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New metastatic diagnosis

sal1979
sal1979 Member Posts: 7
edited June 2 in Metastatic breast cancer
I’m new to this group. I’m 43 years old and today I was told I have ER, PR negative, HER2 positive metastatic breast cancer. I have mets in lymph nodes, bones and liver. No symptoms- only had a mammogram as my Mum was diagnosed with breast cancer 2 months ago. I’m married with an 8 year old son and 11 year old daughter. It goes without saying that I’m absolutely devastated. Not only for myself but more so for everyone else this will affect.
I’m starting docetaxel, trastuzumab and pertuzumab on Tuesday. Can anyone provide me with any information on how long this treatment has controlled their cancer for? 
Thank you.
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Comments

  • sal1979
    sal1979 Member Posts: 7
    Thank so much for your message @Ktre. I’m still in shock and feel totally numb. 
    Great work re your fundraising.
  • Julez1958
    Julez1958 Member Posts: 942
    Hi @salbrooks
    So sorry to hear this news.
    Shock is normal - as is denial, grief, anger.
    Please consider joining the “living with metastatic breast cancer” private group on here too.
    Being in Melbourne  you will have access to some excellent care and many ladies live long lives with MBC.
    There are many more treatments available now than even 10 years ago .
    All the best.
  • sal1979
    sal1979 Member Posts: 7
    Thanks so much @Julez1958. I’ve put in a request to join the group.
  • Blossom1961
    Blossom1961 Member Posts: 2,213
    edited June 1
    Hi @salbrooks I have her2+ and ER/PR negative Mets in lymph nodes and bones. I was treated for this same  primary cancer in 2018/19 and it appeared to disappear. It came back in 2022. I am now on Herceptin and Perjeta every three weeks and zometa (bone strengthening) every three months. I have a pet and ct scan every three months. My cancer is currently inactive in all but one lymph node due to this treatment. Our cancer is one of the few that has so many options with targeted therapy. Herceptin is tratzumab and perjeta is pertuzumab, same as what you are having. The doxetaxol is just for the short term to kill off what they can. 
  • jennyss
    jennyss Member Posts: 1,853
    Dear @salbrooks,

    from jennyss in Western NSW
  • sal1979
    sal1979 Member Posts: 7
    Thanks so much @jennyss
  • sal1979
    sal1979 Member Posts: 7
    Thanks for sharing your story @Blossom1961. You have given me so much hope which I really need right now.
  • Blossom1961
    Blossom1961 Member Posts: 2,213
    @salbrooks I met a lady who has been on Herceptin for fifteen years and she was doing really well.
  • sal1979
    sal1979 Member Posts: 7
    Thanks @Blossom1961, that really gives me hope
  • Jenny K
    Jenny K Member Posts: 21
    Hi sal1979, I was first diagnosed with horman receptive BC in 2011, in 2015 metastatic BC in bones were HR2+, having been on Tamoxifen tabs, Herceptin and Perjeta, three wkly infusions since and doing very well everything is stable. Wishing you all the best.
    Cheers Jenny 
  • sal1979
    sal1979 Member Posts: 7
    Thanks @JennyK. So great to hear that you are doing so well! 
  • Edithead
    Edithead Member Posts: 9
    Dear Sal, sending you hugs. I am in Perth, so too far to be of practical support, but hope you are taking care and getting love and support. Josie x
  • Cheryln38
    Cheryln38 Member Posts: 8
    Hi there I was diagnosed last September stage 4 de nova er,pr + her 2 negative. At that time it was in my left breast, lymph nodes and bones. I started on Tamoxifen, then letrozole with Riboclclib, Zolodex implant and bone injection monthly. Unfortunately the treatment didn't work and my recent scans showed it's in my liver. I am now awaiting to see if I can go on the Capture trial if all my tests come back ok, I have the PIK3CA mutation. Just wondering has anyone started on the alpelisib and fulvestrant or anyone on the Capecitabine and any bad side effects. It's been a bit of a whirlwind from having no symptoms and just going for my normal mammogram as BC runs in the family and told straight stage 4. I have two teenagers who are amazing and give me plenty of strength. Look forward to hearing from anyone with information. Keep strong my sister's 🥰
  • Julez1958
    Julez1958 Member Posts: 942
    Hi @Cheryln38
    Have you joined the private group on here “ Living with Metastatic Breast Cancer”?
    With side effects from any drug, some get them , some  don’t, some who get them only get them mildly , there is no way of telling until you start.
    Have you got a dedicated McGrath breast care nurse? They are usually great  for  advice on how to deal with side effects from breast cancer drugs.
    Also if you add your town to your profile people may be able to give you more targeted advice.Call the helpline if you need help with that.