Hi all. I've been having pain in my liver the last week or two. I know I have mets in my liver and have been put on letrazole and ribociclib to try and regain control. The thing is I'm getting more pain even though I have been on these drugs 3 months now. Any one else had the same effects and does this mean its not working?
Finding it difficult to concentrate on anything else at the moment, as the pain is sharp and then goes again and I find myself waiting for the next one so I'm prepared for it., bit it still makes me jump. It's like a stabby pain.
I hope the rest of you are all OK.
Hi lily0403, really sorry the hand and foot syndrome was so bad. I never suffered anywhere near as badly as you, but I can say that after stopping capecitabine in Dec my feet and hands are no longer purple and tight feeling, so good luck in recovery. I was on paclitaxol for 2 years and didnt suffer any major side effects. Hope it works for you.
x
Hi Lily,
I've got liver mets and have been getting pain there on and off since I joined a trial in 2017 taking Dabrafenib and trametinib .
It's rarely, totally debilitating but often enough for me to top up my oxycodone. No-one has ever given me a good reason why I get it. I had a painful liver biopsy in 2017 which may have caused it, and one of my registrars suggested it was "cancer cells dying"!! I also occasionally get pain where my other tumours are but not as severe.
Sorry not to have an answer other than analgesia and I hope yours settles down.
love M x
Hi Mark. How is the trial working for you.? My pain has settled a bit but that's the morphine I think
Hi Lils,
Well, it's kept me alive!! When I started the MSR was 6 months so I'm living well beyond any reasonable expectation which is a bit weird! I get pretty bad side effects [exhaustion, pain, nausea, diabetes, depression etc.] but am just about managing them all with a lot of drugs. My tumours appear to be frozen in time. They've hardly changed size for 3 or 4 yers and I haven't had any new ones for a year which is good.
My life is pretty strange compared to 'normal' but it's good enough to keep going at the moment.
I've never heard of your meds, how long have you been on them?
M x
I had only been on capecitabine for two weeks and the reaction prevented me from continuing.
The ribociclib and letrazole I was on for 4 months and it did nothing at all except make me very tired. So now we are trying the paclitaxel, starting on 15th Feb so fingers crossed I will be back to stable.
I can't take tamoxifen anymore as it stopped working after keeping me stable for 5 yrs.
Here's hopefully the paclitaxel srinks the tumors enough to go back on hormone therapy.
Hello my lovelies, I started paclitaxel by IV today and as yet I have had very little side effects. So fingers crossed this sorts me out and gets me back to a stable mable.
I hope you are all doing well on your treatments. ️
There will be fingers crossed everywhere on here for you! Stable Mabel here you come!
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