68496members
360353posts
cancel
Showing results for 
Search instead for 
Did you mean: 

Xeloda / Capecitabine - Your Top Tips, please?

Highlighted
Member

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

Gosh George - that is pretty heavy stuff to deal with. Hope all is well with you. I did wonder if any of the many ladies on here had been affected. Such an evil man- my friend has suggested that he castrated and have them sewn on again, then removed and so on and so on.  Marli x

Highlighted
Member

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

Thank you for that information George, it all helps to reassure me.

It is 3 months since I was told about my mets and that has really stressed me out. In the eight years since my first dx have never been stressed, just been able to accept everything that has been thrown at me but due to all sorts of complications this has been very upsetting and scary couldn't wait to get the chemo going.

Managed to get baking done then have had a good sleep.

Next job is to prep evening meal and try to do a little ironing.  Marli x

 

 

Highlighted
Member

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

Oh George - that's awful - I have been reading about his bizarre behaviour and experiments! A real crook. How he was allowed to get away with it for so long is totally beyond me.

 

I have had a lovely day crafting today - first time for absolutely ages. Hope everyone else has had a good day.

 

Hugs to all. Barton.x

Highlighted
Member

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

Hi Barton

Congratulations. Like me, you are now a lady of leisure. Work can be a wonderful distraction when you enjoy it but, if you don't, it can just increase stress levels. I do miss it at times, being part of a team, the banter, challenge, etc but I have managed to fill my time with other things that are satisfying in a different way. I am sure you have found lots of things to keep you occupied. 😊
Been a slightly odd weekend for me as I was under the 'care' of the surgeon who has been in the news; he was my consultant for almost 3 years and operated on me in 2008 when I was a private patient 😞

Hope all well. Looks like we might have a sunny bank holiday

George x
Highlighted
Member

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

Hi Marli,

I remember feeling overcome with fatigue during my first week on Cape. In retrospect, I suspect this was due to delayed shock ( had just discovered I had liver mets ) and being back on chemo. As Nicki says, your body does adjust and I found that, as long as I paced myself, fatigue wasn't really an issue as time went on.
Hope rock buns were tasty 😊

George x
Highlighted
Member

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

Thank you Nicky that is very reassuring. You are right about an infusion being more predictable. With the cape it is being drip fed over a period of time. I have had chemo twice before - 2009 ans 2014 and expected a few days of feeling unwell, although I never had sickness.

 

I have had 3 days of feeling rubbish. Today am only a little better but have made soup and intend to bake rock buns. Will also cook Sunday lunch so if I achieve that will be pleased with myself.

 

Hope everyone is feeling well.  Marli x.

Highlighted
Community Champion

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

Hi marli

One thing I did forget to mention in my post regarding what to expect from Cape was that it took me, well, my body a few cycles to adjust to the tablets. I think we forget that it is chemo, just because we dispense it ourselves doesn't mean it goes unnoticed by our bodies. To be honest in those first couple (3?) cycles I did think that IV chemo would be far better as the rough days all come together soon after the infusion and you get to know the pattern of SEs so can lead your life around them. I think once my body adjusted, and I had a dose reduction, it did get a lot better so don't believe that it will be like this all the time. Your body has suddenly started having chemo so it's no wonder it's complaining a bit! Hope that the fatigue and nausea subside, if the anti emetics don't give  much relief try a different type next time, sometimes you have to find the one right for you.

Hi racer, sounds like the onc you saw is more on your case than the previous one. Hope you have managed to get out a bit over the weekend, even if the weather has been trying to stop us! Look after yourself.

Hi to all other Cape crusaders - Hooe it's all going well with you and you're getting good results from the peachy pills.

Nicky x

 

Highlighted
Member

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

You're no wuss, marli! Don't ever think that. Any chemo has side effects - just because you are suffering after 3 days does not mean you are a wuss - it just means that it affects you differently to other people.

 

I can't really help, except to say rest as much as possible and keep taking the meds (hopefully your hospital issued you with antiemetics?).

