Capecitabine (Xeloda). Anyone got any experience?

Hi there,

I am due to start on the above next month and wondered if anyone has any experience of taking it?

I, unfortunatly had to have IV chemo on 2 separate occasions so this is my first ‘taste’ of the tablet form. I found the IV chemo ‘doable’. I looked after a new born baby and then worked during the second lot. Have just finished brain radio which was very gruelling so am a bit worried about having months of difficult treatment.

Any news/advice would be fantastic.

Thank you.

Ruth

Hello Ruth, There are lots of us on here who have been on this chemo.
I have been on it on two separate occasions. The first time I developed sore hands and feet so they reduced the dose ( number of tablets) which helped a bit. On the second occasion they started me on the lower dose and it was kinder to my feet. But not all people who take the drug have the foot/hand problem. I had IV chemo 22 years ago when I was 39. The Capecitabine was much more do-able than the IV one.
I also used the mouth wash they gave me and they also gave me anti-nausea tablets and something for loose stools. I didn’t need them all the time…but did have to use both sometimes. I didn’t loose my hair but I do have fine hair and it became finer still, but no baldy bits thankfully.
I have extensive bone mets in my spine, sternum, ribs and pelvis but have had mets for 12 years now. I gave up work at this point but still have a good quality of life. In fact we are flying off to France on Tuesday to visit my elder daughter who lives and works over there.
One of the ladies on here takes Capecitabine ALL the time. I am sure she will be writing back to you on here. We call her the “Xeloda Queen” ! If you look up the “Bone Mets” and “Liver Mets” threads you will be able to read their posts. You are free to read and add comments on all these threads without actually having liver mets say.
I am sure you will be fine on this chemo regime. Let us know how you get on. Much love Val

Thanks, sounds encouraging.

Hi there Ruth, marilf is the Xeloda Queen Val mentioned, 8 years and counting and there’s lots of encouraging posts in search. I’ve been taking the tablets constantly, 2 weeks on, 1 week off, high dose, since April 2008. My first chemo after 5 years of hormonals, I have bone mets. I have found it very, very doable. Have no tiredness, no tum troubles, just have (sometimes) had cracked heels and a couple of skin cracks on my thumb and one finger. Flexitol heel balm has been a life saver, Udderly smooth is another good cream…lots of posts in the search for Udderly. I understand Xeloda reaches through the blood brain barrier too. Good Luck and I hope you find this chemo as doable as I have…Belinda.x

I am due to start this on Thursday 31st March I am hoping the side effects are not bad.
Anne

Hiya, I was diagnosed nearly 5 years ago and went on a Tact 2 trial which involved Capecitabine. My main problem was constipation which my oncologist said was unusual. Other than that I had slight problems of cracked heels, tingling hands and dry skin on my neck but on the whole I sailed through it. Good luck x

Hi Ruth & Anne

Well, I see that everyone else has beaten me to it in reassuring you about Xeloda – we’re all so different in our cancer and responses to treatment, but most of us have found this tablet chemo to be significantly more bearable than some IV chemo treatments. As others have suggested, please do have a look at all the posts about Xeloda/capecitabine – you’ll see loads of us sharing info about its impact on our mets and our lives, along with hints & tips on dealing with side effects.

Huge good luck with this treatment – hope it works well for you!

Marilyn x (the Xeloda Queen)

. . . and just remembered "go cake’ for constipation (recipe in a post from juliebtaurus in November 2010):

“GO CAKE"
4oz All Bran, 5oz sugar, 10oz mixed dried fruit (basically whatever is in the cupboard – use a nice mixture) – apricots, sultanas, cranberries etc, lots of chopped prunes for extra “GO”. ½ pint of milk 4 oz self raising flour. Put All Bran, sugar and fruit into a bowl, mix, add milk and allow to stand for at least half an hour (while you recover from the physical effort so far). Sieve in the flour, mix well and pour into well greased 2lb loaf tin. Bake in moderate oven (180 degree c) for about an hour, until a knife comes out dry. Cover with foil after 30 mins if its browning too much. Turn out of tin and cool. Serve in thin slices with butter as thick as you like it!

