Thank you for this information.I am beginning to think I have a few treatments to go,when onocoligist told me that liver mets where growing I thought that was me done and Capecitabine was last resort,but the information that I have found on the forum is contrary to what I was thinking.So I would like to thank all for your kind words,and reasurrance.
love to all.xx
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.
Thank you for your post.Again reasurrance is what I need, I thought once the hormone therapy stops working it would be chemo from then on,so that’s good to know.Feeling a bit more positive this morning,after reading a few posts from other ladies.Back on the rollercoaster ride and see where this journey takes me.Thank you for your email.xx
Thanks again for sharing your experience! It is brilliant to read and it bring so much comfort, I can't express just how reassured I feel being able to hear from someone who has been living with it for so long and tried many of the different treatments. Massive hug! xxx
Bravescholar, Peggy and Walsh - good luck with your treatments! xxx Maybe those of us starting Cape can pop onto the Xeloda / Cape thread as Nicky suggested. I'll join you there and we can support each other there if you want to chat about how you're finding it xxx
As a long term survivor of SBC (12 years plus) I can vouch for being on Capecitabine and then going back onto hormonal treatments, it doesn’t mean it’s all chemo from here on in. To be honest most oncologists used to go between chemo and hormonal (with hormone positive ladies) before all the new CDK inhibitors came on the scene about 18 months ago so it was normal practice until then. So when I started my SBC treatment I had chemo, as I had a local recurrence and wanted rid of it ASAP plus bone mets. I was then on hormonals for nearly 5 years before liver mets showed up on a CT scan. I then went on to Capecitabine and it was effective for about 18 months although I know of ladies who had been on it for far longer, it really depends on how your cancer reacts to is. In fact when I first joined this forum there was a lady on it who had 9 years on it! That was quite a record and when I told my oncologist he couldn’t believe it! So it has the potential to be effective for quite a while. It also seems to be very effective with soft tissue mets such as liver and lungs.
Have a look at the Xeloda/Capecitabine thread although it is very long as it’s been going for so long so it’s a bit difficult to read all of it! My main advice would be to ask for a dose reduction if you suffer with any side effects too much, it is still effective at a lower dose, in fact I was on 80% pretty much all the time and it did help having had that reduction. Each dose by the way is worked out on weight and height of each person so doses, and the number of tablets you take, will vary.
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
Thank you gillyflower and Peggy.
I will take on board what you have said,just need reasurrance on this new treatment.This is a journey nobody ever wants to be on.Xxx
So very strange but all my bloods have been good,and I have felt fine.Onocoligist has said my liver is healthy apart from the 4cancers being there.Hope you have the very best luck on this treatment.xx
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.
Hi gillyflower and peggy20,
Thank you for your kind words,and reasurrance.It is always helpful to get feedback and to realise that this journey Will not come to an end anytime soon.xxx
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
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
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