 

Wishing you all the best. Hugs. Barton.x

Highlighted
Member

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

Thank you George for your reply. Good to hear that you are enjoying your break.

 

No major problem at the moment after 3 days except for fatigue and a feeling of nausea. . Is this fairly normal so early in treatment? Makes me sound a bit of a wuss.  Marli x

Highlighted
Member

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

Hello George, so glad to hear you are OK, and thoroughly enjoying your Cape break! Well deserved. I do hope you have a wonderful time in Valencia! You lucky thing (am very slightly jealous!). Have a lovely long weekend.

 

I'm OK, thanks, George. I bit the bullet, and resigned from work on 12th April. I had planned to resign on Tuesday 18th, but had forgotten I would be off that week. I took my resignation letter in with me on the Wednesday, but had a bit of a meltdown at work in the morning - mainly due to sheer exhaustion (one of my se's causing worry and hence loss of sleep, etc) (an se from my mets, not from Cape, I hasten to add), and was offered immediate termination of employment without having to work my notice. My resignation letter had stated that I was resigning for health reasons. So you are now speaking to a lady of leisure! I have to say, I couldn't have done it without PIP, and a fairly good pension from a previous employment. I realise how lucky I am.

 

Weekend plan is for some crafting, as it's a friends 50th birthday next Sunday.

 

Hugs and best wishes. Barton.x

Highlighted
Member

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

Hi Marli

I won't bore you by echoing what others have said, but did want to say Cape is manageable. I found side effects more irritating than debilitating. Regarding the big D, my favourite topic when I was on Cape, I had it when I was on the higher dose but when my Onc reduced dose, I was fine. Still carry Loperamide with me, just in case!!.
Hope SEs okay for you.

George x
Highlighted
Member

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

Hi racer

Thanks for update. Good news that things seem to be improving for you and platelets are recovering. Sounds like you are having more good days than bad which is great news. I hope you manage to get a few days away as a change of scenery is often such a morale booster, makes us feel like normal.
Have a good bank holiday

George x
Highlighted
Member

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

Hi Barton

Thanks for thinking of me. I have been one of those 'lurkers' you mentioned in a previous post, sorry. Also, feeling in limbo a little as I am having a Cape break. However, I am feeling well and back to my 'normal' activities, just feel I have to pack everything in before treatment plan changes again, as it will. Only concern is neutrophiles are still low-1.1 at last blood test. Onc monitoring. Hope they recover as have booked long weekend in Valencia, leave on Thursday -Tuesday😊Having another blood test Weds so we will see.
Hope all well with you, Barton. Are you still giving up work? I don't blame you if you are. Hope you have some nice things planned for the long weekend.

George x
Highlighted
Member

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

Wondering where George is lately. I hope you are OK, George? Please let us know how you are getting on. Hope everything is well with you, but worrying slightly as you have been so quiet!

 

Hugs, and best wishes, Barton.x

Highlighted
Member

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

Hello racer, lovely to hwar from you again! Thanks for keeping us updated. I'm so glad you stuck to your guns (you go, girl!), and insisted on continuing with treatment. It is obviously having some effect, and, as Moijan says, this Onc is much more sympathetic to your wishes. Perhaps you could do as Moijan suggests, and try the two weeks on and one off next time - go with what you feel comfortable with, though.

 

Good luck, and keep in touch.

 

Hugs. Barton.x

Highlighted
Member

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

Hi Racer, very well done....what a star!

 

sounds as it this onc is a little more creative...yes when things improve try the two weeks on, one off, if its on the table....the sickness could be the cape...I used to get that, so antiemetic might be a good thing to try.

