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Long term Herceptin

SueRi Member Posts: 40
edited March 2023 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: 1,111
    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: 8
    edited September 2023
    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
  • rok24
    rok24 Member Posts: 7
    edited January 1
    Hi, sorry I am new and trying to navigate the system. I commented on your post instead of creating a new discussion. Have now made the edit. 
  • noosa_blue150
    noosa_blue150 Member Posts: 211
    It is great to see how many are doing ok on herceptin and perjeta .I’m soon to have no 40 , and am sitting on no evidence of active disease -first diagnosed I. June 2020 . Had initial,treatment as if a EBC case (chemo/lumpectomy/ radiation ) and herceptin post treatment, the L3 spot found and they realised it had been there since day 1 (a radiologist revised his report )So de novo .started H&P regime Oct 21. A few side effects - itchy skin and diarrhea , but manageable .I’m planning a trip to Japan for July 
  • Cath62
    Cath62 Member Posts: 1,274
    How these are good stories. I don't have the same sub type for my mets but it still gives me so much hope. 
  • LizetteH
    LizetteH Member Posts: 16
    It’s so good to hear about people being on Herceptin long term. I was on it for a year in 2020-21 and went back on it late last year, after chemo,  as the cancer had returned. I haven’t been game to ask how long I can take it for and had thought for some reason it was only one year.
  • Blossom1961
    Blossom1961 Member Posts: 2,374
    @LizetteH I was seated next to a lady in the day ward who had been on herceptin for 17years and was still going well.
  • LizetteH
    LizetteH Member Posts: 16
    Blossom1961, I’m not sure how to reply to a comment so hope you see this! That’s amazing, 17 years. There’s nothing better than hearing stories like this.
  • LizetteH
    LizetteH Member Posts: 16
    @Blossom1961. Oops I think you have to use the @ symbol. Anyway, thanks for that comment about the lady who has been on Herceptin for 17 years.