Have just come to the end of my first 3 week Xeloda cycle. The first 2 weeks taking the tablets were OKish. I had a little tingling/mild soreness in my feet, but no peeling! I had a bit of acid indigestion, but no sickness or diarrhea. I woke up on day 15 thinking I had got away lightly and was looking forward to no tablets and a ‘week off!’
Then it has all gone downhill, I looked in the mirror to see my lips covered in nasty yellow ulcers, ‘tiredness’ goes no way to describe how knackered and lethargic I feel and my stomach hasn’t stopped cramping since Friday!
Is it normal to feel worse on the week off? I can understand the tiredness being accumulative, and the ulcers due to being run down, but why is my stomach so painful if I haven’t had a tablet for a few days? Has anybody else experienced stomach pains? (I am going to the toilet OK) and if so what did you take for them?
Can anybody who has experienced Xeloda let me know if this is the pattern of what it will be like, or do SEs vary with each cycle?
Fay and m1yu, I hope you enjoy your ‘week off’ more than I have!
I’m not much further down the line than you - just in the middle of my third cycle, but I had an extra two week break between the first two as I had to have some surgery. I seemed to breeze through the first two, but things have really caught up with me this time, with hand foot syndrome for the first time, indigestion/nausea and fatigue.
I’ve just been sitting here this afternoon mildly wondering if it’s my imagination or if my lower lip is feeling a bit numb, and your mention of ulcers is making me think I may be in for those next. There is nothing too dreadful at the moment, I can certainly cope with all the side effects at their current level, but it has come as a bit of a shock when I thought I was doing so well. I also don’t understand why the hand foot thing is so much worse on my right foot than my left - what’s going on there then?
One encouraging bit of information I read recently though is that people who do have the hand foot syndrome do statistically better on Xeloda than those who don’t, so there is some payoff for our suffering.
I hope you feel better soon, and like you I hope that some of the more seasoned xeloda users will add their experiences too.
My ulcers were just on my lower lip, they did feel a little sore the night before, but weren’t numb that I remember - I hope you don’t get them, they’re not a good look.
That’s bizarre about your right foot, both of my feet tingled, but only the right one went a little pink, as did the palm of my right hand. My feet weren’t too sore, they just felt like when you’ve been dancing in stilettos the night before! (I think - although with my bone mets, it’s been a very long time since I’ve worn heels! or danced!!)
Both my feet felt “throbby” and went red, but the right one has also peeled quite spectacularly. It seems to be improving now (I have 2 more days of tablets then the week off) but I am still moisturising every night.
I am off to collect my fourth cycle tomorrow, so just at the end of my week off. My pattern seems to be first week OK, second week start to get really tired and don’t feel so well then on my week off the first few days not so good and then feel better before off we go again. Had a scan last Thursday, so hope I get some good news tomorrow.
I find I have a few blotches on my face, never used foundation but have stared. My feet are OK been moisturising, they have felt a little sore after walking the dog.
I know some take this drug for years but don’t think I could cope with that, its one thing to put up with feeling rough for a limited period but not indefinitly.
I’ve not read all the replies yet, so forgive me if I’m repeating what’s already been said.
Just to let you know that my onc warned me when I rang him on Friday (my first day in my off week) that some people get more and worse side effects during their off week. Sounds like you fit into that category.
I’m OK apart from the tiredness. Saw my onc today and he warned me that some people get it worse in the 2nd / 3rd cycle!!! Can he say something nice for once, lol!!
Hope your side effects settles down. Do mention them to your onc by the next time you see your onc.
Hi all, I’ve been on this chemo for 3 and a half years…over this time I have found side effects come and go so things can get better.
The main side effect for me was painful heel cracks…Udderly helped at first then I tried Flexitol but for the last few months I’ve noticed a huge improvement using Eucerin Intensive Foot Cream (10% Urea.) My hands are not so bad…I use Nivea hand cream, Q10 plus.
Nicky those ulcers sound painful. Don’t know if this is useful advice but I take my Xeloda (2,000 mgs twice a day) during a meal and with plenty of fluid to wash the tablets down. If not I’ve noticed peachy residue on my tongue. I haven’t had any real problems re tiredness and cramps and my bloods bounce back…whether it helps but I take 2-4 cups of white tea a day (to boost my immune system and it tastes nicer, to me, than green) and 2-3 teaspoons of Manuka honey (straight from the jar) a day. At least 10+ and preferrably 15+ Manuka. The week off is usually the worst for side effects.
