Community Champion
Posts: 8,504
Registered: ‎26-10-2015

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

Hello Ramade
For the first time after 6 cycles. .I had an "explosion" yesterday. .so I was glad to be at home and near the loo ! I have imodium and allow 3 visits then if it doesn't stop pop the pill. I'm off the peachy pills to Sunday. .seeing oncologist Wednesday so hope my platelettes and bloods are good ..for another cycle .
I find these pills really good ..no sore feet or hands either. Did feel a bit sicky but I ate too much !
Member
Posts: 231
Registered: ‎30-03-2017

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

Hello Wee Vee, i am on day 10 of my first cycle and have no side effects yet, i was told that if i got diarrhoea to inform the hospital but to take immodium and they would only stop the treatment if i had severe diarrhoea even taking immodium. i tend to lean more towards the constation side of things normally but we'll see. they can give you cream for sore hands and feet, avoid wearing socks as much as you can.

i do hope this helps and good luck to you. i feel this treatment is already working for me and it is fair to say i have had a long line of failures so i intend to try anything rather than stop. you have only 3 days to go of this cycle. i am off it for 2 weeks instead of 1 because of Christmas and the onc said that wouldn't make any difference. o xxx

Ramade

Member
Posts: 3
Registered: ‎13-01-2016

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

Hi, I am on day 11 of my first cycle of capecitabne.  All was good until yesterday and now suddenly all the side effects have kicked in.  I woke up last night with diarrhoea which has now settled, have sore hands and mouth ulcers.  Anyone else had a similar experience?  My oncologist told me to phone the chemo helpline if I had severe diarrhoea and they would probably advise me to stop but instead I have reduced the dose for the last few days to see if that works.  Just wondering if anyone else has had a similar experience?

Member
Posts: 231
Registered: ‎30-03-2017

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

Hi Carolyn. my daughter has sent me some Macmillan/ Greene king recipes for Christmas for people who have difficulty with eating or swallowing, they look really scrummy, i will be getting hubby onto that job pretty soon. I have to physically hold open one side of my mouth to put food in but then it,s fine. Good luck with your scan results, it's not the time of year to have that sort of worry.

hugs

Ramade

Community Champion
Posts: 8,504
Registered: ‎26-10-2015

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

Thanks bJr .very sensible having the port fitted ..when I had primary I had a picc line but it was so uncomfy. .think these new ones are more comfy and designed for long term use.
Think hunt the vein is the worst bit of scans etc.
Hope u doing OK with your treatment too ....xxxx
Member
Posts: 33
Registered: ‎24-07-2016

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

Hi All

i often read that ladies have problems with needles, bloods taken etc, , which is what I had for several years, however earlier this year I had a port a cath fitted, its brilliant and I don’t get problems at all. 

A lot of hospitals don’t offer the option unless you asked, which I did and they arranged to have fitted quite quick. (I only learnt about it from a fellow chemotherapy patient)

Contrast for scans go in, bloods out and chemo in. Once used a small plaster on and off I go.

over the summer I as able to swim etc as  all that’s visible is a small bump on my chest and no external tubes.

The last straw for me was when they had to take bloods from my feet, very painful and slow and bruises horrendous.

im sorry if you already know about this but I didn’t so thought might be worth a mention here and help someone else having similar problems that I had.

 

good health to all. X

 

 

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Community Champion
Posts: 8,504
Registered: ‎26-10-2015

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

Hello Ramade
Yes same symptoms. Apples are out. ..I do eat bananas but otherwise it's a nightmare eating with a dead face. I mainly eat cuppa soup and tinned rice pudding for ease ! I don't get headaches or any pain though. Just fuzziness and a bit confused ..can't believe I finish chemo pills Saturday again for a week. .the 2 weeks regime goes so quickly .
I'm still black and blue in my arms from hunt the vein for contrast on the ct scan last week. Hope she finds a good vein for blood test next week.
Not sure when I get scan results ...
Well think I have Xmas pressys sorted ...just a few money wallets to make up ....not much food needed as out for Xmas dinner so won't be one of the many pushing 2 trollies round Sainsburys. .do they eat all that food or does it end up in the wheely bins?
Member
Posts: 231
Registered: ‎30-03-2017

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

Morning all, hope you are all coping.

Carolyn, thanks for your reply i thought that might be the case with the brain. They are not talking about wbr yet but they are going to biopsy the neck lump because i have to physically hold my bottom lip down on the left in order to eat. Whole apples are out as i'm sure you've found. i think i'll have to ask my daughter to mash my food up as she does for the little ones lol. how are your twins by the way.

hugs Ramade x

Member
Posts: 33
Registered: ‎24-07-2016

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

I’m a week in on first round of peachy pills and apart from feeling slightly nauseous in the morning, I’ve not been too bad. Liver pain has started to ease off as oramorph kicks in. Nurse said to maintain pain relief not try too get on top of it once too bad, so at the moment that’s what I’m trying to do.

still waiting for biopsy result.

