Xeloda / Capecitabine - Your Top Tips, please?

[Moijan]

Racer, havent heard from you either, how are things?

moijanxx

[Moijan]

Babsy, hows it goin?

Moijanxx

[george]

Hi London

Glad to hear your mouth and feet are getting better. It is all trial and error, isn't it? I tried so many things on my mouth and feet before I finally settled with things that worked for me. Easy for me to say, but I wouldn't worry about having a week off Cape. I am sure you will still have enough in your system.
Have a good weekend in the sunshine.


George x

[London1]

Thanks George, I have used gelclair too and it worked well at making sure I had no mouth sores and finally that and newly prescribed this week caphasol seem to have the lips getting better each day. In hindsight I'm pretty sure my lips touched the tablet the first time I took them. I was warned not to touch them and tip them from the foil to a cup as they are so caustic. I'll know next time to put a barrier lip balm on my lips first!!

I got some moisturising gel socks this morning from Amazon and finally I have no problem walking too! I only hope my liver mets dont decide to start regrowing on this additional week off. But I still feel fine! I always think in many ways I'm healthier and certainly fitter than a lot of people despite all!

Hope everyone has plans to enjoy the sunshine this weekend.

[george]

Hi London

I know it isn't what you wanted to hear, but I am sure the extra week will give everything a chance to calm down. When I had a sore mouth, the only thing that helped me was a treatment called Gelclair. I am not sure whether it works on the lips too; it is expensive, but I think you can get it on prescription. I had bad mouth ulcers and Gelclair cured them completely when everything else had failed. It is a very kind treatment so might be worth asking your team if it would be appropriate for you.
Yes, I am definitely intending to enjoy the sunshine when it arrives. Really enjoying the light evenings at the moment.
Have a good weekend all😊

George x

[Barton]

Hello London, glad to hear you will be getting a dose reduction - hopefully that should sort the sore mouth issues in future. However, apart from the mouthwash for the inside of your mouth, have you thought about a normal lip salve for your lips? I use an ordinary Boots one (not because of the Cape, but I have always had dry lips) and that works quite well. Or try ordinary Vaseline. It sounds like you need a temporary barrier of some kibd, with some moisturising properties.

Good luck and hugs. Barton.x

[London1]

Well they are going to delay the next set of tablets by a week with a probable dose reduction too so that my sore lips have time to heal. Sensible really but not quite the news I want to hear as mostly in every other way I feel perfectly fine (now). I haven't been sick at all and no big D either!

Any tips for using a mouth wash and getting your lips coated too? I have no sores in my mouth so I obviously did that okay but it is hard getting the stuff on the lips too! Unluckily the first time of taking the tablets I caught it on my bottom lip so I'm sure that's why I have had the problems! I use a spoon to dip my lips into mouthwash now which seems to help. My feet are a bit sore still but perfectly manageable now!

I Hope everyone is able to enjoy the forecasted warm weather this weekend! Sian

[george]

Thanks London and Barton. Feel I have a 6 week respite until next meeting with Onc and more TM results so will make the most of the time. Glad to hear you are so active London, it certainly helps to keep busy when we can. I am getting more active but, have to admit, I have enjoyed watching DVDs while I recuperate. On series 4 of Game of Thrones. Used to watch Mad Men during IV chemo.
Hope everyone enjoying the sunshine and Cape is treating you well

George x

[Barton]

Brilliant news, George! I'm so pleased for you! It's always lovely to read someones good news.

London - a dose reduction shouldn't make any difference to the effectiveness. I believe the Americans have done a study which shows that a lower dose is just as effective. I think Oncs generally start people on the highest dose possible to see what they can tolerate. It seems to me you are on too high a dose currently, so your hospital team could very well give you a reduction. By the way, the effects are cumulative, so I'm not surprised you are feeling worse on your week off - you will probably find that the week off catches up with you during the first week of your next cycle and you feel better then- that's what generally happens to me, anyway. Good luck.

Hugs. Barton.x

[Stillhere]

Hallo Sian, well congratulations on your new horse! Your news has brought me out of the woodwork, having a mini break from cancer stuff and have just spent a glorious 5 days in Venice, so beautiful... I didn't feel bad on my week off Cape but my hospital did an unusual regime of one week on/ one off. Hopefully they will jig the dose so you feel ok on it, I got 2 1/2 years out of it and felt better than I do on my current trial. Only thing I noticed....nearly 18 months on,my feet still got red and sore after walking in Venice! 😕 better to be in the saddle!!😀 I'd love to hear about your new ned, PM me if you have time x

[London1]

I like your good news story George! My liver mets are really quite big now but I still hope that this chemo will be the one to shrink them properly! I've never had any symptoms from the liver and bone mets and have only ever felt unwell on treatment! I really still lead an active life when I can and this forced sedentary life is tricky! Lucky I work for myself and can do as much or as little as I need to keep me sane!

