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De novo questions

ericalynn Member Posts: 21

De novo Her2 + ladies,

1. How long were you on Herceptin and perjeta before ( if) you had progression?

2. If no progression, how long have you been Ned or stable?

3. Who all has gone off treatment?

I know there’s a HUGE Denovo thread, but I get lost in there. Thank you sisters. I am grateful for the support.


  • amontro
    amontro Member Posts: 184
    edited October 2022

    Hi Erica -

    I can't remember if I told you in another thread, but in 2008 I was diagnosed De Novo HER2+ from the start, with mets to lung and spine.

    After a mastectomy and radiation, I started with herceptin and anastrazole, a daily pill.

    My mets have remained the same since then. Now I still get herceptin every 3 weeks, and anastrazole every day. I guess you could call it NEAD because it's at a standstill.

    I've known quite a few women who have had stage 4 for a while. Sometimes we don't know it, but a new treatment may be just around the corner. Herceptin was a relatively new treatment at the time and I was told not to expect too much from it (I was told I was going to die). So hang in there.

    - Anna

  • stage4_mom
    stage4_mom Member Posts: 1
    edited October 2022

    Hi Erica,

    I was on Herceptin & Perjeta for one year. I’ve been NED for 4 years. I was diagnosed in 2017.

    I still take a daily pill as part of my hormone treatment but otherwise I completed my treatment.

    Actively nourish your hope!!


  • ericalynn
    ericalynn Member Posts: 21
    edited October 2022

    thank you! So you are stage 4 and they took you off herceptin? That is exciting!! Where did you Mets to?