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Long term Herceptin

SueRi Member Posts: 40
edited March 23 in Metastatic breast cancer
Hi was just wondering how long people have been on Herceptin and how they are doing?

I have celebrated 14 years this January and will have my 238th infusion next week. I have had a mastectomy and am waiting to have the other one removed as I hate the lopsided feel and having all my clothes moving to the left very annoying would much rather be flat. So far everything is stable and the Herceptin is what they call maintenance dose to keep me stable.
hope everyone is coping as well as they can



  • Julez1958
    Julez1958 Member Posts: 946
    Hi @StarGirl
    Great to hear you have been stable on Herceptin and Perjeta for 8 years .
  • Haitch
    Haitch Member Posts: 3
    Wow that's good to hear. I was diagnosed Feb 22 and was told I should have years - you are a great example!
  • Vicki White
    Vicki White Member Posts: 26
    Hi all, in 2012 I was Her2Positive and stage 4. Had a single mastectomy but wish they took the other one the same time as I'm sick of the neck pain and the clothing thing. I was on Herceptin every 3 weeks until Aug 2021, when I went into remission. I always had side effects with intravenous but never with the subcutaneous. Good luck ladies x

  • Ccaza
    Ccaza Member Posts: 7
    edited September 15
    I was on Herceptin and Perjeta for 6 years, I am on a break. they finally changed the rules allowing a break and my doctor had talked of stopping it after 5 years, I managaed to drag it out to 100 doses which ended  up being the 6 years due to a few delayed or missed doses over the years. I have had 2 scans that have been ok and I am due for a PET scan in  February so fingers crossed. My secondaries were in the 3 different lymph nodes so after Chemo, raditaion and the time on Herceptin he felt it was worth having a break. It is a worry none the less but at least I do have the option to go back on it. I didn't have too may side affects