New to posting online...bit about me & Living with liver metastases

KimWKimW North Balwyn, VICMember Posts: 75
Hi Ladies,

Im learning my way around the new site and haven't been one for posting much on here but here goes.
Bit about me part brief as I can.
Stage 3 bc ER+ PR+ HER2+ 8 nodes positive in 2002 age 28yrs, mastectomy, rads, AC chemo & Taxotere chemo. Tamoxifen / Zoladex.
October 2005 break in treatment to conceive, after a missed miscarriage then an ectopic pregnancy, finally 3rd and final attempt our baby girl was born may 2007.
May 2007 Tamoxifen Zoladex again,
Nov 2008 oophorectomy,  Arimidex, Femara,
Oct 2011 Delayed recon R breast & prophylactic L breast with bilateral expanders 
May 2012 Diagnosed with septacemia and widespread liver mets May 2012, 2yrs Abraxane (first year 3wks on 1wk off, second year fortnightly) combined with Herceptin.  Liver mets shrunk 30%.
Dec 2013 Bilateral expanders finally removed and implant put in place after 18mths with rocks on my chest.
May 2014 to current been on Aromasin and Herceptin.

15yrs now since first diagnosed and 5yrs living with mets into this new normal life that is forever changing and I would love to hear from others how they have managed living their new normal after a mets diagnosis.

Comments

  • socodasocoda LeumeahMember Posts: 1,287
    Hi @kim wood, just sending a big hug. You're awesome. Xx 
  • KimWKimW North Balwyn, VICMember Posts: 75
    thank you xx hope your going well with your treatment
  • socodasocoda LeumeahMember Posts: 1,287
    Thx Kim. So far so good, coming up to one year scans this weekend ;) so I'm sensational until told otherwise :) Xx
  • fairydustfairydust Member Posts: 290
    @Kim Wood thanks for posting  fifteen years since diagnosis thats pretty good. As for living with mets no knowledge.
    I can though send my admiration and hugs..Lovely to hear you have a beautiful daughter. Best wishes
  • Brenda5Brenda5 Burrum Heads, QldMember Posts: 1,464
    You sound like an exceptional woman Kim. The longer you hang in there the closer time gets to finding a cure and be done with it all. Here's hoping. <3
  • KimWKimW North Balwyn, VICMember Posts: 75
    thank you for all the lovely comments... thats it more and more treatment options are becoming available.  

    When I was diagnosed 15yrs ago finding another women in her 20's was rare and we didn't have much by way of online support back then either, how things have progressed for the better.  Im still on my first line treatment having used just one line of chemo Abraxane so far, so if I progress in the liver again I can go back onto abraxane to see if it works for a second time. For the time being the less invasive option of Ai drug Aromasin combined with ongoing 3wkly Herceptin infusions seems to be doing the trick halting progression and has kept me stable for 3yrs now, yay for herceptin miracle drug. Without BCNA there is no way I would still be here as I would not of been able to afford the 5yrs of Herceptin Ive received thus far.

    Still pinch myself my daughter was in kindy and 5 when I got mets now. my daughter is in grade 4, so lovely watching her grow and change.
  • angg66angg66 Melbourne VicMember Posts: 87
    Hi Kim,
    Welcome to the site. Sorry you are here under these circumstances. I am in a similar boat to you in some ways. I was diagnosed with breast cancer in 2012 in my left breast. After a lumpectomy, chemo & radiotherapy in 2013, I thought I was ok. Got on with life which includes my two beautiful children- a girl who is currently 9 (grade 4) & a boy aged 7 (grade 1). But after complaining of a sore back, the doc found liver & bone mets in early 2016. Initially I took the diagnoses hard, but for the sake of my kids I've learnt to live with my new normal. 

    My mets are stable so only on Faslodex at the moment. I am living life to the fullest as a result of my mets diagnoses. My kids & husband are my priority. I intend to be here for many more years! 

    Best wishes
    Ange
  • TennilleTennille Member Posts: 60
    Hi Kim
    I have just recently been diagnosed with mets to liver and bones after 6 years. You are my inspiration.  As a single mum of 12 gorgeous kids I have lots to live for and dont plan on going anywhere for a very long time. Im on Aromasin, Zolodex and Denosumab and im currently awaiting admission onto a clinical trial. Most days life continues as normal but occasionally the fear creeps in and thats when I turn to this forum and read positive stories like yours. ☺
  • KimWKimW North Balwyn, VICMember Posts: 75
    @Tennille that is such a nice thing to say.  I love hearing positive stories makes things less scarey sometimes.  I never imagined i'd be here 15yrs since my primary diagnosis and the past 5yrs with liver mets, especially when i was given 3-6mths by the registrar oncologist. Its so nice to be able to chat to people who get the ups and downs rollercoaster ride we endure day in day out.  I always remind myself though when im having a very bad day that tomorrow is a new day and its amazing what 24hrs can do to your perception of your situation.  Fear creeps in for me when i have my staging scans i hate waiting for those blasted results.  awesome if you get onto a clinical trial.

