Her2 positive

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  • Julz67
    Julz67 Member Posts: 16
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    @riss81 where did you get the tattoo brows? I've never heard of them & have noticed my brows starting to thin.
    I'm HER2+ hormone negative they said it's protein based, just completed round 4 chemo two days ago 
  • Tri
    Tri Member Posts: 68
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    @Cheri and other thread contributors thanks for raising the questions and generously sharing your stories - very helpful and demystifies things! 
    I am sorry this is a bit long but I wondered if sharing my experience of neo adjuvant treatment might be helpful to you or others. 
    I was diagnosed in February this year at age 61, HER2 positive, oestrogen and progesterone positive (triple positive) and my cancer type is invasive lobular cancer. I had a lump of just over 30 mm. 
    I had 6 cycles of neo adjuvant treatment- Herceptin, Perjeta and chemo (Docetaxel plus one other) intravenously through a port surgically inserted in my right arm. 
    I understood that pre-surgery treatment would be useful because my treating team would have early insights and data about whether the chemotherapy is working (or not) and benefits included reducing the tumour, insight into drug tolerance and what options for chemotherapy might be effective after surgery depending on my pathology results. 
    I had a mid-way ultrasound and when it showed that my tumour was shrinking, as a patient, I feel that was a really significant benefit. It was encouraging to me, my family and friends.
    I have found it helpful to mentally set some ‘milestones’ for each stage of my HER 2 treatment regime in my case: neo adjuvant, surgery, radiotherapy, post-surgery treatment. 
    Breaking it up gave me moments to pause and appreciate where I was at - I felt happy to welcome back my taste buds or my hair and fingernails growing back a bit a couple of months after finishing neo adjuvant therapy. 
    During my neo adjuvant phase I was grateful my oncologist was so concerned about making my experience sustainable very early on, taking into account my working life, my spouse’s experience of this and my wellbeing. She was open to tweaking my regime - for example changing to a weekly instead of a big dose every three weeks. In the end I stayed on the conventional treatment cycle.
    Yes I did encounter side effects - not all at once but I experienced fatigue, dehydration, diarrhoea, mouth ulcers, sore feet and fingers (neuropathy) and loss of taste.
     I was unlucky and contracted Covid unfortunately very energy sapping. 
    I highly recommend an oncology exercise physiotherapy program, an adapted program focused on strengthening, wellbeing and building stamina; I started towards the end of my neo adjuvant phase but wish I had done so earlier in the regime. 
    I was fortunate to have a very skilful breast surgeon for my lumpectomy and I have completed 15 sessions of radiotherapy at our local radiology unit. 
    I am now completing the remaining treatments: I’m having Kadcyla every 3 weeks. 7 more cycles to go…! Last one in late April if all goes well. 
    I hope you have a positive experience and are kind to yourself if you have tough moments. 
    I feel a little overwhelmed by the kindness and good vibes that have come
    my way and I am just very grateful for the support of platforms like this, my husband, sons, family, friends and colleagues - especially those who’ve experienced breast cancer who’ve come forward with generous insights and care - and incredibly skilled professionals in every part of the health system who are busting their brains to help. 
    That’s what keeps me inspired to do my bit and give it my best shot. 
  • arpie
    arpie Member Posts: 7,733
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    Well done @Tri .... bad luck about getting covid on top of it all xx

    Welcome to the forum - whack up any question you like & hopefully some of us will be able to help with an answer xx. Feel free to check out this post, with lots of info on 'the rest' of the forum, where we share recipes, pics of our pets & gardens, our arts & craft & anything else that we do in our 'down time' .....
    https://onlinenetwork.bcna.org.au/discussion/23477/a-big-welcome-to-all-our-new-members#latest

    Wishing you all the best with your ongoing treatments xx
  • Tri
    Tri Member Posts: 68
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    Thank you @arpie! And thanks @cheri for posing the question