For the first time in years when I picked up my prescription a couple of weeks ago the brand had changed
within days I was stiff as a board. By coincidence I rang a friend today who lives in a different part of the country, also on Letrozole and also uses Lloyds chemist. She reported similar problems from the change to Dr Reddy brand. I've been OK on Sandoz and then Accord but Dr Reddy seems not to suit. I can barely get upstairs. I am going to call at the chemist to report and also to ask the doctors if they can help. Anyone had (extra) problems with this brand?
Hi could anyone help I've been taking letrazol for a few months also had my ovaries removed in April , my oncologist suggested cod liver oil with omega 3,6,9 for my joint pain can anyone advise which ones to get please, just a little help with the menopause symptoms I've been using a lady care magnet for a while it definitely help with the mood swings ,reduced my flushes I would recommend to anyone who can't use any get products such as me .
I have just been discharged by my oncologist after surgery,chemo,radiotherapy, 5 yrs of Tam and 3 years of letrazole.
when i was diagnosed I had a very agressive tumour and was given a 30% chance of survival. that was 8 years ago.My advice is take any treatment they offer and stick with it. Get rid of as much stress as you can in your life(not easy,I know) and don't admit that it might beat you!
All best wishes,
Good luck seeing your onc harebell , I hope he/she will be able to advise you about the rashes / itching . I read another post somewhere where the lady was suffering rashes , and I believe her onc has reffered her to a dermatologist which is helpful.Hoprfully yours ccan do the same for you ,because as you say , you cannot be taking anti H for the next five years, or maybe you can , at least you´ll get some answers .
Words ,not too bad , but all of a sudden I´m forgetting people´s names ....really embarassing !
I have just had chemo, mastectomy and rads x 25. Thanks for the info on cod liver oil - I will try that. My hair is just growing back and my finger and toenails are still in pretty bad shape so that is really helpful. I am taking vitamin D as it seems that Letrozole can affect bones and cause osteoporosis, and anyway, apparently most people in this country do not have enough vitamin D from the sun alone.
I cannot sleep tonight because of side effects of Letrozole. I started taking it at night so that I am not so badly affected in the day when I am trying to work or seeing people. I get a terrible rash after taking it and then incredibly itchy feet, legs, back etc. I have just taken some antihistamine and hope this will help. Though I do not see how I can take anti H for the whole course of the next five years. I am seeing the onc for the first time since taking Letrozole tomorrow and will check this out. I also get nausea and incredible thirst and dry mouth. I had hoped all this would settle but it has been a couple of months now. I have had a bit of joint stiffness but find that this goes away with movement, walking etc. And words - well yes ....gaps. Oh dear. All best wishes Harebell
Hi, I have just signed up to the forum. I was really interested to read all your comments and identify with all your side effects!! I am on letrozole following a mastectomy, removal of lymph nodes, chemo and radiotherapy. I was told by my oncology doctor to try taking cod liver oil. I did and while I still have some joint stiffness especially in the morning, it has made a difference. Also I am sure it helped my hair to grow back nice and thick and also my nails and skin are in good condition too. I find I lose words though - I know what I want to say but somehow the word just escapes me. That can be a bit trying. I have just had my first annual check up and its a good result.
Ive been on letrazole for about 6 weeks, and have that anxious feeling and down spiral moods already. Arimedex did the same thing. unfortunately i cant stop letrazole as its a test to see if hormone will hold my c,as been on chemo capcitabane for a year so havin a break from that and tryin hormone tabs again....
Fortunately apart from the anxiety and poss tinitus im not sure - i have a strange feelin/sound in my right ear, but hopefuly its nothing, but am fortunate not to have bad joints or muscles and in fact rejoined the gym this week and have run miles on the treadmil!!!
roll on september when i have my scan to see if its workin....it better be!!!
ps. oh and iv just celebrated my first weddin anniversary! and this time last year i never thought id be here, so am well chuffed with myself :-) yey!
