I am back on here and I wanted to share that my blood biopsy last month showed a PIK3 mutation. Then, since I am a reader, I found out that Inavolisib has just been approved to be taken with ibrance and fulvestrant I currently take ibrance and letrozole. It seems the Inavolisib has less side effects than Piqray which is what the onc suggested I try. What do y'all think of Fulvestrant injections vs. Letrozole? less side effects? Thanks and I think sharing information is vital! Also, I recently found out that you can have any bloodwork checked at walkinlab . com .... the cancer lab said my 15-3 went from 489 to 528 in just a week, after previously dropping from 635 to 489 less than a month before. I was suspicious but decided to check it out when even the PA I saw the other day said that was weird and the test was only $55 and you know what? It showed my 15-3 at 298! so something is rotten in denmark and they even had a diagnosis on "my chart" that wasn't even mine! grrrrrrrrrr ... thanks for letting me vent, I know God's got me and know He is leading me in the way I should go, thank You Jesus, amen! Note: I have no financial interest in walkinlab.
FDA approved Inavolisib for PIK3 muta... - SHARE Metastatic ...
FDA approved Inavolisib for PIK3 mutation
I am so happy you are doing well. Thanks for the information. I have been on letrozole and Ibrance 125 mg since April 2017. My scan 2 weeks ago was great but my liver enzymes were elevated. he wants me to stay off Ibrance 4 weeks and recheck ALT and AST.
I had a blood biopsy also but have not received the results. I am relieved that new drugs are being released for us.🙏
Hi Susan1953, I also have been on Ibrance, now 100mg and Exemestane since 11/2019. I had two bone mets to my lowe spine which have been stable and unremarkable since my first PET scan. Recently, my liver functions ALT & AST have risen and decreased for no "apparent reason". I am very curious to see you have experienced the same thing.
I will have blood work again next week to check my liver enzymes. Hope they are down so I can get back on Ibrance.
Good morning. I am on a clinical trial with Inavolisib and it has been granted Breakthrough Therapy Designation by FDA but not yet formally approved and available for treatment unless in clinical trial. It has been a very "easy" treatment thus far. Side effects are diabetes which can be treated with metformin and just a bit of fatigue in my experience so far. Scans have been stable since late December, scans again this week. Hoping for continued stability. --Trish
Hi there. New here (first post!). I'm in the UK 👋. Really interested to see this Trissh as I am just about to start a clinical trial (maybe same as I know it's an international trial) and will get either Piqray or Inavolisib - don't know which yet although it's open label so I will know. I was worried initially but now just want to get on with it. I already eat low carb and low sugar so hoping to miss the hyperglycaemia! Glad to hear you are doing well on it. I've just had two years on Ribociclib and Fulvestrant and have been feeling really well - sad that I couldn't carry on for longer. Good luck with your scans.
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Hi Godbeforme. I'm glad you are finding helpful info on this site. I've been on Fulvestrant and Ibrance for 6 years. MBC remains stabilized, thank you Jesus! Side effects are mostly fatigue and in general not feeling well a couple days after injections. The doctor will continue this treatment until it runs its course. Hopefully they'll come up with something new before this happens bc chemo maybe the only option. Keep us posted. Best of luck to you. God Bless.
I read Inavolisib was being approved in the US by the FDA in November. Are you saying it is available for perscription now?
All I can speak to is the Fulvestrant (Faslodex injections) I had a grand total of 200! of them. I never had the pill form, but I can tell you that the shots hurt. There are some ways to help alleviate some of the pain. First off, make sure (ask the nurse) that the syringes are warmed, not to room temp, but body temp. This helps with it dispersing into the muscle and also should thin it just a little to make the physical injection easier... it's a most viscous serum.
Massage your gluts both before and after injections help with blood flow so there may be smaller lumps after the fact. Using a heating pad on injection sites the day of helps.
I will say that I've been off Ibrance and Faslodex for about 3 months now... and my bone pain has decreased significantly. By the way, since then they put me on Orserdu. My recent Pet Scan showed that my metastasis is once again stable.
To God be the glory for all our days, both good and bad.
Thank you for sharing your story. It is very encouraging, as I was taken off Inrance + Faslodex a little over a month ago after only 4 months due progression and the ESR1 mutation. I have been on or Orsedu just over one month and I’m praying, like you, it stabilizes my Mets.
Best of luck to you, Bravespirit! Keep me posted how the Orserdu works for you!
Thank you! I will report back after my next set of labs.
Afinitor and faslodex
Wondering about meds for high cholesterol
Switching from Letrozole to Fulvestrant, markers going up fast, any advice?
New treatment just approved by the FDA 
Shortness of Breath