 

so pleased you are still positive....keep plodding on....its what we all do reallyxx

 

i had an mri yesterday..so am awaiting results...oh and another blasted wee infection too! But generally am just like you....feeling my way forward, listening to my body and travelling hopefully. Xx

 

Moijanxx

Highlighted
Member

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

Hi everyone just updating you . I saw Oncologist yesterday not the one I saw a couple of weeks ago. My platelets have gone up to 70 which they have not been for a while. Apparently they were 50 on last visit. The onc was quite happy to continue Cape for one week on and two weeks off. He said that I could take it for two weeks and week off. Also increase the strength which I was surprised. So I opted to continue Chemo tabs one week on and two weeks off. I said if platelets increase again then I would do what he suggested. He said that my HB had dropped so had blood transfusion . The Onc said the only thing he was concerned about my liver.
I have had one small vomit for a few days then a good day. I could not really go out because I was struggling with walking due to hip and had hurt my left shoulder. Got up today and feel quite well at the moment. We should be going away for a few days so hoping that I am able to .
I am glad that I did not agree to go off treatment. I know I am going to have rough weeks but I am going to continue to fight this.

Marla I am sorry you have had to join us. I find that everyone is supportive and that not everyone is the same on Cape. I just rest and have light snacks on days I cannot do much . The rest does help. When I feel down I go on this thread and there is a wealth of knowledge and suggestions which are very useful.

Have a good weekend everyone and hope the weather is ok .Love and cyber hugs to everyone xxc

Highlighted
Member

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

Thanks for updating us, marli. Sounds like you had a fairly successful meeting with your Onc - I like the way she thinks (mine started me on a high dose - 4000mg a day - for about 8-10 cycles, and then had to reduce it because I had severe breathlessness, to 3600mg per day).

 

I never suffered from nausea with any of my chemos, either, but I did (and do) get the big D, as George calls it!

 

Keep in touch.

 

Hugs. Barton.x

Highlighted
Member

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

Thank you Barton and Nicky for your replies, much appreciated.

 

 

After seeing the onc. I was a little happier although the CT did show a little change which could be explained apparently so need to see what the first one after first round is finished.

 

 Someone some time ago mentioned that higher dose tablets were quite big so I had been worried that the tablets  would be difficult to swallow them. Thankfully they are just the size of paracetamol and are no problem. She said  she has started me on a lower dose of 1650 for the first round and then will probably raise it for the second. This seems to be the opposite to what appears to be the norm.

Nicky-  your comments about being sick were comforting - I was never sick during my first 2 lots of chemo in 2009 and 2015. My horror is diarrhoea. I suffered for 15 months, and it was hell.

Keep you fingers crossed for me please.  Marli x

Highlighted
Member

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

Thanks, Nicky! You gave a much more comprehensive reply than I did - so much more useful information.

 

I hope you manage well, marli. As Nicky said, you can always ask for a dose reduction, or a break, if you are suffering from the se's. I have had both over the (nearly) 3 years that I have been on Cape.

 

Please ask anything you like - we will do our best to answer your questions, but if we don't know the answer we will always refer you to your medical team for the answers.

 

Hugs and best wishes. Barton.x

Highlighted
Community Champion

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

Hi marli

Sorry you have had to join the secondary part of the forum but I see you have already had a warm welcome from Barton. We are a friendly bunch and most often join in a relevant treatment thread or dip in and out of the Bone Mets please join in thread - even if we don't have bone mets or have other mets alongside bone mets. Feel free to join in on any thread.

I have bone mets which were diagnosed in 2008 and then liver mets came along in 2013 to join the party! I started then on Capecitabine and it worked well for me for about 18 months, shrinking my liver mets and stabilising my bone mets. I have an awkward BC that likes to change receptor status so after Capecitabine I went onto a Herceptin based treatment as I was now HER2+ having been HER2- for 10 years! But that's too long a story to bore you with.