Kris - I was on HRT for many years and also came off when diagnosed, then I started Letrozole. I suppose we are all different as far as side effects go. I am sorry you are unable to find something to reduce the symptoms. As daisyleaf says, though, it would take an awful lot to make me give up on it.
yeah Kris I am now a very sweaty woman too!
I always have a linen napkin in my handbag to wipe the sweat, but my back sweat always shows through the clothes. I don't know if thats the letrozole or the fact that I've had an oophorectomy so have a sudden menopause as well. It will take a lot to get me off letrozole, though
The actual brand ,Femara is , I beleieve very expensive . The letrozole I get comes from one of two laboratories , and the spanish version is cheaper than the french . Why ? I don´t know , but most pharmacia´s prefer to give the spanish , cheaper version .These are not called Femara , just branded letrozole .
Yes I´ve tried evening promrose oil , dong quai , red clover , sage , you name it I´ve tried it , and am still taking it , but it makes no difference to me , perhaps to my moods and mind state , but does´nt touch the sweating , persistant diaorrea ( spelling! ) cramps.
When I did go into the menopause at 40 , it came with a vengance and i went onto HRT . I think the combination of coming off the HRT so abruptly , and then taking a chemical combination to completly de oestrogenise my body , it´s such a double whammy that I´m not suprised at the intensity of the sweats , but pleasant it is not !
Kris - I thought that Femara was the only version of Letrozole. I didn't think it had been around long enough for there to be generic versions. There aren't in the UK, I am pretty sure.
Have you tried Evening Primrose Oil for the sweats? I haven't had any sweat problems. I have been taking it for years. You would have to give it a good trial, though.
Thanks daisyleaf - I don't work and my children are also old enough to look after themselves, so I can cope with quite bad nights too.
I'm wondering if there is any correlation between se's on letrozole, and how bad menopausal symptoms were before BC. Mine were quite mild - I got hot flushes but not night sweats, so maybe I'll be lucky.
Hi Im on letrozole since feb this year. No side effects until four months into the treatment then muscle and joint pain infact I feel like I've aged 10 years as it takes me a few minutes to get mobile as my joints are so stiff. I was told by the oncologist that the side effects dont last long! I wonder how long this will last?
I find the night sweats are managable , though disturbed sleep is unwelcome , but the daytime hotflushes and sweats are awful . The sweat dreips off my face , hair , elbows, down my legs . I´ve never been a sweaty person , and this is just so not me ! The other side effects I can deal with and tolerate , but the sweating is so debilitating . Plus the more I drink , the more I sweat ,and if I don´t drink enough I get cramps in my hands , legs and feet .I will give it another six months .
I take letrozole a generic version made by a french laboratory , or one from a spanish lab , but I assume they are all the same .
Thank god I don´t work or have children at home any more . I can hardly cope with getting the shopping , when I carry more than one bag , I have´nt got a hand free to wipe the sweat ! Awful and very embarrassing !
Sorry to be so negative , I´ve never nbeen a negative person , but this has me beat .
Hi Finty, I hope that you also find the SEs don't outweigh the benefits. Very aware that with grown up kids and not yet at work I am in a position where night sweats etc are manageable, but still don't expect to want to give up when I'm back at work - its too important!
hope it goes well for you, good luck x m
Not sure - last time I saw my onc I was having a bit of a rough time at the end of rads, and she wanted to give me a bit of a break before starting. But I recovered very quickly afterwards - so will have to chase her and see if I can start now.
I didn't read the side effects leaflet, as I decided that the less I know, the less I'll expect to go wrong (which is not my usual modus operandi!) but have flushes a-go-go, never get a good night's sleep and have some weight gain (not wild after 10 weeks)as well as some minor joint aches.
I feel that for the benefits of it, these are all liveable with (but not back at work properly yet) and I wouldn't dream of abandoning it on the basis of these side effects.
As student nurses we were always told that everything and anything you take will have some effect on you, and given that I am taking femara straight after an oophorectomy (wasn't menopausal) it feels OK to me.
so, yeah, some side effects but nothing that would put me off taking it.
