I lived on Fortijuice during the 4 months of FEC chemo as I had severe faecal incontinence due to stopping my Crohn's chemo. The hospital prescribed it foc and even had it delivered to my home. I lost 28 lbs and friends in the US started sending me size 6 and 8 clothes! I drank 3 cartons a day (9 different flavours all yucky) plus copious amounts of ginger ale and ginger beer to quell the nausea. The 900 cals per day was enough to keep me alive, and I am now back to my normal weight of 8 st. I tried Ensure, but it made me feel more nauseous.
I didn't really have 'cycles' with Xeloda, I was on it constantly with no break (and 3 week cycles of 2 other drugs at the same time). Think this may have been because at the time they thought I had primary gastric cancer rather than secondary breast cancer in the stomach, and gastric is generally much more aggressive. I was overweight when I started so losing weight didn't matter so much - but it's always better not to. I don't think I had any interruption because of low blood counts, but it's hard to remember.
Lola, if I were you I would start keeping a count of calories - write it down and aim for 2000 a day. If you find 2000 really hard, demand Scandishake. If you're anything like I was, you now have to start eating all the things you felt guiltly about before - cream and so on. This is the sort of advice that the nutritionist will give you once the onc has noticed you're losing weight - but you may as well start now.
I was very interested to read this thread - especially about the anorexia. I was only on xeloda briefly for 2.5 cycles before my onc took me off it. In that time I lost a stone in weight - and I am not that big any way - I think at that time I was about 8.5 stone so could ill afford to lose it.
Congratulations. That has cheered me up.
I was only diagnosed 4 weeks ago and so far I've been feeling pretty rotten. I was due to start my second round of Xeloda yesterday but my blood counts were too low so I needed a blood transfusion today and will have to wait a week to restart chemo.
Do you remember having similar problems at the start of your treatment? I've been feeling rather depressed today, convinced I'm going to be one of the unlucky ones.
That's great news, Pontentilla. I am sure your post will bring hope to many people on here. I love to read success stories like this.
Lola - thanks for the reply. I did a bit of research after posting here, and anorexia is quite a common side-effect. I would definitely recommend getting started with a food supplement asap, and probably one of the medical ones (Fortijuice/shake/fresh, Scandishake) rather than Complan which as I recall you can buy over the counter (the medical ones need to be precribed). Personally, I like Scandishake best because it makes up with real milk; you can make quite a good chilled latte with espresso, milk and the flavourless sort of Scandishake!
Just to cheer you up a bit more - I am just about to reach my 5th anniversary of being diagnosed metastatic, and my mets are in my viscera (liver, stomach, pancreas etc etc) which generally means a worse prognosis than mets to the bones. So you see it can be done! Best of luck!
Welcome Sue even though you haven't got secondaries!
I haven't experienced any lack of appetite since taking capicetabine with minimal side effects to hands and feet due to low dosage.
I have a friend though, who also posts on here, and she has had to have a break at the moment because of the state of her hands and feet so I really feel for her.
I also get tired, especially in the afternoons but having been on it for the last year I suppose that's not really surprising.
Good luck Sue
I haven't got secondaries (not that I am aware of anyway) but do have a local recurrence on the chest wall for which I am being treated with Capcitabine and Herceptin.
I just want to say now much I can identifiy with some of the side effects. Although I've not had really bad hand and foot syndrome, apart from a couple of blisters on my feet, I do get the lack of appetite. Tiredness is another drawback. I feel I could sleep for England! It's nice to be able to come here and compare side effects as it helps put things into perspective when you read about others going through the same thing.
I hope you ladies don't mind me posting on the secondary thread but I wanted to add my feelings on Capcitebine to this thread.
I started on Xeloda two and a half weeks ago and am already experiencing anorexia. I have lost 10lbs already and am considering Complan or something similar as all I can eat is soup or anything very liquidy. I have the additional problem of paralysis in the right side of my face and a very dry mouth which makes eating even more difficult.
I must say I've been very heartened by this thread. My breast surgeon told me I had weeks without treatment and months with it (I have mets to bones, liver and lungs) but I now realise this is worst-case scenario and there is hope that I may do a lot better.
I read recently that a breast cancer vaccine has been developed in the USA and the first women to benefit from it will be stage IV women who have had a good response to treatment and are considered NED (no evidence of disease). So there's hope for all of us.
Has anyone who is on/has had capecitabine had anorexia? I had 4 cycles of ECX (epirubicin, cisplatin, Xeloda) several years ago and it was very hard. I put a lot of it down to the E and C which are strong drugs, but one of the really difficult things was that I could hardly eat at all after a while. I assumed this was the X (which I was taking continually with no break) but maybe it wasn't. (I didn't get hand and foot syndrome at all).
I was extremely fatigued, but it was difficult to tell how much of that was the chemo per se and how much of it was living on about 300 calories a day mostly in the form of Fortijuice (yuk). Has anyone else had this side-effect from capecitabine/Xeloda?
Good Luck Angela, and I think you are right - the antibs are probably adding to your side effects, hope they settle soon.
I have only just finished my first cycle of Xeloda so it's early days for me. My dosage is 2000 am+pm. Did feel nausea and yesterday I had a bout of Diarrhoea but its better today. I'm also on Antibiotics at the mo to it could of been a combination of that. It's good to hear that some ladies are on it for year. I just hope it will work with me
Sorry the Taxol didn't work for you, but with regards to side effects they are not as bad as some of the other chemos and you taking them at home.
Good luck keep my fingers crossed
Let's hope we can be on it for ages as well! I know my oncologist won't increase my dose because of my liver so is similar to yours Jenny. I've only just started to drink wine (white) in a very small amount with loads of soda water as before I would get quite bad pains in my liver area which I put down to the fact that my liver couldn't cope with it.
