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Xeloda / Capecitabine - Your Top Tips, please?

Member

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

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
Community Champion

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

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

Member

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

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
Community Champion

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

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

Member

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

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

Member

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

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

Member

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

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 . 

Member

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

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

Community Champion

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

London xx

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

Mx
Community Champion

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

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
Member

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

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.  

Member

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

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

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

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

Member

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

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?
Community Champion

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

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

Member

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

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

Highlighted
Member

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

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
Member

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

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
Member

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

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! Smiley LOL

 

Hugs to all. Barton.x

Member

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

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