the same problem I finished Herceptin late February and even though my hair was thinking it was still there all of a sudden it all feel out, now its starting to grow very slowly and like you the rest of my hair is thick apart from the top I look like a monk there is no hair folicles at all it looks ridiculous, I am suffering terrible joint pain with the Letrozole I hate them but I know I have to take them I am 74 and went through the menopause 30 years ago now i'm having hot flushes and night sweats I forgot how bad it is, I cannot see my hair coming back it is very embarrasing so I can undertand how you feel love and hugs xx
I also felt the side effects of letrozole. Now, I am not taking it anymore, but I want to do something with the hair loss. As I noticed a lot of persons are suffering from that. I don't want to wear a wig. So, now I am trying all the remedies I find in order to stop the hair loss and to stimulate the regrowth. Recently, I came across this site thehairlossadvisor.com, where I have read about such a supplement as biotin, also known as vitamin B7 that is used for hair growth. So, now, my diet is based mostly on food that contains this vitamin, such as bananas, soy, mushrooms, egg yolks, and many others. I thought this information may useful for you, too.
So glad I found this forum! I have been taking femarra for 5 years, these last 2 years my nails started splitting and my skin is extremely dry. Thought it might be from the drug and am now convinced! The drug pamphlet and their site make no mention of these side affect. Thank you all
I've been taking letrozole for 4 years but the pains are getting worse I keep getting them in different parts of my body my hair has got a lot thinner but I am lucky to have had thick hair to begin with I didn't realise there are different makes of letrozole at the moment I am on ciao is it worth Tring a different make I am so fed up with this pain that is suppose to be cipro
I've been taking letrozole for 4 years but the pains are getting worse I keep getting them in different parts of my body my hair has got a lot thinner but I am lucky to have had thick hair to begin with I didn't realise there are different makes of letrozole at the moment I am on ciao is it worth Tring a different make I am so fed up with this pain
I am 67 and had a masectomy 4 years ago followed by chemotherapy and radiotherapy. I have been on Letrozole since. My HAIR has grown back, but not as full as before and I loose quite a bit of hair everyday when I wash and style it. However the hair seems to grow, so in a way I am relatively lucky. I also use a non-permanent hair colour without ammonia from Clairol called Nice'n Easy and it works very well. Of course you have to do a little skin test before using it for the first time just to check you are not allergic to it.
Regarding my NAILS, they were always splitting in the middle and I had to keep them very short. Recently, after a bone scan that detected some mild Osteopenia, I had to start taking Calcium 800 mg/day besides Vit. D, which I have been taking for some years. My nails are now strong as before and growing well. I believe it is the Calcium. Definitively worth trying it if your nails are splitting.
Hi Bosombud....love the name!
Did you mean you were going to stop colouring your hair? I don't colour mine anymore since treatment / chemo as I felt I didn't want to risk any more hair loss ....there was always those hairs in the plug hole after rinsing the colour off.
I and everybody around me have got used to the grey/ silver colour and it is not unattractive also let's face it after a cancer diagnosis ........so what it is only grey hair!😀
You may be a lot younger than me and yours might not be grey. I am 63.
My GP gives me a prescription for a vitamin B type supplement ( I get prescriptions free as over 60 also re the diagnosis in the UK we get them free for a period of time) and I think it helps also my nails are better now.
All the best and enjoy the wedding!
There are rumours that I may be going to a wedding soon so we want to look our best don't we!!
so sorry to hear you are having a rough time....This forum is a great support to many of us and we vent loads of our worries and feelings , we know that lots of us are having the same problems so we don't feel so alone. It helps to 'discuss' things and share tips.
I have faith in my doctors and take Letrozole to hopefully keep 'it' at bay for the rest of my life.
A lot of people tolerate it well, some less so but it is worth trying if your doctors suggest it, if it doesn't suit you there are other drugs you can try . I don't feel too bad on it and am coping, I just try not to expect too much of myself .
I wish you well .
I am glad to hear the minoxidil is working for you. I am still using it and occasionally I get a new hair or two - these are known as 'lonely hairs' apparently. To be honest my hair is still thinning but I keep using the minoxidil in case it helps keep any unaffected follicles working. I have been using it for over a year now and am not aware of any SE's.
I use the liquid, not the foam and recently found out it can be had for about three pouds less than the prescription price at my pharmacy from an online pharmacy with no postage fees.
I hope you also get referred to dermatology. Have you looked at Alopecia Online? The forum is not as active as this one but it is a useful website
All the best
Yes, the dermatologist has said i can continue with minoxidil in case it might be helping. The drug that might be most helpful to me is one I can't tolerate. I have had steroid injections and am on antibiotics. Treatment is given for a long time because FFA is very difficult to treat.My folicles look less inflamed but I think my hair is still thinning but then I might just be paranoid about it.
