long term herceptin for bc mets....

MazziMazzi Member Posts: 11
edited February 5 in Metastatic breast cancer
Found an old discussion from Kari_2015.  Just wanted to let ladies know that I have been on Herceptin for 13yrs. Managing to keep lesions only in bone so pretty happy with that... Only know one other lady that is on herceptin still...been 11-12yrs for her too.  My understanding is that if you are going to have problems cardiac wise it is more likely to happen in the early stages. I have reg echo's done.  Get pissed off with having treatment at times but very thankful for this drug... would love to hear from others that are on herceptin long term.. cheers :)


  • arpiearpie Mid North Coast, NSWMember Posts: 2,775
    That is terrific,  @Mazzi
  • wendy55wendy55 Copper Triangle South AustraliaMember Posts: 473
    Hi @Mazzi,
    just wanted to say thats fantastic, I hope that I can say I am still on treatment in another 9 years time, you give me hope!!!

  • MazziMazzi Member Posts: 11
    Glad to give you hope wendy55.  That is why I thought it was time for me to get onto this site and share. <3
  • viking1viking1 Perth, Western Australia, NORMember Posts: 288
    That's wonderful to hear it is working so well. I don't have mets  but had a lumpectomy, chemo, rad and right axillary clearance in 2017-2018.  Her2 positive so had Herceptin x17 doses every three weeks until my treatment ended in oct 2018 (started this joy ride hmph! In June 2017).  My veins were shot from chemo so had all my Herceptin sub cut in my thigh. I highly recommend this as it's quicker (about 20 mins including paperwork) and not really sore if they inject slowly. In the end I could hardly complain … just smarts a little! Saves the veins! Xxx
  • KeelyBKeelyB Member Posts: 15
    You provide such hope to us all!  Thank you for sharing!

    I've been MBC HER2+ for over 7 years now and while I'm still on Herceptin, I've had to add Perjeta as I had some new growth beginning of 2018.  

  • Beryl C.Beryl C. Member Posts: 148
    HER2 positive and metastatic as the biopsy of right lung showed inflammation which they took very seriously :) left breast masectomy and lymph node clearance Dec. 2011. I had my first Herceptin infusion on 18th July, 2011 and continue to have infusions every three weeks. This Sat. is no. 103. I have three monthly heart scans and so far so good. I took Arimidex for about six years and then changed to Exemestane. I've had three local recurrences which meant two surgeries and last Aug. 15 radiation 'zaps'. Good to know that others are doing well with long term treatment. Thanks Mazzi for starting this discussion! xBeryl
  • MazziMazzi Member Posts: 11
    thanks for sharing everyone. I had started feeling quite alone as everyone comes and goes down at treatment. I had Ct scans today and for the first time am quite worried about the results. Find it is getting harder each time. Anyway will let you all know how I get on .. cheers Mazzi
  • Beryl C.Beryl C. Member Posts: 148
    Mazzi just to let you know that I find each new concern, often expressed as, 'we're interested in .........', just that bit harder to take in. Although I use zany and often dark humour there are times when it doesn't work and I find it difficult to 'push through'. I've learned it best to let myself feel the anxiety, a bit like finding a quiet corner and settling into the reality, maybe read or knit, but I don't answer my phone. As I write this I'm thinking of how sick animals retreat and curl up. Some wisdom in that. Trust you are sleeping well and indulging yourself in some way. Thanks to BCNA we are never alone. xBeryl
  • arpiearpie Mid North Coast, NSWMember Posts: 2,775
    All the best for your scan results @Mazzi  - the bloody wait time is still the pits.     Try & keep doing stuff that you really enjoy - uplifting stuff ...... if you want a few laughs - go onto Friday Funnies, or Naughty but funny ,,, hopefully some of the cartoons will get you laughing out loud!

    You are not alone - Take care, big hugs coming your way  xxxx

  • kmakmkmakm MelbourneMember Posts: 7,188
    Hang in there Mazzi. Big hug, K xox
  • MazziMazzi Member Posts: 11
    thanks everyone. went to oncologist yesterday to get results of CT scan and they are now sending me for a colonoscopy..not sure when that is going to happen...fuck (can I say that?) the waiting game continues. trying not to worry too much as have no symptoms so onc is pretty sure it will come back ok. 

    the roller coaster of  'our normal'.  it just continues LMAO!!
  • SoldierCrabSoldierCrab Bathurst NSW Member Posts: 3,203
    oh Mazzi 
    Sorry you have to go through this  Roller Coaster ride :neutral:
  • MazziMazzi Member Posts: 11
    thanks. go in to do paperwork Monday so hopefully it won't take too long :)

  • arpiearpie Mid North Coast, NSWMember Posts: 2,775
    edited March 1
    Bugger bugger bum!  Yep, you can drop the F bomb ....   Hope all goes well with the colonoscopy @Mazzi .   they are never fun.  Xxx
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