68.5K members
1.2M posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Xeloda / Capecitabine - Your Top Tips, please?

ginette65
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

hi Bev

i`m 5`7 and 11 and a half stone.so maybe its ok

angelina

Bevlaar
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

I think the side effects are cumulative katherine from what I've heard. But if they get unmanageable or you feel too unwell your Onc can reduce the dosage so that youre able to cope more.
I feel really miserable on my unwell days and its nothing you can put your finger on....just dont feel like doing anything or going anywhere. ..its the tiredness. But at least I'm not in any pain so i feel i have to put up with it for now.
I take oramorph for breathlessness as well. Im hoping like you that the side effects won't get too bad.
Keep positive....focus on the good days!
Love bev xxx
Katherine2701
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Barton and Bevlaar, thank you so much! You haven't upset me in anyway. I just wanted to make sure I'm not giving in too much but some days I do feel rotten. I also take morphine for the pain and the Ondansetron and Omeprazole and I'm not sure what makes me feel rotten the most to be honest!

Do you think your body gets used to it and the side effects lessen in the end? Just wondering (and hoping!)... Anyway, thanks for responding again. You do all make me feel better!
Bevlaar
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Angelina please dont worry...your Onc has prescribed the dosage suutable for you. Do you mind me asking what your height and weight is because the dosage is usually bsded on that.  Im 5'4 and 10st 5. I dont takd anything else either with the Cape. 

love bev xxx

ginette65
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

now i am worried! i have to take 2000 in the morning and 2500 in the evening. 4500 a day. that seems a lot more than any of you.not having anything alongside . plus i am 68!

angelina

Bevlaar
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

hi lovely katherine! Don't be so hard on yourself. It is a doable chemo but is still chemo. Im on 3300mg a day i.e. 1650 morning and night and I'm like barton. I work 2 days a week but theyre great there and have said if i feel tired around 3pm to go home. Thats the time it sometimes starts taking its toll on me!
I very often have to go to bed around 8pm on those nights. Its the fatigue that i hate.
I just feel like i get up, do a few chores in the morning, rest in the afternoons...then bed! But i get good days as well and try and make the most of those.
Listen to your body love and rest when you need to...you'll feel all the better for it believe me!
Tell your Onc your concerns.
Im sure you'll do ok on it once things settle down.
Love and hugz....bev xxxx
Barton
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Katherine, you are STILL being too hard on yourself! You are NOT a flop! I didn't want to make you feel like that - I was just trying to illustrate how different we all are. I'm so sorry if I upset you! Nicky is right - Capecitabine IS still chemo, and in effect we are being slowly (as opposed to quickly with IV chemo!) poisoned! Hopefully it is a poison which is saving us! Going overboard with exclamation marks today! Please be gentle on yourself. Best wishes to all the Cap.gang. Barton.x

Katherine2701
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks Nicky. It is quality of life that I'm thinking about. First two sessions have been do-able but this third one has been awful. It is all cumulative I know which makes me dread the next ones. My hands and feet are getting worse and I definitely couldn't work at present. I'm really hoping for good news so that I can have a reduction to get as you rightly say quality of life or ........ Well we all know what the alternative is!
nicky08
Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Katherine, you're definitely not a wimp. I think because Capecitabine is seen as an 'easy/easier' chemo we do all forget it IS still chemo, just because you don't loose your hair etc it still takes its toll and you have come so far, well done. I definitely couldn't have worked when I started Capecitabine last year and had to leave my new job. I felt better this year and thought I could go to work, but who would employ me and on the days I felt rough I couldn't have let people down if I didn't turn up for work. And the number of hospital appointments don't bear thinking about!
The dosage is based on a height weight ratio so that's why we can all be on different doses but a dose reduction isn't unusual I came down to an 80% dose quite early on and got good results still, plus it made it more tolerable. I also had extra weeks off when the hand foot problem became too much. Although not in pain as such the extra time off helped with the healing process which meant the next dose wasn't too bad on the side effects. Good luck with you appointment and results and do talk to your onc about quality of life, a scary phrase, but one that is important.
Nicky x

