Pik3 CA mutation

[gerisplace]

So I recently had a liquid biopsy done because after seven years on Ibrance and letrozole my cancer has spread in my bones and also two lesions now on my liver. The report showed the Pik3 mutation. Has anyone else been told they have that mutation and what the recommended treatment was?

[GollyG]

Hi there, yes, I have it too and was put on piqray, which worked fine for about a year. I think there are other treatments available, especially in US, and more in the pipeline. Good luck with it!

[MazzyUK]

Hi gerisplace

Sorry to hear your cancer has spread. I was on Ibrance and then Kisqali + Fulvestrant for two years and then had progression in bone with two small liver lesions, so very like you. I also have the PIK3CA mutation.

I have just (2 days ago!) started on the INAVO121 clinical trial looking at Inavolisib vs Alpelisib. Both with Fulvestrant. Fortunately I've got the Inavolisib which I'm told is showing less side effects in trials.

I'm in the UK although I know the trial is worldwide.

Good luck with your next steps.

[Chef50 in reply to MazzyUK]

That is good news. I am being screened for the Inova trial. Hoping for Inova over Piqray because if side effects. Hope all goes well with your trial

[MazzyUK in reply to Chef50]

Thanks Chef50. Only 3 days in but no immediate side effects! Good luck - whichever you get, hope it works really well for you.

[Dragonfly2 in reply to MazzyUK]

Oh lucky you…Piqray is no picnic😏. Wishing you well !

[MazzyUK in reply to Dragonfly2]

Thanks Dragonfly2. One week in and so far, so good! Sorry you're finding Piqray difficult.

[Dragonfly2 in reply to MazzyUK]

Maybe your trial will give us another choice soon! 🙌😍

[MazzyUK in reply to Dragonfly2]

🤞🤞🤞

[mplevine]

yes, I have that mutation. There are 2 available drugs now that could be prescribed taken in conjunction with other drugs like fazlodex, also there is a clinical trial which I just started in combo with available meds, ask your dr about next RX to take.

[Hidden in reply to mplevine]

thank you! It’s good to know what is available ! Best wishes 🥰

[Timtam56]

Gerisplace.

Please go to my past posts and read them, and you’ll see. I too have recently been found to have the same, and have chosen to be on a trail for Piqray + Fulvestrant. I really don’t know what else to tell you other than all the other things I’ve mentioned here before. But I’m happy to answer any further wuestions once you read through where I’m at with it since December last year. So after 5.5 years on Ibrance I had to move on.

[MettavivorDS]

I had recurrence after having no evidence of disease for 5 years. Two years ago, it was discovered that my cancer had developed the PIK3 mutation after being on Lupron and Letrozole alone for 6 years. The mutation was just barely showing up on the Guardant 360 report and apelisib was the only treatment available at that time. My onc said she would never start someone on apelisib as their first targeted therapy, so I was put on ribociclib with fulvestrant and a Zometa bone strengthening drug. The Lupron was continued to keep me post menopausal. The ribociclib was dropped after only one round because the side effects were too toxic. After nearly 2 years with just the fulvestrant, Zometa and Lupron, some mild progression showed up on the last scans done on March, 2024. The Guardant report showed an increase in the PIK3 mutation, but still only 3%. A new targeted therapy for PIK3 had become available, so I was started on capivasertib. I’ve been taking it along with the other drugs I was already on. My onc says the capivasertib will help the other drugs work better. I’ve noticed a difference and am feeling better, since I started taking the capivasertib. Scans to check how the new treatment is doing are coming up next week.

[utahsara]

My wife has the Pik3 mutation with her Met Bone Cancer, who was on Ibrance for 7 months, has been now on a newer Cancer Tablet called "Truqap" for 3 months now. she takes this twice a day and gets an Fulvestrant injection once a month. She felt great on Ibrance with very few issues. On Truqap, she started on 200 mg, 4 times a day,, 2 in the morning and 2 12 hours later for 4 days, then you get 3 days off and it's a must to keep on the schedule. She had mostly nausea and diarrhea . It's Very Expensive, $25,000 per month, but can be found for free on the Manufactures website called AZ+ME. which my wife was able to get the meds for zero cost, We wish God's blessings and healing upon you and everyone here battling cancer..... AZ&Me PRESCRIPTION SAVINGS PROGRAM

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[mariootsi]

I have the mutation. They just put me on truqap. But it's awful

[Red1246 in reply to mariootsi]

So sorry to hear you’ve change meds and it’s “awful”. Not sure how long you’ve been on it but hope it’s only a question of time and you’ll feel better. I know in the beginning with Ibrance I had mouth sores, a rash and other side effects but they all went away. Sending hugs and all best wishes. K

[mariootsi in reply to Red1246]

Thank u for the hugs

[Trissh]

I am in a trial in Charlotte since late December taking Inavolisib along with a SERD. The side effects are mild, I take Metformin and watch carbs to keep glucose in range. So far, scans have been stable. --Trish

[LDR1]

I have that mutation too. You can potentially see this as good news as it expands your treatment options. I was on Piqray for 5 months, it didn’t last long for me but I was glad to have the additional option for an oral (pill-based) treatment.

[mariootsi]

I have the Pik3 mutation too. Now on truqap. Talked to mutation

[Partia]

exactnsame happened to me after 7 yrs. I also have ESRI mutation as well

[gerisplace in reply to Partia]

What are you taking now?

[Partia in reply to gerisplace]

I also have a PIK3 mutation and have been on Piqray & Faslodex for about a year....may be changing. Slight progression