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Stage 4 lobular, what treatment next?


My 49yr old sister has stage 4 lobular diagnosed last April. She has a PIK3CA mutation.

She was diagnosed stage 2 , 5 yrs ago and was treated with taxol and then 5 yrs of tamoxifen

She has bone mets and also had a hysterectomy and they found lobular in uterus/ovaries etc back in April of last year.

She failed on 1st treatment of Kisqali

She is currently on Ibrance and Letrazole and it appears to be failing as well.

She also has Chrohn's , therefore her doctor is against trying Verzenio or Piqray(because of GI side effects).

We are in Canada so Trupaq is not an option at the moment. I also think it is known to cause bad GI side effects.

Just wondering if anyone here knows of any other combos or monotherapies she could try.

Right now she is getting radiation for one 2cm met on T2 that showed up over a 4 mth period on Ibrance/Letrazole combo.

Thank you so much for any insight you may have.



  • moderators
    moderators Posts: 7,884

    Hi @bluebirdlady , We are very sorry to hear what your sister is going through, and you naturally too. It sounds very complicated due to the Chrohn's disease, that is, what is compatible.

    We're really sorry that Trupaq isn't available in Canada. Wondering if there is a way to work with doctors to get it in some way. Has she gotten a second opinion, or if they offer it, could they take it to the tumor board if they haven't already?

    Perhaps others have some insight, but we're glad you found us here.

    Sending gentle hugs to you and your sister.

  • kbl
    kbl Member Posts: 2,675

    @bluebirdlady Hi. I’m also sorry for your sister and am so glad she has you. I also have a wonderful sister who is always ready to listen. I have Stage IV lobular to all of my bone, bone marrow, and stomach. I’m not sure, but I’m sure it’s elsewhere that I don’t know about, as lobular is very sneaky. Have they mentioned Xeloda or Enhurtu? If she was Her2 negative but at least 1+, that might be an option. Since you know she has the PIK3CA, you probably know she doesn’t have the ESR1 mutation? I’m on Ordersu for that, and that would be an option if she has the mutation. I was also on Faslodex for 28 months, and that worked fairly well. When Letrozole doesn’t work, they usually try Faslodex. Please message me any time. I’ve had the lobular for 10 years in my bone and bone marrow and over five years in my stomach. I am responding to the Orserdu at the moment.

  • bluebirdlady
    bluebirdlady Member Posts: 3

    Many thanks for your comments and recommendations. I will pass this info along.