[London1]

Thanks Nicky, I really wasn't expecting to feel worse on my week off! My plan was to go and ride my new horse on the weeks off, but he is not here yet luckily and hopefully like you with a reduced dose things will settle down soon and it will be the 'doable' chemo I was hoping it was going to be. As far as I know the form I signed said I have only got 8 cycles planned. Sian

[george]

Hi London, just want to echo what Nicky said. I started Cape last August and I was on the maximum dose until Christmas. I suffered with big D during my week off, but put up with it as I was anxious about reducing the dose. Finally, I succumbed and asked for a lower dose and regretted I had not done so sooner. No more big D. Also, the reduced dose was just as effective as TMs continued to fall.
Back to today, saw my oncologist who had the histology report following my operation -couldn't believe the news - there was no sign of cancer in the liver, only scar tissue. In July, 3 lesions had been detected, the biggest one being 1.2 cm so Cape had been very effective for me. Seeing Onc again in 6 weeks to see if Tamoxifen keeping bones stable. If not, will probably be back on chemo so fingers crossed.
Hello to all Cape Crusaders and hope treatment is being kind to you.

George x

[george]

Hi racer

Good to read your uodate but sorry you are suffering with nausea. I do hope your oncologist had some positive news for you last Thursday. Your son sounds such a considerate young man, you must be very proud of him. Also, hope you are having some stable days without too many side effects. Keep us posted when you can x

[nicky08]

Hi Sian/London1

I had a dose reduction immediately when I started Capecitabine back in 2013. I continued to have stability in my bone mets for the 18 months I was on it and also shrinkage in my liver mets in that time. After 18 months a scan showed slight progression in the liver mets which is why I moved to a different treatment. 

It's all down to a balance between not suffering too many side effects and getting results from the dose you are on so tweaking it is fairly normal. In fact when I started it my oncologist said that you are usually started at the maximum dose to see how you tolerate it but most of her patients moved down to a reduced dose and this was almost always the case in her experience.

Enjoy the week off although sometimes you can feel a bit worse, as other ladies have reported.  I found it took me a few cycles of Capecitabine for my body to adjust to this new treatment regime so didnt feel great however after that I felt pretty good all the time I was on it.

Nicky x

[London1]

I'm now in my week off after the first round of capecitabine. My onc is away this week so I am having a nurse assessment before it all starts again. But as my feet are still sore and my lips are really sore and swollen too they say I'll have a dose reduction straightaway and possibly delay the next lot too. I need a bit of reassurance that a reduced dose so quickly will still work. I haven't been sick and no mouth sores and have mostly felt fine so on balance I feel I've tolerated it okay but the nursing team seem to talk as if I'm very fragile which I don't think I am. Is this normal ?

And here is one for stillhere! Crazily I've bought myself a horse! Sian

[Moijan]

Well done Racer, yes Cape used to make me very sick in the beginning....hope tomorrow is a better dayxx

[Barton]

Lovely hear from you again, racer! Sorry to read that the nausea is still troubling you. Enjoy the good days, and take it easy on the others. That was very thoughtful of your son - shame you weren't up to it, but I expect he was just glad to do somethong for you.

Hugs, and best wishes. Barton.x

[Barton]

Oh, London, poor you! I know that feeling (although not recently, luckily!) - the feeling as if you are walking on burning coals mixed with ground glass! Really nasty. Plenty of cream is the answer, as others have already said. I used to use Vaseline, with cotton socks on, but you have to keep your feet up as much as possible as you tend to slide around in your slippers otherwise! I now use Nivea Express Moisturiser instead as it soaks in nicely. However, while your feet are still so tender you will need to keep off them as much as possible. Then take it gently for a while. Hopefully it is a side effect that you won't get again.

Hugs. Barton.x

[Babsy]

I take the mushrooms as capsules so no taste. Babsy xx  Racer, they say having a fighting spirit helps prolong life and you have buckets of it, so all the very best xx have you checked out the website www.canceractive.com? Might be worth a look . 

