Hi everyone. I was diagnosed ‘straight to stage 4’ in September 2017, with secondaries in lymph glands and bones. I’m about to change treatment, after a year on letrozole and palbociclib … everything was stable, but now one lymph gland has grown significantly. I’ve been offered participation in a trial that will provide Fulvestrant, coupled with Venetoclax (a leukemia drug that may have a beneficial effect on breast cancer) - half the trial participants just get Fulvestrant, half get both drugs.
I can’t find any recent comments about Fulvestrant … so was wondering if anyone has a perspective on the drug? I believe it hasn’t been easily accessible in many places due to the cost - so, beyond the medical facts and figures, I’m struggling to get information about what it’s like to actually take the treatment (in terms of tolerability, side effects, etc).
Thank you … and lots of love to you all, as always xxx
I was only on Fulvestrant for 3 months as sadly it wasn’t working for me. I don’t recall any side effects from itt, it was really tolerable. Although from this site I realise that everyone’s experiences of drugs are different.
The worst part for me were the injections themselves they can be quite sore as they are given in your bottom.
I am also on the McMillan Forum and there is a thread on Fulvestrant on there.
I was straight to Stage 4 in 2013 - breast, liver and bones. Standard chemo, Zometa and Letrozole worked for three years. Then it mutated and the Letrozole stopped working. I was put on a trial of Palbo, Taselisib and Fulvestrant as well as Zometa which I stayed on until September of this year when I elected to stop cancer drugs. I was fed up being ill. The Professor was horrified. However he persuaded me to stay on Fulvestrant as he said it was a very effective drug, didn’t harm the immune system and meant they could monitor me with blood tests each month. Strangely, the only major side effect is that the hot flushes have returned big time. During the trial period, I didn’t have any. (Perhaps I just didn’t notice them amongst the e-coli infections, pneumonitis, osteonecrosis and all the other treats their treatment gave me). I always ask for a copy of my blood results and my immune system (red and white cells, platelets etc) have recovered back to normal. The tumour markers seem to be holding and the new oncologist thinks the Fulvestrant “leans on the tumours very effectively”. Yes, it is, literally, a pain in the ass but compared with everything else, worth sticking to.
I wish you all the best. Don’t be frightened and don’t be brave. If you feel like rubbish, tell everyone.