Thanks Gail for asking those questions as that's what I'd like to know too. I was on palbo for three years before starting cape.
Hopefully someone will reply soon.
Hi Gillyflower, I am two weeks in on cape and so far so good. I am due to start my next round of tablets on a Tuesday so this is my week off. The only issues I've had is a salty taste in my mouth and I have definitely felt more tired. I do feel that's a small price to pay.I am doing lots of walking and moisturising my hands and feet regulary. I am hoping doing these things will help me to keep going on this treatment. The main thing is that it works which I won't know until I have a scan in a few weeks. I am choosing not to think about that now and managing to function as normal (lockdown permitting). It is good to hear that you are finding it manageable after 8 or 9 cycles especially as I am on my first.
I too would be interested in knowing how long this drug has worked for other people.
Right, I am off now for another walk. That's definitely the best way to clear my head. (And believe me I have tried loads of things over the years of having SBC!!)
Can I please ask what were peoples options once capecitabine stopped being effective? Has anyone been on it for a length of time as many of you have stated it only worked for a while?
Im on my first cycle after Ribociclib/letrozole combo stopped working after 3 years. No side effects jus yet and hope that continues
Ann52 Ive also been on Ribociclib/letrozole combo and it worked for me for 3 years. Did you do a trial? Now on capecitabine and hoping it'll do some good.
Since Ive been on it, Ive had some liver pain, not enough to complain about, more like a dull ache occasionally. Has anyone else experienced this?
Hiya Karen, nice to hear how you are, also sorry for the delayed reply, I've been so busy with work and other things that I haven't had much time to come onto the forum.
Glad that you had a bit of a nice break "living normally" while they delayed your treatment, I totally get that as I often don't mind when my treatment gets delayed by an exra week or two. How are you getting on? I am on my 8th or 9th cycle now and so far so good, working full time and also getting out for walks. I think the walking is doing amazing things for my body, I generally feel much more well than I have before on treatment, the fresh air is also great while we are all cooped up in lockdown. Glad to hear that wfh has also been good for now, I think its really important to try and have some normality. I don't have many side effects thankfully, skin issues are my only bug bear and of course the fatigue if I over do things but on the whole its really manageable so far. Let me know how you are getting on xxx
Hi Gillyflower, thank you for your post. Sorry for the long delay in replying. I am starting capecitebine tomorrow and will let you know how I get on. I have had a bit of a delay and have not been on any treatment for a few weeks so have made the most of living 'normally' for a while.,
Thanks for your positive comments on your experience with cape. Hopefully I will get along with it too. The main thing being that it works of course. I am trying to get more walking in at the moment to strengthen my body (that's my theory) and just so hoping I can continue to do things like that. I too am wfh and that's def been good for me up until now. ..just to make me feel normal.
I hope things are going well for you. Xxx
Hi Karen, apologies for the delay in replying, I've been "offline" for a couple of weeks with computer issues and generaly life stuff getting really busy.
How are you doing? I hope you are settling well on the Cape.
Things are still going well for me in terms of living a good quality of life with minimal side effects. I pretty much live a mostly normal life and working from home hasn't been a problem at all 😊 In fact, I'm probably busier now due to all the "zooming" and online socialising and working than I was before the cancer diagnosis!
I haven't changed diet - I eat a balanced diet and I still have my treats when I want them! I do make sure to try and keep my weight stable though, if my weight goes up I adjust my diet accorrdingly.
Hand and foot creams - I have Epaderm given to me by Dermatology (but mainly for my eczema, it comes in handy for the cracks in my feet too). Though I'm not a fan of using this too often as it contains an ingredient which can make my eczema worse sometimes (white paraffin). I use Weleda's Skin Food body butter or cream on hands and feet and this stuff seems lovely (all natural and organic too so bonus!).
Let me know how you are getting on xxx
thanks so much for your reply. That's good to hear. I hope you are doing well with your current treatment.x
Cape worked well for me for around 14 months. It absolutely slaughtered my liver mets and I had at least 150 covering both lobes. I didn’t change anything about my diet and didn’t suffer with my hands and feet. I’m sure you’ll still be able to enjoy your wine. I did 🍷
I used to take it with a yoghurt as soon as I got up and then after dinner on an evening. It’s a great drug.
hi Gillyflower, I have recently been told that palbocilib has stopped working for me and I am now going on to Capecitabine. its good to hear your tolerating this well. Do you do anything different since changing to this i.e. Diet / hand and foot creams. I am hoping I will feel well enough to continue working part time (from home) and enjoying a glass or two of red😀.
i think I became a bit complacent on palbo as i was lucky as it did me three years but now I have been punched in the face again by this awful disease.
Hi Cora and Ann,
I am also on Capecitabine as the Onc was concerned I had liver mets. At my most recent scan I was told that after 3 cycles of Cape there'd been a 30% reduction in the liver lesions (they aren't entirely sure that the lesions are definitely mets but either way, a reduction is always a good thing). I find there are very few side effects for me aside from the skin on feet and hands. Wishing you both well and keep us posted on how things go xxx
Hi Cora obviously sorry to hear you are in a similar situation. I’m also on cycle 3 with a 7/7 schedule now due to sore feet during cycle 2. I’ve got my scan on 1st October with results on 7th. I’m at Kings College Hospital in London. I had good blood results last week (much lower AST) which gave me some hope. My last scan showed at least 5 liver lesions with largest 5.5cm. Let’s keep each other posted!
Hi, my situation is just like yours and would like to hear from anyone with positive results- hormone blockers did not do a thing for me. I am on my third cycle of Caps. 1200 twice a day- my scan is next week. I do feel much better than I did before starting- the scan will tell. I will let you know next week- much luck and love to you!
Thanks Nicky fingers crossed!
Sorry to hear about the change in treatment, always an unsettling time. When I was on Cape back in 2013 I didn’t have any problems with wbc but I have read in here that some ladies have. Not many ideas and to be honest I didn’t think it was a problem until I read it on here. Hopefully it wont happen with you.
I’m starting on Cape next week. Ribociclib didn’t work for me for long and I’ve just heard there is progression in my liver mets. Are there likely to be treatment delays due to low bloods as with ribo?
Hi FeeltheFear, just wanted to wish you well on your new treatment, hope it works well and is kind to you. You’ve still got the best name on here imo!!! 😉Kate xx
Unfortunately hormone blockers don’t always work even if you are hormone positive and even those that work eventually stop being effective. I had been on hormone treatment for nearly 5 years (for bone mets) when my liver mets were found. I went onto Capecitabine and it worked very well for about 18 months. I remember at the time reading that it is usually effective for soft tissue mets so I do hope it works well for you. If you check out the XEloda/Capecitabine thread there’s quite a few ladies (maybe all?) taking it for soft tissue mets.