[racer]

Hi everyone thank you for your kind words and support. Not posted on here as I seem to have a rough day when I am being sick and having to go to bed. Then have a couple of ok days.
It was my son's Birthday yesterday and was going t go out for tea but my son decided to have a take away in case I was unwell . I was unwell and could not eat the food. I felt guilty about it.
I am trying not to give in as I want to go to bed when I am unwell. I think it is the cape making me feel sick and need to keep on top of anti sickness meds.
I see the Oncologist on Thursday I just hope he does not take me off the Cape because I feel it is doing something even if it just slows things down. They had said it would not change things with my liver but I feel hopeful with the things people have said on this thread. Definitely having a positive mind and setting myself targets such as my Daughter's Prom in June.
II will try and post when I can to let you all know how I am going on .
Hope everyone is ok and thank you to listening to me. This keeps me going.
Big hugs xxxxx

[Moijan]

London xx

Good to go for reg walks, just take it steady till you know how Cape will affect you xx

Mx

[Moijan]

Hi Babsy

There was a virus going the rounds, sore nose, runny nose, cough etc... I had it and my immunity is up xx

Am really interested in the mushroomsxx do they taste ok?
Mx

[Babsy]

Sorry Moijan, havent been on for a while. Musherooms still having their effect. Had blood test today so will be interested in results as I've managed to pick up some kind of nasty virus. Started last Wednesday and I'm convinced I picked it up after oxygen therapy, perhaps the mask hadn't been properly cleaned. Haven't needed a blood transfusion either and my haemoglobin levels were low at my last test. Fingers crossed.  

[London1]

Thanks! We are getting another dog soon so I need to get this sorted! Sianx

[Moijan]

Well done for going for a walk. Why not soak your feet in warm salt water for a while, then massage in some cream  - udderley smooth or anything mild, then put them up for the evening...if they arent red...they will surely settle downx

hugs, Mojanxx

[London1]

Just over a week on my first cycle and I thought I was doing well, a bit more tired than usual but okay. I went for my normal walk in the park today and my feet are now really (really) sore. Came from
Nowhere! Any suggestions as to anything that can be done. The skin is smooth, soft and normal colour. Dreading the thought that the only treatment will be a dose reduction next time round. Any thoughts?

[Moijan]

Hello friends,

have nothing sensible to say today, and as you know im a bit of a prankster! So reining myself in xxxx

have a great weekendxx

Mx

[Barton]

Hello Helen, lovely to hear from you! Also, wonderful news that you are doing so well on Cape, especially after those dire warnings from your medical "professionals"!

Glad it went well, George!

I have hospital this afternoon to pick up my next lot of pills (as long as blood ok). No clinic this time but see Onc again in 3 weeks for following cycle. I should, hopefully, have a CT scan soon (promised for after this next cycle) to see how the Christmas break has affected things.

Hugs and best wishes to all.

Barton.x

[HelenAquarius]

Hi all cape crusaders.. I'm lurking a bit Barton so thought I'd say Hello!

George - ops are tough and you sound like you are really handling things well, rest rest rest!

Racer - crikey you've had a time of it. Last year when I was dx with mets I was really ill, we decided to get married and the onc told me to bring it forward and my gp told me stay on the oramorph after I had bad leg pain telling me I was riddled with cancer.
A year on, they are all amazed at how well I am. I am sooo much better, currently on Cape - my 3rd chemo and doing good. I wanted to say his because being in the right mental place is so important.. believing you're up for the fight and getting back on the Cape is a mental victory and this can only have a positive impact on your health. Wishing you love and continued determination! Helen x

[george]

Thanks, Barton. It wasn't too painful. Good to get staples out. Just getting anxious as no follow up appointments have come through as yet. Will call next week if I don't hear anything. Hope you are doing well.

Hi to all other Cape Crusaders

George x

[Barton]

Hello George, hope the staple removal went OK? Glad your pain is manageable, after what must have been a major op, by just taking Paracetomol!

Racer - hope you are doing OK. Just wanted to let you know we are all thinking of you. Post when you can, but don't worry if it's too much at the moment.

Hope everyone else (lurkers and all!) are doing OK. Hope that doesn't sound pushy - don't mean it to! If you can't or don't want to post, please don't think you have to. I just want you to know that we all think of the quiet ones too!

Hugs to all. Barton.x

[george]

Hi Moijan

Not too painful at the moment, just take a couple of paracetamol now and again. Mind you, I am not doing much. I didn't get to see a physio-would have been helpful. Hope your treatment is going well

George x

[Barton]

Hello George, doing more or less ok, thanks. Have made a decision about work, but don't really want to say yet. Will let you know as soon as I can.

Hugs and good luck for tomorrow.

Hugs. Barton.x

[Moijan]

Oh George...I quite agree with Barton....and as you know I had a hepatectomy, so my scar is very wide. One thing tho, do take it easy and do as the physio recommends...I think I may have a small hernia on my scar line....is it all very painful? I recall it being quite painful myself.

take care,

Moijanx

[george]

Thanks, Barton. Will let you know how I get on with staple removal tomorrow. Only 28 of them 😉How are you? How is work going?
Hope everyone else doing well. At least we should have some sunshine this weekend.

George x

[Barton]

Great to hear from you, george- I have been wondering how you are. I'm glad your op went well. Well done for resting! After something like that you really need to. Staples coming out shouldn't be too painful (says she who has never had them!).

