Mum in decline? ER+ with bone only metastasis

Hi all,

reaching out to see if anyone can offer some insights into what might be going on with my mum.


She was diagnosed at aged 65 around 2 years ago with ER+ BC with extensive bone mets (torso and skull only). Her sacrum/lowest spinal bones were extensively damaged and radiated. They put her on Arimidex and the bone strengthening injections and she went along okay for 2 years, helped along by heavy pain meds (endone and lyrica). The Armidex slowed the cancer and made all the bone tumours inactive and she’s had no progression on scans. Her tumour markers were excellent for 2 years and only recently have they gone up (doubled then tripled then dropped a couple of points). Brain and organs all clear.


She seems to have declined rapidly in last month or so - she always had some nausea on the Arimidex but the past couple weeks the nausea has become debilitating to the point of hospitalisation. They’ve just switched her to Tamoxifan to see if that will help things but she is now also suddenly experiencing muscle weakness in her arms and legs, to the point where her partner is now struggling to help her remain upright (and we are going to get hospice in). She’s also declined mentally and struggling to speak. Appetite is minimal.


More scans are scheduled (been a couple months since the last scans) but she’s too weak at the moment. I know they want to scan her brain for any metastasis due to the heavy nausea. I think she needs to be in hospital but she wants to be home. 


Is this some kind of end of life decline or is this an issue with coming off Arimidex and starting Tamoxifan (I see nausea and muscle weakness are a side effect of these drugs) or what is going on? We’ll have her assessed this week by her doctor and hospice but I thought someone might have some insights. I would have thought her tumour markers would be much higher than what they are if she was on the way out.


Thanks in advance for any comments, Kelly (in Australia)


Hi Kwills

You naturally sound anxious and concerend for mum and I am sorry that you havent received any responses from our users yet.  It may help if you posted on the Living with breast cancer board.  It may help you to talk to someone, we have a fantastic free Helpline where you can talk to one of our specialist nurses, 0808 800 6000.

Please do post again, if you feel able, to give us an update about mum and how you are doing as well.

Best wishes
Digital Community Officer

I’m on here asking a question myself and saw this. There are plenty of options! She has bone mets and is probably feeling weak with them. But generally I’d imagine she is just experiencing a progression. If arimidex worked for 2 years hormones are clearly working for her. There are so many options, femara, faslodex, new ibrance trials etc. There are also chemo tablets that are low dose if they feel they need to make up more ground quickly. I had spread after failure on arimidex and was put on abraxane chemo. A more tolerable chemo than most and I reduce my mets. I think she needs to pin down her team and get to the bottom of where the prgression is and change treatment if the feel it is not strong enough. any change is treatment leads to lots of new side effects which usually settle down. She is definitely not on her way out. Reassure her she has a ton of options.

I saw this and it reminded me of my mum. My mum had leptomeningeal metastisis and that was how she was.
I assume they checked for this?