Exemestane

[Happyrosie]

Hello all you BC survivors! Exemestane is a drug for post menopausal women after BC. A large proportion of those who take it have muscle and joint pains caused by this drug, as do I. I’ve another five and a half years before I can stop taking it.

Is there anyone who has similar side effects, and what pain relief do you take? And is it effective?

[Aquapuss]

I had all sorts of issues with letrozole so was put on Exemastane, felt much better, all the bone aches, low mood disappeared and this was goodfor around 18 months but I realised my sleep was getting very disrupted, became insomniac for around 6 months, mentioned it to breast clinic as I was exhausted ( also hypothyroid so wasn’t sure it was to do with BCtreatment) They immediately stopped it, apparently insomnia is one of the side effects. Put me on anastrozole so this was my third aromastase inhibitor within two years, have had no problems with it, much better than either of the other two. Got my discharge this March so could have come off it then but decided to continue as no ill effects, but small benefit to continuing. Ask to try a different aromastase inhibitor, we all react differently to them. Personally I don’t know anyone who had problems with anastrozole but do know people who couldn’t tolerate exemastane or letrozole

[Happyrosie in reply to Aquapuss]

This is interesting! I’ve been discharged from oncology follow up but still have to take the aromastase thingy for the next five years. I had been on Letrozole like you, the aches are slightly better on exemestane. But I have morphine patches supplemented by ibuprofen for the pain.

[Aquapuss in reply to Happyrosie]

If morphine patches are not addressing the pain, i think your doctors need to try a different drug- tamoxifen is another option but not one I could take. The pain should not be that bad!

[Happyrosie in reply to Aquapuss]

I’m not proposing to change to tamoxifen as the newer drug (Like Letrozole) has been found to have better prognosis, and anyway I think it’s mostly for premenopausal women. Maybe it’s worth me talking to the doctors surgery for more advice. My doctor is a pain specialist so I’ve been trusting him to prescribe what’s right for me, pain-wise. I shall have to have a think!

[Aquapuss in reply to Happyrosie]

I think if it were me I would be querying what was causing such severe pain. Have you recently had surgery? Although aromastase inhibitors are for post menopause, tamoxifen can be given but depends on your risks of clots. Tamoxifen can be used pre menopause but the AIs can’t. The AIs are letrozole, anastrozole and exemastane although they all work slightly differently. Might be worth asking doc about a trial of anastrozole if letrozole and exemastane are still causing side effects, I think they all have similar effect in terms of reducing risk of recurrence. Tamoxifen is a bit less effective than AIs

[UndomesticGoddess]

Interesting to hear about your side effects. I’m on anastrazole but suffering with leg pain foot pain but also insomnia. My gp has suggested I will get similar with all similar drugs and prescribed CO-codamol but don’t really want to take that long term.

[Happyrosie in reply to UndomesticGoddess]

About pain meds- if you can vary them (e.g. cocodamol one day, ibuprofen the next - I think it’s less likely your body gets dépendant on them. A chat with a pharmacist might be beneficial?

[waveylines in reply to Happyrosie]

Have they done a dexa scan? It could be it has affected your bones. My bone density has dropped -on letrozole then moved to Examastane. On my 6th year fo treatment. On a bone strengthener now and take calcium. Make sure your vit D is on the high side of the range.

Although its recommended for 10years Ive no intention of taking it beyond 7-8yrs due to the bone breakages reported after 8yrs. The benifits are very small about 4% of lowering reoccurance though if youve had an aggressive form of bc like me the benifits maybe be greater but this is not yet proven.

[Happyrosie in reply to waveylines]

The dexa scan showed my bones to be in excellent condition, I’m glad to say, and no change between the initial scan before medication and two years later (as I recall). My bc was very aggressive - from nought to large satsuma in just under a year! I’m in my sixth year of treatment now. Both the surgeon and oncologist stressed I must continue the AI a for ten years. I know that some of the pain I get is arthritis.