I had a real problem with the thought of nausea when I started Cape as I had awful nausea with FEC in 2008. I started taking anti sickness meds but quite soon realised they were the reason I felt so spaced out and stopped taking them, I didn't suffer with nausea at all after that whilst on Cape. Btw they were metaclopromide, which is the one often given and can have adverse SEs for some people - just giving you the heads up. I also had a 20% dose reduction around the same time (cycle 1) but this didn't reduce the effectiveness of the treatment, just the SEs. I did have some diarrhoea after the last tablet of the cycle but nothing to cure any real problems, just one day or night of it so didn't need to take any meds. I did get sore feet but, again, nothing that caused me real issues, I just needed to moisturise well and used a cracked heel balm on my feet which has the active ingredient of urea at 25% rather than the 10% which some moisturising creams have. Boots own was fine and is the same as branded ones. I did get small splits in the side of my fingers at times but used to put on healing plasters, again own brands from various places work well.

Also if SEs get too bad you can ask for an extra week off, this is fairly common, as our bodies sometimes need an extra break to recover especially if SEs are getting bad, and it allows skin to heal. I also travelled abroad whilst on Cape (lots of times!) so don't feel you have to stay rooted to the spot, some oncs don't like the idea of travel whilst on chemo but for goodness sake, we need to enjoy ourselves! Usually your blood counts don't take anywhere near the pounding that other, IV, chemo's give so you are unlikely to have low blood counts which is the usual reason not to travel in case of infection.

Hope that helps. There is loads on info on this thread but it is a looooooong thread to read all of the advice, I've just written down my experience of a very doable and effective chemo.

Good luck with everything.

Nicky x

Highlighted
Member

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

Hello marli, sorry you have had to join us but welcome to the Cape Crusaders. Good luck for tomorrow.

 

You have done the right thing in reading through the other posts on here, but there are so many I know it is difficult.

 

You are also right to be prepared with questions to ask - please try and have someone with you to make notes and listen to stuff you might not hear if you are stressed (totally understandable).

 

The main thing to be aware of is the big D (diarrhoea), although some people have the opposite problem (not me). Some people also suffer from nausea. The hospital should give you pills to ward off those problems. Also, sore hands and feet. Please be prepared with plenty of moisturing creams.

 

 

I wish you good luck - please keep in touch and let us know how you get on. Ask us any questions you like.

 

Hugs. Barton.x

Highlighted
Member

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

Hello Ladies. Hope you don't mind me joining you as I start Capecitabine tomorrow and am rather nervous.

I have been reading through some of the earlier posts as well as the more recent ones and have found out quite a lot of useful information. It has bee more than 3 months since dx with secondaries in liver and peritoneum (abdomen) so have had a long time to dwell on it.

To cap it all because I have had chemo before they have not given me the introduction. I am, however going to ask as many questions as I can.

 

Any questions I should ask and any tips please. Marli x

 

Highlighted
Member

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

Was reading your last post and thinking 'yes, its hard to make plans' its a rough road we are all on - but its a good idea to put in a few plans  for small things to look forward to xx

 

Moijan💙💙💙

Highlighted
Member

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

Thanks everyone for your support and advice. I see Oncologist next week so it gives me time to make a list and plan what my next step is ? I certainly feel strong at the moment. I am putting things to the side though as I feel that it am giving the signal to my illness to take over. I know that sounds a bit mad !

Just worry about family and how they will manage. Not all my family knows and my Parents went with me to the last appt. I think it made them realise how unwell I am. Told them that I take each day as it comes and there are going to be rough days. We keep trying to go out for the day but does not happen as I am unwell so it has to be last minute decisions.
Hugs and thoughts with everyone xxxc

Highlighted
Community Champion

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

Racer, I agree with the other ladies, try and get a second opinion. I have challenged my oncologist on numerous occasions and have also been referred to the Marsden on several occasions. It may be that Cape isn't benefitting you as much as maybe something else can and a major teaching/research hospital will have far more tricks up their sleeve than a local hospital will. Hope you continue to feel a bit better and get out and about a bit more as you seem to have been doing.

