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.
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 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?
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.
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.
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.
Hello
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
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.
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
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 .
Kris
Kris
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?
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.
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.
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
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
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.
Hi
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!
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.
yey!