On a positive note, bought a 10 year old MX5 and I tell you, driving with the top down deals extremely well with flushes!
good luck to everyone
I wonder if the tinnitus is due to tiredness because of the disturbed nights. Having said that, I did read that oestrogen directly influences brain function and so maybe it is lack of it that causes the tinnitus. It is not there all the time, thankfully.
Good luck with the Femara. When do you start?
Thanks Ann - I seem to have most of those already so perhaps it won't get any worse! - except the tinnitus, that's an odd one - it must be extremely irritating, I do hope it won't be permanent for you. I agree that we are very lucky to be suitable for hormone therapy - I just want to get on with it now.
finty - Femara is the only brand. The side effects are just the ones from low oestrogen (see link below). They include joint stiffness, poor sleep, rubbish short-term memory (which may be because of keep waking in the night) including inability to think of words, flushes (mine are just 'warm' ones, but I do have an overall higher temperature). I also have tinnitus, thirst and a sort of anxious feeling, that someone else described as feeling jittery. There may be some initial side effects which go after a week or so.
However, I am grateful to have the option of hormone treatment and the side effects are bearable (if annoying) in my case.
I haven't heard a theory about no side effects meaning the drug doesn't work, as far as Letrozole is concerned.
I am interested in this thread as due to start Letrazole soon, having thought it would be Tamoxifen - so did all my research on the wrong drug! I know it is thought by many here that with Tam if you aren't having se's it may not be working - is there a similar theory with Letrazole?
Also are there any different brands that you recommend - or is it just Femara?
I am taking Letrozole and I happened to come across an article and the last sentence read:-
"In the period of treatment it is not recommended driving and other activities requiring attention and reaction speed."
This was not an offical Femara website and I have not read this in the instructions which come with the tablets. It did make me laugh though, as it is the low oestrogen and the effect on the brain to which it must be referring.
I really feel for you just starting on the road....... and you're right.
I can honestly say:
"We´ve had our surgery and it does get better ."
"I survived chemo ."
"Don´t worry ,rads is just more sunbathing than normal ."
"Not all pills suck "
Yes I've gone through the butchering, poisoning and BBQ ing and you do get through it. Yes it's hard at the time but you do get through it and you change your priorities. Life takes on a different meaning.
I relish every day now. Before I took it for granted.
You'll be fine ladies. Just batten down the hatches until you're though with treatment.
Yes, Kris, good idea. As you say, there could be lots of different topics within one category. I know some of these things are covered in individual threads but they tend to get lost over time. I just thought it would be good to keep the positive stories altogether, so that when someone new comes on here, or when an existing 'member' moves on to a different phase, there would always be some encouraging stories to read.
Btw, like you, I came off HRT after many years. I can't say what the side effects would have been like under normal circumstances, but taking an aromatase inhibitor as well has obviously made them worse. Still, I am truly grateful that I have that option.
Ann , thats really good .
There could be several different threads ,
"We´ve had our surgery and it does get better ."
"I survived chemo ."
"Don´t worry ,rads is just more sunbathing than normal ."
"Not all pills suck "
Those just starting treatment , whatever it may be ,needs to know that there is light at the end of the tunnel. That some people are unfortunate enough to have bad side effects , and it´s really awful for them , but that therre are lots of others who are so lucky because they don´t , and who knows a new person reading it may be lucky enough to become one of those with no side effects .
I´ve had dreeadful ( for me ,) side effects from coming off HRT , but it´s great to read others who have been fine . On the other hand my surgery and rads was absolutely fine , no problems .
I find most ladies with BC to be so positive once they´ve come to terms with the dx , much more so than most men with colds who are convinced the pearly gates are opening for them !!
People coming back on the sites after every year ,great ! Even if they are still writing and contributing here regularly , to have a thread ..." I´m Alive And To Prove It I´m Here ! " Thats a really positive message , instead of the "Mile High Club " .Itr could be the "Twelve Month Club ".
