Taking a break from Xeloda

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I have been following the message board for some time and have found it very comforting knowing there are other people out there ‘in the club’.

I wonder if anyone can give me some advice about taking a break from Xeloda? I have taken Xeloda for 6 months (Jan to June this year) and scans showed it had reduced my liver tumours and got rid of a small tumour on my lungs. No indication that it had improved my bone mets but onc reckons they are more difficult to guage change anyway.

So about 3 weeks ago, in discussion with my consultant oncologist, we decided I would come off Xeloda for the summer and have a CRT scan in September with a view to going back onto Xeloda or staying off for longer if things not deteriorating. My onc’s view is that it is good to have a break so as not to build up resistance, and also to see if quality of life better without the Xeloda.

Trouble is after the first week off Xeloda (which was OK) I have been feeling wretched. I have been very nauseous, vomiting and retching sessions, so have started taking full prescribed amount of Domperidone (which I was not taking when on Xeloda). My bones have been really aching with new pains in my neck to such an extent I was given an ‘emergency’ MRI scan to make sure no trapped nerves/spinal cord (there was nothing trapped, thank goodness). So I have had to up my painkillers to max prescribed (co-codamol) – I was only taking a couple a day when on Xeloda. I have also had radio on my neck and hip this last week to ease the pain – this has made me feel even more zonked but I hope will improve things shortly.

My question is whether others have tried ‘taking a break’ from Xeloda and if so have experienced anything similar. I have read messages from others who have been on Xeloda for years – is that without a break?? I have an appointment with my consultant next Tuesday when we will decide next steps so I am keen to hear others’ experiences.

My original diagnosis was DCIS about 12 years ago on one side; after about 5 years new occurrence in other side – had mastectomies and usual chemo/radio for these. My bones started to show possible effects 2 years ago and I went on Bondranot then. Liver mets and bone mets diagnosed 18 months ago and I had 6 months of chemo - docetaxol.

Sorry this is a long and detailed message, but I am a bit wobbly about all this happening so quickly.

Best wishes to all,

Lottie

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Hi Lottie
I was on xeloda for 2 years and I did have a couple of breaks for hols and Christmas but didnt have any side effects just enjoyed the break. Sorry cant really help all I can advise is to let your onc know how you are feeling. I had rads in Feb on hip, spine and back of neck and felt poo for weeks afterwards I am sure otherswill be along soon and may be more help than I have been.
Welcome to the club we would all rather not be in, but the members are lovely.

Love Debsxxx

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Hi Lottie

I am currently on xeloda and my onc has talked about reducing the drug in the future to minimise side effects but not about taking a complete break.

Hopefully you can talk things through with the onc next week and get some answers, as it must be concerning that you are feeling worse now you are not taking it.

Sending gentle hugs

Kay xx

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Hi Lottie

So sorry to hear that you’re having such a hard time, having stopped Xeloda for the summer – so sudden, unexpected and unfair for you – I’m not surprised it’s made you a bit wobbly! But it must be a relief for you that you’ve had a good response from your onc team (the MRI & rads).

I was dx with liver & bone mets in 2003, and have been taking Xeloda for over 4½ years, initially at a “normal-ish” dose of 2000mg x twice a day, two weeks on and one week off. I’ve also been taking Bondronat and Aromasin (following Arimidex failure after two years). During my first 18 months on Xeloda, I had two four-week breaks while I went on long-haul holidays (without any problems), and had two shorter breaks + dose-reductions because of hand/foot, digestive & fatigue side effects. I’ve now been on 1000mg x twice a day for three years, with no breaks and very few side effects. The Xeloda really worked for me as well, shrinking or getting rid of most of my liver mets in the first year, and I’ve had almost entirely “stable” ultra-sound scan results since starting Xeloda – my only liver met progression in November 2005 was dealt with by changing my aromatase inhibitor, rather than my chemo. As for my bone mets (skull, ribs, spine, pelvis, sacrum, hip), I had a blast of rads on my pelvis & ribs at mets dx, and think the Bondronat has been doing a great job of healing & prevention since then, even though I’ve had a bit of progression – three episodes of bad pain in new places, which almost totally disappeared after a couple of weeks – I like to think that’s the Bondronat kicking in, but the Xeloda might be having an effect on my bones, and the Aromasin as well, probably – difficult to tell.

I’m satisfied that this combo of drugs – Xeloda, Bondronat & Aromasin – is working for me, and so have agreed with my onc team (and my partner!) to not give any of them up or have any breaks, on the theory that “if it ain’t broke, don’t fix it”. My onc team would prefer me to have a regular lower consistent dose that I can fairly easily tolerate, than a more “normal” higher dose that gives me poorer quality of life because of side effects and requires me to have regular breaks. But of course, this Xeloda dosage & timescale regime has suited me and my mets – it might not be best for you or anyone else. And our oncs all seem to have different views about how best to use this drug.

This is a long-shot, but I wonder if you might be having these symptoms because of other (maybe undiagnosed) health problems? It might be worth a discussion with your GP to rule out possible other causes of your pain & nausea.

Hope the meeting with your onc goes well next week, and that you start to feel a lot better very soon.

Marilyn x