Hello,
I know (I think) that fulvestrant isn’t approved for use unless AIs haven’t worked, but does anybody know how effective it is compared to letrozole and if it has fewer side-effects? Also, if anybody has been prescribed it because AIs were too unpleasant?
I’m heartily fed up with letrozole - having to take anti-depressants to cope with the pain and the horrible feeling of despair, worried about damage to eyes and bones, and unable to do what I want to do without taking aspirin, which seems to be the only thing that breaks through the mental and physical heaviness but which I’ve been told not to take. I wasn’t menopausal when I got prescribed it, so it was like a steam hammer striking a grape - far too much all at once.
I’m wondering whether it’s worth using up my pension money to get fulvestrant privately for a couple of years’ respite.
I’d be grateful for any answers,
B
Hi @blueparakeet, there is information about fulvestrant on the European Medicines Agency website which may be useful…
Fulvestrant 250mg solution for injection in pre-filled syringe - Summary of Product Characteristics (SmPC) - (emc) | 12022 Fulvestrant 250mg solution for injection in pre-filled syringe - Summary of Product Characteristics (SmPC) - (emc) | 12022
The trials appear to have been done with this drug alone i.e. nothing else being taken alongside.
Hopefully, you will get a response from someone who is taking it.
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I’m interested in your findings as well. I did not tolerate anastrozole, Letrozole, or Tamoxifen. I am currently on 3/4 dose of Raloxifene which is where I am staying. I still have terrible arthritis but do daily ballet class. My hands are arthritic, just started hand therapy.
Let us know what you discover and good luck!
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H Tulip29 , l have been having Fulvestrant injections once a month and also 2 x Ribociclib tablets daily for over a year now and haven’t had any side effects apart from hot flushes from time to time.
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Hi Curly20,
That sounds very positive. May I ask how you got on to Fulvestrant? I have read that studies show it’s more effective than AIs for bone metastases, but NICE won’t fund it.
Any information much appreciated,
B
As l was taking Tamoxifen after my first breast cancer, my Oncologist said l couldn’t take them again so was prescribed Fulvestrant injections and Ribociclib tablets. Do you live in UK? Wishing well.
Hi Curlyp20
Yes, in the UK. I’ve been fold that I can’t have Fulvestrant unless the Ribociclib/Letrozole combination fails. Apparently since they can’t tell which drug of a combination has failed, they tend to change both. So if I started Fulvestrant now and there was any progression, or the Ribociclib became toxic, I’d have to change both and would lose the next line of drugs.
If I’d been given the option of Fulvestrant in the first place I could have started on it and continued. I know they don’t want to pay but I’d even have spent my pension money on it. But it wasn’t even mentioned, which makes me pretty furious. NICE didn’t take account of its increased efficacy for patients with bone metastasis.
Look after yourself,
BP