Is Anyone's Cancer PIK3CA Mutated? How Are You Doing?

I was just with my sister at her oncology appointment, and she was told today that her cancer has this mutation. My sister was diagnosed on January 30th - Stage IV hormone-positive, HER2-negative; mets to pleural fluid, ribs, sternum, skull bone, and stomach wall. She is on Kisqali and Arimidex. Most primary struggle/fight has been with metastasized pleural effusion. She has had seven thoracenteses, and just had a PleurX catheter placed this week in the right lung to try to ward off hospitalizations for thoracentesis. Oncologist said today that we shouldn’t expect much to change until she has been on both cancer drugs for somewhere between 4 to 6 months on average (she’s only been on both for two weeks consistently because the Kisqali crashed her white blood cell counts and the doctor had to pull her off it for a bit and then put her back on at a lower dosage). Doctor said today that she already has a new drug regimen in mind now that she knows her cancer is PIK3CA *if* current drugs don’t work. Hope that helps. Sending blessings your way. 

Well I am starting itovebi and intance

Ibrance

Hello Elaine I have been on Truqcap, Faslodex, and Xgeva for a little over 1 year, and it seems to work. Prior to my current treatment, I was on Verzenio, and this medication didn't work right because of the PIK3CA gene. I hope they have something available that works for your sister.

Hi, Monika. Thank you so much. Sending blessings your way.

Just started Ibrance and itovebi and this is my second day. I am feeling fine so far but I know that will probably change

Thanks Elaine

Hi Erica, I was on Ibrance for almost 3 years and did really well on it ; really no side effects; a little fatigue only. I did have neutropenia once but they took care of that and after that everything was fine so I think it’s a very good option. Also tried Piqray but I had an allergic reaction to it and had to discontinue the Piqray. Hope you have the same continuing good results with no side effects as I did. Take care👍

I am on Piqray and initially had bad rashes and diarrhoea. My oncologist reduced my dose and prescribed steroids pills and cream for the rash. It really settled within 3 months and is working very well. I wish you well on whatever treatment you get and if it’s anything new please let us know.

Hi Elaine Not only am I on inbrance plus itovebi. A new drug for my pick3cs d1017h. Feeling pretty weak today. Hope I will do better After a White when my Body Gets used to the medication

Kisqali just failed for me so we did a biopsy and my cells have pik3ca and ESR1 now. I’m staring Truqap and fukvestrant next. I think it’s a good thing because there are more options to target the cancer with these mutations. It’s also quite common once endocrine therapy fails.

I have the PIK3CA mutation, but so far, I am just on faslodez and Verzenio. These are working really well for the time being, so I've been advised not to worry about Pikray or other options for now.

How do you know which mutation you have or if it changes? Do I ask my oncologist?

Hi Erica I just added itovebi to ibrance and faslodex. How are you doing with this Combo? How long did it take to start working?

Dx stage 4 beginning of January Mets to liver I was on just faslodex and ibrance and had progression in my liver next scan my spine. So far nothing has worked Just started Ibrance and itovebi and wondered how long it takes to work.

PIK3CA mutations are found in a significant portion of metastatic breast cancer cases, so there are likely others in this community who share this experience and may have insights to offer. Connecting with others who understand the unique aspects of PIK3CA-mutated cancer can provide valuable support and shared experiences that might be helpful on this journey.