What do you think ?
Not posted for ages but decided to put in another positive response to Letrozole and treatment in general. Had WLE and SNB July 2009 followed by rads and have been on Letrozole since then. I do get some joint aches and pains but nothing so terrible that I cannot cope. Was 65 in April so expect some wear and tear in the old body but it doesn't stop me from doing things. I have a sporty family and have started to join them. I did the Pedal it Pink half marathon bike ride in Liverpool in April and am going to do a Triathlon in 2 weeks, 200m swim, 10km bike and 4km run.
I do find that I feel much better if I do some exercise every day. It doesn't have to be hard, a bit of stretching, a walk, swimming. ALL DO HELP. When you exercise, your body produces endorphins, your own equivalent to "morphine".
Good luck to all of you on your journey which does end.
Just to say yes to your idea! l would love to see more positive news! whether it is getting through chemo, radiotherapy or just the zero s/e to drugs!
I agree, Kris. I was thinking that it would be good to have a section on this site so that people can log each year that passes since their dx with NED (no evidence of disease). That way, they could keep coming back and letting us know how they are doing - assuming people remembered, that is. That would be so encouraging for someone coming on for the first time. Otherwise, they are just reading about the people who have problems. I think I shall start a thread to see if people think it is a good idea.
I wish more people you don´t have problems like you maltomlin would post .
It´s really encouraging to read that someone is AOK , no problems with pills , chemo , rads etc . It´s encouragement for those about to begin that particular journey .It would certainly make me feel that the odds might just be on my side ,and the more positive you feel about things then I think it does affect how some things react . Not always unfortunately ,and it´s hard to be positive when you feel like poo , but the more positive reports about any of the treatments we have to endure then the better .
Just thought I'd make a positive post on femara.
I have been taking the little pill for over 18 months and aprt from a little stiffness in the fingers when I first get up, virtually nothing.
There must be plenty of people like me who have negligible s/e but they don't post. Only people with problems post.
Good luck with the magic pill.
Good luck Daisyleaf and Janice you´ve certainly been fighting it tooth and nail . Fully understand why you intend to take the letrozole side effects or no side effects .
I'm with you Janice - although I did have 5 years of tamoxifen which I tolerated well, had a recurrence after 12 years - both have been highly ER+. Have just had ovaries removed and taking Letrozole. I have made a point so far of not thinking about the SEs or reading much about them. I figure I've had this twice now, just finished 11 months of treatments and I've done everything I can to prevent a recurrence, now I just want to stop BC from taking over my life as much as possible, and move on.
I do suspect it will come back, but I want to have a good time in the meantime. BC is in my life, but not in charge of it right now, and I'm keeping it at bay both physically and mentally while I am lucky enough to be in a position to do that.
take care everyone and good luck with it all
I was first diagnosed back in 1986, there was no hormone therapy in those days. I had a recurrence in 2005 when I had mastectomy and put on Tamoxifen and then changed to Arimidex, I did'nt tolerate either so after a discussion with my oncologist I stopped as my prognosis was good.
It was a mistake I had a second recurrence last August and this time I am taking Fermara which I seem to be tolerating quite well. Whenever I have a wobble I just remember how it felt having a recurrence and how frightening it was waiting for my scan results to see if it had spread to any of my organs.
Maybe it will come back but at least I know I am doing all I can to prevent it.
I have been on Letrozole for 3 and a 1/2 years and have no complaints. Yes, minor SEs, especially a bit of stiffness. But I don't even think about any of the SEs.
hi everyone. well onc agreed that the benefits of me staying on any AI's would be negliable due to the type of tumour i had(tubular) so ive been off the tabs for 10 days and WOW!!!!!!! no funny head no fatigue no pain. however i would never advocate that anyone came of their medication without consulting their onc, if mine had said no i think you should stay on it or change it then i would but the chance of reoccurance is miniscule(his words).
