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Inavolisib vs Alpelisib

Hello Thrivers
I was diagnosed last September stage 4 de-nova. The cancer had spread from my breast to lymph nodes, to spine and right hip. Pr,er positive her2 negative. I started on Tamoxifin, then Lextrozle with Riboclicib, progression more in my spine, rib and liver. I was tested for the pik3ca mutation. I then went on a clinical trial and was put on xeolda. Only got through two cycles as my cancer had spread more again. In the meantime I have had 5 days of intense radiotherapy on my breast tumour as it had grown and split my skin, the pain was awful and still I was told I couldn't have surgery. I had an oophorectomy in July so I no longer need zoledex implant monthly, only my bone injection. So I then have been off treatment for 36 days. I was referred to another oncologist a 2 hour drive away to go on another clinical trial with the drugs inavolisib and Alpelisib with fulvestrant injections. Hopefully this will start next week, but unfortunately yet again from my CT scan in August till last week my cancer has grown more in my liver and now in my left lung. To be honest I am so upset and angry. Alpelisib is available but still not on PBS if this was offered before the standard treatment xeolda then I might of been in a better position. Has anyone been on a clinical trial and has got on Alpelisib. The other one is not well known, but both work on the pik3ca mutation. Has anyone been left long in-between treatments for cancer growth. I was told by my nurse let the professionals do there Job and you do what you can control. I am very disheartened as I feel MBC for me has been here take another pill. Thank you 🩷


  • arpie
    arpie Member Posts: 7,667
    I am SO sorry to hear of your diagnosis & disease progression @Cheryln38 .... you've been dealt a nasty set of cards.  Wishing you all the best. xx

    Please consider joining the private group called Living with Metastatic BC ... the link is at the top of the page, where I am sure you'll find more targeted information.   Also, ring our help line on Monday 1800 500 258 as they often have info on clinical trials etc ... 

    Has Keytruda been mentioned at all?  An immunotherapy drug that I believe has been approved for BC Mets .... 
    KEYTRUDA pembrolizumab Homepage for Patient Site

    take care, xx
  • Amelia_66
    Amelia_66 Member Posts: 16
    How are you going with the  inavolisib / Alpelisib trial ... I'm about to start this myself in the next couple of weeks. Just wondering if this has been helpful for you. It sounds like you have been through a lot all at once, I hope things are going better, its so difficult. good luck.
  • Cheryln38
    Cheryln38 Member Posts: 10
    Hi Amelia
    Hope you are going well. I got on the Alpelisib(piqray) and fulvestrant, but unfortunately after 3 cycles I got progression in my ribs. 
    I had terrible pain and had to go hospital and after scans they saw 2 new spots.
    I then asked for a second biopsy which I had in my hip and my diagnosis had changed to TNBC.
     It was upsetting but also a relief to know why all my treatments weren't working.
    The treatment though helped in other spots and had shrunk a few lymph nodes and my liver lesions. So the trial worked for the pik3ca mutation. 
    As for the drug it self, I found it very tolerable hardly any sickness after the first week. I took my sickness tablets as required.
    I was put on metformin as my blood sugars crept up, these were checked every morning half an hour after waking up before food.
     You will be given a machine to check and you will record these in your booklets they give you. Both drugs on the trial require this.
    It gets easier after the first few days to check as it just gets part of the routine.
    Try and take your tablets same time everyday after eating. I found lunch time for me worked well. 
    You will feel fatiqued for the first 2 to 3 weeks but it gets better. I didn't get a rash, a few aches but nothing major in the 3 cycles of side effects.
    Diarrhoea and sickness are the most prominent ones but after a week I was ok. Have your gastrostop ready to.
    They should give you mouth rinses for sores, I never got any though but keeping your oral health good helps.
     Rinsing your mouth in bi carb 1/4 teaspoon and 1/4 teaspoon of salt in one cup of warm water after meals helps to. 
    Have you had all your tests beforehand? I had my eyes tested before and just before Christmas I had another, even though I was off the trial I wanted to complete everything.
    I think it's very good treatment and I hear the other one is as well from other ladies in the UK. Just wasn't for me.
     I am doxorubicin pegylated liposomal at the moment had two cycles, one more before scans. This treatment has been my worse. Had a few side effects.
    My oncologist has sent my biopsy of to CaSP in Sydney. I just need more blood tests and then hopefully with the research on my DNA etc they will find treatment catered to me.
    I am an unusual case as Iam on my 4th line in 16 months, a change again in my cancer. Er+pr+ her 2 negative originally, then pik3ca and now Tripple negative. 
    The fulvestrant jabs go into your upper bottom in the muscle, it does hurt a little at first and aches in the muscle but for me it wore off by the time I got home. I travelled 4 hours for this trial there and back. Just rest after you have them.
     I had them first on Day 1, Day 15, Day 28 then only Day 1 again of each cycle. 
    I wish you all the best lovely. it's really a good treatment. Two tablets too that's what I loved.
    Let me know how you go. I will be thinking of you 🩷🩷

