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.

I’ve been on Ribociclib and Faslodex for past 15 months for liver metastasis
July 2023. At that time I had one liver lesion that was ablated. I have had MRIs every 6months and they were negative for cancer. (June MRI was negative). Two weeks ago three new small liver lesions were noted on MRI. This was also accompanied by rising CA 27.29 and rising signatera. A liquid biopsy was also sent that I am awaiting results.
Oncologist is starting me on Piqray as I have the PIK3 mutation. I’ve done research on this drug and am very concerned about the high incidence of hyperglycemia necessitating using Metformin.
I would appreciate any feedback from women who have or current are taking this drug.
Feeling very frustrated and disappointed. ☹️

Hello @hikerlou , I am not on this drug but I didn’t want to leave you unanswered. Living with advanced cancer is never ever easy, and I somewhat know what you are going through right now. Every relapse is a letdown and adds more fear and frustration.
I can’t tell you what you should do because only you know your situation health and quality of life. I can only tell you what I would consider in my situation. I would weigh how I feel now, with how I will feel if I don’t try it. I have had quite a few relatives on metformin, as diabetes runs in my family. It really isn’t bad, I just texted a friend and she said if that is the worst part she would go for it. She has been on it (metformin) for years with no problems.
My question would be is there a benefit to the current Mets, and can it help prevent new ones? How will my quality of life be, will I be able to do the things I love? I can try and then quit if it is awful and not helping, right?
All of that being said, I am heartbroken over every relapse of a breast cancer patient, regardless of stage. Did you decide to try Piqray? When do you expect your biopsies to be back?

Thank you for your reply. I started Piqray yesterday and am monitoring my glucose. I don’t like creating another health issue in order to address the liver met but after researching the PIK3 meds they all have this effect on the blood sugar. I’ll just suck it up like I’ve been doing and take the Metformin when I need it. It will be better than advancing cancer.

This is exactly my thoughts when I am facing a new medicine. I remind myself that cancer has some really nasty side effects too.
I am thinking about you, please let me know how you are doing. I think it is important for us to start getting an understanding about some of these newer treatments.
😘