I went to see my Onc Friday. I'm currently on iBrance and Faslodex but she said I tested positive for the PIK3CA mutation and she may put me on Piqray and Faslodex in the next several months. I just have one month under my belt currently with iBrance and Faslodex. I have little dots appearing on my breast which I imagine are tiny tumors by the main tumor that came back from my lumpectomy.
Anyone on the combination of Piqray and Faslodex? Its hard not to freak when I read up on this type of mutation. Any insight, advise, commentary is definitely welcomed !
Thank you in Advance !
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Adele_Julia
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Hi Julia! I had the opposite reaction when learning about the mutation...I view it as a *good* thing, i.e. it gives us an additional treatment in our arsenal. But I'd caution you about changing too soon...you sort of can't go back (there are exceptions to this...). But if you're having real progression on current treatment, Piqray seems like a good next step...
Hi Lynn ! Like you, it's currently my second line of defense. I'm just starting my second month of iBrance and Faslodex (shots in the butt - ow !). Knowing I have the mutation, my onc mentioned Piqray as second in attack. I was just wondering why they just don't throw us on it immediately but understand that once you start, you can't go back. It's one of those things where I wonder "why wait !". LOL. Best and Happy Holidays - so grateful for all the ladies on this board !
Hi Julia! I'll just weigh in on the "why wait" question...
I think the reason to wait (and I think you know this, so I'm writing mostly for posterity)...even drag your heels...is because there are "x" number of treatments they can try. With metastatic disease, the goal is not a "cure" or "total remission" or similar, it's longevity. So I've come to believe (via a seed planted by my doc early on) that the best way to achieve the greatest longevity is to "ride each pony as long as she'll go".
So, if I were in your shoes, I would ride out your current treatment, which has relatively minimal side effects, until you really have no choice but to change. *Then* move on to maybe something else, or maybe Piqray, which, btw, seems to me (anecdotal) to have moderately severe side effects. So I, for one, am doing my best to postpone it...
I think that I've benefitted from this approach, as have others on the board. Drag. Your. Heels. The way that I view is that every month I can postpone a change is a month added to my life....
Again, I think you know this, so not necessarily directed to you...
Completely agree Lynn. Merry Christmas and happy holidays !!! xoo
Hi Julia,
I also have the PIK3CA mutation following on from the genomic testing I had last January. Like you, faslodex along with piqray, is in my arsenal for the second line treatment if and when that is required. I have read up on piqray and it seems that it raises blood glucose levels, and it can also cause an allergic reaction, but that is not to say that everyone will present with these symptoms. I already take metformin and loratadine off-label, which would mitigate such side effects. But I just wanted to let you know what I have read and see what you think.
Thank you so much Soph ! How were you able to get prescribed metformin and loratadine off-label? I'm considering the CoC careoncology.com protocol. Are you on it. Thanks and heart hugs ! xoxo and Happy Holidays !!
You’re welcome! My integrative doctor prescribes metformin and I can easily buy loratadine over the counter over here. It might be different in America, but I thought you could also buy loratadine quite easily. It’s also known by the brand name Claritin. Yes, I’m on the COC protocol, in addition to other off-label drugs, and have been since April 2019.
I too had the PIK3CA mutation. My oncologist kept me on the Ibrance/Fasoldex for 20 cycles until it was clear it was no longer working before we tried the Piqray. Unfortuntately for me, I am one that reacted to the Piqray with my blood sugar getting elevated, diarrhea and then breaking out in the rash. My oncologist said that is rare when you take the loratadine 2x a day.
I think we are all blessed that there are so many new drugs that have been approved for MBC that are in the arsenal we can use to fight the cancer.
Hi Julia: I also have the PIK3CA mutation & it will be my 2nd line of treatment when the IBrance stops working. On IBrance/Faslodex now for 21 months. Happy to report it’s still working. However, I’m looking forward to to the outcome of the oral Faslodex pill. Dr. Lin on the LBBC webinar said it is more effective.
How do your doctors know if you’re not responding to IBrance vs the Faslodex?
Hi there ! Thanks so much for your reply. I've just started the iBrance and Faslodex (ugh the shots). Going on month 2. My onc indicated that Piqway will be my second line of treatment if the iBrance and Faslodex doesn't work. I'll know when my 3 month PetScan comes up. Thank you for the prayers - ditto for all the ladies on this board ~ Merry upcoming Christmas !
Did your doc say if the oral serds could be used alone? I’ve been reading a lot about oral serds and they claim it’s going to be a game changer for er+! Did she go into detail about it, what it does?
Ok, I’ve been doing a little research and it say alone, with AI as well! Did she say when it would be approved. Also I know 2 ladies in trials and they are doing oral serds alone! Is er+ Her2- your subtype?
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