Hi I've been on Femara now for 4 months out of 5 years and after reading the fact sheets saying 15% get this side effect, 10% get this side effect, 20% and so on - I've decided that I'm part of all these percentages! Hot flushes, night sweats, insomnia, joint ache, bone pain, memory loss, hair thinning, weight gain, coughing - need I go on! Really fed up with the SE's but what's the choice? Changing to Arimidex and getting other SE's or getting a recurrence! Help!
Hi all - thanks for your posts - I can rest a wee bit easier now knowing that the side effects are 'normal' and I shouldn't be looking for anything else.On Friday I will be at the clinic at 9am for my herceptin then the Beatson hospital (other side of Glasgow) for my rads at 11.50 then in the afternoon at my GP's surgery to discuss how I am managing emotionally as I may be put on anti-depressants - woo hoo great Friday for me, I will probably need to go to be as soon as I get home haha!
Sue - good luck for Friday let us know how you get on
Thanks again ladies - hugs to all
ive got an app with my onc on friday to dicuss stats about reoccurance with or without drugs, im really only willing to consider not taking them as i have a very rare form of BC (it was tubular and only makes up about 1% of all breast cancers) and i believe it is the least likely to reoccur anyway. as it stands my side effects are so deblitiating that i cannot see myself returning to work! but unfortuately i have to. i shall keep you posted.
I started Letrozole at the beginning of November last year and have the normal side effects associated with low oestrogen. Actually, they started when I was diagnosed, as I stopped taking HRT immediately.
I have stiff knees, a painful neck, tinnitus, disturbed sleep and tiredness, a rubbish memory and a strange anxious feeling which is hard to describe. It is not a worrying sort of anxiety, more a chemical one. Someone else on here described it as a jittery feeling. I am also much warmer than I used to be. I always felt the cold before, but not any longer. I am too hot at night, but I don't have sweats as such. I am thirsty too, but I think that may be the calcium I am also taking.
At the start, I did have some nausea but as I was having rads at the time, I wasn't sure which was causing it, although I did think it was the rads. It might be an idea to take the tablet at a different time of the day, or with a meal, if you are getting stomach problems.
I do find the stairs seem much steeper than before and I also find I shuffle over the carpet, rather than picking my feet up properly and it is harder to get out of the bath! At the start, my toes used to hurt in the morning but that has gone now.
Writing all this down makes it sound much worse than it is. I think I have got used to most of it now. The symptoms are not so severe that I would stop taking the drug, as I am very grateful that I do have something to help stop a recurrence. I take Cod Liver Oil, Glucosamine Sulphate and Chondroitin and Evening Primrose Oil, which I feel help. I also think a lot of the symptoms are just at the start, although some can get worse as time progresses, such as the stiff joints.
I do hope things improve for you and Sue.
Hi Jean and Sue,
I started on Letrozole yesterday! so not looking forward to the side effects, my bcn said they were mild and would not last!! l decided not to read the side effects on the packet, as the way l feel since being diagnosed, l imagine every pain going to be what it is not!
So time will tell
Hugs to all
You might find it useful to have a look at the BCC fact sheet on letrozole (femara). It discusses what it is, how it works and the benefits and possible side effects. To order a copy or read it on line just follow the link below:-
I hope you find it helpful.
Best wishes Sam, BCC Facilitator
yep that describes me to a tee!!!! i was on arimadex first but that ws horrific, my hips gave way and i fell downstairs! then i changed to letrozole at the beginnning of jan and have slowly got worse im having to uncurl my fingers and every bone aches and clicks in my body!
Hi all - I have just started taking letrozole a week ago and now find my legs and arms feel really heavy and painful as though I have run a marathon, which would be impossible as I can hardly make it up the stairs. I also seem to have a bit of an upset stomach as well as the hot flushes/night sweats, etc. Is this normal? I thought the stomach thing and the muscle/joint pain would finish when the chemo stopped. I am also extremely tired (sleepy) but that may be my blood thats low. Could anyone shed some light on this please. I start rads on Friday for 4 weeks and not looking forward to that either.
Thanks. Jean xx