Good Luck all…x
Sorry to hear about some of you having a tough time with side effects so early in your Xeloda treatment, and hope this eases off as your body gets more used to the drug; I had a couple of dose reductions in my first 18 months, on the basis that my onc wanted to find an effective dose that I could tolerate consistently, rather than a too-high dose that made me feel vile all the time. Like Belinda, my side effects have come and gone, with no discernible pattern. Sometimes I do feel more tired in my week off, but most of the time I feel OK; and, weirdly, my left foot has more hand/foot syndrome problems (rash, numbness, peeling, heel cracks, etc) than my right. As I’m also diabetic (tablet-controlled), some of my neuropathy problems probably have nothing to do with the Xeloda; ditto some digestive issues. I do hope all of the “Xeloda newbies” manage to tolerate this treatment - it’s helped to keep my liver & bone mets stable for eight years, and I hope it works for you as well! Marilyn xx (yes . . . the Xeloda Queen)
Hi, capecitabiners! I’m on a 4-week cycle, (1 week on, 1 week off) x 2. Now on cycle 10 and it continues to work well for me.
When I was on the standard 3-week cycle, I felt less well at the end of the 2nd week (such as very slight nausea), now the SEs have settled down and they don’t change that much from week to week. I do have quite bad foot problems - frustrating - feet are usually at their most blistery on the day of the onc visit…
If you are having bad side effects, contact the chemo nurses and tell them. They may be able to help deal with the side effects and the oncologists need to know about your problems to know whether they need to change your dose/treatment.
Don’t wait until your next appointment, phone them now. These chemos affect everyone differently (I’ve had Xeloda twice with very different side effects the 2nd time) and the hospital doesn’t know how the chemo is affecting you unless you tell them.
Best of luck, Lynn
PS As regards cracking feet from Palmar Plantar, I have found that Pyrodoxine (B6) tablets and PUVA 2 cream from the chemo department and Aquadrate (10% urea) cream from the GP all help, and they are all free!
Love Lynn
Hi Iam an infrequent contributor to forum so my apologies.I need some advice re xeloda which I only started for liver mets on Friday.Ihave been nauseous and vomited a couple of times since starting.I feel absolutely hellish and not sure I can continue on same. have domperidone which has made no difference and tried buccastem this am but still feel bad.I have no apetite which I know you must eat to get these tablets down.I see my onc on thurs but any advice gratefully accepted.Thanks Teresa
Thank you to everybody for responding, your help and support are invaluable. I did go Today for my next 3 weeks tablets and my Zometa and have been deferred for another week, because all my bloods were too low, particularly the platelets!
Bizarrely I feel very well Today, so can now hopefully ‘enjoy’ my week off. I didn’t see the oncologist, but a chemo nurse. But before I started he did say he’d start me on a high dose 2 X 2150mg then reduce if needed.
Lyn and m1yu - I have been told to phone immediately if my temperature raises or I have any bruising, but I must make myself do it, as I’m not very good at phoning for help!
Jan - I hope your scan went well, I didn’t have any blotches on my face, but do seem to have a few dry patches.
Belinda I have been taking my tablets straight after a meal with a pudding or a yogurt, a quick swallow then a mouthful of something sweet! seems to suit me best! I find them easier in the evening than the morning, when I often ‘gag’ on them and then feel horrendous! Thanks for the ‘booster’ advice, I will have to try some manuka honey I bought some for my mother-in-law as she started chemo and didn’t think to get myself some.
Teresa - Sorry to hear you are feeling sick, my appetite has been rubbish too, but the more food I force down, the less I seem to gag on the tablets!
mrsblue - does the 1 week on, one week off cycle have less side effects?
marilyn- thanks again, I was giving your 8 years story to the oncologist and telling him, that that is what at expect too - at least! You will always be the ‘xeloda queen’ but hopefully we will all respond as well and become ‘xeloda princesses’.