The bad news is that if it progresses unchecked then it manifests itself as a huge bald strip from the front hairline towards the crown and can be about 5 " wide in extreme cases. There are many types of alopecia though and some are only temporary.
Please will you post again when you have an accurate diagnosis?
Thanks hugely for the advice, I will take it on board and go to see my gp.
Are you still using minoxidil?
What treatment are you receiving from the dermatologist?
All the best.
It was three years down the line before I started on minoxidil (2%) and after a while i was referred to a dermatologist.In that three years I lost a lot of hair but believed what I was told by BCN's that it would grow back when treatment finished.
The sooner you see a specialist the more chance there is that your existing hair can be saved. I am bald above my ears, have almost no eyebrows, my hairline has receded at an alarming rate and the front, top part is very thin. You won't realise yet but when you lose the hair above and around your ears it makes styling very difficult and windy days become just horrible.
Please don't hang about.
The research that is going on centres around a chap at Guys hospital with some specialist teams in the provinces included.
Please do not rely on minoxidil to solve the problem on it's own. If you have got FFA it is far more complicated than that and it will progress. If you have it, the follicle becomes scarred and can no longer produce hair. It is not a question of hair falling out, it stops growing (for ever)
Good luck, I hope you soon get a referral. To diagnose they take a scalp biopsy. It's nothing at all to worry about.
Many thanks for your response, I have had a quick Google and see what you mean.
I am losing my hair from above the temple area.
I went to my gp and asked for minoxidil ( as suggested in a letter from my surgeon to my gp) or a referral to a dermatologist.
I was prescribed minoxidil 5 % men's foam aerosol. I was told I could have it on repeat prescription.
I have been using this for about a month.
I am quite dubious about this as if it works I will have to continue it or the hair will fall out again.
I will have a better Google in the morning. I just assumed I was the 1 in 10 ( I believe) that has this hair loss with Letrozole.
Are you saying that if you had seen a specialist sooner it would have helped?
I have just got home from the theatre , saw Richard Digance , very funny, it was a good evening so off to bed now.
Once again thank you for your help.
I am sorry to put the same record on again but please ask to see a dermatologist. What you are describing is what has happened to me. You may have a different form of alopecia of course but thinning at the front is not usual in women - even those on AI's
I am diagnosed with Frontal FIbrosing Alopecia and hair loss is permanent and progessive although some treatments can slow it down.there are lots of images on the web if you want to see how your hair loss compares- thats how I found out and got to see the dermatologist.
It started within 6 months of Letrozole although I noticed only my eyebrows and loss of hair on my legs at first. I, too, accepted the 'it will gow back after treatment mantra' for about two years. How I wish I hadn't.
please do have the posibility of this this type of alopecia eliminated or otherwise by specialists.
I have now, along with many other women, offered myself up to the chaps who are doing some research into this disease in my case in the hope of them confirming or denying any link with these drugs. it will not help me but it may help women in the future,
Sorry I haven't been on the forum recently. The minoxidil is a 2% strength - "Regaine" does one for women and I don't have any side effects from it - nice to have something without side effects! The biotin I take is 5000 mcg and I take one tablet every morning. I don't notice anything with my skin or nails, but my hair has improved and doesn't look so thin and even my husband has noticed. But I think I shall have to use the minoxidil as long as I take the letrozole. I feel satisfied that at least I have been able to sort out just one bad side effect of these drugs.
I read your post with great interest. I have been on Letrozole since last July and have noticed my hair thinning at the front. I also have no eyebrows to speak of.
Could you please tell me what strength Minoxidil you are using and do you have any side effects?
Could you please give me any tips on its use?
I have been taking vitamin B , what biotin do you take?
I hope you don't mind me asking these questions.
All the best to you and all the ladies!
I am 12 months on Letrozole, 11 months post WLE and radiotherapy. I noticed my hair thinning about Christmas and was devastated after all the joint pain and joint issues. 3 months ago I started minoxydil and last month biotin and hope that shows some results soon. At least my hair is not getting any worse so far. The last two were recommended by my hairdresser. All we can do is gather information to help sort out these side effects. Best of luck.
I have the same symptoms and recommend Systane Balance eye drops (make sure to get the 'Balance' variety)
As to the hair please ask to be referred to a dermatologist. I am diagnosed with Frontal Fibrosing Alopecia
there is no cure but hope to slow it down with various treatments the derm. is carrying out.
FFA is known to have a hormonal connection and also an auto-immune connection. My blood markers for inflamation shot up after I started on Letrozole and dry eyes are also connected with auto-immune.
Please do not be frightened by all this the drops will sort your eyes out but you do need expert diagnosis of your hair .
Minoxydol is not available on the NHS but a private prescription will cost about £21 per month. Are your eyebrows OK? My dermatologist has not recommended any special shampoo but approves of my habit of using baby shampoo.
