hello everyone- I just wanted to reach out and inquire if anyone has the BRCA 2 gene which contributed to their MBC diagnosis. If so, how did this affect your treatment lines. I read a scary article that if you have a BRCA mutation you become resistant more quickly to Ibrance and endocrine therapy like Letrozole which is exactly what my loved one started on in June……. I hate reading things that make me feel worried and scared. Would love to hear good stories! My loved one has MBC to the bone ER+
BRCA 2 GENE: hello everyone- I just... - SHARE Metastatic ...
BRCA 2 GENE
Take everything you come across with a heavy dose of salt. Everyone's body is different. I like to take my fears to my Onc first. She's helping me develope my horse sense. "The only thing we have to fear is fear itself." - F. D. Roosevelt
it’s partly true. It’s a genetic form of tumor, but Talazoparib, a new target therapy, was recently approved. My onc told me it’s giving very good results. I’m waiting for my result, I had my BRCA tests done at the end of August, we’ll see…
My wife has the BRCA2 gene and she used Talazoparib, also known as Talzenna (PARP inhibitor), with good results for 12 months.
She first tried Lynparza, the other PARP inhibitor, and she had an allergic reaction to it. We almost didn’t try Talzenna since it’s the same class of drug as Lynparza but she tolerated the Talzenna fairly well.
Lynparza also lists a slight chance of pneumonitis on the FDA label, which my wife previously had. Talzenna does not list pneumonitis as a potential side effect (last time I checked).
Yes, she got a little more than 2 years in iBrance before she developed pneumonitis (interstitial lung disease) from it. Keep an eye out for that on all these targeted therapies.
iBrance & Faslodex taken concurrently…
Yes, it was tough to distinguish between the progression and the pneumonitis, but her team (and we) all felt both were at play. Unfortunately, nothing is black and white with MBC, and good diagnosticians that can navigate complex overlapping issues are far and few between. Most of the physicians we’ve come across prefer to look at the most likely singular cause and stop there. Be your own advocate!
Hi. Yes i'm BRCA2 and most definitely this is what contributed to both intial dx (stage2/2016) and now MBC to bone(s) and liver 2021. Er+, HER-, PR- . I am actually doing ok on Xgeva, Faslodex and Ibrance - all stable and that is what i'm aiming for. what i've read on BRCA is that the dna can only be tricked for so long which is scary, but am also aware that there are always new studies and developments in protocols which make me more optimistic. i can only spend so much time on research because quite frankly, its a rabbit-hole and quickly gets me depressed.
I was advised to plug into a university/research facility which specializes in BRCA research. Not a bad idea- I'm being followed now by both my local onc and an onc at UPenn. ( Am working on getting into MSK. ) The theory is that it 'takes a village' to tweak existing protocols and another MD specializing in this stuff eyeballing my tests, scans and treatment notes is giving me peace of mind. By getting on a researcher's radar now I am kept in mind for future clinical trials as they come up.
It is far easier to make the follow up appointment when there is a choice vs. initializing contact once a protocol fails. Not sure where you are located, but it may be worthwhile to find who does this near you and have your loved on make a consultation.
Also - another dear member of this forum once recomended a book which was a game changer for me called 'How to Starve Cancer' by Jane McLelland. I am a big proponent of the Mediterranian diet and trying to make lifestyle changes to get my body back into stasis and keep it there.