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Xeloda and the 'week off!'
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!
Hi Nicky,
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.
Best wishes,
Julie
x
Thanks Julie,
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!!)
Hope the SE's don't get too problematic x
Hi Nicky,
I'll let you know about the lips tomorrow!
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.
Julie
x
Hi all
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.
Jan
Hi nicky,
Sorry you are having a tough time:-(
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.
Take care xx
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...
Reminder - there are other Xeloda threads
http://share.breastcancercare.org.uk/forum/viewtopic.php?f=25&t=32608&p=563166#p563166
and I'll add this one to that list.
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'.
Thanks again x
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
Hi Xeloda queen and princesses:
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!!
xx
Hello all! Hope everyone is feeling well today.
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.
Best wishes to all,
Julie x
Hi
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!
Best wishes to everyone
Sue xx
Hi Sue -- good luck with the Xeloda, and have fun in Blackpool! xx
Hi Xeloda buddies
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
Hi everyone,
Nicky, re chemo breaks: I am having an extra week off in October so that my son and I can go to Oman for his half term to be with the rest of the family (I normally live in Oman too, just here for treatment, so my husband and daughters are out there on their own at the moment). I'm really looking forward to it. Your romantic trip to Italy sounds fantastic though, and as Belinda says, you can use the EEC health card to cover any possibility of medical problems whilst you are there.
My update is pretty mixed. Xeloda-wise all is going well - I've been alternating using Cavalon cream and Flexitol on my feet and they are way better than when I last posted, and the nausea from last week has passed too. Not sure if I've said on here already, but I had an op 5 weeks ago to pin my hip and thigh, and my recovery from that is going well too. The bad news is that I had a pain in my (good) leg on Thursday which turns out to be a "substantial" DVT, so I've just come home after two nights in hospital with a bag full of syringes to self inject each night. I was worried if that might affect flying in October, but the doctor said with the injections I'll be the safest person on the plane!
Looking forward to hear how everyone else is getting on,
Julie x
Hi all
Nicky, yes, do have your flu jab - I have one every year with no problems from the Xeloda or any other treatment, and you REALLY don't want flu!
Wish there was such an easy answer to the travel insurance problem for us - no one would provide cover for me to travel to the States earlier this year - although my bone & liver mets have been stable for some time, I have had a lot of mets, and am on more than one treatment; also have tablet-controlled diabetes and some side effects from that. Really annoying that, on paper, I look very poorly and high risk, but in person I actually live a fairly "normal" life. The good news is, as you're planning a trip to an EU country, your EHIC will cover some health care, but you need to be aware that it won't pay for a flight home if you need hospitalisation or become seriously ill. When I rang EVERY travel insurance company on the Macmillan list in April, most told me that Xeloda should not be defined as "chemotherapy" for medical screening/insurance purposes, as it's tablets, rather than an IV one. So you might be able to say "tablets" to a firm like MIA Online, and see what they come up with - their cover is based on "topping up" the EHIC cover, which is why they're a lot cheaper than most other insurers.
On the issue of having a Xeloda-break for your lovely second honeymoon - this will really depend on how you feel as it gets closer to your travel dates. If you feel OK, just take the little peachy pills with you, and gobble them down as usual (it does get easier to do this in public - no one actually notices!). If you're starting to have vile side effects, do speak to your onc or chemo hotline people about maybe having an extra week off the tablets.
And geewhiz - hope all goes well getting rid of the pesky DVT, and have a lovely time with your family in Oman next month!
xx
Hi all,
Nicky, hope you'll get something sorted for your insurance and have a good holiday in Oct.
Second cycle going OK so far. Just rang about Tumour Marker. And despite all the good signs of things are improving (lumps smaller, no more pain), my Tumour Marker has taken a huge leap from 53 to 73!! Well, this is the first time my Tumour Marker has given me a misleading feedback. So I don't really know what's going on now.
Will keep praying until I see my onc at my second review... here is me thinking I might get a dose reduction... but who knows now...
xx
Hi m1yu
I still haven't started my second dose, as my bloods have actually got worse not better. I believe them this time as when they removed the cannula after my zometa the blood wouldn't clot! by the time I'd reached the car it was running down my arm. It's OK now, but I have a very large puffy bruise forming.
I have to see the oncologist this time (last week the chemo nurse deferred for a week) to see what he wants to do, the chemo nurse said he'd not experienced blood problems with xeloda and if on rare ocassions there have been, they are usually OK after a week off. But his idea of an emergency appointment is not mine, his secretary said he has none tommorow and wouldn't give me one, so it looks like it'll be back to phoning again and again!,
I wouldn't be too worried by the tumour markers, my oncologist doesn't use them, I would use the reducing lumps as a more likely indicator.
Hope you carry on OK with the xeloda, I am in a bit of a limbo at the moment, as I am technically not having any treatment! - holiday plans will have to wait!
