Bone mets growing but other mets not - any similar experiences?

Hi all

My recent scan has shown that my bones mets are growing but those in my lymph nodes (which were everywhere, from neck to groin) have gone. Have had the scan report from my GP and radio silence from oncology, so no idea what this means for treatment. Am on cycle 14 of ribociclib, fulvestrant and denosumab. Have to say am freaking out somewhat.

Thanks, Kinden xx

Hi Kindensurprise,

Can I ask, how long is 14 cycles of Ribociclib ? Is it right that one cycle is 3 weeks? When did you start this treatment? The reason I am asking is because my mum has recently started on this same treatment plan in September.

I am aware that ribociclib is the first line treatment for secondary breast cancer and I know they reassured my mum that there were several other options if ribociclib wasn’t to work for her. I have read other stories on this forum where second and third line treatments were actually more effective than the first. It is great news that your lymph nodes are now clear though!! 

When you say your bone mets are growing, is it slightly growing or quite extensive since your previous scans? What type of breast cancer do you have?

I’m sorry for all the questions!! I am trying to do some research with regards to my mums treatment too. It is curious the reason why it has clearly worked wonders in your lymph’s, but not the same reaction to your bones. 

Hi Kinden,

I have also had this.  I have mets spreading in my bones but reducing in my liver.  From what I have been given to undertsand, Oncologists are more concerned with how your soft tissues and internal organs are because these are more important to treat and get under control.  Some growth within the bones is acceptable provided your soft tissues/internal organs is showing reduction or good level of stability.  My Oncologist gives me the impression she is not even worried about what is going on in my bones and has told me “not to worry about it.”  I have been told that my meds are working well, even though my last CT scan picked up that I had more widespread mets in my pelvis than at the previous scan.

There is another post somewhere in the private secondary group (it might be within the thread I started where I was venting about hospitals/scan results) and someone very kindly replied (sorry I can’t remember who it was), that mentions a bit about a certain amount of met growth being acceptable, have a look through as I think it gave a better explanation of things than what I can tell you! xxx