Forum Discussion

noosa_blue150's avatar
noosa_blue150
Member
5 years ago

Anyone on T-DMI (trastuzumab emtansine) chemo ,early BC no metastases

Oncologist has just mentioned this to me ( will discuss more fully after radiation)
I had early BC diagnosed June 20, chemo x AC then chemo x Taxcel. Surgery jan 21 with lumpectomy, clear margins, no lymph nodes involved -all clear. At pathology hardly any evidence of cancer in tumour 
knew I was to have further herceptin till,later in 2021, and hormone treatment after radiation which starts this week.
T-DMI was used originally for metastatic breast cancer treatment but now there’s evidence of of it also being advantageous for early BC .
‘I’d be interested to,hear from anyone who’s doing this regime now 
  • claudiac13's avatar
    claudiac13
    Member
    3 months ago
    Thanks to the advice and comments all. I really appreciate it.

    I will research Kadcyla a bit more and keep you posted of how the T-DM1 treatment goes. And yes, @Tri, I feel very fortunate to have these options. 

    Thanks again all :)
  • Tri's avatar
    Tri
    Member
    3 months ago
    Hi @claudiac13
    I think @Suki is right, TDMI is also known as Kadcyla.
    I had 11 doses of Kadcyla due to residual cancer cells after 6 doses of Neo adjuvant TCHP treatment, lumpectomy and radiation therapy. 
    Whilst I now have some neuropathy in my feet it emerged early- during TCHP -  before I started in Kadcyla and I don’t believe it was worsened by Kadcyla.
    There’s a Triple Positive discussion group you can join where a few of us on the forum who have had it (or are still having it) have discussed our experiences. Great to ask the question, as Triple Positive and/or HER2 + is a less common breast cancer type and I didn’t know anyone who’d had Kadcyla when I went looking for information about side effects and experience. I thought the data from the KATHERINE trial was influential and helpful when my oncologist explained I would be having this combined Herceptin plus chemo compound drug. 
    For me it was a more manageable experience, with fewer side effects compared to TCHP, and it was great to get back some aspects of pre treatment life eg hair (woot!) but I did have to manage my expectations (and impatience 🤣) during the treatment. 
    Sending you all the best for the next phase- I felt fortunate to have these options 🌸🌻

  • noosa_blue150's avatar
    noosa_blue150
    Member
    3 months ago
    Hi cath62-
    there’s been changes since that post . Later that year I had back pain and after comparison of old and new scans ‘MRIs the radiologist decided to,amend my diagnosis - L3 secondary ca and it had been there from day 1 ( so technically de novo). Whilst I was taken aback, Onc nurse did help,me process it all and as she said they’d thrown everything at me thinking it was early BC ( sometimes with stage 4 and de novo cases they don’t want to offer surgery ). So it wasn’t detrimental to my health as such although I had time where I thought I may be lucky and escaped it all. 

    So I’m oligometastatic  - only one secondary , it’s been radiated and has been inactive since. Nothing else has cropped up , everything crossed .

    my current treatment regime from Oct 22 I think now herceptin and perjeta (im now up to 54 treatments, every three weeks now )plus hormone blocker aromasin which I find ok , no major side effects 
    add- I’m triple positive BC 
    my only health issue now is a dodgy parathyroid - totally unrelated to BC 

    hi claudia13 - I only had a few TDMI infusions back then and then moved on . Can’t recall any side effects to be honest 
    Am having trouble recalling why it was stopped, but hunk we went with herceptin instead 

  • Cath62's avatar
    Cath62
    Member
    3 months ago
    Hi @noosa_blue150, I was wondering how you were doing. I think we have different pathology but both bc in 2020 and then mets for me in 2023. Hope you're ok. I am er+ and her2- current on Fulvestrant and Ribociclib. Going ok.  I remember your posts back in 2020 and was wondering how you are doing? 
  • Suki's avatar
    Suki
    Member
    3 months ago
    Hi @claudiac13

    Sounds like you had good results from chemo and surgery.  

    T-DM1 is also called Kadcyla, so if you pop "Kadcyla" in the search function there posts with others experiences.  I didn't have it myself, but from what I understand there are less side effects than chemo.

    All the best
  • claudiac13's avatar
    claudiac13
    Member
    3 months ago
    Hi @noosa_blue150

    I am starting T-DMI treatment at the end of January. My treatment so far:

    • I was diagnosed in May 2024 - had chemo TCHP (docetaxel, carboplatin, trastuzumab and pertuzumab) to reduce the tumour, which was successful.
    • Started Herceptin injection.
    • Lumpectomy in November 2024 with clear margins and no lymph nodes.
    • Pathology came back with residual cancer (5% left)
    • Radiation over the Christmas-New Year period.
    • Completed Herceptin injection (January 2025) and starting T-DMI treatment.
    My oncologist said for me to research 'KATHERINE' trials before I made a decision and I found some great info, this being one of them: https://www.nejm.org/doi/full/10.1056/NEJMoa1814017

    The side effect which I’m concerned about if foot neuropathy, and if I do get it, I will have to go back to Herceptin injections only.

    Interested to hear how you went with it all.