Katherine2701
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thank you Kaye and Barton for your responses. It really helps get some perspective. Barton, I take my hat off to you! Still working? Now that makes me feel a real flop! And Kaye, thank you because that does give me hope. If I get a good result I am going to ask for mine to be reduced as I spend days in bed and to be honest it's not good enough, I've tried to pull myself together but when I feel ill with the SEs I just can't get over it. Anyway, it's true, everyone's different but I love the advice I receive on here. This place is a real lifeline. Thanks ladies!
Barton
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Katherine, you are not a wimp! Whatever dose you are on! It's how it affects you, and as Kaye says, each of us is different.  And no, it's not nosey to ask what dose we are all on. I am on 2000mg twice daily and have been from the start (just started 5th cycle Thursday evening). I have been a lot luckier than some people re.side effects, but I have found the effects are cumulative (I was warned by the Onc.at the start, but I'm afraid I kind of ignored that comment). I am currently still working but for only 2 and a half days a week (all day Tuesday and Wednesday, and Friday mornings. I find the 2 full days quite a strain, and end up going to bed really early, but at the moment  I am sticking with it. Hope this information helps, but please don't think of yourself as a wimp.  I spent all last weekend crying as I was so tired, but everyone here was very suportive. Best wishes,Barton.x

 

 

 

 

bertie1
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Katherine I was on 1500 twice daily but after my 2nd cycle my hands and feet were so bad that the onc gave me an extra week off them.Started my 3rd cycle this week but on a reduced dose of 1300 twice daily as my onc said need to get a dose that is tolerable for me ,she was happy to reduce it because my markers had dropped from 190 to 39 and she will see how I am after this cycle.I don't think any of us think you are a wimp cos the side effects of Cape can be quite debilitating and effect each of us differently.
Love
Kaye xx
Katherine2701
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Can anyone tell me what doses of Cape they are on? I don't want to be nosey and if you'd rather not say that's fine it's just that I am having 1950mg morning and evening and sometimes the side effects feel quite debilitating for me and I sometimes spend the day in bed I feel so rough. When I hear about you ladies going to work and carrying on regardless I feel like a real wimp. The reason I'm asking about dosage is that I was actually thinking of asking my Onc, depending in results, whether I could have a slight reduction in dosage to make it a bit more do-able for me. But if I'm on the lowest dose already then that's unlikely to happen and it just means I'm a total wimp!

On another note following an earlier posting yes I get stomach cramps that feel like I may have diarrhoea but I don't.
Katherine2701
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Lovely to here that Nicky08. Glad it's doing well for you and it gives me so much hope! Thanks again. K
Barton
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Angelina, glad to hear you are feeling better today.  I haven't suffered from the stomach cramps, but I do get diarrohea - with not much warning! Good luck and few side effects to all the Cap.gang. Barton.x

 

ginette65
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

thanks for your replies,feel a bit better that its not rare.Bev, i do take them within 20 mins of eating and am drinking 2 litres of water a day.the chemo nurse spoke to my onc who advised me to take paracetomol and to try to put up with it as much as possible.if it gets unbearable then to stop the tablets, but today its much better!

no other symptoms yet but only on my 3rd day!

have a nice weekend everyone.

angelina

bertie1
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi all hope you're all doing ok on your Cape,I too find I get stomach cramps with it but no diarrhoea thankfully The worst side effect for me has been my hands and feet,my hands look like they have been dipped in dye.
My eyes are also itchy don't know if that is down to the tablet or not .Hope you all have a good weekend.
Love Kaye xx
Hilsy
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi all im coming to the end of my second cycle. In my case the first week my tummy gets a little crampy and wants to go toilet NOW but no diarrhea and I'll have the odd day of some nausea and then the body seems to just get used to it again after a few days it's weird how a differently everyone reacts to it! I think my body is like wtf is this? Then oh ok, it ain't too bad. It may change next cycle but it's very tolerable for me I just hope to God it's working. Hope you gals have it work too with as minimal se's as poss xxx
nicky08
Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi
I used to generally feel grotty after my tablets, especially the morning ones and, at the beginning of my 18 months on Cape did feel pain on and off in my liver. I was convinced it was bad pain but maybe it was 'good' pain as my liver mets shrunk considerably on Cape - and this was without having any Herceptin treatment which I should have been having but couldn't due to a weak heart function. Hoping for all Cape ladies that it works well for you.
Nicky x

Bevlaar
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi angelina. Had the occasional stomach cramps but not regular pains. Think you need to mention that to Onc. Are you taking them within half hour of eating? And with plenty of water?
Love bev xxx
Katherine2701
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

That's exactly what I have Angelina. I am sure this is to do with the chemo as it starts working. I've just got used to it now. Hope that helps to make you feel you're not alone and that it's nothing suspicious. I do think you should follow Bevlar's advice though just in case.
ginette65
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

hi, started the cap on tuesday,since the first lot of pills am getting bad pains in my abdomen,they start  about 2

hours after i take them and last about an hour, anyone else had this?

