Capecitabine Experiences, is this expected?

Hi Bargi

Don't know much from personal experience of the drug you are on, but when I read your post I had to respond.

NO! You are absolutely not being a whimp! Anybody who has to endure chemo is exceptionally brave in my book. 

Don't think people realise how many pills you have to take to help your body cope with the chemo. Anti-sickness, anti-diarrhoea, something to stop your skin drying out and peeling off, something to stop this and something to stop something else and another one to counteract the effects of all of the above etc. etc.

Everybody is different when it comes to severity of side effects. 

However, I would add that if you are not happy with what the Doctors are telling you, you must speak out and fight your corner - please don't let anybody fob you off. You have every right to be as comfortable as you can throughout your treatment.

Remember - the squeaky wheel always gets the oil first!

Sorry if I sound bossy.

Wishing you much luck and love xxx

Hi ,

My mum had it back in 2009 then another six cycles in 2010 . 

Her worst  week was her off week which seemed really unfair!! They adjusted her dose and that really helped in the end . It can take a wee while to get the right adjustments to suit individuals but they will work with you as they try to get It right . Keep communicating with them and I am sure they will find an approach which will help . 

Take care,

Court 

Hi 

No I don't tell think your being a wimp at all, your side effects are a near mirror image to my 1st two cycles, start my hird cycle on Friday and am expecting pretty much the same

Best regards 

Dom

Hi Bargi

No you're not being a wimp and I'm sure you've read a lot of the other posts on here where people are suffering.

Firstly please do not google - the info is out of date and scary - stick to here and the Beating Bowel Cancer board.

Secondly talk to your doctor/oncologist as there are lots of different medications for sickness that you can try. Also jelly babies, wine gums and marshmallows are good for thickening up loose stools. Aveeno cream with shea butter is good for your hands and feet.

I had capecitabine with oxaliplatin after my op which is a whole different ball game but I'm sure some of the others on just capecitabine may have more advice

Take care 

Karen

Ps my freckles seemed to come out for 2-3 days after my oxaliplatin iv and it was usually the healthiest I looked!

I am on my eighth cycle of mop up Capecitabine. My hands and feet are very cold all the time so is my nose! (Not sure I can blame that on the tablets)

My stools are very loose but find they are even worse if I take the Loperamide (it does state on the information leaflet the tablets remove food from the body quicker than normal). I have a colostomy so would prefer to feel sick rather than the diarrhoea. I don't feel better in my week off - to be honest it doesn't even feel like a week - I finish Friday morning then have to go for assessment on Wednesday morning.

You're not a wimp at all - I'm lucky that I am better than before all this started so anything that happens is nowhere as bad as before. Plus I only have 13and a half more days to go!

Hope you begin to feel better soon.

Hi Bargi,

You are not a wimp! Any chemo is frightening and debilitating.

I am on my 6th cycle of Capecitabine, so far no mandatory breaks.

I had to be awkward, awful constipation instead of diarrhoea, but I cope with it using Movicol in varying doses, though getting the balance right is difficult .

Fatigue, poor concentration, and confusion are a bit of a problem, but walking always helps. Going out is a bit of a nightmare with dodgy bowels, but I always make sure I know where the toilets are.

The worst problem for me has been the hand/foot syndrome, but using aqueous cream, aloe, tea tree cream and homeopathy I am coping.

Don't worry about the diarrhoea ( easy for me to say when I don't have it!!), but as long as you tell your team promptly when you get problems they will sort it. Do't suffer in silence; they prefer you to contact them sooner rather than later.

You will get lots of wonderful support from this forum, so please use it rather than Google!

Good luck,

Seaspirit xx

Well not a whimp but a hero... an example, as we all are one way or other, on this journey even when it ends and no longer taking the durgs.

Very good yr keeping a record of yr symptoms each cycle, I did the same and believe it should be a common practice when you start as it helps recall all the odd reactions to give vital feedback. For Neuropathy pins and needles which is common particulalrly for Oxaliplatin (which i dont believe yr on as you ar N0) but with Capceitabine brings on hand and foot syndrome.... so needs careful monitoring, Pyridoxine B6 is commonly prescribed for this.. plus I took calcium / magnesium tabs which i took as a mineral..... to help. The nerve endings are usually impacted with Chemo drugs especially platinum based ones...Cape brings its own problem...