Hi Nicky,
Sorry to hear of your problems with your blood, and with getting help from your oncologist. Being in limbo like that is not pleasant - we all want to feel that the best is being done for us. Hopefully this is a blip that can be resolved, and then you can get back to organising your Italian treat.
I'm coming to the end of my week off - I'm off to the hospital for my 3 weekly Abraxane and then will start round 4 of Xeloda on Thursday. I'm feeling fine at the moment, bar the limping from my DVT in the left leg and op on the right - definitely a lady who lurches at the moment! This third cycle has produced more side effects than the first two, so I am a little apprehensive about the next one - will things get worse? Just have to try and see, and I'll be using the foot cream right from the off this time to try to prevent my feet from getting too bad. I will mention the recurrent nausea to the oncologist too, as I hadn't had any problems like that before. I'm also going to try to remember to ask him about flu jabs - thanks Belinda and Marif for your info on that. I actually had swine flu last year, so not sure if that would give me immunity?
m1yu, my oncologist also doesn't pay a lot of attention to tumour markers - he gets the results, but doesn't seem to base his decisions around them at all, and has said to me that they can be misleading.
Sue - how are you getting on? Hope all is going well.
Love to all,
Julie x
Hi All
First week nearly done! I have felt tired but I didnt sleep well at weekend in the BB. I've been catching up and resting a lot since comimg home. I've had some diarrhea but the loperamide sorts that out. I am taking Lapatinib (Tykerb) as well so it's just a case of learning whats doing what. The Lapatinib makes me feel a bit sickly but all in all I've very pleased with my first week.
I'm keeping my feet cool, I've got Fexitol and Udderly, I'll get some Cavalon. One bit of my lip on the outside is a bit red/sore putting stuff on it and using mouthwashes.
I've booked for a flu jab on the 5th Oct, I'll see my onc in 2 weeks so I'll check with him about it.
My onc doesnt pay much attention to tumour markers, on me that is.
Love this thread its so useful.
Love
Sue
Hi Sue - so glad to hear your first week has gone pretty well -- roll on the next many years! Hope to see you soon, when you feel like some "cupcake time". xx
I was given this thread by some of the other ladies with bone mets. I just wanted to say reading your comments has made me feel so much better. I'm on my 5th cycle of cap and have very sore feet but hands aren't too bad. Had most of the side effects at one time or another but thankfully not all together.
it's strange but my right foot seems to be worse too, I wonder if its due to the cancer being in the right leg? Probably not, I should stop trying to be a doctor. It's really inspiring to hear that some people have been on the drug for a long time and still doing well.
Check up next week so fingers crossed.
Thanks again and I look forward to chatting to you all again soon and hearing your news.
xx
Hi donns58 and all fellow Xel users
Hope youre doing well today, I'm still a newbie with Xeloda.I bought some Cavilon cream today at the pharmacy in Tesco, it was expensive about £14 but it is a lovely texture and smell. They said I could probably get it on prescription.
Good luck everyone.
Sue xx
Hello everyone, and welcome donns58.
I had my 4th Abraxane yesterday and started my 4th Capecitabine cycle today. I spoke to both the chemo nurse and my oncologist about having had more severe side effects from the xeloda on the third cycle than the previous two, and it seems likely that in my case it was because I had the enforced 2 week extra break between 2 and 3 whilst I went off to have my hip and thigh operated on. Apparently there is evidence that after a break like that you can experience more severe side effects, so fingers crossed that this time it will be easier again. Mind you, I took my first tablets after breakfast this morning and already have scarlet soles on both feet
I am convinced this regime of Abraxane and Xeloda is working for me as I feel so well at the moment, and my bone pain in my torso has definitely diminished, down to one rib I think, whch hopefully I shall have zapped with some radiotherapy at the beginning of October.
My hair has now almost completely gone thanks to the lovely Abraxane, so had great fun at the hairdressers today. Walked in with just my very sparse no 2 cut, then had four haircuts - tidy up of my few remaining hairs plus one for each wig! I had two wigs for my first chemo back in 2008: I was lucky to get a voucher for one and decided to treat myself to another. However, times move on and I'm used to short hair now, so I've bought a new one for this time (plus the old ones are just sooo 2008!). Anyway, had all three customised today, and am so happy with the results. Am spoiled for choice of what to wear now, especially as I've got 2 new funky hats from Suburban Turban too plus a range of buffs - and I'm still brave enough to go out bareheaded too.
Great to hear everyone's updates here - hope we all continue to post and support each other through this. Anyway must go now and grab the cavilon cream!
Love to all,
Julie x
Hi SueCheshire
Thanks for asking if I feel better today. The truth is I feel much better knowing that there are people out there that are going through the same issues. I did mange to sleep a bit last night so that helps too.
I haven't heard of Cavilon cream but will investigate at chemist tomorrow, my feet are moving from red to purple now so I'll give it a go. Tried some winter shoes on today the shop assistant looked horrified when I put the sock on. I think she thought it was some foot disease. I did try to explain but she didn't look convinced.
Will get the cream tomorrow and report back, thanks for the tip. xx