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Xeloda / Capecitabine - Your Top Tips, please?

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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

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

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

Member

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

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

 

 

Member

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

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

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

Member

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.
Highlighted
Member

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

Member

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

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

Member

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

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

Member

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

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

Member

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 .
Member

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

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

Sorry, meant to write Lyndy (duh)
Member

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

Good luck with your scans today, Melinda and Carolyn.
Glad that Tamoxifen is working for you, Lynne; it is much easier that chemo. I would like a little break from Cape, but don't want to tempt fate by stolpong it.
Hope Cape continues to treat you all well. Have a good week everyone

George 🤗
Member

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

Hi Melinda.

I was convinced my last scan would show something going on with the tissue around my ribs as I had numerous lumps that weren’t there before. I’ve no idea what they were but they didn’t show up on my ct and they’ve disappeared now.
Also, stress can play havoc with your lymph nodes and so can meds. When I had my primary diagnosis last year there were a cpl of lumps on my neck which also disappeared.
Member

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

Melinda
Sending vibes to you tomorrow too ..agh hunt the vein for the contrast is a pain in the bum too !! Hope the radiographer is good with it.
Linda
Glad tamoxifen is being kind to you after the taxol u had to endure ...
Member

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

Caroline my scan is at 6 as well.  I will be sending you positive vibes.  I really think a scan results ban should be enforced in December!,  I always get December flaky brain without this added stress.  Good luck tomorrow x

Member

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

Evening George

So pleased cape is still working well for you. When I was on cape from October last year till July I gained about 10lb in weight. Mind I was always starving not easy to diet on the peachy pills as you have to eat reasonably when taking them. As you know I am now on tamoxifen which seems to be going OK. Weight has now started to come back down thankfully.

Carolyn good luck with your scan tomorrow.

Linda
Member

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

Hello Melinda

Snap we are on the same stage. .I've just started cycle 6 too and just looked my scan is tomorrow night at 6pm too. ..aagh results in just to spoil Xmas for us !
I have been oiling my feet and hands but no problems as yet. ..I use Johnsons baby lotion ..cheapskate!
I cant answer about your lumps ..maybe a blast of rads would help ? But I would think cape would do something soon.
So fingers crossed we can both cope well with the peachy pills ..I'm only taking 2 big ones and 2 little pills now twice daily.
Member

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

Hi Cape Ladies,

 

So glad to hear that on a whole you are all managing well on cape and getting good results and good luck Carolyn for your scan on the 8th.

 

I am now on my 6th round of cape which I have found very easy to tolerate and none of the side effects that I was expecting.  I have a scan tomorrow, which is the first one since starting on this chemo.

 

My worry that is keeping me awake at the minute is that I have just found a few lumps in my neck,  I am sure that they haven't always been there and have just recently developed.  Do you think this will be an indication that the Cape is not working on other mets ?  The constant worrying is really getting me down.  If the cancer has spread to neck lymp glands/nodes can they be treated from anyones experience ? 

 

Big hugs to everyone waiting for results and feeling poorly xx

Member

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

Hi Carolyn

I don't want to worry you but when I first started Cape, I was 60kg. I am now 66kg🙄I did ask my onc if the Cape was to blame- he said no so it must be the fact that I am eating more, especially things I fancy. ( just finished a donut). I do try to do mild exercise every day to no avail regarding the weight loss.However, I am not too worried about it as, when I had an inflamed gall bladder, I lost a lot of weight very quickly which was scary. My philosophy now is everything in moderation. Finish cycle 21 tomorrow so I will be having a few cheeky glasses of wine.
Go and enjoy a pizza😂

George 🤗
Member

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

Hiya George
Our wise owl with cape pills. I've just started cycle 6 yesterday. .feeling starving now back on them though ! I was doing a jigsaw app on the kindle earlier in the night ...it was a picture of a pizza ..I almost felt I could eat it . .Glass and all. Ha ha.
I'm now on a small dose 1300 x 2 a day. ..
But joking aside I must watch what I eat or I'm going to be a heiffer ....
🐽🐽🐽
Member

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

Hi BJR324 and welcome. Good to hear you have turned a corner and are feeling more positive. I am on cycle 21 of Cape and, like you, I started on the full dose of 2,150x2 which was reduced after about 4 months as I was suffering from the big D during my week off. Once you get into a routine, Cape is very manageable. I am currently on 1,800x2 and the main side effect for me is sore hands and feet despite lots of moisturising; however, this doesn't stop me from getting on with life and planning lots of 'feel good' things. Cape has certainly worked well for me and has got rid of 4 small liver mets and reduced the remaining one to a dot so fingers crossed it continues to work🙏
Good luck with Cape and your scan result after 3 cycles. At least this means you can enjoy Christmas- onc giving me an extra week off Cape during the festive period- hurrah😊
Do post any questions you have as there are lots if wise women on this thread who will be able to answer any questions you might have.
Enjoy your Christmas wrapping

George 🤗
Member

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

Hi All

 

After my initial melt down that having spent the whole Summer on Docetaxel for a splattering of liver mets (onc’s words!) only to find by 1st October liver Mets had spread extensively through my liver, I am at last calming down! ( well a bit anyway). I also requested a Chang ego oncologist as I’d been with same one since primary in 2005.

for the last couple of months I’ve felt so lethargic and unwell, on so many pills and potions I haven’t managed to do much but today I’ve turned the corner.

