Breast Cancer Now Forum

Hi.   Do you mind me asking where and how you had the testing done? I'm interested in having it done too. Also, did you manage to access the drug? Thank you and best wishes. ... View more

I did switch to the 28-day cycle - one week on, one week off, then same again. I'm on cycle six now but my tumour markers level has started to go up again so we have scans next month to see of we can work out why (ie if there's been progression. It has been good to go to the hospital monthly rather than every three weeks.  Best wishes to all.   ... View more

Thanks for that. I think it will be a few months before I know whether it’s working sufficiently well for that. All good after round two but first set of scans not due til the autumn. Fingers crossed.  ... View more

Thank you. I appreciate you taking time to respond. ... View more

My onc told me the longest she’s had someone on capecitabine for is three years and four months.  She also confirmed that, depending on how things go, it is possible to go back to hormone treatment ... View more

Hi. 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. Good luck to both of us. Best wishes. ... View more

Hello. Sorry to hear you’ve been in pain. Trigger finger/thumb is most definitely listed as a side effect in the patient information leaflet of several of the makes of letrozole I get. I’ve read of several cases of GPs not knowing this until a patient has pointed it out. On my front - and this might give you hope - the painful trigger thumb I developed on both hands within months of starting on letrozole has completely gone. I’ve been on letrozole three years and while I can’t recall when it went, I’d say it must be more than two years ago. I’ve still got slight swelling in the thumb joint but it is very slight and it is not painful. Thankfully I never had the joint pain/swelling that has afflicted others on letrozole. Best wishes. ... View more

Ha. I realised I had already posted on this. It still works, though, as an update! ... View more

Hi Maru and Nat!   This is funny timing as I've been meaning to post in this thread for a while.   That's good news from you on the thumb front, Maru. I have good news on that front too.   I had trigger thumb - it started several months after I started on letrozole - quite badly on both hands. It's gone, however, and I realised it had gone several months after I'd started long-distance cycling. I have no idea whether it had anything to do with the way I held my hands while on the bike but I thoought it worth reporting here anyway! I still have reduced strength in both hands and some swelling in the thumb joint on my right hand but it's not painful, just irritating.   I've been on letrozole for two years now. I've just had a follow-up DEXA scan and all was fine.   Good luck and best wishes to all of you.  ... View more

That's not good. Hope you far better on letrozole. I have a weird tale to tell. As I've said here, I developed painful trigger finger on my right hand several months after I started on letrozole in Jan 2016. It gradually got worse, to the extent that I could no longer bend my thumb at all. However, that meant it was no longer painful. I also developed it in my left hand and it evolved the same way. I decided just to live with it; it was inconvenient but not painful. Then in March this year I started long-distance cycling. Now, five months later, on my right hand has disappeared and, while I still have a bit of a ganglion, the movement is completely back to normal. I'm wondering if it has something to do with the position I've been holding my thumb in while cycling. I also have much more movement in my left thumb, but it's gone back to triggery and painful. As I say, weird.  ... View more