Averno cream for hands and feet was also prescribed for me and is important to keep skin moisturised to stop it splitting / blistering as I had huge blisters, painful feet, and skin on hands getting eaten away... just one small area....... so lots of mositurisers.. udder cream and others... Averno is usualyl given. I tried and used loads.... udder cream, Averno, Body shop one,....

So I like you I also had dose reductions, which are common, as the dosage is guess work based on body index / mass (the clc you did) but as metabolisms are so different there is no accurate common stnd dose / BI fits all... so dose change is a common outcome early on, as the experts manage yr journey.

I have been left w Neuropathy, not severe luckily, came on unfortunately on last cycle, with build up of the Platinum Oxy infusions And the issues w Hand/Foot syndrome which went away on does reduction but was always bubbling away. A common question I had was, 'can you do yr buttons up at room temp'. BUT when you elect to have Chemo to increrase yr odds you dont want to reduce what you can manage as I as w many wanted the biggest bang for the buck as dont want to do this again. This is always the chelenge to get the most whie minimising impacts. There is no certainty on avoiding side effects, a uestion of managing / minimising impacts.

So moisturise yr hands and feet, ask about B6 tabs, maybe add Calcium/magnesium (check with yr Consutant Onch on all Vitamins/Supplements you take as some can be counter productive to the Chemo, like Vit C, or anti oxidants).

For neuropathy that I was left with, it is what it is, and glad I did the 8cycles.... I have Reflexology, excellent make yr feet like a million $$s and Acupuncture... plus I have recently tried Glucosamine Gell.. this withthe Reflexology has solved the pins and needles and made a reel difference. For me at least... Fatigue is common after 2nd or 3rd cycle so dont panic, ss the blood cells are culled... hence why i loved my steroid pills.... so a good healthy diet / exercise will also help

Best wishes

All I can really say is that we are all different. I was also on quiet a high dose (2300mg twice a day, weight 69kg) but was lucky to sail through with not too much by way of side effects apart from a cumulative fatigue and brittle nails.

Regarding the diarrhea I would say that it is still relatively early days after your operation. I took me nearly a year before mine settled down and even now I have to eat loperamide as if they are sweets to have anything near normal bowel behaviour.

Is it possible that you have picked up a tummy bug? It is easy to leap to the conclusion that it is the chemo but it might not be.

Hopefully you will get the diarrhea under control soon.

As regards other side effects especially the fatigue, I found exercise to best best companion because it seemed to keep the worst fatigue at bay. I carried on riding my horses all through chemo and it made me feel much better. See what you can do if it is all all possible.

I think that round about my 5th cycle I had some liver enzyme issues so had to have a two week holiday from the chemo.

Hi,

Are you just on capecetabine?   You see I was told that the tingles were caused by the Oxaliplatin.   Maybe others can advise. 

I was on capecetabine tablets for 3 cycles but the 3rd had to be reduced due to diarrohea 2nd cycle.  Mainly my fault because I should have rung the chemo unit for advice rather than struggle on.  My main problem was terrible (and I mean terrible) wind (both ends) with a sulphur/eggy smell.

I'm now on 5fu (ca[acetabine infusion rather than tablets) over 46 hr drip and (this cycle so far) I've had hardly any problems.  My last cycle was a lot better too.  So far this cycle NO side effects from anything (apart from those tingles.)

Anyone who could clarify the tingles.  Does 5fu /cape bring it on?  Just that chemo nurses said it was the Oxy.

Thanks

Lynne

Hi Lynne,

Oxy causes peripheral neuropathy with tingles and numbness. Cape never causes neuropathy, but some tingly feelings csn be part of the hand/foot syndrome. 

I sm on Cape orally, snd have fairly bad hand foot syndrome, and part of this is painful tingly feelings which are not neuropathy.

Good luck, 

Seaspirit xx