Keep us up to date with how things are going.

Hugs. Barton.x

Ps - keep up the resting!

[george]

Hi Barton and everyone else,

I haven't been on this thread for a while so just been trying to catch up with all messages. Good news seems to be that Cape is working.
Racer, so pleased to hear that you are out of hospital, feeling more positive and are being so well looked after by your husband - you sound like quite a team. Sending lots of positive vibes.
I have been taking it easy after having a liver resection 2 weeks ago. All seems to be going well, but I do get tired very easily. Staples coming out tomorrow. Yikes!!
Hugs

George x

[Moijan]

And how are you too, Babsy?

magic mushrooms doing their thing?

hugs,

Moijanxx

[Babsy]

I agree, good to hear from you Racer, and I love your attitude. ❤

[Barton]

Oh racer, so good to hear from you! I had been wondering how you were! You sound really positive. So glad you are taking control of things - good for you! You and your husband sound like a good team. Yes, eat what you fancy, rest when you need to. Get out and about when you can.

Wishing you all the best. Hugs. Barton.x

Ps- never apologise for "rambling", we are glad to hear from you.

[Moijan]

Hi Racer,
Great to hear how well things are going! And actually , you sound as if you are in charge of your life, which is just what we should all be doing.... deciding what we want and going for it...... well done xxx

Usually a blood infusion will give you a bit more energy xx
Have pmd ux

moijanxx

[racer]

Hi everyone hope you are all having a good weekend. Just thought I would update you all . I saw Oncologistbon Thursday and my platelets were 48 . However HB dropped below 8 so had a blood transfusion on Friday which will lower platelets.
My Hubby was impressed with me as I was quite assertive regarding the cape . So had a week off and restarted cape yesterday . The good news is that the Oncologist does not need to see me for two weeks.
I have had lots of visits from professionals and one of them said I looked better than she thought I would be. Told them all that I am fighting this and not going to give in. I am having the odd rough day but trying to go out . I am struggling with my appetite and having to say I need smaller meals as I feel it is too much. Just resting when I feel tired .
I feel positive at the moment as I have read some threads which has given me hope. Trying to drink plenty of water and my Hubby sorts my meds out so we are making a good team . Sorry I am rambling on lol .
Take care everyone and big hugs xxx

[London1]

Thanks Nicky. Always good to get feedback from people who have had it. So far it actually seems more in your face as a treatment than the 2 IV chemos I've had before. But once I get used to it it will be a comfort to know I'm unlikely to lose my hair again. Sianx

[nicky08]

Hi Sian, I agree with Barton. I was on Cape for 18 months in 2013 and had to juggle a few times with the timing of taking the tablets. A small snack eg piece of toast in the morning I'm sure would be fine. You don't have to rigidly take them 12 hours apart either, just make sure you leave at least 8 hours between the doses. If I was out for a meal in the evening (when it was difficult to control timings) I would wait until I had eaten some or all of the meal and then take the tablets, this might have been some 2 hours or so later than usual but as long as I left enough time between that dose and the morning one it never caused a problem. Equally some mornings, especially at the weekend, I didn't want to get up early to have that dose so would delay it an hour or so until I was ready! Make it work for you and then they won't govern your day to day routine.

Nicky x

[London1]

Phew! Thanks Barton!

[Barton]

Hello Sian, in answer to your query, I would say yes, that should be possible. I have done it myself occasionally. It's not something I would do regularly, but I am under the impression that taking the pills at regular 12 hour intervals is important. I know you don't need much in your stomach to take the pills with - I think it is so your digestion gets going and the pills don't just sit and irritate the stomach lining.

Well done for starting Cape.

Hugs. Barton.x

[London1]

I started my first cycle of capecitabine today. So far so good. In normal circumstances while I'm at home I can see it will be straightforward to have the tablets at the same time each day, something the onc. nurse stressed I should do. But I'm hoping to still be able to go on trips where keeping to the same times may be difficult. Is it possible say to have the tablets after having a bit of food but then have the proper meal afterwards? I just want to give myself the best chance of being okay on it. Thanks all! Sian

[Babsy]

Hi Moijan, the name of the service is Cancer Options, consultancy, research and Coaching. 

[Barton]

Thanks, Moijan - it does tend to get a little confusing with separate threads on the same subject! I never know which one to reply to!

Hello Angela, glad you have found us, thanks to Moijan! Congratulations on completion of your 4th cycle of Cape. Sorry you are getting nausea, and having to take anti-sickness pills. That must be a real nuisance. Sorry also that you are coughing and wheezing - hopefully your scan and results can put your mind at rest. It's a worrying time though - we all know that one! I feel for you. Please do keep in touch and let us all know how you get on.

Hugs. Barton.x