LOTS OF POSITIVE thoughts from my lovely family and friends as I join n the CAPE CRUSADE! so this morning ive popped my first “peachy pills” as Carolyn calls them.

im hoping for not too many side effects but I seem to be having quite a biggish dose. 2150g x 2 a day? I weigh about 10 stone. So not sure if that’s why! 

Im also waiting for the results of liver biopsy from last Thursday. Very surprisingly I found this quite painless! A night in hospital to recover but no discomfort from site.

Please any advice help on cape would be appreciated, Ive been booked for 3 cycles then scan, so hopeing  that it works well for me. 

Good luck to all other cape crusaders. I’m going to be busy today wrapping all those internet xmas presents that it’s all to easy to buy when your sat at home! 

Fairies and elves seem to have decorated my house already!! 

Xx

 

Member

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

Hello Ramade
Ugh that E and E regime ..5 months i put up with it .. sure it fed the cancer!
Anyway cape is fine ..don't be scared to try it ..I'm just back today on it after my weeks break. I'm on a low dose so tolerating it well. .apart from eating too much ..but its the time of year for nice food.
Off to local pub today for lunch. New menu ..veggy toad in hole ! Gotta try it!

🐖🐖🐖🐖
Member

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

hi Carolyn, i agree with you about the grandchilden they really take your mind off...

i had no joy with e/e either and with everything else failing they are suggesting cape so i was glad to find this thread thanks to our late friend Moijan.

i hope you are feeling better now i missed you when you were off line.

hugs Ramade x

Member

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

It's nice to have a bit of banter as we all have daily problems to deal with but I try to have something planned however small each day ..otherwise to be honest I could sleep all day
Today been to a 70th cream tea birthday party in a remote little tea room. ..all knitted tea cosys and bone china cups etc. Just nice for us oldies !
Grandchildren are such a gift to have around. .they do give a focus which keeps us fighting all this.
💜
Member

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

Hi George and Caroline,

Thanks for your kind comments and support it's nice on here because you all get it and it makes me feel less isolated.

Good to hear you all planning some fun in your lives ladies without that we would feel even more sad. I am hoping to be well enough to go to my grandaughters school concerts I just love those events. They are 3 1/2 and 5 years old, both attending school in the Welsh Medium so are bilingual and correct my poor Welsh. Boo Hoo!. Best of all they sing in both English and Welsh it is so lovely to hear the kids all singing away in the choirs.

In the meantime I hope you are all getting as much fun as you can.

Be well and keep smiling.

Hugs to all

Happygirl

Member

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

Carolyn, try not to be too disappointed regarding your dose reduction. The same thing happened to me when I started Cape; it really attacked my neuts so I had to have a dose reduction. Neuts have since recovered and I am back up to 1800x2 a day. This is also due also to the fact I have put on weight-too much chocolate.🙄My onc did say Cape either works or it doesn't and he has patients who are on low doses.
Happygirl, sorry to hear you have been unwell. Hope you are feeling better. You have such a positive attitude and it is good news your onc has lots of other meds to try. That is the thing with Sbc, it is all trial and error until we find a treatment that suits us. Let us know how you get on and enjoy your retail therapy😊
Hope all you lovely Cape ladies are doing well. I am off to the ballet this afternoon to see the Nutcracker

George 🤗
Member

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

Hello happy girl
I'm sorry u are having trouble with cape ..I stopped denosumab 6 months ago after 3 years because it was really playing my teeth up ..but here in our area they only recommend 3 years of it anyway.
Hopefully there will be more treatments if cape isn't suitable ..I didn't do well on exmestance and everlimous but they might offer it to you and everyone is individual and copes differently.
Member

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

Hi ladies,

Just catching up on your posts as I have been cape-unwell-bed.  I'm sure you will be okay on a reduced dose Carolyn52.  My oncologist told me this week it was not dose dependant for good results so I hope you can remain on it for a' long spell' and get the benifits.

I went for my 3rd cycle on Monday but when my oncologist saw me she decided to suspended me for 2 weeks of cape and delay my Denusomab too.  I will be reviewed then and we will decide how I will move forward. Which is good because I have options and my onc has more stuff in her arsenal if cape is not for me. Yippee! 

On the positive side the drugs had already started to reduce the mets in only 2 cycles, so for you girls who are uncertain it works - it works great. So keep taking the peachy pills. 

My next plan is to join the Christmas Shopping with the others in this group as soon as I can, just in case the shops run out of goodies. 

Happy shopping to you all and by the way remember you need to treat yourselves too, I always feel better after Retail Therapy.

