Liver mets - treatment options

maggie001maggie001 Member Posts: 29
edited October 22 in Metastatic breast cancer
Hi everyone, I was dx Stage IV in Sep 2016 with Mets to the Omentum and bones (spine, pelvis). This was 7 years after my initial diagnosis during which time I had been on tamoxifen. So I was put on affinitor and Exemestane and monthly Xgeva shots. The affinitor made me very sick so I stopped that drug but continued with exemestane/Xgeva. 
My latest CT scan 2 weeks ago showed multiple liver Mets with the largest lesions being 12x11mm and 9x9mm.  I had the scan done because I was not feeling well (referred by my oncologist)  pains in the abdomen, nausea, pain in the right shoulder and lower back pain.  I obtained the results through my GP whom I was seeing for type 2 diabetes which I have also been diagnosed with in the past month. The metformin is not doing anything to bring down the sugar levels despite increasing the dose. I wonder if the high glucose levels are connected to the cancer?
My question however is about the liver Mets - can those that have had a similar diagnosis please tell me what treatment you were put on and how this worked for you?
i see the oncologist on 2 Nov and am getting my questions together. 
Thanks and best wishes to everyone, cheers
Judy 
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Comments

  • socodasocoda LeumeahMember Posts: 1,457
    @maggie001, I'm sorry I can't assist you with any information but I just wanted to wish you all the best with your treatment and sending best wishes for a reduction in lesions and then stability. Big hug. Xx Cath
  • wendy55wendy55 Copper Triangle South AustraliaMember Posts: 193
    @maggie001
    I too have liver and spine mets, no diabetes thank goodness,first things first I would wait until I see the oncologist and have a long list of questions ready to ask, also a good idea to have someone with you as an extra pair of ears who can write notes, who is looking after your diabetes just your gp or is your oncologist involved in this or are you seeing a specialist, I was diagnosed with stage 4, 4 years ago, no early breast cancer just stage 4 liver and spine and 3 tumours in my left breast,chemo started straight away, and since then tumours in left breast GONE but mets in liver and spine still there, I am on my 6th line of treatment, like you I was also on affinitor and exemestane{aromosin} this lasted for 15 months,at the moment I am on a oral chemo drug called Xeloda and also have been having xgeva injections monthly which are now every 6 weeks,the xeloda has reduced my tumours from 6 in the liver to 2 but I still have numerous small ones in my spine,
    and when the xeloda stops I will be put on something else.
    November the 2nd is not far away,so be armed and ready with your list of questions,do you have a McGrath Breast Care nurse? if you are rural you can check their website to find the nearest one to you, also are your gp and oncologist communicating with one another as you have two health issues they need to be aware of what the other is doing in terms of your medication,waiting for results is hard, we all know that but once you have sat down with your oncologist and put all your concerns to him and received the answers you will be in a better place as to where you go from here,sorry I have no answers re the diabetes thats best answered by your health professionals, 
    well,  its a beautiful day outside in country SA, so better get on and do some of those pesky domestic duties,{better get dressed first!} I dont work thank goodness I am retired, which helps in terms of coping with this pesky disease,
    so sorry that you have had to join our "special club" but we are all here to help and support one another,
    hugs wendy55
  • primekprimek Broken HillMember Posts: 3,182
    The mets could well be contributing to your diabetes as it is possible the pancreas might also be affected. There is much in treatment that can be done. I don't have your diagnosis but just wanted to offer support and know there are ladies here who will be able to offer you advise. Kath x
  • maggie001maggie001 Member Posts: 29
    Thanks Everyone for your replies. 

    Wendy - my diabetes is being handled by my GP and despite her attempts to confer with my Oncologist, she didn’t receive a reply. She was going to try ringing and was also going to consult an endocrinologist to get his opinion.  I am in Sydney and I don’t have a McGrath Foundation nurse, but I do have access to a nurse at the Northern Cancer Institute where I see my Oncologist. 

    Kath - I’m also wondering whether the Pancreas is now involved and this is perhaps why the metformin is not having any impact on the glucose levels. My GP is talking about changing me to daily insulin shots now. Urggghhh. 

    Cath - thanks for your best wishes. 

    I hate ate this bloody disease and this time of uncertainty is awful. It makes me sad, fearful and angry. I’m much better when I have a plan of action. My list of questions for the oncologist (actually it is her registrar first - the oncologist just comes in at the end) is a page long now. I want to be sure that all things have been considered and whatever treatment plan is chosen is the most appropriate one for me. Roll on 2 Nov

    I don’t post often but I really appreciate you all taking the time to respond to me. It feels so much better having advice from those who know what I’m going through. I will let you know what happens after I’ve seen the oncologist. Best wishes to everyone
    Judy
  • iserbrowniserbrown Member Posts: 1,643
    @maggie001

    http://onlinenetwork.bcna.org.au/discussion/17246/breast-cancer-network-australia-helpline-available#latest

    Perhaps if you look at the link above one of the BCNA Nurses maybe able to help you understand and target your questions for your appointment.

