Hi,
I’m 41. I had mastectomy, chemo and radiotherapy. I finished active treatment in the beginning of December last year.
I started Zoladex in January and Letrozole in February. I suffer with a very bad bone and muscle aching, day and night. I have limited arm movement. I’m very tired and sleepy in a day. I feel worst than during the treatment last year.
Is anyone here that felt similar, but then started feeling better? Or this is now a “new normal”?
I think this may be the new normal for you unfortunately. I have been taking Letrozole for about 2 months now, I take it in the evening so the worst of the side effects are when I am sleeping but joint aches particularly in fingers, hands, wrists, knees and shoulders seem to be the new norm. I also tire easily which I think is the legacy of chemo and radiation and the drug but is early days yet as only finished my radiation in early January and then had a bone infusion on 20 January so waiting to see if I can build up fitness/ strength to try and overcome some of the tiredness.
Hi, so sorry to hear you're suffering. I have heard of other ladies who have tried a different brand of Letrozole snd that this has helped them a lot. It seems that the original drug is called Femara, but this is expensive, so many pharmacies offer “generic” brands, From what I understand, the active medication is the same, but the non active ingredients (eg, sugar, flavouring, colouring etc) can be different and many people do report that different brands give different side effects. It would be worth asking to try a different brand to see if that helps.
I was also told side effects should settle after some months but if it's really tough and impacting your day to day life, I would tell your oncologist and ask for advice. Best wishes
My oncologist said it takes about 6 months for side effects of the aromatase inhibiters to settle, so it is still early days.
I've been on zoladex for 16 months and exemestane for 10 months.
I found the sudden medical menopause during chemo really intense so the exemestane wasn't too bad when I started it.
Menopausal symptoms have significantly improved but I still have hot flushes / night sweats and insomnia. These are all very much improved over time.
I found I was very stiff when I started exemestane but this eased off with activity.
I had very sore hips overnight too and could not sleep, but that went away within a few months and I started taking hemp seed oil capsules in the evening which has helped.
Things for me have definitely settled and got easier but I can't get away from the fact that I was pre menopausal and I'm now menopausal. That is going to take some time to settle down.
One thing to watch for is brands of drug as they all have different coatings. I think side effects can be especially different on different letrozole brands but I changed exemestane brand recently and could not tolerate it so they have excluded that brand for me now. I could not sleep at all and my bowels completely stopped working! My tummy is still bloated a couple of weeks later so it is worth writing down how you're tolerating all the brands to get a feel for which ones are better for you.
Thanks for your response. I’m also waiting for bone infusion:/
Best wishes
Thanks for your response. Sometimes I think Zoladex cause it as I’ve started feeling like that before I started Letrozole if and then worst after Letrozole
Take care
Thank you for sharing. I was hoping to hear that it may improve.
Best wishes:)
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