Hugs to all   

Happy Girl

 

 

Member

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

Oh Lynn. .poor you having a cold ..I'm trying to avoid crowds and people hugging me ..just to be sure.
I was on 1600 x 2 but now on 1300 x2 a day. Hope it still works some sort of magic still.
Member

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

Hi Carolyn

 

sorry to hear that your bloods are low.  I do know of a lady whose doseage was lowered twice because of early problems when she started Cape.  She was fine for several months and then they raised her dose because she put on weight, so you could still have a long spell on the pills.  

Was your dosage lowered by much ?

 

I am full of cold at the moment....getting better though.....so taking the rest and spoiling myself a bit

 

xxx

 

Xx

Member

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

Oh dearie me ...my bloods and platelettes were low today although I feel ok so I'm now having a reduction in dosage to 1300 x 2 a day.
Disappointed as I'm only on cycle 6 ...hoped for a long spell with the peachy pills ...
Member

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

Thanks for the advice. I’ll stick to my toast with coffee for breakfast and see how it goes.
🤞 x
Member

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

Hello
Well after 5 cycles of cape ..got my first dose of the "trots" yesterday. .not a big problem. .just annoying having to stay near the loo ..and we only have one upstairs. .buy I do have commode downstairs for emergency but haven't used it yet. ....
Soooo only eating plain food today. .pot noodles and tin rice pudding! Had planned a roast at the local pub but maybe later in the week.
I always have a muffin with early chemo pills and a cuppa soup. .once I forgot to eat something with the peachy pills and I did get a burning tum all day.

Member

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

Hi all

Good news regarding your TMs, Lynne. I have mine done every 3 weeks, but only ask for results every 6 weeks as it was becoming too stressful. At least it means that every other appointment is a relatively relaxed one.
Enjoy your week off, Carolyn, if you can. I think SEs are worse during our week off due to build up of chemo but, hey, what do I know? I am looking forward to an extra week off at Christmas as hands are becoming quite sore.
Feel the fear, when I asked my onc about food amounts, he seemed to suggest that a small snack was fine. I just had a piece of thick toast with my tablets this morning. Best to check with your team though as different oncs say different things.

Managed to survive the crowds yesterday. One hour of shopping and I am totally bored 😂

Have a good week all

George 🤗
Member

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

Good morning fellow Capers.

I’ve just read on the cancer research site that whether you have a full or empty stomach can affect how much cape gets into your bloodstream.

I had one slice of toast this morning. Is that enough?
I really struggle to eat a big meal at breakfast.
I’m wondering how much is enough. 🤔
Member

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

That’s great news lynn.
I don’t get TMs. Never been offered. I might ask at my next appointment.
I’m looking forward to starting cape tomorrow. 🤞
I’ve told myself it can’t be any worse than FEC-T.
Just want to get going with it now. X
Member

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

Oh Lynn. .what good news to hear. .cape seems to be wonderful for a lot of ladies .I shall be going clinic Wednesday to get my next load too ..having blood pressure and heart checked this time and of course bloods etc.
I did a lot of Xmas shopping in our big matalan yesterday so need to do some wrapping up now.
Member

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

Hi everyone...so good to see such a busy thread.

went to pick up my next cycle of tablets yesterday....which is my fourth.  I am very pleased to say that my TMs have gone down again by nearly half,,this is the second reduction in six weeks.  The nurse was nearly as pleased as I was.

 

hope everyone else has such good results and that you are as well as you can be

 

xxx

 

 

Member

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

It's good to get this thread busy again as cape is a very popular treatment and we are all cape crusaders fighting this disease.
Well tonight is my last pills for a week. .won't miss the pill taking but will hate the withdrawal from them ..they must come out the system quickly once we stop. ..
Well enjoy your weekend ladies and the peachy pills
Member

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

Thanks for replying George.
I start cape tomorrow. I’m trying to be optimistic it’s going to work for me.
I like your kitchen plaque. Wise words.
Good luck tackling the crowds. I hate them too.
X
Member

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

Hi all

Good to see the thread is so active as it did go quiet for a short time. The theme seems to be to live our lives and make plans which is a good one. I plan from scan to scan and every 3-6 months I create a photo book of all the good times which I can look at when I am feeling down, makes me realise that I am living with cancer. Don't want to come over all 'Pollyanna' as, like most people with this diagnosis, I do have bad days; however, I also have a plaque in my kitchen which reads: 'the brave do not live forever, the cautious do not live at all' which helps to keep me motivated. I love little sayings like that.
Feel the fear, in answer to your question, Cape was very effective in tackling my liver mets. Over the course of almost two and a half years, I have had 5 liver mets. All, apart from a dot, have disappeared so Cape did work for me, thankfully. As I keep saying, I don't know how much longer I will have on this treatment, but I intend to plan some 'feel good' activiites before the next scan in February. I hope your treatment goes well.

Have a good weekend all with minimum side effects. I am off to brave the High Street in Chester, not sure how long I will last as hate crowds.

George 🤗