Nicky x

Highlighted
Member

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

Racer
I don't post very often but would agree - try and get a second opinion . The royal marsden possibly if it's close to you . I did the same and have been there ever since .
Highlighted
Member

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

Racer, did you get a second opinion? (Will pm you)

 

i

you sound as if you want to fight this....its important that you are true to yourself...the oncs WILL tell it like they see it....but it feels pretty damning and set in stone when they speak like that....I wonder if they realise?

 

my gut feeling is...get a second opinion at somewhere you trust...

Moijanxx

Highlighted
Member

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

I know what you mean by emotional, racer! 9 times out of 10 Onc appointments I end up bawling at the slightest thing - luckily my sister can remain calm and finish my questions for me! It's always good to take someone with you if you can. I'm glad you weren't alone at your last appointment.

 

Hugs. Barton.x

Highlighted
Member

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

Thanks Barton . I am going to take my Husband to the next appt . I suppose I am not going to like what they say but think I will make a list . I had taken my Mum to the last appt and she thinks the Oncologist was listening and knows what a strong person I am .
We will see and as you suggest try to stay calm as I do get emotional . Think I am stubborn lol . I will keep you posted xxxx

Highlighted
Member

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

Hello racer, lovely to hear from you! I'm afraid I can't help with advice about disagreeing with your Onc - luckily, I have never (yet, anyway) been in that situation. However, I still think that as it is your body they are talking about, you ought to have much more of a say in what they do to/for you. I would enlist the help of your obviously very supportive husband, and make your wishes known. It is probably much harder to do than for me to say, and obviously do it as politely and calmly as possible.

 

Sorry, probably have been of no help whatsoever! Hugs and best wishes to you and your family.

 

Barton.x

Highlighted
Member

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

Happy Easter everyone . Hope you are having a good weekend and eating plenty of Easter eggs lol xx
I saw Oncologist on Thursday and it was my actual Consultant which made me nervous. He asked me if I thought that the Cape was benefitting me . I told him I had been sick but felt quite well the last couple of days. Also I felt it was positive as I feel I am doing something to fight this horrible disease.
The Oncologist does not think I am benefitting from the Cape and that it is more side effects. He said my platelets had dropped slightly and my Hb. He asked if I wanted to continue treatment. I said it has been taking a couple of weeks for bloods to recover. The Onc said it is my liver that is the problem and will decide in a couple of weeks when I should have my next cycle. Think I am going to have a battle as I want to continue and feel that they are not giving my med a chance to work .
Also I feel inspired with everyone's support and positive stories. I feel they are giving up on me and I am the one that has to deal with the sickness etc.
I actually went out on Friday night and drove the car there too which I have not been able to do for a few weeks.
Are there any suggestions/advice about what I can do if I don't agree with the Oncologist ? I know it is going to get me but want to be as normal as I can for as long as possible. I have set short targets such as my Daughter's prom etc .
Sending cyber hugs and love to everyone. Just got to keep fighting and be positive .
Xxxx

Highlighted
Member

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

hello Cape Cockerels!

 

just wanted to say.'Lucky man' is on tonight...such a lovely escapist programme!

 

hope Easter is treating you all wellxx

 

 

Highlighted
Member

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

Hi George,
Hope the tamoxifen keeps you stable for as long as possible. I was on it for 5 years after my primary and had no issues with it whatsoever. I think the plan is for me to go back on it at some stage too. Best wishes. Waffles xxx
Highlighted
Member

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

Hi Waffles

So pleased your been chemo is working for you and that the pain you were experiencing came only from wind. We always imagine the worst with this disease, don't we? Yes, I was very pleased with my results, just hoping that Tamoxifen can keep me stable for a little while before I have to go back on the hard stuff. Seeing Onc mid May so trying to make most of time before then. Keep us posted with hiw you are getting on.

Have a wonderful Easter everyone.

