Secondary breast & Lymph node cancer spread to brain, second time in brain & Tucatinib/capecitabine treatment is only hope i have left

Hi all, has anyone had Tucatinib/capecitabine treatment? If so how did you get on with it?

I was diagnosed with BC in 2021 & went on to have chemo, a mastectomy and radiotherapy.I then had a seizure in Oct 2023 & found out it was a tumour relating to the BC  & then had an operation to remove it followed by gamma knife radiotherapy followed by more radiotherapy to target the smaller tumours.A few months later i had 18 weeks of chemo to find that theres more cancer growing in my brain and the treatment thats available is quite new so i'm wondering if anyone has had either Tucatinib or Capeccitabine in tablet form…if so how was it for you?

  • Hi Mkelly, 

    I came across another member of our community just this morning who seems to be in a similar situation with breast cancer that has spread to lymph nodes and the brain and that's  and I would suggest you read this post with the title Secondary with brain mets and feel free to respond to it if you want to. I am not sure whether they also had Tucatinib/Capecitabine treatment but they mentioned in their thread being on some form of targeted therapy. Your stories sounded very similar and it can be comforting to talk to someone else who is currently in the same boat.

    You will find information on our website on Tucatinib and Capecitabine (and on trastuzumab if that one is also relevant to you) and if you have any questions you can ring our cancer nurses on this free number 0808 800 4040 - their helpline is open Monday to Friday from 9am to 5pm. 

    I really hope that this forum will allow you to chat to others who are in a similar situation and who have tried the same treatment and I wanted to wish you the best of luck with the start of your treatment and that you suffer no noticeable side effects. 

    Best wishes, 

    Lucie, Cancer Chat Moderator