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Experimental Inavolisib Seems Promising for Certain Metastatic Breast Cancers

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Experimental Inavolisib Seems Promising for Certain Metastatic Breast Cancers

Dec 7, 2023

If approved, the medicine may be an alternative to Piqray for treating certain cancers with a PIK3CA mutation.  Read more…

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  • aukerdeb
    aukerdeb Member Posts: 3
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    I started Truqap a few weeks ago. I had to pause 2 times because I had a full body rash. I just started up again last week on a reduced dose. I take 1 tablet in the am and 1 at night. So far, no rash.

  • shazzakelly
    shazzakelly Member Posts: 620
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    I’ve been on Inavolisib as part of the Tapistry trial for 12 months now. I take it as a stand alone treatment. It’s the easiest treatment I’ve been on in my 10 years as Stage 4. No side effects at all. Blood sugars just ever so slightly raised.

  • cure-ious
    cure-ious Member Posts: 2,756
    edited March 7
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    Shazzakelly, Wow, ten years for ER+ MBC is so terrific, congratulations! What other treatments have you had that worked well? Which PI3KCA mutation(s) do you have, and when did it show up? Because Inavolisib has now finished up a phase 3 trial it may go to FDA for approval soon,so its especially helpful to know that side effects are mild, and that the drug can work well as monotherapy. Presumably your cancer did not also develop an ESR1 mutation (because you probably would then also need an oral SERD? Maybe for those of us with both ESR1 and PI3KCA mutations, it would make sense to take Elascestrant (to degrade the ESR1) and then Inavolisib (for PI3KCA) as successive treatments. Thanks!

  • luce
    luce Member Posts: 354
    edited March 7
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    Shazzakelly So glad you’re doing so well! May I ask location of your metastasis? I’m guessing you’re bone-only? Thanks!

  • shazzakelly
    shazzakelly Member Posts: 620
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    Cure-ious: The mutation was picked up a year ago when I had foundation testing done to see if I qualified for the trial. A tumour sample from 4 years ago was used. To qualify for this arm you needed 2 or more mutations on the PIK3CA gene I have mutations on E545Q and H1047R.
    I also have a ESR1 mutation on S118P.

    I am in New Zealand where cancer treatment is free but we don’t have all that many options available Elascestrant is unlikely to be available anytime really.

    My most successful treatment was Paclitaxol which I had weekly for 4 years and then Letrozole for 3 years. Then I had 2 years where I burnt through Capcitibine, Ibrance with Faslodex, Vinerolbine, doxorubicin and Tamoxifen which bought me to being the only person in New Zealand on this trial.

    LUCE: My Mets are bones, lungs, liver and vaginal wall. Originally I also had ovaries, one kidney and my thyroid as well as most of my internal lymph nodes. Taxol was the drug that cleared most of it up,

  • cure-ious
    cure-ious Member Posts: 2,756
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    ShazKelly- Just to clarify things, you are in an arm with Inavolisib monotherapy (no Fulvestrant, etc) for which you qualify because you have two PI3KCA mutations? And is your cancer has gone to unusual places (ovaries, vaginal wall, kidney, thyroid) -is it lobular by chance? And lastly, in the most recent testing (assuming you get Guardant testing every so often) what other mutations were picked up? Thanks for sharing, your situation is so unusual and I hope you have continued success!! I hope some immunotherapy breakthrough pops up soon. do you have more options in Australia? They have world-class clinical and research there, Jane Visvader is an old friend who works there…

  • shazzakelly
    shazzakelly Member Posts: 620
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    that is correct, the arm I’m in is Inavolisib monotherapy and you need 2 or more mutations to qualify.

    I do not have lobular just garden variety IDC, not sure why my cancer pops up in these unusual places.

    I’m in New Zealand not Australia so not many other options left for me. Next up we go old school and try Gem-Carbo.

    My other cancer related mutations were:

    ASXL1, MAP3K1 (2 mutations) TBX3, ESR1