Just been diagnosed with liver and bone mets

  • 13 replies
  • 32 subscribers
  1. Hi everyone I’m new to this group, I got diagnosed last week with secondary liver and bone mets, I’m trying to keep as positive as possible and hearing some really good experiences from people who are living well for a good amount of years after diagnosis. I’ve said to my consultant that I don’t want to know anything about prognosis etc because it’ll make me panic! 
  • Hi Elisa, 

    sorry that you have had to join the club that no one wants to be a member of! I had same diagnosis eighteen months ago after 16 years of thinking I was cured. I am on pablociclib letrozole and denosumab, a combination that I have found very manageable and which is keeping things under control so far. So do not panic; once you have a treatment plan in place you can get on with your life! 

  • I have liver and bone mets too. I was on Letrozole and Ribociclib but have had to stop Ribociclib because it caused liver toxicity. I am waiting for the liver to improve and then hope they can put me on pablociclib instead What is denosumab and what does it do? I haven’t had breast cancer before - I just went straight in at Stage 4. 

  • Denusunab is an injection I have every month to strengthen bones. I have recently had lesions in liver confirmed added to secondary breast cancer which went to my bones first. Learn to live with it. Still great quality of life! Doesn't stop me doing much.

    I'm on xeloda - twice daily oral chemo and am struggling with sore soles of feet and palms of hands. Any tips to relieve this pain please?

  • I am in a similar position. Diagnosed with liver, lung and bone mets, this time last year. Initial treatment plan was Fulvestrant and pablociclib which didn't work. Four months effectively wasted with only side effects to show for it. Switched to weekly Paclitaxel which reduced mets in lungs and liver by a considerable amount in July scan, apparently improvement in bone mets is hard to measure, but sternum has definitely reduced in size and the external evidence has disappeared. Got to wait for next scan and onc appointment in January.

  • I find Yoga helps me hugely. I'm not obsessed with it but just a few gentle stretching exercises in the morning makes such a difference! Give it a try. I recommend Yoga with Adriene on YouTube on your TV or phone. Changed my life!

  • yes, I have found keeping up a little bit of yoga now and then really useful. It puts me 'back in my body' if that makes any sense, and reminds me that I am mostly healthy and thriving still! Not just a bag of drugs and cancer.

  • Please can you tell what side effects you had on Fulvestrant and Palbociclib as I’ve just started new treatment on them. exemestane didn’t work x

  • Hi I am just about to have my 6th cycle of Fulvestrant and Palbo and am having very few side effects. My neutrophils go down every month but so far have stayed just over 100 so I haven’t had to have any treatment breaks but it does mean I am now a bit more careful about avoiding infection. I have some catarrh and sticky eyes and am a bit achy I don’t know if this is the treatment or just the bone mets hurting. So overall tolerating it very well with life  carrying on pretty much as normal. Good luck with your treatment best wishes Lyn x

  • Thank you for taking the time to reply, your information gives me great hope, I wish you well too Kissing heart

  • Low neutrophils, achey muscles, brain fog, occasional digestive problems. Worst was breathlessness, all fairly mild, but got worse as time went on. Moved on to Paclitaxel weekly which finished two months ago. OK at the moment.