Hi there
I’ve been on capecitabine for the past 2 1/2 years for liver & bone mets & has been stable until last week. I’ve just found out that I now have further lesions in liver & possibly skull (I’m waiting on head ct to confirm that). My oncologist was going to change treatment to faslodex, but on talking he mentioned I might be eligible for some clinical trials that are ongoing just now. I’ve received info about a trial using Faslodex + experimental drug GSK525762 but it’s only a phase 1-2, so very early experimental stages. It also lists a whole load of side effects which are very daunting. I don’t know what to do. I’m going on Thursday to speak to them & I’ve got apt with my own oncologist today as well. I’m just looking for as much info as possible before I make my decision. I’m otherwise healthy & lead an active life. I want something that is going to help me not make me ill. I don’t know what to do!!!
Hi Jeanie
Sorry that you havent received a response yet, I am sure someone will be along soon to support you. In the meantime, we have a private group on the Forum for women with secondary breast cancer, maybe you would like to consider joining?
In the meantime, I hope you have found information you are looking for, maybe talking with one of our specialists on the Helpline, 0808 800 6000?
Best wishes
Anna
Digital Community Officer
I have just been on a plasma match trial with faslodex at double the normal dose i.e. 1000mg every fortnight - targetting specific cell mutations. I had very few side effects and those i had were very tolerable. I do not know about the experimental drug you mention but i am sure your consultant would not put you at risk if they did not think you might benefit. Do not be afraid to ask awkward questions. They were very patient with me in responding to all my questions and fears.
Hi Harebell, thank you so much for replying. This week has been a bit of a rollercoaster ride. I’ve had so much information to take in & process. I managed to speak to my own oncologist on Tuesday who explained all about the trials better & was able to answer most of my questions. I then met with the trial doctor Thursday who answered the rest of them. Anyway long story short, i was actually eligible for 2 trials & I’ve consented to go on the Plasma Match trial first, which if I’m suitable offers the same targeted therapy you are receiving. If not, then I will then go forward for the other trial. My bloods were taken on Thursday, so it’s just at a waiting game now. However my head is in a better place & I think I’ve more to gain from going on trial than not.
Are you still on the higher dose fulvestrant? How effective did you find it if you don’t mind me asking, jx
Hi Harebell, Im sorry you didn’t get the anticipated results from the Fulvestrant, hopefully the new treatment will be more effective. Although 2 weeks on 1 off will be very tiring for you. It is the high dose Fulvestrant that they’ve mentioned putting me on, but I haven’t heard anything back yet & im not on any treatment until I do…quite scary really!!!
what really gets me about this whole thing is that what works for one doesn’t necessarily work for the next person & then you could be on a treatment for a while, doing fine & then for no apparent reason it stops working. You’re constantly living on a knife edge, trying to stay one step ahead!!!
I’ll keep you posted about how I get on. Hopefully I’ll hear something soon. Enjoy your treatment free week when it comes & get plenty rest.
Well I’m finally getting started on a clinical trial tomorrow. I didn’t qualify for Plasma Match trial…I did have a mutated gene but not one they have a targeted treatment for. Anyway I was accepted on the other trial which is looking at effectiveness of giving fulvestrant along with trial drug. I’m a keen to get started but nervous too.
Never venture never gain. You may not get any side effects and if they are unbearable you can stop. I just feel this trial may help your cancer and also could help other ladies. Says me that falls apart when I get a scan. I think I’d go for it. If you are beating yourself up about it don’t do it. You have to go into the Trial with a positive attitude. ?
I’ve just consented to the plasma match trial and had bloods sent for testing, looking around for other trials as my TNBC has turned chemo resistant, so a medical breakthrough is required