How long on Xeloda?

I have read of ladies who have been on Xeloda for years. I was discussing this with my oncologist’s registrar(?) about how long I might be on the drug. She said that it wasn’t a ‘maintenance’ chemo and that normally it would be prescribed for 6 to 8 cycles because the toxic effect builds up. So, I am confused by this. She said it depends on the oncologist and how well the patient tolerates it but even so, she gave the impression that it was a relatively short time, like other chemos.

How long have you been on it?

Ann x

Hi, I’ve been on Xeloda for 4 and a half years…I had a 4 month chemo break from it over summer and having just restarted the chemo I’m pleased to say it’s already shown it’s working again after just one cycle. (I have tumour markers taken.) I know one lady who was on Xeloda for much longer than this.

Hi Ann, I have been on Xeloda on and off for years too. I started with a higher dose which resulted in very painful feet so they reduced the dose and things improved. After first 6 cycles I had a break of 18months, then on for another 6 cycles approx and this time I had 2 years without the drug. I have been on and off it for other resons too because I had a hip replacement etc. Was on it until a week ago but now the Oncologist is going to try me on Taxol! But there was one lady in particular that was on it for even longer…we even named her the Xeloda Queen and she still holds that title although she is not on it now as far as I know. Have you see the other thread about Xeloda? If you cannot find it PM me and I will look it out and bump it up for you. Hugs Val

Thank you. Yes, I have read about the ladies who have been on it for years and, yes, I have read the Xeoloda Tips thread. I told the doctor today but she seemed to think I would be on it for a limited number of cycles. I shall ask my ‘proper’ oncologist when I see him next.

I am glad it is working for you ladies. After the first scan, my onc said the results were encouraging, so fingers crossed that it will work for me, too.

Ann xx

I am sure it will Ann. I think it is a great drug and seems to help so many BC patients. Let us know how you get on. Perhaps he/she thinks you will only need 6 8 cycles to start. I am sure that you are in good hands. You coulld ask if you could go on it again at a later date if necessary. It is often difficult to get the correct dose sometimes so if the side effects trouble you remember they can always reduce the dose. Hugs Val

Thanks, Val. I seem to be tolerating it pretty well, compared with other people I have read about. I had a difficult time on Epirubicin. It is so much better than that. As you say, perhaps they use it in ‘blocks’, rather than continuously.

Ann x

Hi again. I was on constant 3 weekly cycles 2 weeks chemo, 1 week off, a high dose and I tolerated it very well. At the end of every cycle my bloods were fine. In my head it was, at times, hardly chemo and I found it easier to tolerate than a previous 3 and a half years of Arimidex. This is my first chemo and previously I’d had years of continuous hormonal treatments. I was diagnosed stage 4 from the beginning, in 2003. As my bloods were coping with the chemo so well my Onc was fine about me staying on the tablets for so long. I was very reluctant to take a chemo break, I was worried the chemo would not work again after a break and a new treatment, perhaps less kind would be my next option but it was only a couple of months before stopping that I’d started to find the treatment was causing my bilirubin levels to rise. I have bone mets, no liver involvement, had another CT before restarting chemo which confirmed this was still the case and just 6 weeks after stopping chemo my bilirubin levels were back to normal. I feel lucky to have had such a long lasting response to this chemo. I have read various posts from others worried that chemo does not work well for those with bone mets but can only say my experience has been that Xeloda has worked well and kept me and my bone mets stable for years now. Good Luck with it.

Oh Belinda…how I love reading your posts and Vals as well. You both give great hope to all of us, just by commenting and sharing your experiences. I would like to become a member of the disease for many years club! I’m still a relative newbie - 3 years so far. What an anniversary to celebrate, but I have a bigger and better one next year…my sixtyieth…whoa there how did that happen??!
Love to all
Isobel x

Hi Isobel. Hooray! have a fabulous celebration next year. There is something extra special, I think, about reaching these 0 birthdays after diagnosis. I was diagnosed in my early 40’s so was very surprised, happy to be here to see my 50th…I had the same how did that happen feeling! Take Care, With Love…x

Ann - I’m on my 7th cycle and currently have another 5 scheduled and expect to be on it as long as it continues to work for me. My onc has said that I might go onto hormonals to give me a break. I’ve been wondering if it takes longer to build up a resistance when you take a break and go back onto it later but keep forgetting to ask onc about that. Best to ask your usual onc as I found when dealing with the registrar that he seemed reluctant to say too much.

I think as others have said it’s a very individual thing as to how long you take it. Most of those I’ve read of here seem to tolerate it reasonably well but the chemo nurse tells me this isn’t always the case. At Aberdeen they have one person who’s on cycle 180 - I’m guessing with the odd break but maybe not - I’m only just coming up to end of cycle 4 and feel on top of the world and wouldn’t feel I needed a break if I were offered one.
Personally if I still feel OK and its holding my bones as they are, I’d be very reluctant to stop and try something else just for the sake of it or because the onc says so - I’d want to know why they say stop, not just do as I’m told cos ‘Mummy knows best’ which seems to be the attitude of some.

Gail - My onc told me that often, after chemo, hormonal treatment starts working again, if it had previously become ineffective.

Nina - Like you, I like to know the reasons for decisions, rather than just accept what I am told.

Ann x

Ann - that sounds encouraging.