George x
Highlighted
Member

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

Hi George,
Been off line for a while, through fear, as much as anything else as last chemo failed and had increasing pain in liver area so wasn't confident Taxotere would work. Luckily had good results so big sigh of relief for a couple of months and a bit of peace till the next scan. .Liver pain appears to have been trapped wind caused by IBS and stress. Pain now gone amazingly!! I can imagine anything.
Really great to hear your news. Love Waffles xxx

Highlighted
Member

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

Thanks for comments ladies, I find my nails are much hard and thicker than before which I put down to the adcal pills. I think I do need to see a podiatrist - am hoping I'll get if free rather than having to pay privately!

 

happy Easter weekend cape crusaders!

helen xxxx

Highlighted
Member

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

Hi Waffles

Lovely to hear from you. How are things with you?

George
Highlighted
Member

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

Hi Moijan, Sorry haven't been on for a while been getting into the Inspire forum and there's only so much cancer talk that I can do ha ha. I've got a second cold where I haven't been "sick" for years but I look at it positively thinking that perhaps my immune system has finally recognised my cancer cells but can't cope with dealing with them as well as a cold bug. Haven't been to my O2 therapy for a couple of weeks cos of infections but I will probably go back when well again. But overall doing ok. Hugs to all of those who are newly diagnosed and those struggling at the moment xx 

Highlighted
Member

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

Lovely to hear your good news George.
Highlighted
Community Champion

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

Hi Cape crusaders

When I was on Cape in 2013/14 there were quite a few comments about pain with toenails and it was always the big toe nail! I was having problems with one of mine and realised it seems to be one of those extra little side effects that these wonderful treatments give us! So, definitely not uncommon. My big toenails in particular became very thick and brittle whilst on Cape which has continued since coming off it whereas my fingernails are paper thin and like little razor blades - I have to be careful on not accidentally slicing myself! They are not great condition although I'm trying to add a treatment oil at night to help them and I have to keep them very short or they will flake/bend/break.

Oh well, if it's doing its job it's a small price to pay for this chemo I suppose.

Nicky x

Member

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

Hello London, and all - re nails - my finger nails on Cape are paper thin and bendy (have to keep them really short), but they grow realy fast and the cuticles too. Also, I have hairs (luckily very fine and pale!) growing on the backs of my two index fingers! Bizarre! At least I don't have hair on the palms of my hands - yet! Luckily I have never had trouble with my toe nails from chemo, and not on Cape either.

 

Well done Helen and Lindylou for your Cape cycles. In answer to your question, Helen, I have had a couple of 6-8 week breaks from Cape and stayed stable. However, when I had a longer break (due to sore hands and severe breathlessness), and was put on Exemestane, I had quite a lot of progression and thats when it went to my bones. Apparently I am only weakly hormonal now which is why the Exemestane didn't hold it at bay. That was a break of about 8-9 months, though. Hope that answers your question.

 

Congratulations on your break, London, however short, and glad you enjoyed your riding. Can't help with the flakey skin on your fingertips, though, apart from lots of cream which is what you are already doing. I'm getting the same problem. I do put a blob of Doublebase moisturiser (the hospital gave me a couple of tubes ages ago) on the sore fingers and put plasters on over night. That helps a little.

 

Hugs to all. Barton.x

Highlighted
Member

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

Hello all! Having a few extra days off was good as my lips and feet are fine now! I have to go to Barts tomorrow to see if I'm okay for the the 2nd cycle of tablets. ( I went riding too!)

But now although they don't hurt in any way the skin just behind my finger nails is suddenly very dry and flaking off despite having loads of cream everyday. My nails though are very hard for the first time ever and are growing fast, this seems most odd! Has anyone had this as a side effect and if so what worked to get rid of it? Thanks all!
Highlighted
Member

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

Hello Ladies,

I have been taking cape since September 2016 when I was diagnosed with skin mets only a few weeks after finishing all my treatment for primary breast cancer. I find it ok, very achey sometimes, fatigue etc but can't work out if that is the cape,herceptin or anastrazole? Difficult isn't it?  

Well HelenAquarius I just had to reply - saw a podiatrist last week and she had a right go at my big toe nail.