  • ter1969
    ter1969 Member Posts: 2
    Hi Amelia, I was also on Piqray and Fulvestrant but unfortunately, had to cease this medication due to progression and also too many side effects. I went through Novaris drug company to purchase this medication directly as it is not on the PBS.
    I have now started Keytruda (immunotherapy) + carboplatin + gemcitabine chemotherapy every 8 and 15 day of the month. I have only completed 2 cycles as yet so no update on how its going so far. I also have pik3ca mutation and triple negative disease involving breast, lymph node, chest wall, lungs and bone mets. Praying this new regimen works. ter1969
  • Cheryln38
    Cheryln38 Member Posts: 10
    Dear ter1969
    Hope you feeling well. I am very interested in Keytruda, this has been mentioned as a possible treatment for me. 
    Have you found your combination tolerable so far. 

    I am finding the doxorubicin pegylated liposomal awful.
    I was very lucky with my other treatments with side effects, but this one is really knocking me about. I am antibiotics at the moment as I got an infection.

    I am hoping when all my tests are in with CaSP my oncologist finds a great combination.
    Every treatment I have had, I had progression and it's tiring getting used to one and after 3 cycles at the most, I have to start again. 
    After the piqray, I was happy some shrinkage in some areas,but new spots in my ribs this time. 

    I have it in most of my spine, skull,lymph nodes,ribs, right hip, liver,neck lymph and left lung.
    My lung though didn't show up on my last CT but was there on my pet scan prior. It was quite small so hopefully it stays that way.

    I am glad though I insisted on another biopsy and to find out my original diagnosis has changed, I might have a chance to get the right combo. 
    I would love to hear any information on your treatment if that's OK. Keep strong 💪 

  • Amelia_66
    Amelia_66 Member Posts: 16
    Hi @Cheryln38,
    thanks for filling me in, that's really helpful. I hope you get something useful from your CaSP screening, that is what alerted my oncologist to my pik3ca gene, and probably is the reason the CDK4 treatment stopped working. I had a similar thing with that initial line of treatment, it reduced tumors in my lymph nodes and lining of my lungs considerably, but then new mets popped up in my liver and bones. I've had fulvestrant before and had no issues, just a bit of tenderness at the injection site. I had that administered by Nurse at Home, so I am hopeful that might again be an option as its a 4 hr round trip also for me to the trial hospital. Thats really tricky that your diagnosis has changed so much. Mine also changed from my very first diagnosis with early BC but that was more than 20 yrs ago, went from slightly pr+ to er+ when I had a recurrence in 2020. Mine has been quite a sneaky operator, travelling from the right breast somehow to the left lymph nodes ... & nobody had any real answers how that could have happened. Its all academic at this point though and while I haven't hit the treatment jackpot yet I'm doing pretty well and feeling hopeful for a bit longer. Good luck with everything & hope your side effects with the new drugs settle down.

    and @ter1969 - I'm sorry to hear that Piqray wasn't for you and I hope that the Keytruda combo is the ticket. Good luck and keep us posted.

  • ter1969
    ter1969 Member Posts: 2
    @CherylIn38, Thanks. I will certainly keep you posted on my progress.