Hi all, for Teresa…Hi I do know some people, (I think it’s a liver intolerance/allergy to the chemo???) cannot tolerate Xeloda…in your shoes I would give my chemo unit a ring tomorrow if you still feel really dreadful, you are still vomiting etc. A couple of friends were unable to take this chemo…but hope this is just teething troubles and things work out, settle down and you can continue with the side effects managed.
Glad you are feeling better Nicky. I started on 2x2150mgs and had it reduced to 2,000 a few months later…The Xeloda Queen has been mentioned by me many times at my hospital!
Hello to all fellow Capecitabeenies.
x
Nicky, glad you are feeling better. Re bloods low, maybe that’s why you were so tired.
I was given a fridge magnet about 6 signs to watch for and stop taking Xeloda immediately and ring chemo nurse or my onc. I’m pleased to say none has happened to me. One of those things is vomiting, so I think Teresa, you DO need to give the chemo unit a ring!
Belinda, I think Xeloda does affect the liver. It’s on the leaflet comes with the box. My liver mets are stable at the mo, maybe that’s why I can take them.
mrsblue, my onc mentioned the 1 week on 1 week off x 2 cycle as well. That’s considered a reduced dose when my current situation is under control (whatever that means!!) There is another option of 2 weeks on and 2 weeks off, but after a long pause, my onc decided the other option is better.
Hand and foot are OK, skin a bit sensitive and dry (lots of cream helps), but no redness or cracking. My worst week is my first week rather than the week off. I had a few days of headache and was taking the max dose of anti-sickness tablets to keep the food down. Second week was a lot better and so far, enjoying the week off. Think I’m on 2x1800mgs and is going to stay with the same dose for 2nd cycle. Oh, and forgot to say in my last post that Xeloda is working for me and my onc is very encouraged by the improvement I’ve had in such a short time!!
My tingly lips didn’t develop into anything more sinister, thank goodness, and I shall take my last dose of cycle 3 this evening.
Reading the blurb I see that Xeloda is recommended either in conjunction with a taxane, or after a taxane has failed. I had docetaxol for my primary chemo in 2008, and am now taking the tablets in conjunction with Abraxane, which makes determining which side effects are from which drug a bit tricky at times.
I get the impression most posters here are taking xeloda alone, which will be the long term plan for me I think once this initial joint regime finshes - and assuming it works of course.
What a great thread this is,it’s really helped me prepare for my treatment. I’m going to take my first dose at teatime tonight 2150mg but then I’m going to Blackpool tomorrow for the weekend!
Hope you are all OK and mainly SE free. Sue I hope that you had a great weekend in Blackpool and didn’t feel too bad on the xeloda. I went away for my first weekend too, I felt OK, but a bit strange having to take so many tablets in public in the restaurant. I’m sure I’ll get used to that!
A couple of questions, I read somewhere about not having a flu jab, I have one every year as I am a teacher, can I have one this year? I don’t know whether flu is a ‘live’ vaccine or not. I will ask on Tuesday!
The other thing is insurance, as my mets are quite widespread through my body, only MIA have ever insured me, but did ask last time if I was having chemo or not, when I said not, they gave me a quote. Has anybody else had travel insurance on chemo, will my week off be classed as not having chemo? or do I have to have had a clean break. It is our tenth anniversary in October and I am desperate to take my husband back to Italy, where we had a disastrous honeymoon (loads went wrong - we laugh about it now!) I would like to do it properly staying in proper hotels and eating in restaurants!(as last time my card was declined (in wedding excitement I had forgotten to pay the bill!)and we had to live off a small amount of cash!)
Do oncologists let you have breaks for special reasons, although I am not due to see mine before then so can’t ask?
Sorry it seems to be all questions, love to you all, wishing you weeks ahead of lovely moisturised pain-free feet and happy tummies!
Hi Nicky, I have the flu jab a couple of days, 2-3 days after finishing the last tablet of my cycle.
Re holiday as it’s a european holiday can you just have the reciprocal cover…sorry the proper name has escaped me…is it still the E111?..and if you are feeling fine I would carry on with the tablets through the holiday or give the Onc or chemo unit a ring to ask about a break?..it sounds v romantic…I’ve never been to Italy although I’m quarter Italian…I really must get there someday.
x