    I'm feeling for you, it is a scary time when you feel like your body is rebelling against suggested treatment.  Wishing you wellness.  Take care x
  • JennyJenny Member Posts: 96
    Hi Judy,

    My stage IV diagnosis has been for bones only and I've had a different set of treatments than you and Wendy are moving forward with.

    I am just so admiring of Wendy to share her story this Tuesday morning. As Wendy says it's your questions and your support that are important  right now.

    Sending best wishes for you to be able to take the time to have a breather/mental break between now and November 2.

    The BCNA helpline link and iserbrown's link to it brilliant. So many questions and having someone to talk with could help with getting to a helicopter overview.

    Sounds as though your GP is backing you with phone calls to generate some early multidisciplinary team conversation. Such a crummy thing to have the Type 2 diabetes to adjust to over the last month.

    Maybe Northern Cancer Institute, or the Endocrinologist your GP is finding for you, can find you a friendly well informed Diabetes Educator, possibly another helpful string to your bow. 

    Oops, have to follow the tip in Wendy's post myself and get on with those morning chores!! Hugs,
    Jenny x


  • JennyJenny Member Posts: 96

    http://onlinenetwork.bcna.org.au/discussion/17246/breast-cancer-network-australia-helpline-available#latest

    Perhaps if you look at the link above one of the BCNA Nurses maybe able to help you understand and target your questions 

  • TennilleTennille Member Posts: 87
    I have bone and liver mets. My bc has changed from primary being hormone positive to triple negative and I also have tumours in my remaining breast. I am on a 21 day cycle of Eribulin with infusions day 1 and day 8. I also have 4 weekly denosumab. So far tumour markers have dropped and my LFT's are looking good. Due for my first scan in a month. Onc very happy so far.
  • maggie001maggie001 Member Posts: 29
    Thanks Tenille, how have you found that treatment in terms of side effects? I am wishing good scan results!!
  • TennilleTennille Member Posts: 87
    @maggie001 ; I am so far cruising through with minimal side effects. I can almost pinpoint exactly how I will feel on which day. On average thos chemo goes for 9 to 15 months before disease progression but I have an Onc determined to get my liver at least completely disease free. Have mixed emotions about my scans. 
  • jenajena Ashby NSWMember Posts: 34
    Hi @maggie001. I was diagnosed with metastatic breast cancer on 1May this year. I had Mets in my liver, skull, spine and extensive disease in my hips. I recently finished 6 cycles on nab-Paclitaxel (3 weeks on, 1 off)   I also had three seperate radiotherapy treatments on my lower back and hips, which worked a treat ( my oncologist calls it a bit of spot welding
  • maggie001maggie001 Member Posts: 29
    Jena it’s good to hear the radiation worked really well - if it helps with the pain then you feel you can cope with everything else. What is the plan now that you’ve finished your course of Pacitaxel?
  • jenajena Ashby NSWMember Posts: 34
    edited October 29
    Hi Maggie. For some reason my message to you is only partially there.  I wonder what I did wrong

    I start oral chemo tomorrow (Monday) - Capecitabine. The cycle is 2 weeks on, 1 off. I will remain on this as long as my body can tolerate it.  A somewhat daunting thought. 

    I was very sick when I was diagnosed, but despite 6 months of chemo, I’m so much better now.  I have a lot more energy and my pain levels are much improved. I can do most things I like to do, but in moderation. ( moderation is a real challenge for me)
  • jenajena Ashby NSWMember Posts: 34
    edited October 29
    Even three months ago I couldn’t sit on a chair for more than 10 mins, now I’m comfortable sitting. I couldn’t walk very far at all because of the pain in my hips and lower spine, now I’m walking up to 10km in a day. (Most days less than that though.) I’m also back on my bike - but cycling a fraction of the distances I used to
  • jenajena Ashby NSWMember Posts: 34
    I don’t know why only part of my message appears when I post ..... here is the rest (I hope)

    I’m finding daily mindfulness meditation and exercise a great help. 

    I always write down questions for my oncologist in a little note book - I’ve quite a  Herstory. I find it helpful to take notes during my appointment as there is always much to remember. 

    All in all it’s a big adjustment but I am focusing on what I can, rather than what I can’t do.  I’m also holding out for that magic medicine that will see us all cured!  

    I wish you all the very best. May you start to feel much better once you’re treatment regime begins. 
    Living in hope j
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