Good luck and let us know how you are getting on.
I've been on Letrozole for about 14 months now and I do get stiffness in my joints but not sure whether its the meds or my advancing age! I also get very sore itchy eyes - trivial I know but wonder if anyone else has the same thing? To begin with I seemed to be given a different brand every time but now my doctors surgery ( pharmacy attached to the practice) seems to just stick with Cipla. xx
I hope you are all keeping well, I really hope Blossom Hill is ok.
I have just come home from an appointment with my surgeon.I am 14 months post diagnosis having had WLE,chemo,radiotherapy and now 10 months on Letrozole (cipla). I am feeling a bit low as my newly grown hair is receeding at the front. If somebody could say to me that it wouldn't get worse, I could cope but obviously they can't. I mentioned it to the surgeon and he was very understanding although didn't seem to know much about it. He spent quite a bit of googling it and has now written to my gp with suggestions, i.e minoxidil ( I think that was it, not sure of the spelling) and vitamin B, 'biotin' ....again not sure of spelling.
So I wait a week or so for the letter to get to the gp then will go and see her and hopefully get a prescription. I will report back here in a couple of months if there is any improvement.
Has anybody got any suggestions? The BCN also suggested a caffeine shampoo.
Hugs to all.xx
I had a mastectomy, chemo,radition and they stil want me to take letrozole for 5 years. I am thinking of not taking it. I know of people and have meet a woman that had the same treatments has me and never took Tamoxifen or letrizole and she is 8 years cance free. We say and think we don't have an alternative death or life as thats what we're told by the doctors. who really knows I know 9 woman that never took the drug and are still here doing fine. So what to do? I just don't know...help..
I have been on Letrozole since July 2015 and have not noticed the hair loss, but the hot flushes and aching joints are the worst. For the hot flushes the doctor gave me Clonidine which helps and for the aching joints I have always taken, cod liver oil, glucosamine with chrondroitin. Also have just tried a magnet bracelet but have only had it for a week so not sure yet if it is helping. My knees are the worst - feel like they have aged 5 years ( I am 65) but I am still gardening and playing golf just means more pain killers.
Hiya Dillybub ....welcome to the Letrozole elite club. I havent had many side effects after nearly 5 months apart from this hair thinning thing which all the hormone pills cause. Im going to try Simple shampoo which a lot of other ladies have recommened ......I was thinking of more expensive ones online but will try the cheaper one first.
If you have 15 rads yet - you might find work a little too much so soon after surgery and chemo and your body does need to rest . Its difficult when it hits you financially though and you must go with how you feel but you know the saying " Health before Wealth " .............
I was diagnosed with grade 3 aggresive fast growing cancer and ER+ in September 15. Started with FEC-T, then had surgery two weeks ago today. Wide local excision and full axillary node clearance. Had check up yesterday and was prescribed Letrozole and will also have 15 rounds of radiotherapy in a couple of weeks time.
Was told yesterday that the margins were clear and out of 19 lymph nodes 9 were positive. No more cancer but as it is hormone receptive must take Letrozole.
A lot of you have mentioned taking supplements, any advise on which to take? I do take D3.
I am also worrying about hair thinning as mine has yet to grow back and thats 5 weeks after chemo finished. It is white aand wispy, and my daughter says it feels like chest hair. Any advice on that, should I shave it and start again!!
Are any of you back at work whilst taking Letrozole, I am just going onto half pay so need to get back to work ASAP.
Thanks in advance xx
Hi Lila,lovely to hear from you.I only joined yesterday,I am a year from diagnosis and had surgery,chemo and radiotherapy.I have been on Letrozole since the beginning of July 2015.I do have joint stiffness especially in the morning and if I have been sitting around for a while.I go dancing twice a week and try to walk a fair bit.I also try to be kind to myself and have the odd lazy day.I am sorry to hear about your son being terminal,it must be tough.
I was very scared when I read the leaflet in the pack of Letrozole and didn't want to take them but I have faith in the doctors and want to stay around to be with my grandchildren as long as possible.
My hair is a bit thin around the front hairline,not too bad as the rest is thickening up since the chemo.
So,all the best and look after yourselves.
I have been on Letrozole for a year now and have nearly always had cipla. At first I thought my hair was thinnning and I used lots of hair thickening products but recently it has seemed to settle down and everyone assures me that my hair has not thinned at all. I colour my own hair and it is in pretty good condition. I have not had any problems with this brand and the Sun Pharma one is good too. I use Pantene and Dove shampoo and conditioner, the ones for the older woman, and also Elvive hair thickening serum and I think they are as good as the more expensive brands like Aveda and Lush. The list of side effects terrified me at first and I could hardly bring myself to swallow the first tablet but I have had very few problems. Good luck with cipla.
