I was diagnosed in March 2010. I had a MX, FEC-T chem followed by 15 x radio. I was prescribed letrozole in Novemember 2010 & have therefore been on it approx 2 years. Initially i suffered all the usual SE’s eg hot flushes, terrible stiiness in all joints but miraculously this summer all the stiffnes seemed to vanish over night. It coincided with the time I started taking a single cod liver oil capsule each day but it may just be a coincidence. It might be worth trying for anyone who is suffering as my stiffness was barely tolerable at times so I understand. I feel really well generally but unfortunately I am now experiencing a new SE which I find acutely embarrassing & is getting worse very quickly. This is baldness over the top of my head. Its effectively male pattern baldness. The remainder of my hair is very thick, if much frizzier than before chemo. I am extremely distressed about this & cant get the onc to take it seriously. I know it is a side effect but I could cope better if I thought my hair would return to normal after I finish with the drugs. Does anyone have similar side effects? If so what have you been able to do about it? Has anyone finished letrozole & has experience as to whether the hair returns to pre- treatment condition. Any feedback gratefully received
I’m sure your fellow forum users will be along shortly with their help and advice, but in the meantime I have put for you below the link to the area of this website where BCC’s Headstrong service is discussed which I hope you find helpful. Also, please do give the helpline here a ring, the staff are here to support you. Calls to the helpline are free 0808 800 6000 lines open Mon-Fri 9-5 and Sat 10-2
Thanks Jo for your comment. Obviously I lost all my hair 2 years ago with the chemo & whilst it was not pleasant I knew it was coming & I dealt with it fine on the basis that it was a short term thing & my hair would return to normal when the chemo finished. My hair came through just as thick as before & the same colour but very frizzy. I learnt to cope with it & as it grew it settled down into more of a wave. What I did not expect is this creeping baldness which I have really only noticed this summer. At first I told myself that I was imagining it but now there is no doubt & a trichologist has confirmed to me last week that I have male pattern baldness. Clearly the inhibiting/reduction of oestrogen has caused the testosterone to increase hence the baldness. I am so distressed by this - it is the worst thing that has happened during the whole treatment & I find it harder to deal with than the initial hair loss & loss of my breast. There seems v little choice for me as I only have the option to swop to one of the other 2 AI drugs or come off the drugs altogether. It sems to me that the other AI drugs are likey to have the same effect but would welcome any comments from anyone that has swopped drugs because of this SE. So I am caught between the ‘devil & the deep blue sea’.
Hi Notverybrave - I am on Arimidex and my timescale is similar to yours - Dx Jan 2010, had mx and chemo/rads and lost hair - started Arimidex in Sept 2010 and have had some joint pains and flushes - nothing too bad and have coped ok just a bit of stiffness in the mornings - but I noticed about 8 months ago my hair seemed to be ‘thinning’ - it came back fine after chemo so it was new to me - like you at first I thought I was imagining it but it is clear that is receeding at the front and as you say is like a male baldness pattern. Like you it feels like a minor side effect at first but the thought that I may lose my hair again is very troubling - my hair is lovely and thick elsewhere. It clearly is the hormone tablets and I have another 3 years on them and by then it might be too late! I have spoken to my hairdressers who arranged for me to see a specialist on hair loss. He told me that the hormone tablets are probably affecting the growth in my hair molecules and has given me some lotion to put on my head - I use it about 3/4 times a week and springle it on (like vinegar) before I go to bed - its supposed to get right to the root of your hair and promote growth - he said he has a good success record with it - his customers are usually men though. The lotion costs about £28 and lasts about 4 months - I started using it in September and he said it would be a few months before I notice any difference with regrowth so am still waiting to see if its any good. Its not a huge amount of money and I should know by the new year if it has worked. If it does then I will certainly re invest in another bottle. If you are interested let me know and I will pm you the product name - you can buy it at hairdressers or on the internet.
Hi Notverybrave / saffronseed
I know how you both feel, I lost all my hair during chemo in 2011, and started on Anastrozole/arimidex immediately after in Aug 2011, and my hair has failed to return in any significance, and what I have is in a male pattern. (I did start a thread about this a couple of weeks ago) Really frustrating as I had very thick wavy hair pre-bc. and I have another 3.5 years on the AI.
Saffronseed, does your onc. know you are trying this lotion? Only I seem tro remember reading somewhere that a well known male hair restorer is not for chemically/medically induced hair loss??
