I’ve been on palbo and Letrozole for 18 months with good results.  I’ve mets in my bones and now have liver mets which are increasing but very slowly.  Palbo regrettably has stopped working and my Oncologist has recommended capecitabine.  I’m very pleased with this as I’m in reasonable health and really didn’t want intro chemo just yet. I’m coming off hormone treatments too   So just capecitabine and denusamab  

i wondered if anyone had the same and could share there experience. 

Thanks Ali x

  • Hi I haven't had the same as you but wanted to reply to you so I can bump your post back up to the top where someone who has had similar might see it this time.  I would also recommend posting in the main Breast Cancer forum (CLICK HERE)as that is much busier so you may have more luck there.  

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi there, I too had Palbo and Letrozole, but it only worked for a few months, so like you was put on Cape and Denosumab. I found Cape tolerable (it is a chemo, but an oral one), but developed quite bad foot and hand syndrome after a few months. Make sure that you start moisturizing your feet and hands right away (creams with urea work the best).

  • Hi Veronique, thanks for responding.  I’d heard about issues with hands and feet which have concerned me as I like walking. I will get the cream though, in advance.  How long have you been on cape?   I hope you’re getting good results.  I’ve got everything crossed but there are no guarantees we’re all different.  Ali xx

    1. Hi Ali

    I'm in a similar position, Palbo/letrozole for 2 years until a small progression, liver, lungs, spine and due to start Cape in a few weeks. On Exemestane since they stopped the previous regime. I'm interested in this thread and will be following with interest when I get started with the drug. I was on monthly denosumab but needed dental treatment so have been off that too past 3 months. 

    Good luck with your treatment - it's a real bummer but I suppose as long as there is something else they can try, it's all good

    Sandra x Fingers crossed

  • Hi

    I too have been on Palbociclib and Letrazole for 18 months and was told this week that the mets in my liver have stopped responding and grown quite a lot - which is very worrying. The plan is to start Capacitabine as long as all my tests are ok. Bit worried about the side effects as I also have been really well on Palbo and Letrazole so keeping everything crossed that  capacitabine works and I can tolerate it. 

    Hope everyone on it gets good results.

    Zeds xxxx

  • Hi Zeds, good luck with the Cape!  I'm due blood tests Tuesday week and all being well, I will be starting it on 21st, fingers crossed. Hope I'm able to tolerate it too. They'll take me off the anti hormone when I start it tho, Exemestane. Don't really know why, but I'll ask.

    All the best

    Sandra x

  • Hi Sas

    Good luck to you on the Cape as well. I haven't got an appointment until 4th August and have been told by my oncologist to stop Palbo and Letrazole completely as the hormone root is obviously not working. They also said it would give my body a chance to recover before I start the Cape, my neutrofils have been a problem on the Palbo. So i will not be on any cancer drugs at all until 4th August, which is definitely worrying me. 

    Zeds x

  • It's an anxious time for sure. Your mind goes way off on tangents all over the place. It's crazy to think you're dealing with this disease and and you're not on anything until August! I know everyone's body is different and there are so many different treatments even for similar cancers and really I should feel fortunate that they put me on Exemestane until I start the Capectibane, but I've no idea if it's doing anything as I've not had a scan or bloods since. Just remembering they reduced the dosage of the Palbo when my neutrophils were a problem. There are 3 levels apparently, I started on the high dose but was having to take a break every month or so until they put me down to the middle dose.

    I'd no other bad side effects tho, so hope the Cape will be the same Fingers crossed

    Take care xx

  • Hi Sas

    • Thank you for your reply. I have just spoken to the Macmillan nurse, she has said to me as long as all my tests are ok, I will be starting the Cape on 18th July so not 4th August. Apparently, that is just a routine face to face with my oncologist. She has also made me feel more positive. Fingers crossed for us all Slight smile I hope you will keep me posted on how you are doing, take care xx