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

Posted by murrayann @murrayann, Oct 27, 2023

My husband just started on Alpelisib for MBC w/ a pik3 mutation. He is HR+, HER2 -. Anyone have experience with this treatment and what was used after progression on this drug?

Interested in more discussions like this? Go to the Breast Cancer Support Group.

tdesantis | @tdesantis | Oct 30 8:07am
In reply to @hikerlou "I’ve been on Ribociclib and Faslodex for past 15 months for liver metastasis July 2023. At..." + (show)
@hikerlou

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. ☹️

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Yes! This sounds exactly like my story! One liver lesion for a year. Had a Y90 in June. Latest scan now I have over 11 all spread throughout my liver. Also spread elsewhere . I was on Kisquali and Faslodex for 12 cycles.

Piqray started 4 weeks ago, My sugars were pretty high after 2 weeks. I am also on a Decadron Steriod for a met they found in cranial nerve giving me pain which also raises sugar. Hoping it will go down a bit after steriod done. Otherwise I have not noticed any other side effects. I also added Zyrtec to slow down and rash that may pop up since that is common and I always have sensitive skin.

Bought a glucose meter and now taking 2 pills of metformin daily to start. My sugars are still high but not as bad. I am certainly watching what I eat and met with a cancer nutritionist thru Unite For Her. She was very helpful. And now keeping busy on looking at fun recipes to make with out sugars.

Good luck to us!

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Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 3 4:50pm
In reply to @hikerlou "Thank you for your reply. I started Piqray yesterday and am monitoring my glucose. I don’t..." + (show)
@hikerlou

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.

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@hikerlou, you may also be interested in this related discussion:
- Anyone on Piqray (alpelisib) for breast cancer with Pik3 mutation?
https://connect.mayoclinic.org/discussion/pik3-mutation/
I'm also tagging @trivia @rraw to share with you their experiences with Piqray (alpelisib).

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