Hello lovely ladies,
I’ve just been told that I have to change my medication from Ribociclib with Letrozole which has worked well for 18 months, for bone mets, but now doesn’t, to either Capecitabine or FEC chemo, so the 3 weekly drip treatment for 6 cycles.
Sometime in June the evil cancer spread from the breast to my liver, had the chat with my onc yesterday and now am devastated that it’s in both bones and liver, apparently it’s 2cm at the moment.
I’m terrified of both treatments but only have a few days to decide. I’m wanting to go the Capecitabine route, and I’m sure I’ve read on this forum that it’s good. But having read the information the side effects sound really terrible…is this true?
I’d really appreciate your feedback and comments, sending hugs to you all, as I know everyone has their own heartbreaking and awful struggles.
Timmycat 
xx
Hi Timmycat,
I think Gillyflower is on Cape from what I remember from one of her posts, so hopefully she will see your message and give you some feedback. Gillyflower always gives amazing advice!! I think it is a very common drug to take after Palbo or Ribo, so there should be a few people who can give you some of their experiences.
I’m sorry the ribociclib hasn’t worked for longer. Would you mind me asking what type of breast cancer you have? My mum is currently on the ribocilib, letrozole and denosunab cocktail for estrogen+, HER2- lobular bc. I’m supposing if you have the same type of cancer, this will likely be my mums second line treatment when the time comes too.
Keep us all updated with how you get on. I’m sure you will be in good hands and they will get the nasty little buggers under control again for you. Sending you lots of love! X X
Hi Timmycat,
I haven’t been on the forum for a few weeks due to computer issues, so sorry I’ve only just seen your post! What did you decide to go with in the end?
I am still on Cape - I have been on it for just over a year now and its absolutely been the best drug for me (the Palbociclib/Letrozole combo didn’t work for me). I actually found the side effects more manageable than the ones I was getting from Palbo.
The Secondary Cancer Facebook Group has a number of members who are also on Cape and many of them do very well, so it seems to be a very well tolerated and respected drug.
My side effects are pretty minimal and I’m on a dose of 1300mg twice a day. My biggest issues is my skin - I have eczema and its been a lot more difficult to manage since I started Cape. This week I’m on a 7 day course of Prednisolone because the eczema has just gone haywire all over my body. However, as far as complaints go, its the first time in a year I’ve had major issues with it that stopped me from doing my daily stuff (like walking etc.) and its probably also because I don’t do well with my eczema in the summer anyway. Hands and feet are on the delicate side and I have to look after them otherwise the skin can break and become sore - but its not been awful!
Hope that you are getting on ok with whichever drug you decided to go for xxx
Hi Timmycat
I read your post with interest. I’m halfway through my 4th cycle and my side effects are very different from others’. However, I do agree with my oncologist that it’s a kinder treatment if you think about hair loss, sickness etc. I started on the full dose and, having problems with swallowing tablets, I ended up having to take 12 x 150mg morning and night! It’s been reduced by 20% so now it’s 9 tablets at a time.
My side effects have been dry mouth/throat, unpredictable bowels, and inexpressible fatigue. I have low blood pressure too, having been put on statins for higher BP just before diagnosis, so there’s a dilemma there. I haven’t had a single “day off” since I started but it has to be worth it. I’ve found the first 5 days of the cycle are kinder but the week off is just time for the drugs to carry on working so I drag myself to hospital and ask what’s going wrong. Obviously, the answer is nothing - we all respond differently. Some people have sore feet, some get skin reactions, some are hit by fatigue. Some miss out on them and get their ‘week off’. Don’t worry about the side effects - they have to tell you what may happen but it doesn’t mean it will. Good luck, keep your diary of symptoms and get the dose reduced (it’s gauged by your weight) if necessary. I think my onc decided to cut the dose when I said I felt like a vampire, I needed blood!!
Good luck
Jan x
Hi I have been on Cape and Herceptin for about a year and a half now, I am on 4000mg per day, two weeks on one week off. I have found Cape very doable, side effects have been minimal, as has already been said hands and feet have been my main issues but if you keep on top of it with creams they are not too bad. Cancer is in my bones, spine hips and breast bone. Cape has reduced some lesions and kept the rest stable, I am able to do most things, I do get fatigued sometimes but its manageable. I hope to be able to stay on Cape a long time if possible, good luck on your journey and i hope it works well for you.
Thank you ladies just spent last half an hour reading this thread. I’m due to start Capecitabine next week having been on palbociclib and anastrazole for the last 2 years. It stopped working about 5 weeks ago and I’ve been without anything for a while, secondaries in my mediastinum and lungs are very active and I’ve been feeling pretty pants really but you’ve all given me a fresh outlook that it could all settle down again with Capecitabine. I’ve got some cream in in case of the sore feet but if it’s the right thing to say I’m looking forward to getting started and maybe life can get started again.
Thank you all and sending good karma and big hugs
Hi Timmycat,
I’ve been on Capecitabine for over 2 yrs. It’s kept me stable in that the tumours didn’t grow, for over 2 yrs and cancer markers hardly changed.
Side selects were OK, much easier than fec for me anyway. I’ve kept my hair and learnt to live with the aches, as cancer treatment is all about how you tolerate it versus the potential benefits.
I was told it wouldn’t work forever and sadly, it has stopped working. I’m now waiting for biopsy results to determine next move.
If the choice is yours to take, I’d say give Capecitabine a go. On balance the side affects are worth it.
Good luck for the future.
Irene
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Hi Timmycat
I was on Cape for over three years. It took a while to find the right dose as to start with a was on the highest dose. Over the first few months they reduced it and then change it from two weeks on two weeks off.
The main side effect was tiredness. I also lost my appetite but overall it is much less of a hassle that the IV that I am now on and the side effects were tolerable. After being on it for a year they gave me two cycles at time to take home so I only had to go to the hospital every 8 weeks.
If you do decide to go down this route and suffer side effects to start with make sure you ask you drs if they can reduce the dose.
I hope this helps you make your decision.
Hugs
Sarah