I can't remember how many tumours I have in my liver - I think my mind blanked over at that stage! Plus I have spine, pelvis and femur mets but these are well under control at the moment and, thankfully, so is my liver. I feel well at the moment which is a completely different story from this time last year when I was told I only had about 3 months so that's why I don't really get too engrossed in stats as I've proved them wrong!
Fingers crossed that we continue to do well. Would be interesting to read that article if you could find it!
I'm the same as you Pinkdove, 3 biggies and a titchy twice a day. The only difference is this is a reduced dose for me. Our livers must be in a similar dire state. Marilyn knows how very much I envy her xeloda status and aim to emulate her success with this drug. I am sure I have read on bcmets and another site of women being on it for six and nine years respectively but have since searched for this info again and can't find it.
I'm on capecitabine, I started after a sever allergic reaction to taxol. I have liver secondaries. I find I get very mild side effects from it, mainly hand and foot syndrome, which is controlled by use of e45 itch crm and 50/50 cream.
I feel really well on it with the occasional day when fatigue is bad. I have known other people to have had a bad time with side effects, but hope you get minimal side effects. Being oral it is more convenient and no trying to find veins for venous access. I believe it has similar action to iv chemo 5flu. Hope this helps sorry for rambling on.
Just want to endorse Marilyn's comments although I was started on a very low dose because of the state of my liver and have now gone up just a bit (3 big tablets and 1 small one twice a day) and manage the side effects well but I do think this is because I'm still on a lowish dose.
It's heartening to hear that someone has been on it for four years - mine is just over a year and I hope I've got many years on it as well.
I've been on Xeloda for four years, since I was diagnosed with liver mets as well as bone mets in October 2003 (primary dx in 1997). I'm also having Bondronat (a bisphosphonate tablet to strengthen & protect my bones) and Aromasin (an aromatase inhibitor tablet to reduce the impact of oestrogen on my very ER++ breast cancer).
Initially, the Xeloda reduced my liver mets considerably, and has kept me relatively stable for all the time I've been on it. Started out on 2000 mg x twice a day, but had to have breaks and dose reductions as a result of side effects: hand/foot syndrome, digestive problems and fatigue. I've been on 1000 mg x twice a day (two weeks on, one week off) for over two years now, and still going strong - this is a very low dose for someone my size; the amount you take is supposed to be related to your skin surface, but I've found that oncs seem to prescribe mega-doses to start with, and then reduce if/when your side effects really affect your quality of life. Generally speaking, though, it's easier than the other chemo treatments we receive, and, because it's tablets, no vein problems. Also no hair loss! You'll find loads of info on this website from others taking Xeloda, by doing a search for "xeloda" or "capecitabine", which is this drug's generic name. It also has its own website: www.xeloda.com, for more info from the drug company.
Do invest in some nice hand & foot creams, and ask your onc about taking Vit B6 -- I've been told 50 mg x three times a day can help with the side effects.
Hope you have a good response to Xeloda, and that it's gentle for you.
Hi there, I have been on xeloda for nearly a year now, for extensive liver mets. I am still on a relatively large dose (1750mg x 2 doses per day) but I am tolerating it well and it has stopped me doing nothing, unlike previous chemos I have had, which have landed me in hospital. Good Luck with it and keep in touch.
I've been on it for just over a year now and have responded well to it. I am on a lower dose though as my liver was severely compromised and they thought it wouldn't work but that I could try it and I'm still here a year later! Because of the lower dose I don't get sore hands and feet but they are quite dry and my cuticles have disappeared!
I get tired but it doesn't stop me from leading a normal life. The first chemo I was on totally debilitated me. The other huge plus with this chemo is that we keep our hair!
Posted by moderator on behalf of Terry
My wife was on Xeloda ( Capecitabine ) for over a year. The only downside ( for her ) was fatigue, no hair loss, no bad taste.
It did make her finger joints sore in the morning. They give you a dose based on body mass, at first they started her off on too strong a dose and it made her vomit, only once then they reduced the dose and it was OK.
It did not shrink the tumor on her liver but as they said it kept the brakes on. She finished in september as it had stopped working and the fatigue was getting worse, the tumour is still the same so the effects are still working.
You take it morning and night within 30 minutes of eating, usually something between 2500Mg to 4500 Mg Day.
I would say nothing to fear from this drug and it certainly has helped my wifeÂ´s condition.
There are quite a lot of people on capecitabine (xeloda) and I hope you get lots of replies. It is an oral chemoptherapy and most people find the side effects more tolerable than other chemos. Common side effects are hand and foot syndrome (red itchy palms and soles) and diarrhoea. I've been on xeloda since May for chest wall and supraclavicular tumours. I haven't had hand and foot syndrome but have had a couple of bouts of bad diarrhoea so the dose has been reduced. I know people who have been on this drug for many months..including people with liver mets..and it has controlled spread well.
I had my first 6 cycles combined with an intravenous chemo called vinorilbine, and after 6 cycles of both much of the cancer had gone. Now I am just on xeloda side effects manageable and I feel pretty well right now.
Whilst you are waiting for your fellow forum users to share their experiences of capecitabine it may help to read the BCC information leaflet on this treatment. It can be found by following the link below:-
I hope you find this helpful.
Breast Cancer Care
I am presently on Taxol for advanced beast cancer but have developed new met in liver and sternum since I started the course. My ONC wants me to start capecitabine. I don't know much about this drug. Is anyone else on it and why, is it working for them, what side effects have you had. I am worried and would appreciate any help and advice I can get.