HelloI am about to start taking Letrozole and after reading the side effects I am concerned. I've come so far after chemo, mastectomy and radiation and now feeling really good and enjoying life. The last thing I want is to go back to feeling unwell again! What symptoms did you experience or are experiencing?

I find your post extremely sad. Not everyone suffers badly and you maybe one of those.Letrozole is just one of the AI group.My medical team treats me with the utmost respect. I am sorry if yours is as you mentioned above.Venting is a way of releasing frustration!

I think it’s interesting to note the range of side effects from aromatase inhibitors like Letrozol that can be from mild to life altering in a terrible way. I can’t believe how often people dismiss these side effects as if they are not much, despite a high incidence of sufferers and high drop out rate in taking these drugs. I am due to start an AI in the next couple of days and as someone who is not arthritic and doesn’t have any osteoporosis or joint or muscle pain, I take the likely addition of such problems into my life very seriously. I have breast cancer so I have to now be constantly grateful to the medical world, but I am not doing that shit. I am refusing to start so the experience doesn’t ruin Xmas and holidays and I have put commencing right off until Jan some time. As best I can see you will be minimised if you raise the issue of side effects from aromotase inhibitors. The best you can do is to walk, eat rabbit food and/or STFU- this is the summary I have reached. NB: The other advice commonly given is to “talk to your doctor” which is also code for STFU. I truly hope you are not badly affected and I hope I am not when I get round to taking it. There’s so little information by and for women about side effects so the only thing to do is to go ahead and not worry our overly emotional, side effect inventing pretty little female heads and hope it isn’t too terrible because doctor says so. Great isn’t it? I hope we all share our actual experiences, good and bad, with other women because I’m terrified The male body builders taking aromatase inhibitors have more information and discussion than we do!

HiShort answer is, it is variable and the type of side effect or the severity is hard to predict. Joint pain is experienced by many and I have none at all. Flushes and menopausal symptoms also, I haven’t had any of those either. Vaginal dryness, yes but mine may also be compounded by age and the severity and impact experienced by others is from mild to severe. There are treatments and ways to alleviate this, with varying success and many don’t get it at all. Bone thinning can occur - if you don’t already know, wise to get a bone density test before you start, then you can accurately monitor any impact. Again, age can make a difference. But bottom line, give it a shot. I’m still on it 7 years in, don’t know if I’ll make 10 but we are working on it year by year. If it’s too difficult you can stop, but you’ll have done as much as you can to get any benefit. Best wishes.

Not everyone has side effects that are troublesome. For some there's niggles initially and in time the body adjusts.Hopefully you are one that sails through.Take care

I too am troubled by your post @Temple . It would seem your medical support team has been disappointing. At the beginning of treatment I changed one of my oncologists as I did not feel comfortable - I guess I was lucky being a private patient I could choose my team.If you can maybe you should too.Re Letrozole nobody starts hormone therapy lightly but we choose to do so as Er+ breast cancer in the hope that it prevents recurrence ie it’s the best shot we have post surgery/ chemo/radiotherapy - we are lucky in that our Triple negative sisters have no such option.I do not defend Letrozole, it was the scariest part of my treatment for me esp given my pre existing osteoporosis but I’ve tried very hard to manage it’s side effects . I realise some find it very tough but many find it doable - I’ve been lucky to be in the latter.Finally I think it’s important to try , garnering as much information as you can to try and find a pathway to manage side effects for the potential protective benefits.

Letrozole | BCNA Online Network

23 Replies

Katy_Sodapop
Member
6 years ago
I just wanted to say I've been on an AI for coming up to 6 years and whilst my side effects were quite intense I wanted to stick with it to give me a better chance of surviving BC. I'm about to start Tamoxifen now, I've got no idea what the side effects will be but I know I've already put in the hard yards with the AI's and chemo. I take comfort in knowing our bodies are so different and so the side effects can also be so random. I went onto Effexor to help with my aches & hot flushes. I hope you get none!
May20019
Member
6 years ago
Hi @Ctoo,
I started Letrozole 9 weeks ago and I too was very concerned about the side effects.
As others have said you just have to take it and see how you go. My advice would be to start taking it on a day when it does not matter if you do feel a bit off and best of all keep busy so you don't think about it too much. I got nausea it lasted about a week and then on an odd day for a couple of weeks after that but it was manageable and that has gone now. Hot flushes of course some worse then others, but learning to live with and manage that. I have also had sore hips which I find is not so bad on my gym days, so trying to add walks on the other days. I definitely think exercise has helped and I am seeing a exercise physiologist as I have osteopenia and want to learn how to exercise better.
All the best I hope you don't have too many problems with this next stage.
primek
Member
6 years ago
From my understanding of long term survival taking an aramatose inhibitor was more significant than my chemo and herceptin for long term survival. I initially had issues with letrozole which did improve over 6 months and after losing my chemo weight.
I ended up with some shoulder issues which dramatically improved off letrozole. So now I am on anastrozole and my side effects are much reduced and I believe now I can stay on it for another 7 years.
Everyone is different.
I plan on living a good long life and these drugs are my best shot at doing that.
arpie
Member
6 years ago
Have you started Letrozole yet, @Ctoo ? I hope you haven't experienced too many side effects xxx

Happy New Year & all the best for 2020 xx
arpie
Member
6 years ago
@Ctoo If they tell you very little about ant side effects, ask them if the get their info from “eviq” .. and if they say “yes”, tell them the info is 11-15 years old and obsolete. ;)

All the best xxx
Sister
Member
6 years ago
Always ask questions but don't be too ready to assume that you will have significant side effects. Those of us with them are quite vocal because we have to be but that doesn't mean that everyone gets them or that, if they do, they are bad enough to cause any major quality of life issues. You won't know which group you fall into until you try and there's no rule that says if you've started, you have to continue.
StarGirl
Member
6 years ago
@Ctoo don’t be afraid to ask lots and lots of questions. I refused Letrozole after extensive research and discussion with 3 specialists. When asked directly whether in my particular case they could hand on heart say that the benefit would outweigh the likely negative impact on my quality of life they each said no. So I said no. And they were fine with that. But if I hadn’t said anything they just would have given it to me per what I like to call ‘the abundance of caution’ protocol (aka covering your arse in advance to mitigate any future negligence claim). It’s your choice. Be informed and do what’s right for you. I also read somewhere that Letrozole is supposed to be for post-menopausal women so I’m not even sure why it was ever suggested in my case? I wonder if they just assumed chemo triggered menopause and so never even bothered to ask?
iserbrown
Member
6 years ago
No one I have come across in the medical field speaks like that
Dear oh dear!
arpie
Member
6 years ago
hahaha - Thanks for that!! Oh dear - I only got the one word right then! Guess which one @kezmusc ?? I don't recall seeing it shortened like that before - or my fuzzy brain has forgotten it - probably that!!
kezmusc
Member
6 years ago
@arpie...It means shut the fuck up. Stop complaining and do as you're told. GP's go there when they don't have any clue what to tell you.