Hi all
About 9 months ago I lost a strip of hair at the front and immediately blamed letrozole. I discussed this with my onc who suggested tests for low thyroid as that can cause hair loss, when they came back negative we looked at Adjuvant Online and agreed I would stop as the benefit was quite small. (I had other troublesome SE’s the worst of which was dizziness and joint pain). However, my hair didn’t get any better so I spoke to my GP again and she referred me to a dermatologist who eventually diagnosed lichen planus which causes something called frontal fibrosing alopecia. I now use a prescription steroid lotion to try and halt the spread, but the hair will never come back. My dermatologist says it is very common in post menopausal women - think of all those old ladies you’ve seen with short permed hair and very high foreheads? However, lichen planus is an auto-immune disease and when I saw my onc today for my routine appointment he was curious to know what triggered it, and I have to say I never asked my dermatologist if it could be connected to the cancer although obviously he knows I’ve had it. I didn’t have chemo, I had surgery and rads.
Hair loss is a medical not a cosmetic problem so don’t suffer in silence, see your GP and get referred to a specialist dermatologist through the NHS and find out what is really causing it. Both my onc and my GP have been incredibly sympathetic. I actually saw my dermatologist privately first as there was quite a wait, but he then put me on his NHS list as he wanted to do a skin biopsy and he couldn’t see why I should have to pay! Now I know what it is I’m much more comfortable with it, and my lovely hairdresser has given me a new style to help disguise it.
Foxy
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I have spoken to my med team about my lotion and they said there was no problem with it - but I haven’t specifically ask my Onc - its a good thought nannabarb I will do so as I don’t want to cause myself any problems. Foxy glad to hear you have a sympathetic team - so far mine aren’t but I haven’t pushed it - its like I have to ‘put up with it’ but I may trot off to my GP and get his advice as so far he has been very supportive. I do have some very dry patches on my forehead and did mention these to my onc and she said it was a skin problem nothing to do with my chemo treatment - I probably have been too passive in all this (not wanting to be a nuisence) I think i will be more assertive - I will let you know how I get on. x
I’ve developed male baldness pattern hair thinning as well, the temples are getting sparse and the crown is becoming obvious. My hairdresser cut me a completely new style with a depp fringe covering the temple area and shortish bits over the crown which seems to hide it well. Just hope it does not get much worse, as I can understand all you girls who expereinced the dreaded chemo hair loss scenario.
Hope it goes well, I think my GP takes the very reasonable view that I’ve had enough to put up with without losing my hair too although like you I originally didn’t want to be a nuisance.
Foxy
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Hi saffronseed
thanks very much for your post. I am very grateful because it helps, as always, to know the same thing is happening to other people altho I am sorry that it is. I had already deduced that there was little point in changing to another aromatose inhibiter drug as they all work in a similar way & therefore the SE’s are likely to be similar although I know there may be some differences. The point is other than this hideous hair loss I feel well. My breast nurse has referred me to a hair clinic that specialises in cancer hair loss. they have devised a 10 week programme of treatments which is really designed to get the scalp into the best condition for hair to grow altho they agree if it is male pattern baldness, presumably caused by increase in testoserone due to reduction in oestrogen, the treatment will not work. I have been given all sorts of potions to put on my scalp at night. These are quite expensive as is the once a week scalp conditioning but they say that if there is no sign of new hair growth after 8 weeks they will refund the treatment costs. This is v generous even though I will have paid out a lot on the products. I am willing to try anything because I am so deperate but I really have to say I would be astonished if it works. I just hope someone may be able to give me some hope about whether my hair will regrow when treatmnent ends as I have very depressingly read that once the 'hair follicles switch off for any length of time they dont function again. I think i am going to write to the manufacturers of letrozole as they must know hair loss is a common SE & what the long time effect will be. Very many thanks to everyone who has posted. xx
Very interesting thread, all comments are very helpful. My onc is seeing me again 3 months after last check up rather than the 6 it should have been, so they can assess whether it is worth change my AI. But if, as you say, they all have the same se’s I might ask if I am a candidate for coming off it. The thought of my follicles swithcing off for good is not one I want to contemplate right now.
Can we all keep in touch to see how we all get on over the next months/years?
xx
I’d like to keep in touch too as I seem to have the same male pattern hair baldness. I’m taking anastrozole. One thing I’ve noticed is that other women have been told how weakly or strongly ER positive the cancer was and this was never discussed with me. I’m seeing my oncologist on the 17th November and I’ll ask a few more questions. I expect I’ll keep taking the tablets regardless but it would be nice to have more information. Maybe the SE’s outweigh the benefits of zapping all my oestrogen. Another of the joys of anastrozole is it could affect bone strength and I’m off to a bone densitometry appointment today. They told me to take of list of medication with me and I’ve just written down Anastrozole, Lanzoprazole and Lisinopril - felt like I was writing down the names of my kids! Pauline xx
Hi Your oncologist should be offering you Tamoxifen as an alternative if the hair loss is distressing you. I was offered this when I suffered different side effects.
