Capecitabine not working

Hi all my sister in law was diagnosed with TN mets to her liver in June , primary was slightly hormone positive. 
She didn’t have a great response with neo adjuvant chemo prior to her mastectomy and was put on a PARP inhibitor as a precaution . A year later came the liver mets , she was put straight on Capecitabine but after 3 cycles the liver tumours have grown and there are more of them ( 8 to start with , largest being 7cm)

we are feeling pretty desperate and it feels as if nothing has even touched this cancer from the start!

she is starting trodelvy next week , has anyone else had a similar experience? What should we expect from the side effects ! Quality of life on Trodelvy?


I’m so sorry cape hasn’t worked for your sister. I’ve been fortunate and so far have got through 26 cycles as my first line treatment - but the cancer is fighting back so I suspect that, like your sister, I’ll be moving on to Trodelvy. I am obsessive about side effects as I suffer from a lifelong phobia of vomiting but what I’ve learnt is that everyone’s experience of the different chemos is different. The fact that there is a whole raft of side effects listed doesn’t mean we should expect them to happen and anticipation often is the hardest aspect of chemo.

I have joined a Facebook group for Trodelvy at Stage 3 and Stage 4 and have been monitoring (?) posts on side effects people experience. To be honest, I am no clearer. Some women seem to tolerate it very well, some have to give up because it makes them so ill. Some continue working, some are completely wiped out. It does however appear to have a good success rate with TNBC and MTNBC so I’m psychologically building myself up to the point where, given the choice, I will probably give it a go. I know that, for those prone to severe side effects, oncologists are beginning to start with a low dose and it still appears to get results. Others start of with 100% dosage and then settle into the treatment when it’s reduced to 75% - and it still works well. But, just as I responded well to Cape and your sister didn’t, the same thing seems to happen with Trodelvy. As for quality of life, that is too subjective to measure. What is acceptable for one person is completely unacceptable to another. I know that, if my oncologist said vomiting would be probable, I would probably decline the treatment because of the huge impact that would have on my QOL.

These are early days for your sister. There is still a wide range of treatments available for MTNBC so don’t give up hope. The range may not be as wide as for hormone-receptive breast cancers but it’s wide enough. There is another useful group in FB for people with MTNBC where you can see just how many alternative treatments there are, far more than I anticipated when I was diagnosed 20 months ago. And, who knows, maybe another new drug is waiting in the sidelines?

I do hope Trodelvy works for your sister and that she doesn’t have to endure awful SEs. It seems to depend solely on physiology - not luck, mindset, genetic makeup, age - and there currently is a success rate of 50% and growing. All the best,

Jan x