dx'd with innumerable liver mets this month.

Hi Polly, Wendy55 and all on this topic of liver mets. I'm so inspired by you all today! I'm in the same boat, and have been taking palbociclib in preference to chemo for 13 months. it's great, only cost me $130,000 altogether.
And now it's finally available in Australia - but not yet on the PBS - Pfizer is giving it to me for free from now on.

The main reason I'm finding your stories inspiring today is because since my 'terminal' diagnosis in December 2014, I've been expecting to live only 'a few months' more. (quoting my oncologist in Jan.2015) But I'm discovering from this forum and from forums in the USA that nowadays, secondary breast cancer can be managed for much longer than previously.

And I should warn that although I'm loving having palbociclib instead of chemo, there is no evidence that palbociclib actually extends life. But it might.. It successfully avoids the side effects that come with chemo, while shrinking the tumours, and has been worth every penny for me. I think I'll have to switch to chemo within the next month, as the cancer has just started to break out again, but it's great to know there is still a variety of treatments to try and hopefully, a long way for us all still to go!
Best wishes

1210polly said:

Anyone else with extensive, innumerable liver mets?
How has your journey gone?
Warmly, Polly

Hi there Pollly,

I was diagnosed with widespread liver mets 5yrs ago now after being diagnosed with a bout of septicaemia. 

Ok so I did Abraxane chemo 3wks on 1wk off combined with Herceptin for one year, second year I continued with Abraxane chemo but we changed it to fortnightly still with herceptin.  this was entirely I personal choice on my part and my oncologist listened to my concerns and as I was coping with the chemo we continued it for the second year.  I believe normally they give you 6mths or 12mths Abraxane.  I was an absolute wreck and had a 5yr old the thought of no chemo I couldn't bare the thought of I was so so scared. Finally about the 18mth mark I accepted my diagnosis and after the 2yrs of chemo and Herceptin, we dropped the chemo and continued with Herceptin but combined it with an AI drug Aromasin, I have been on Herceptin / Aromasin for 3yrs now and my liver mets have kept stable.  I got a 30% reduction in tumour size and my liver has lots of scar tissue now and is a different shape apparently, but hey who cares what shape your liver ends up when your living with mets.

Hope your going well, love to hear from you some more

kim xx

Hi @Jenv, just wanted to send you a big hug and wish you all the best.  Xx 

ER/PR +...Yes my oncologist said that i would suit the palbociclib too.  I should ask about vit B12...i know everyone different...i asked about oral chemo and he said that no we'll go with the  A of AC IV chemo first for at least 6  months and then a course of taxol for another 6 or so...and yes, treat like chronic illness....this is just one of many treatment options...i was just hoping i could have gone a bit longer just on hormone oestrogen blocker before hitting chemo trail... i keep saying 'what doesn't kill you, makes you stronger'.
Just gone and got a good therapeutic quality magnesium powder to use as this provides lots of minerals etc to combat downs and restless legs etc, apparently works with the chemo doesn't work against it (doesnt counteract the chemo).
I listen to my body now too, i used to go at a million miles an hour, now a slower pace...lucky I like craft, especially knitting, reading and crosswords.  And i say no more than i used to.  Yea bring on the 10th...lets get started!

Hi again, forgot to mention that Xeloda is a oral form of chemotherapy, which I take in tablet form morning and night, hence my McGrath nurse checking on me once a week and I see my Oncologist every 6 weeks -

wendy 55

Hi polly, i was diagnosed with stage 4 in june 2013, so coming up to my 4 year anniversary, mine had already metasized to my liver and my bones, so as you can imagine quite a shock one minute i am okay the next i am being told my diagnosis and do i know an oncologist?I had 6 tumours in my liver as well as innumerable in my bones!! and of course the ones in my left breast where it all started, so first off chemo, then femara then affinitor/exemestane/aromisin now I am on Xeloda and have been for the last 14 months, not pleasant but do able, I know that the xeloda will not last forever and so of course there is always the when will it stop working and where do we go from here I am hoping that the petition to get palbociclib into the country is successful as my oncologist has said that it would work for me,at the moment the biggest tumour which was 17cm is now down to 11cm and one which was 11cm is nown down to 7cm and the rest have disappeared, so the xeloda is definately doing its job, I too have xjeva monthly, I also have a vitamin b 12 injection monthly,I take each day as it comes, some are better than others, I have a fantastic McGrath Breast Care Nurse,for support as well as a pyschologist for my mental health,metastatic breast cancer is now looked at as a "chronic disease" which can be managed, and yes it can, I listen to my body now and If I am tired I will rest, metastatic breast cancer has over the years made me a little selfish and now I find I can say no a lot better, so glad that your oncologist and team have a great outlook for you, I forgot to mention that I am also er pr/ positive, 
So will be thinking of you on the 10th, and please keep in contact with us on the metastatic breast cancer forum - we are here to laugh with you, cry with you, and vent, we have very broad shoulders,
love
wendy 55 

@Jenv crumbs! You've got yourself a date the 10th for chemo. I do hope you're up to it by the 10th. It's a so and so that your back on the roller coaster. Sounds like a team working towards a good outcome.  Have you considered joining one of the groups on here that share the same situation as you? 

http://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer

Have apparently 'numerous' small mets on liver, abdominal wall and met on left lung, hence breathing difficulties. Starting chemo next wed, 10th May..oncologist not overly concerned, he says 'get you started on chemo, you'll be right in no time'....at least let me be able to breathe normal, please!..cancer. escalated after 15 years of clearance to stage 4 with mets in bones, liver and lung 2 years ago.
Cancer er+, Started on femera, and a monthly injection of xgeva to strengthen bones,  changed recently to exemestine which not helping so next is chemo and will have xgeva for rest of life...its a treadmill i tell you and can't  get off!  All good!

Sending big hugs to all of you. Great to hear positive stories....

Chris xx