Thanks everyone for all your posts. yes it would be good to keep this thread going. In many ways my current hair loss is much more distressing than the chemo total hair loss because I knew that was coming & it would only be temporary. This current hair loss is more unexpected & I really worry that it could be permanent. On my paperwork with my letrozole tablets it lists hair loss as a side effect for 1 in 10 people taking it. well i am that 1 in 10!!! sadly! Once I have seen the specialist my GP has referred me to I am going to see a dermatologist also but the bottom line is I doubt any one will want to change my medication & really I dont think I do either as I feel otherwise well. I just would like to know whether there is a reasonable chance my hair will return to its old self after the treatment ends- that would at least make matters easier to deal with. I propose to write to the pharmaceutical manufaturers as they must have some idea of the long term effects. Stay in touch. Let me know if any one has any tips. I have acquired a collection of wide hairbands in an attemt to disguise the central thin areas. x
I also have male pattern baldness which I am finding very distressing. I finished chemo last March and immediately started on Letrozole. My hair stated to grow back and whereas the sides and back continued to grow the whole top section grew much more slowly and patchily. I have had the sides and back trimmed but the top remains very thin and short. I am as a result still wearing my wig when I go out because I am embarrassed by the amount of pink scalp showing through my thin covering of hair on the top. I have mentioned it to various professionals when I have had check ups etc but no one seemed that concerned. And I am now discharged from the Christie hospital and my oncologist altogether. I have also been having Herceptin at home every 3 weeks (last one tomorrow. Hooray !) and was told to wait until that was finished as it might be the combination of the drugs that was inhibiting my hair growth. But having read various things on the web I am pretty certain that my male pattern baldness is due to Letrozole and that it will probably not change much while I am taking it. Quite depressing but if it keeps the cancer away I guess I’ll just have to live with it. I don’t really have enough hair to make any kind of style or to cover over the thin bits so I will continue wearing a wig.
I wonder if it would have been better to know this possible side effect in advance or not. I was not given any information about this type of drug when I started it but just given it. Lots of people keep suggesting various thickening shampoos etc but if the follicles are not working I can’t really see how a shampoo is going to help. I have always had quite thin hair and my father and brother have male pattern baldness so I wonder if that makes me more vulnerable. It does help to know others are in the same situation.
Has anyone on Letrozole who also had Herceptin found that hair grew any better when Herceptin ended?
I was diagnosed in Sept 2011 and started chemo in November: 3 Tax with Herceptin then 3 FEC. Resumed Herceptin in early March and started Letrozole 2 days later. I didn’t lose all my hair with chemo - basically just the sides. My hair came back very slowly while I was on Herceptin and was very fine but had my first haircut 10 days after final infusion and about 10 days later it looked as if all she had cut off (and there was a fair bit ) had grown back. My hairdresser expects me back next month and I think that is a strong possibility. I did have very thick hair before and think this is why I have been very lucky so far.
Really feel for all you ladies with hair problems. Big hugs to you all.
Hello How is everone getting on ? I think its 3 years on now, and I"m gettign really worried about thinning hair and male pattern baldness, been on Letrozole for 5 years , scared to come off but thinning bones and hair is no joke and benefit for me staying on letrozole is minimal.
Thing is - where the hair has gone , will it come back ? grateful to hear your experiences, thoughts. Many thanks . Chris
I was discharged last Monday and taken off letrozole and just had a week on tamoxifen which I have to take now for another five years my hair has gone really thin always finding it on clothes costs and jumpers I’m an ex hairdresser so I know it is the letrozole also have me a trigger finger these drugs are all poison inmy eyes but what’s the alternative death or a life of agony!!
I have been on Letrozole for 3 months now and prepared myself for hair thinning by cutting hair shorter and giving up my highlights before I started . I notice there is a bit more hair loss after washing and will be keeping an eye on it . My hairdresser says there is a good shampoo that promotes hair thickening if I need it in future so maybe an option.
I notice though that my eyelashs and eyebrows seem to be getting a lot thicker though and my legs need shaving more !!
I am in a different situation than you but I have found that all treatments have side effects of some sort - that is why I avoid even paracetamal and manage with a hot water bottle for the aches and pains !!
The side effects listed for Letrozole are scary and I wish I did not read them but of course I did. I have had 3 months worth and every time have a different brand name and they do vary a lot as Im sure we get palmed off with cheap versions.
I remember when I was on tamoxifen …the cheap brands were a nightmare but once i went back to the proper brand was fine . The same with Arimidex too. Im not sure about Letrozole as it was originally Femera but whether its still available under that brand I dont know.
Its a case of try it and see but we have to trust our Oncologists to give us the best treatment as possible to suit our needs and I try the mind over matter thing with side effects !!!