Try it! xx

Hi ruth
I just started my 3rd cycle of capecitabine this morning and like you have just had whole brain RT, finishing just over 2 weeks ago. I found the RT really exhausting and still am shattered from it but have found the chemo fine. I had very good antisickness through the RT and still have it now as we don’t really know if its the chemo or RT yet. No sore hands or feet but a sore mouth towards the end of cycle 2. I am fairly confident that once the SE from the brain RT ease, this will be a very doable chemo. I should also say that after 1 cycle my markers were down and I feel much better than before despite tiredness from RT so am confident that it is working.
all the best
Louise

Thank you Marilyn for your posts, I actually only started today as they were not happy with my bloods but when I had the next blood test it was even worse. Not looking forward to taking all those tablets! I am hoping this works better than the iv the doctor is hopeful too otherwise its back to the drawing board.
Anne

I’m due to start taking this next week so am very interested in these postings - will join in once I get started on the tablets. Really hoping they work as Docetaxel didn’t and that was very disappointing after 3 doses and coping with its SEs…
take care all
Fran

Hi Fran, I’ve just finished 3 Docetaxel and it hasn’t worked for me either so understand how you feel. I start 3 x FEC next Friday and am hoping for a better result but it is discouraging when the’Gold Standard’ treatment does nothing so can empathise.

Good luck with all your treatment ladies.

Scrapper

Hi, i’ve been on Capecitabine (& Lapatinib) for 10 months now. I’ve been told that I’ll remain on this. I progressed on FEC, Taxotere and Herceptin, but this seems to be controlling my spine mets nicely and I’m getting used to taking the tablets. I get sore hands and feet from time to time and my entire gastrict tract has been put through it, but I take aloe vera juice now which is so soothing and has stopped my tummy cramps.
xxx

Scrapper - can relate to your disappointment; let’s hope that Xeloda suits us better
Am making notes of hand and feet issues - so thanks for the warnings as it’s what the onc talked about the most as a SE…
Do keep in touch
Fran

ivejust started my second lot and im fine, but tired got an awful cough that keeps me awake but other than that fine! i had an awful time with 4x ec and 4 x tax this seems like a walk in the park compared to how i was with that. just hoping it does its job i will be scaned after 3rd cycle
kaz xx

that sounds very encouraging Kaz - good luck with the scan after the third dose
Fran

having scan at end of second now date just come through as 27th april will get results on 29th so fingers crossed x

Scrapper - good luck with FEC - I got on ok with that before TAX and it did have a positive imapact for several months afterwards. Getting used to the Xeloda routine of daily tablets - interesting to note that constipation can be a problem since I was given tablets for the opposite condition (can never spell d… correctly so won’t try!!) but am moving towards the constipation issue - glad to know others react this way too. Am on day 5 of first dose - ok so far and fingers crossed! Am greasing hands and feet as precaution - feet dry out anyway in summer when I live in sandals and I did “go into them” this weekend in this lovely sunshine.

Kaz - I’m having scan after second dose as well; are you on a trial? I am on the Capecitabine and Vinflunine trial but am actually only randomised to get the Capecitabine which is what I’d have been put on anyway.

Take care all
Fran

a trail wasnt mentioned no, just on the xeloda
on week 2 of second round and doing ok on it sometimes im lose sometimes normal, ive noticed quiet alot of bruises on my legs but i do bruise easy
kaz x

looks like the Capecitabine (Xeloda)hasnt worked for me ive only had 1.5 lots but was taken in hospital with chest infection and after an xray it shows my mets on my lungs have grown so starting another chemo called vinorelbine ( navelbine) ayone done the same im scared that wont work either
kaz x