Hiya Bloss..........Its a nightmare and I decided to be a dirty person and only wash my hair once a week and just scrunch it rather than brush it to see if that will help for a while. My daughter in law is a hairdresser and says there is some stuff she might be able to get for me through the trade that might help. I honestly thought that after 3 months it was going to be ok if I was sensible.
To start with on Letrozole I got a sort of cystitus for ages but that has cleared up and also I feel like I have an army of ants running around under my skin and itchy but can cope with that. In a way Im hoping that this pill will work for a couple of years rather than have to go on the hard stuff like I read on these boards.
I think if I remember from the forum you are waiting for your op and so at the beginning of your journey through this terrible thing but best of luck for everything.
What a nitemare for you, like you say just a tiny tablet, we swallow the same pill and I don't suffer any of the horrendous for you side effects that you have, like already mentioned I've put myself on supplements, quite scared about coming off them but I have to one week before surgery, because I haven't had any side effects apart from the odd joint pain and that may not be Leterzole but age I'm 58, Im worried that coming off the supplements will kick in side effects, however the surgery takes priority, so the supplements have to stop, I will start them again a week after operation, I understand your comments about appearing normal on the outside, its the nature of the desease and like I say sometimes the cure is worse, but we have no option.
Love Bloss XXX
Hi Carolyn, OOOHHH I don't know, I have terrible baby fine, thin hair, I wash and dry it every morning, chuck a can of hairspray on it to stop it seperating out, dye it blonde, (packet done by me at home) I dye it as it used to be dark brown and when it became so thin, that someone once asked me if I was on Chemo, ironic now eah, I started to dye it to mask the dark brown hair colour against my pink scalp, that was 20 years ago.Considering it dyed, washed blowdryed and glued every morning its a wonder I have any hair, cancer or not!!!! I'm just going into my 4th Leterzole month, Ive put myself on loads of supplements, to try to minimise the side effects that have been reported, Ive been ok compared to others, I may have the hair loss to come, if I do I will have to get a wig, but, as I speak I've noticed no difference in my hair, I think by the users on this site that there are alternative to leterzole drugs that you could ask for, what about that caffine shampoo and there is another expensive, alpercian (dunno if I've spelt that right) shampoo and another called regain (may be able to get it on prescription), there is a leterzole thread on here, maybe they have advice, hope it settles soon
Love Bloss XXX
One of the things that my consultant said to me was that hair loss is probably under reported by BC patients.
My advice is that you tell your care team pronto and do not be fobbed off with 'it will grow back after treatment' Also visit your GP with a view to getting referred to a dermatologist. If lots of us keep turning up in clinic perhaps more serious attention will be paid to this upsetting aspect of treatment.
From what the GP and dermatologist tell me there are very few things that are (only sometimes) effective in treating hair loss and there are so many different types/causes of alopecia that the sooner the reason for it is established the more hope there is for the best outcome.
Aagh I have been Letrozole for over three months now and yes got most of the side effects and dealt with them . I was aware that it causes Hair thinning and so had my hair cut shorter and stopped having my hightlights to give it the best chance.
The past week my scalp has felt really itchy and when I washed it in shower this morning had quite a lot of loss for the first time. Is this just the pill kicking in or is this hair loss going to continue as its scary as at least with chemo you know it will grow back after but I could be on Letrozole for ages and cant continue with loosing that much every time I wash it.
Any magic products recommended to preserve it ?
Thanks Bloss - good advice . I dont mind if I can just stay on the same brand so I get used to the side effects. If I get another brand this time - will go back and get them substituted.
I remember the Tamoxifen thingy back in 2004 - once I got the original brand back I was fine - its all down to money and cost I suppose as these drugs are very expensive.
As you say its the difference between Poundland and John Lewis !!!
Hi Carolyn, Tell the chemist your not a poundland shop reduced to clear, tell them you want the same brand every month, thats what I did when they subsituted mine, I checked with my doctor first to check what he had prescribed, the fact the chemist decided to gve me a subsitute brand, NOT MY PROBLEM, anyway they have now put a note on my file that I will only accept the same brand, wonder how they would feel if it was them or one of their loved ones
Love Bloss XXX
Hi Jan, Like I've always said the treatment is worse than the desease, I've been O.K. (touch wood, fingers crossed) on Leterzole, which is why I wasn't about to go on a roulette wheel of different brands, not that any of us wanna take it, but the side effects that are listed, well I just havent had em, Like I said I take supplements, but whether they work or its luck, who knows. About to ditch the supplements, doctors orders before surgery, but gonna start on Vit C, high doses in America (where else???) support that vit c helps form collogen and in America is given in large doses pre op for 3 days, god I bet these doctors hate us knowing all this,
Love Bloss XXX
Thanks Jill - might try switching them to night time - hadnt thought of that. Lifes not easy wth all these pills is it? Im a person that doesnt like any medication so I do feel trapped.