    hugs xx

  • Wendy58Wendy58 Member Posts: 1
    Also new to the mets diagnosis. I am 58.9 years after original breast cancer. Now have liver mets and have started on Abraxane. I'm so glad to be reading all your stories.  I am devastated of course but looking forward to many more years with my family. 
  • iserbrowniserbrown Member Posts: 1,322
    edited June 16
    @Wendy58 it is not always easy to find the right words to say.  I do hope that being on the forum gives you comfort and realisation that some of the dreaded side effects are similar to others.  Here's to many more years with your family.  Take care xx
  • Sam09Sam09 Member Posts: 65
    Hi kim
               Thank you for posting this wow you have helped me enormously!! I was diagnosed in April last year and again in Dec with liver mets 12 inoperable shock horror..... I am currently on herceptin and perjeta indefinately.... I just have to ask is that your hair as since having taxol only one infusion and then being on herceptin and perjeta my thick glossy hair is super thin and fuzzy and horrible.  My onc refuses to believe it is the drugs but it certainly is......... I had a thick mane of hair.

    But its so wonderful that time is on your side and this encourages me. I have bad days and good. I feel well and energetic mostly and so happy and try to forget about it but then sometimes when I for some reason do not feel well then I have a dark low day and so on.....   Do you have any side effects at all? I have a horrible burning itch constantly and at night it wakes me all the time it is depressing. Nothing alleviates it at all... I spend most of my time in baths and applying creams that don't work.     Please tell me how your tumor markers have been all along?? up and down or just down... I also got told yesterday I am quite yellow. I havent really noticed it because I have very olive skin however when I looked down at her arm next to mine taking blood I most certainly did look quite yellow . Another worry....

    But thanks for posting it has made me for one feel a whole lot better about this horrible disease......and the future.
  • iserbrowniserbrown Member Posts: 1,322
    Sam09 said:
    But thanks for posting it has made me for one feel a whole lot better about this horrible disease......and the future
    Hi Sam - I was wondering how you were travelling so pleased to come across your post today and to read that you are getting comfort from others! 

    I don't have a magic wand nor the right words to say but I do hope you start to have more good days than bad and you can fill your days with lots of sunshine, friends, laughter and happiness!

    Take care, sending you a virtual hug from Christine xx




  • KimWKimW North Balwyn, VICMember Posts: 75
    Sam09 said:
    Hi kim
               Thank you for posting this wow you have helped me enormously!! I was diagnosed in April last year and again in Dec with liver mets 12 inoperable shock horror..... I am currently on herceptin and perjeta indefinately.... I just have to ask is that your hair as since having taxol only one infusion and then being on herceptin and perjeta my thick glossy hair is super thin and fuzzy and horrible.  My onc refuses to believe it is the drugs but it certainly is......... I had a thick mane of hair.

    But its so wonderful that time is on your side and this encourages me. I have bad days and good. I feel well and energetic mostly and so happy and try to forget about it but then sometimes when I for some reason do not feel well then I have a dark low day and so on.....   Do you have any side effects at all? I have a horrible burning itch constantly and at night it wakes me all the time it is depressing. Nothing alleviates it at all... I spend most of my time in baths and applying creams that don't work.     Please tell me how your tumor markers have been all along?? up and down or just down... I also got told yesterday I am quite yellow. I havent really noticed it because I have very olive skin however when I looked down at her arm next to mine taking blood I most certainly did look quite yellow . Another worry....

    But thanks for posting it has made me for one feel a whole lot better about this horrible disease......and the future.
    Hi  @Sam09 yes this is my hair now 5yrs since diagnosed with liver mets. I did 2yrs chemo Abraxane / Herceptin and for the past 3yrs Herceptin / Aromasin which I will continue indefinitely. 

    I have bad days just this weekend I spent in bed with a massive migraine and vomiting not pleasant at all.  I mostly have mood fluctuations as in coping and doing really well then I fall in a ditch somehow and are quite flat, but I always know I will dig myself out and get back to feeling better.  My tumour markers were high 700's now sit around 25, it was a rapid decline in tumour markers over the first year and by year two it was down to 25 where it sits today, so they have stayed down.

    All the very best xx

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