That night the throbbing kept me awake so kept daubing savlon on it and now just about able to walk  in shoes properly again!  I see this podiatrist about every six weeks.  Not sure I want to it she is going to cause me problems!

Best wishes to all on cape

LindyLouLou

 

 

Highlighted
Member

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

Hi Racer, thinking of you and sending cyber cuddles your way 🙂

 

ive done 7 cylces of cape now, last 2 have been hard due to fatigue - seem to spend 50% of my life dealing with this poopy disease - don't we all!  With appts or organising and taking meds or lying on the sofa with zero energy. 

 

Anyway, have had ingrowing big toenail for years that I manage fine, but recently skin on toes gone downhill with the cape, and I've been poking about too much with a sharp pair of scissors (eeek!) and managed to make it infected! Bum! Not badly but I mentioned it to onc who has put me on antibiotics and given me a week off cape - hoorah. Feel strangely blessed!

 

I asked for a longer break soon as want to regain energy and he laughed and said, how long for.. 5 minutes? At least he's got a sense of humour! He said when I get my ct scan result (having scan tomorrow) if stable then would consider 6 weeks off..

 

So.. question. Who else has had time off cape and for how long and did you remain stable?

 

love to all crusaders... hoping to stay in the cape club for as long as possible! 

Helen. Xxxx

 

Highlighted
Member

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

Oh racer, so sorry to read you have been sick and are so tired all the time. As others have said better than I can, please rest as much as possible, and keep as well as possible. Good luck with your Onc appointment on Thursday, and do let us know how you get on.

 

Hugs, and best wishes. Barton.x

Highlighted
Community Champion

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

Sending you big hugs, Racer, you are going through it at the moment and it's never easy when you feel so bad. Tough times but you're a tough cookie. Look after yourself, carry on doing what you need to do, not what everyone else would like you to do even if it means some disappointment not being able to get out and about. We're all here looking out for you. Hope all goes well later in the week at your onc appt and update us when you want to.

Nicky x

Highlighted
Member

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

Hi Racer
Lovely to hear from you... I know having to rest must make you feel a bit powerless, but the others are right..... rest up till you feel better.... give your immune system a chance to recover ....

eat small snacks, drink loads and get up every hour or so for a trip to the loo or just a walk to the kitchen... keeps your blood moving and also may help you feel a bit betterxx

lots of love to you... keep us updated, oh and tell everyone to cover their mouths when sneezing/coughing..... I'm always telling my oh and any children I'm in contact with

Moijanxxx
Highlighted
Member

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

Hi racer

Thanks for updating us. Sorry you have not been feeling too good and I hope your new regime of rest and small snacks is working. I know I am stating the obvious, but you do need to look after yourself. I have spent days in my pjs as sometimes our bodies just need rest and tlc. Good luck with your oncology meeting on Thursday-will be thinking of you.

Hugs, George x
Highlighted
Member

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

Hi everyone sorry not been on forum . Not last week but the week before I have been quite sick. Macmillan Nurse came to see me last Monday and told her how unwell I have been and to look at my anti sickness meds. Felt fine and saw Oncologist on Thursday who agreed to me going on the Cape for a week and two weeks rest. I had found 3-4 small lumps in the side of my neck and she thought I may be brewing an infection .
My son has a cold which I think I have caught from him. Today is first day not been sick but I just have a lack of energy. My hubby has said at times when I am talking to him it does not always make sense. He said I look spaced out sometimes. Just been going to bed during the day and stayin there until the following morning. I just want to keep fighting this and feel bad as it is School holidays and cannot go out. We have had to cancel a few things as we don't know how I am going to be .
See the Oncologist on Thursday just hoping I can continue the treatment. My hubby went back to work today but is stressed as he knows I will say I am fine when I am not . So another pj day today and just eating light snacks.
I will try and post at the end of the week when I have seen the Oncologist. Hope everyone is ok especially people who are having a rough time.
Love and hugs to everyone xxxx