looking for some reasurrance.or advice.Had been on pablociclib and Letrozole for 1 year for mets to liver 4 mets,hips,spine and pelvis.was told today that two mets are showing that they are slightly getting bigger.Onocoligist has said next treatment is Capecitabine,I am gutted I only managed a year,on the pablociclib and Letrozole,which makes me think I will run out of options so quickly if I only managed a year on the newest drug .looking for ladies who can help Settle my brain as it is going haywire,xx
Hi there, so sorry to hear your news. I’m probably not the best person to reply as I think there are others who know more but I saw your post and wanted to respond so you don’t have to wait. It is always a tough time when a treatment stops working but it doesn’t mean the next one won’t work well. I know of ladies who have been on Capecitabine for a long time. I was on it for a year but others I know were on it for longer. It was also pretty easy to live with - I needed to moisturise hands and feet every day, occasionally had diarrhea. This is the worst time for you, having heard bad news and waiting for new treatment to start but I hope you find capecitabine easy to live with and that it works really well for you. Riding the rollercoaster is really tough but getting bad news doesn’t mean that you won’t hear good news next time you have a scan. That has surprised me on this journey. (I’ve had sbc for five years) Bless you, Peggy xx
So sorry to hear your news, it always feels like shaky ground and shifting sands whenever something changes.
I had started Palbociclib at the end of Feb this year…had only been on it for barely 3 months when my Onc said I may potentially have new liver mets, so she wants me to start Cape in the next week or two.
I can empathise with how it feels to think you are losing a good chunk of time / reducing your available options by having to swap treatments. It is scary but I think there is also a lot of hope.
From what I have read online and from the stories of other ladies with SBC both here and elsewhere on the internet, it seems like there are many different options of treatment before you exhuast them all. I have even read of cases where some people went from chemo back onto hormone treatments and did well for a good chunk of time before needing chemo again!
Reach out to talk to people if you can, or use online forums like this for support. Sometimes just speaking to people who have already got a few years of this rollercoaster under their belt can make you feel loads better about things xxx
I’m in more or less in the same situation as you. I’ve been on abemaciclib and fulvestrant for a year and today I agreed with my onc’s suggestion that we move to capecitabine.
Tumour marker’s been going up for months, haemoglobin is down for third month in a row and scan results today showed enough progression in bones for her to want to try a new approach rather than try most obvious next treatment, everolimus and exemestane.
Hi Walsh, I am receiving treatment in Canada. Just to share my findings from the BC cancer agency website about the time dependency between the 3 AIs. It explains why you are put on Cape (a kind of chemo) after Letrozole and Pablociclib. I am not any medical but from the piece of information I think you may still eligible for Fulvestrant (not an AI. No guideline in BC cancer agency yet but I heard some patients are given Fulvestrant right after Letrozole/Anatrozole) and E/E.
