Anyone on Piqray (alpelisib) for breast cancer with Pik3 mutation?

Hello @murrayann I am sad to read about your husband and the hardships. I am also caring for all the feelings you are going through right now. I have no idea what comes next for your husband, but I care.
Having a frank conversation with your doctor should be helpful. I find if I just ask it outright, I get an answer that helps, even if it isn’t really what I want to hear. Finding out if there are more tools in the box to treat or not is helpful for me. Many MBC patients are living longer better quality lives than ever before.
I have found with other family members that when “the affairs are in order” just in case, it allows everyone to breath and concentrate on being well and being together.
Is this the first treatment plan for your husband? How is he doing on this drug?

Thanks for your kindness and good suggestions. He was on Verzenio and an AI for about 2 years. When that stopped working he was switched to Alpelisib. I listened to a Dana Farber webinar this am, and they mentioned a couple of others meds that I will enquirer about at his next meeting with the oncologist. I felt encouraged after that.

And we will know soon how this current med is working, as he has a PET scan on Monday. I find that my anxiety peaks prior to his scans.

I can certainly understand why your anxiety peaks before scans. My anxiety peaks right before my husbands blood work appointments as that is how they monitor his bone marrow cancer.
I used to get really nervous before my own scans after having breast cancer but now I find there isn’t any more anxiety about my own.
I am glad to know there is still a few more tools in the box for you guys. Men with breast cancer is rare, he is lucky to have you.

@murrayann, I'm tagging fellow breast cancer members @trivia @rraw and @adanab who also have the pik3 mutation. I think Trivia may also have experience with Piqray (alpelisib).

Ann, how did the PET scan go? How is he doing on alpelisib?

Thank you so much! We see the oncologist next Wednesday to get the results of the PET scan.

Side effects of Alpelisib have been pretty tough on him…stomach pain/upset, particularly in the mornings, and fatigue are the biggest problems.