angelina

Barton
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello, Pam!  Thanks for this information, and the original comment! I found it very helpful in trying to judge what would happen and when. Not that I had much luck, mind you, with the diarrohea! Never predictable at all. Hate getting caught short somewhere! Best wishes to all Cap.gang. Picked up my 5th cycle of tablets this morning so will be starting those this evening. Barton.x

pam01
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

I think Barton may be referring to what I said!....My experience is that my dry cracked hands and feet continue to improve the first few days of the next cycle(and symptoms continue to build up the first few days off tablets). However I think different symptoms are worse at different times....for example nausea may be worse as you start the cycle and people have commented about diarrhoea when the cycle stops....Im not sure when blood levels are at their highest..or indeed when the drug is most effective against the tumour cells.....I would guess it might be related to where the tumour is.......may be slower in being effective in bone.....but I dont know!

Hilsy
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks Barton that's so useful, hope
You're finding it ok and that does make total sense x
Barton
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello, Hilsy.  Regarding the Cap.working on week off - I believe (someone on here said so, I think) it keeps working on your week off, then on the first week of the next cycle you get some relief from the symptoms until the effects start to build up again. Don't quote me, thoughSmiley LOL. I am duevto get my 5th cycle of tablets tomorrow, as lomng as my blood test results are OK.Barton.x. Ps.good luck to everyone in the Cap.gang.

Hilsy
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi all my skin still in tact but skin coming away under nails a bit nearly end of round two. Random question, anyone heard of the Cape still does its thing on the rest week off? Xxx
mrsblue
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi folks - waves hand and wiggles slightly blistered fingers -

Just popping in to this thread to thank whoever mentioned Eucerin foot cream.  I bought some when on holiday in Suffolk, a local pharmacy had it on offer, I saved more than £2! In only a couple of days my flaky-looking heels have improved a lot.

I'm prescribed Diprobase by my oncs, but I like to have another cream around to use occasionally.  Now halfway through cycle 4 of my second time with cape - it worked well for me previously for 2 years!

bertie1
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi all hope you're all doing ok,just come back from onc appt and she has given me the third cycle but on a reduced dose as she doesn't want my hands and feet to get any worse.The good news is my markers have gone down again after 2nd cycle from 84 to 39 so the onc is not going to scan me until after6 the cycle as she feels the Cap is working.
Take care all
Love
Kaye
Hilsy
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks all and good luck for 16th katherine love and hugs xxx
Katherine2701
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks ladies for all your kind thoughts and prayers. Hugs to you all. Katherine
bertie1
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Good luck to Katherine and hilsy with your results on Cap and also to all you other brave ladies.Hoping to start my third cycle tomorrow as my hands and feet have heeled.
Love
Kaye xx
nicky08
Community Champion

Re: Xeloda / Capecitabine - Your Top Tips, please?

Good luck to both Katherine and Hilsy for your results, hope Capecitabine is working well for you both - and all the other ladies on it Smiley Happy

Nicky x

Katherine2701
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

I'll keep everything crossed for a reduction for you. Lots of hugs xxx
Hilsy
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi gals thanks and thanks especially katherine, so useful to know that the faster they grow the faster they can shrink etc! My question is basically coz they won't do anything with my brain met which is fast growing and only just come back 7 weeks after radiation (and total surgery to get it out) as I have lung and liver mets. If Cape show it's working they may do gamma or cyber and I'm only nearing the end of cycle 2 so i need the buggers to shrink! Lol. Love to you all and gentle shrinky hugs xxx
Barton
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello, Katherine - it's the waiting that gets you, isn't it? All good wishes and good thoughts for your scan results on 16th. Barton.x

