I recently attended appointment at genetics (I’m BRCA2). It was a yearly review and i was told there is beginning to emerge some evidence that some chemos work better than others in people who are gene carriers although these tend to be considered after the drugs used in first-line chemo have been tried. Does anyone know anything about this, I think she said there was a trial at the Marsden. I didn’t ask her which chemos either. I know she is making my onc aware of this.
Hi
I’ve read this somewhere during my research as I’m BRCA1. I think you could Google and pick up research papers, theree always seem to be some about from the Netherlands. Alternatively try the FORCE site.
Lynni-I was just about to ask the same question. I’m BRCA2 ,and got only limited response from taxotere/herceptin,which disappointed my onc.Last week I started capecitibine. I’ve had a feeling that the gene misprint could be contributing to my lack of response, so a few days ago I emailed my geneticist to ask this very question.Do you mind if I pm you my email address, so we could perhaps share any info we can find?
ElaineD
Since i’m on here already i’ll pm mine,let me know if you don’t get it.
Lynne x
Thanks for the post Dahlia,will have a look later.
Lynne x
I think the chemo carboplatin that is used for lung cancer has been found to be most effective against bc in BRCA carriers. FORCE is fantastic for research outcomes and info as the people using the forums are very knowledgeable. I do think its important to know what your particualr mutation is as this can influence treatment and also give an indication of other cancers that you may be at risk from.
I found out I have BRCA1 last week and I hada good old chat with the geneticist and there’s a trial going on in relation to people with the BRCA gene and secondaries.
I’ve literally only just finished Radiotherapy on Friday so it’s all a bit of a whirl at the moment but she seemed ver excited about what this treatment could offer should I develop secondaries later. Of course I really really hope I don’t but it’s good to know there’s another weapon in the toolbox so to speak.
Details about PARP inhibitors is here:
I wonder if this could be partly what you’re talking about as they are also using capecetibine in the trial I believe.
Hope this helps
Angie
I was screened at the beginning of the year for the PARP inhibitor trial in Newcastle, but even though I have secondaries they are not showing up on CT/MRI scan. When I had ovaries removed, bc was found in them and surgeon took biopsies from peretineom wall which was also confirmed bc. So we know its there. I’ve also got it in bones but research team said unable to monitor results for trial accurately. Need further spread to take part in trial, which I don’t think i want to do at present!
Sorry to hear, Angie about your BRCA1, it is a shock and everything must be abit of a whirl as you said. I have looked on breakthroughresearch.org and found info on there and on FORCE as a couple of ladies have already suggested they seem good sites,thanks everyone.
Take care
Lynne x
I’m on my third type of chemo (also have secondaries) and am BRCA2. Am currently on Xeloda (have been for past 2 years) and have had a good response to all the chemos I’ve been on.
I’ve also heard of PARP inhibitors and my oncologist has told me that at such time Xeloda stops working she’ll put me forward for the trial.
Having now heard back from my genetic team, it appears that this is a question that is being asked more often now throughout the country. So hopefully we’ll see yet more research into this-am quite relieved, if truth be told, to discover that my gut feeling about this actually has a base in reality.I’ll be loking closer into the PARP trials, as another potential option for me at some stage. Glad to hear, pinkdove, that xeloda has worked so well for you, as I started it last week.
Sorry pinkdove and Lynne that you’re both having to deal with secondaries, hopefully the right combo of treatment to keep things at bay is just around the corner but I can certainly understand not *wanting* further spread Lynne.
I’m apparently off the scale as far as stats are concerned. It’s unusual for someone even with the BRCA1 gene to get ovarian cancer before 40ish but then she did point out that they wouldn’t expect to see 2 x BC in someone under 35 either so ovaries are going next year for sure.
Right now I feel a bit like Schrodinger cat… ie I’ll only know whether my ovaries are OK right now when we remove them until then they exist in both states fine/not fine.
It’s amazing how quickly we all adapt to uncertainty isn’t it… well sort of adapt anyway.