@sweep1 I’ve got plenty of those anyway all day every day so what’s a few more?! X
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I took Letrozole with Ribociclib for secondary breast cancer for just over two and a half years and had no problems with it. Only stopped taking them when a scan showed signs the Ribociclib was beginning to stop working. (It’s been a rollercoaster since then but I’m not planning on any clog-popping just yet)
Hope you continue to have no problems with the Letrozole.
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I was so pleased to read this post, as I start Letrazole today. I know that the posts on here are people looking for support when they are suffering with side effects, but it has made me so nervous about starting my endocrine therapy. Reading a positive post has helped me feel a bit more positive about it and I am fingers crossed I have minimal side effects. Thank you
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I’m pleased that you have found some of our positive experiences helpful. Hopefully your treatment goes well and keep thinking on the bright side. Just because there are all these side effects it doesn’t mean that we will either get them or that they will be unbearable.
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This is so good to hear that you were able to tolerate these treatments. Best wishes for whatever comes next for you. I understand that there are various drugs and things they keep back in the armoury for when we might need them xxx
Good to hear of your positive experience, thank you xx
I had a little look online and it seemed to say that veozah was only ok if you didn’t have any current active breast cancer, but only because they had not got any data on that group of people as yet. Maybe there will be some positive evidence coming through from trials in the future so it can be given as an option to everyone? Fingers crossed xx
@bobcat1 Thank you for finding that-so kind of you. I’m going to keep asking the question x
@naughty_boob I love Dr Liz! I spoke to my nurse about it this week and she thought that it might be because im young (46) my body is adapting to the letrozole better and I’m not getting so many side effects. She said in her experience the letrozole often increased joint pains in people that already had them.
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I too have limited side effects … I had hot flushes before chemotherapy from the menopause so don’t feel Letrozole has made them worse . I do still experience tiredness & think I sleep more deeply but can attribute that to old age / menopause & chemo so it’s interesting to hear of someone else who isn’t affected too badly .
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Likewise just hot flushes . Very annoying but I had them post menopause anyhow so hard to identify if I have more or much the same . No other apparent effects apart from sleeping more deeply than I did before . Started in November 25
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I wish it had worked for me. I came off HRT at my request in January and a passing comment about my breasts being lumpy lead to a breast clinic referral. Lucky it did as although that lumpiness was just my HRT they discovered a tiny tumour.
I was prescribed Letrozole at diagnosis mid February and started taking it end of February by the time my GP wrote the prescription and it was filled. I asked about side effects and was told “just menopause symptoms”.
The hot flushes were punishing but manageable.
Constipation that no amount of fluids and fibre could deal with but also manageable.
No joint pain prior but I was hobbling like someone 20 years older by mid March. Swollen fingers to the point my wedding ring hasn’t been on for months and a couple of weeks ago my grip became so weak I couldn’t open bottles, jars etc. it started to affect my ability to craft and sew which are both important to me. My fingers were at time numb and others tingly.
My feet itched so much my GP prescribed a menthol cream and told me to take a daily antihistamine to stop them waking me up and also itching all day.
Vaginal dryness so I now have a prescribed moisturiser and intimate wash.
Brain fog and memory problems were horrendous, I couldn’t remember what I wanted to set reminders for in my phone or do basic mental maths (I’m a retired teacher so this is usually easy).
But most importantly it set off a depression in me. Yes I know this is a scary time in my life but I’ve had other things and not been depressed before. Also the depression didn’t arrive until I’d taken the Letrozole for a couple of weeks so through the tests with a minor surgery plan by then. I had some very dark thoughts and seriously planned to leave my family without telling them where I’d gone as they’d be better off without me.
At last week’s results appointment the forward plan included 5 years more. I asked if it was essential and was told no. No one has asked me about my side effects at all or if it was working for me.
I stopped taking it a week ago and honestly it’s like a fog has lifted! Memory works, brain works but most importantly I’m back to being me, looking forward to things like the grandpup staying and my sense of humour & fun have returned.
I would recommend everyone try it if it’s recommended as my experience is not the same as everyone else’s but I don’t feel it’s worth living longer if I feel flat and can’t do the things I enjoy.
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@bluetit11 thank you for being so honest in your post.
So many things you have mentioned I’m like that’s me!
I’m into my second month on it and I feel dreadful, tired, emotional, down, hot flushes, heart palpitations, weight gain and terrible pain in one foot.
I had concerns about taking it but was told my breast cancer nurse that I must and my radio oncologist to ‘deal with the side effects’ and ‘ we will just prescribe you an array of meds for the side effects’.
I’ve told myself to give it 3 months and if I’m the same I’ll come off it… so time will tell.
Wishing you the very best going forward x
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I’m surprised your breast cancer nurse was adamant you must as there’s other medication that might suit you better. I was offered Tamoxifen but there’s a family history of non dissolving blood clots so it wasn’t suitable for me.
Don’t suffer in silence as my team assumed I was fine when I really wasn’t. I hope you find solutions that work for you.
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