Katherine2701
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Bevlar, had my scan, now waiting for my results with the Onc on 16th October. I am feeling desperate. No, it never gets better! K
Katherine2701
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Hilsy, I was told that I had an unusual and very aggressive chemo. We are not sure but think it may have shrunk already after 3 cycles of Cape but that's apparently because aggressive tumours grow quickly, can go down quickly but then come up very quickly again. My tumours went from nothing to numerous including largest in the liver at 13cms within 8 weeks of a clear scan so it is all very volatile. With regard to slow growing less aggressive tumours however I've been told by my old oncologist that they may take longer to go down but they stay down for longer. So really you are better off with a slow, slow reduction in size as that normally sticks rather than a quick reduction which may reduce quickly but then grows again quickly. I know it is worrying to have results where they don't show much reduction if any, but please don't be too down about it because it is no growth that is essential. The reduction will come in time I'm sure.
bertie1
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi Cap gang hope you're all doing okay,this cold of mine seems to be taking ages to clear up.
Barton hope you are feeling more positve today.The question of how long ot takes for Cap to work seems to vary from person to person.My onc seemed pleased with the response I've had as my tumour markers went down from 194 to 84 after 2 nd cycle and she thinks this is a good sign but she's not going to scan me till after 4 the cycle so fingers crossed that the mets are shrinking .
take care all
Kaye xxx
Barton
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hello Hilsy, sorry to hear you have a lot of other stuff to contend with - I know how absolutely draining that can be when you need to be concentrating on yourself. I can't help with your question, I'm afraid - I only knew it was working after I had had my CT scan mid-way through my third cycle, and I didn't get the results until I saw my Onc.at the start of my 4th cycle. I do hope yours is good news, though! Good news that you are not experiencing any side effects - that's always a bonus! Barton.x

Barton
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Katherine and Bev,  yes, I too am having pain in my tumour site - stomach area as tumour in womb. I'm also choosing to believe it's the Cap.working! (feeling much more positive today!). Barton.x

Barton
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Katherine, thank you so much for your reply! Wow! I had no idea I brightened anyone up! I feel honoured! Anyway, I finally started feeling better yesterday afternoon after a mamoth sob-session on the phone with my sister. She talked an awful lot of sense and suggested I think about giving up work. It's not something I really want to do, but I see the sense in it as the stress at the moment is something I can do without. Unfortunately, too, there doesn't seem to be an end in sight as my employers seem to want to save money by not employing anyone else to help. It's not just me struggling there, either. We have had 3 people leave recently and this leaves the admin.people in deep do-do (can I say that here?) too! Thing is, if we all go off with stress they would really be stuck.  I know all businesses are in the same situation, so I feel for anyone else on here who is going through the same thing.  Thanks again, Katherine, and all the best to you and the rest of the Cap.gang. Barton.x

 

Bevlaar
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi hilsy...I'm just coming to the end of my 5th cycle and my 2nd scan is planned for 4th nov after 6th cycle. The first ct scan end of august showed no change at all from scan at dx in may but I'm hoping to see somethings shrunk in November.
Ive been told that Cape works slower over a longer period than the iv chemo. But it seems to work differently for different people.
Ive read on here that some ladies have had shrinkage after 6 cycles but for others its taken a year.
Its that awful waiting game though for results of each scan....it never gets better does it?
Hope we both see encouraging results 💖
Love and hugz...bev xxx
Hilsy
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Hi all Cape gang, I just wondered how long it took people to see or feel reduction in tumoyr size? They say 3 cycles but can it slow it before then or suddenly kick in? Not sure if anyone knows, just a stab in the dark. On a brighter note i myself am over half way through second cycle, no diarrhea or hand and foot problems. I'm tired but got a lot to contend with not down to the chemo....such a doable chemo for most xxx
Bevlaar
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Yes ive just developed a pain just now and again under right breast at base of right lung where tumour is. Not really painful just discomfort. Hope youre right about the Cape working there!! ☺ xxx
Katherine2701
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

I have lots of tumours in my liver including the largest at 13cms. When I'm on this Cape I get lots of pain around the liver area. Does or has anyone had pain round their tumour sites on Cape? I'd like to think it is where the chemo is working rather than the tumours growing again!
Katherine2701
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

I felt exactly the same Bev. Cyber hugs to you. Kath xxx
Katherine2701
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Barton, I'm sorry you're feeling down. It can be so hard, we all know, to remain upbeat but can I just say thank you for all your contributions on here? I have rotten down days too and find coming on here makes me realise that others feel exactly the same and, as much as I wouldn't wish this on my worst enemy, the fact that others are feeling the same as me strengthens my resolve every day.

I guess what I'm trying to say is that I'm sorry you're feeling down but you brighten our days on here so often, please, please think of that and what you are adding to the world and be proud of yourself!
Barton
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Thanks, Bev. Bit better today, but still down. Hope eveyone else is OK. Barton.x

Bevlaar
Member

Re: Xeloda / Capecitabine - Your Top Tips, please?

Barton. .sorry youre having a down day. It happens to us all from time to time. I had one earlier this week when i heard about Lynda Bellingham on the news. It upset me for the rest of the day.
It just hits us hard at times doesnt it?
Hope you have a better day tomorrow.
Sending big hugz 💖 Bev xxxxxx