Is this normal, whatever is normal, start to cape. I’m not sure what to expect!

good luck to all and stay well. X

Community Champion
Posts: 8,504
Registered: ‎26-10-2015

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

Oh Ramade
You have the same symptoms exactly as I do...obviously you haven't had the wbr treatment either.
They did say that cape takes a lot longer to work on the brain than liver and lungs .so fingers crossed that it does it magic soon.
Member
Posts: 231
Registered: ‎30-03-2017

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

Hi all,hope everyone is still coping and having some success with the peachy pills(Carolyn thankyou)

Cape is going ok for me so far after first few days. i have cancer in neck,brain,brachial plexus and bones.

my Face is numb all down left side and i can't open my mouth very wide so eating is difficult. i have also lost balance so can't be let out on my own. So i'm wondering does anyone know how long cape takes to work if indeed is it working on me. Trying to stay positive.

hugs to eceryone

Ramade xx

Community Champion
Posts: 8,504
Registered: ‎26-10-2015

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

Hiya Melinda
Phew you have been through the mill with wbr ..they do say its tough. My oncologist says that cape works well on liver /lungs but does take longer to hit the brain ..and there is about only 20% of it doing that much . Very few chemo do break through the brain lining though.
Peachy pills crusaders ...keep taking them .
Member
Posts: 15
Registered: ‎01-11-2018

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

Yes,  I think I had them for a while but never had a scan on brain until they thought they saw something on my spine and then did an MRI.

 

I had whole brain radiotherapy,  It was a very easy procedure and very quick but I have never felt so low in my life and I really didn't know how to cope for a few weeks afterwards but thankfully with a very supportive family I came through.  I just hope that cape can help, I wasn't aware until reading your post that there are chemos that can reach the brain !  I really should ask more questions but to be honest I am so scared I just want to get out as soon as I can. I had the WBR in February this year. xx

Community Champion
Posts: 8,504
Registered: ‎26-10-2015

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

Hiya Melinda
Gosh didn't realise u had brain mets too ..how long ago? And did u have treatment ? Apparently mine are quite rare. .only affect 5% ..trust me to get them.
Member
Posts: 15
Registered: ‎01-11-2018

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

Carolyn,  you have such a lovely sense of humour with all you have to cope with Smiley Happy.  I did have brain rads and I must admit to "going along with it" and not putting much thought into the implications.  Looking back I should probably been more questioning.  Still its done now,  I just wanted them to make it go away !!  I hope you are having a nice day and managing lots of on line shopping treats for yourself and family .

 

Hugs and positive thoughts as we wait our results xx

Community Champion
Posts: 8,504
Registered: ‎26-10-2015

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

Hello Melinda
No I don't mind sharing the brain mets thing. The ct scan missed them in March when I started getting a numb face ..in July I had a mri brain scan and that's where they were found. I declined whole brain rads as with oncologist it was decided that it wasn't good odds. ..oncologist is hoping that cape will hold things. I got a paralysed left side of face ..no pain just hard to talk. I get a bit dizzy and balance problems but I can still keep up with conversation and online shopping !
Hope this helps
🐸🐸🐸🐸
Member
Posts: 15
Registered: ‎01-11-2018

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

Hi Carolyn,  it sounds like we were scan twins last night !  I still panick after a scan even after 3 years of it.  I will now be a hopeless case until results day .  I really need to keep it together so I don’t ruin Christmas for my  family, I just worry about getting stocking presents muddled up and wrong labels on parcels. I suppose it’s keeping my mind busy .  I hope you don’t mind me asking but do you get many side effects from your brain mets ?  X

Community Champion
Posts: 8,504
Registered: ‎26-10-2015

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

Hello Melinda
Hope your scan went OK last night ...mine wasent too bad as I had 2 x brain and 1 x body. ..about 20 minutes once the cannula was in !
Apparently they took 1000 images. .so that's why it takes so.long for results. .aagh .
Community Champion
Posts: 8,504
Registered: ‎26-10-2015

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

Well ct scan all done. 3 attempts at vein though for contrast. Results 3/4 weeks . Think I've got so used to results now ...I'm not going to fret too much!
☺☺
Member
Posts: 332
Registered: ‎28-01-2016

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

Sorry, meant to write Lyndy (duh)