cancel
Showing results for 
Search instead for 
Did you mean: 

Xeloda / Capecitabine - Your Top Tips, please?

Member

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

Hi George,
Sorry to hear you have got side effects but as the others say if the drug works for you there is a lot of leeway with the dose. I am on 1500mg twice a day which was my starting dose. xxx
Member

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

Thanks, Nicky. Cape certainly seemed to work for a good length of time for you. What are you on now? My Onc is lovely. Seeing chemo nurses on Monday as he is on leave. I am on 2,150 mg twice a day so 5 tablets. 4 quite big ones and one tiny one. I prefer the tiny one! Have a good Sunday. I am off for a short walk in the sunshine now.

George x
Community Champion

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

Hi George 

I agree with Barton. The dose is set individually and based on total  body mass ie weight x height so the dose you are on can be very different to the dose someone else is on. I started at 100% dose (can't remember exactly how many peachy pills that was!) and went to 80% very quickly. Your oncologist will want to find the right dose to keep you on the tablets rather than taking breaks when side effects get too bad so I'm sure will listen to you. I found I was always asked by my onc how I had been each cycle when I picked up the next set of tablets and had a few chemo breaks, ie extra weeks off, when the hand and heel problem became too bad. The 80% dose was effective for the remainder of the 18 months that I was on Cape, liver mets shrank, bone mets stable so don't stress if the dose gets dropped!

Nicky x

Member

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

Thanks, Barton. Know I am being a fuss pot, just got used to all SEs of Taxol ànd now trying to adjust to new chemo-will get there eventually. 😉
Member

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

Hello again, George. I started on a dose of 4000mg (2000x twice daily), but that dose was reduced after my first 7 cycles because of severe breathlessness. I believe the dose is based entirely on body surface area, which I think they calculate with a formula using your height and weight. So everyone will be different. However, I had read quite a lot before I saw my Onc after that 7th cycle, and had found that a reduced dose can work quite as well as the full dose. I think Oncs tend to start you on as high a dose as the formula says, and then adjusts as necessary.

 

Hope this helps.

 

Hugs. Barton.x

Member

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

Hi Nicky / Barton

 

Thanks for your feedback. Things have eased up and I have had a relaxing day. Think diet of toast, banana and rich tea biscuits have helped (along with the big D tablets). Just got worried as, usually, 2 Imodium would solve the problem when I was on Taxol, but needed 4 of the blighters today (hope this is not TMI - think hubby has had enough of hearing about my toilet issues!) I also worry that the big D might interfere with the effectiveness of the chemo. Anyway, due to see chemo nurses on Monday so will relate all this and fingers crossed bloods okay too. Won't know if Cape working until end of month when I have a scan and see onc.

Hope all well with everyone else on Cape and thanks for 'listening' to my moans.

Just wondered, what dose of Cape  you are all on as onc said he woudl reduce my  amount if necessay.

 

Enjoy the rest of the weekend and thanks again

 

George x

Community Champion

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

Hi george.

I found I had dreadful diarrhoea the week off after my first cycle of Cape, completely threw me! However it wasn't so bad every other time. I did used to get it occasionally but just realised that it may happen and to be aware of any warning signs. It was never so bad that I had to take anything so I hope that you will get over this quickly and not suffer so much again. I'm sure it's down to our bodies adjusting to the chemo as I also found I coped better on Cape the more cycles I had, it definitely  wasn't a cumulative  effect.

Nicky x

Member

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

Hello George, sorry to read you are suffering! Actually, I am currently finding that any se's are at their worst on my week off, and not so bad the following week (first week back on pills). I suppose it is a delayed reaction - in a way it makes sense as the two weeks of pills reach their maximum effectiveness, and then ease off after the rest week. Yes, I need the Loperamide quite often, too! I call them my magic pills! I always keep some in my handbag so I have them if needed.

 

Hope things ease off for you shortly.

 

Hugs and best wishes to you and all other Cape friends. Barton.x

Member

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

Knew I was tempting fate by saying SEs not too bad. Just been struck down by diarrhoea, on my week off too. Taking Loperamide and dioralite and have phoned hospital for advice. Did this happen to anyone else on their week off? Thought things would be easier. Any tips gratefully received.
Member

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

Sorry to hear that, Marirose; it is always unsettling when treatments stop working. I was in a similar situation when Taxol stopped working for me and I was diagnosed as having progression to the liver. All the very best on your new treatments.
George x
Community Champion

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

Hi Marirose, sorry re the Capebreakdown. I hd vinorelbine, its a good chemo, but only worked for a few months for me...maybeyou will fare better. .good luck with the Mri....time for a little water treading? Maybe whilst you consider.

 

love and hugs

 

Moijanxx

Member

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

Hi Marirose,
Really sorry Cape has stopped working for you It's never a nice thing to be told you have progression but it's good to know you've got three such 'heavy hitting' drugs to chose from. (((hugs)))
Member

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

So sorry Cape has failed you, Marirose. It seems you have been given a fair choice of future treatments, so I hope the one you choose works for you for a long time to come.

 

Hugs and best wishes. Barton.x

Community Champion

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

Marirose
You know me ..useless really at advice but if epirubicin is the "E" bit of the FEC chemo which most of us have had at primary stage , I read on another website that oncologists are having good results with it as a sole chemo as its been tried and tested for years.
Thought that bit of info might help.
Xxx
Community Champion

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

Hello everyone

Sorry to say I am no longer on cape it let me down big style I now have multi mets in the liver and issues elswhere. I don't want to sound negative to new comers I did have success at the beginning my chestwall tumour shrunk considerable.

My new treatment will be decided next week and I am to have a MRI scan I have been given 3 treatments to consider Epirubicin Vinorelbine and paclitaxel.

 

I wish you all the best with cape love and (((hugs))) xxx

Member

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

Taking your advice, Waffles. Just had a Bowen session, very relaxing, and waiting for yoga class to start. 😊
Member

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

Have a good rest tomorrow George and keep off your feet. xxx
Member

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

Thanks, Waffles. Probably spoke too soon as shattered today and feet starting to hurt. Oh well, week off starts tomorrow so I can get a lie in. Also, looks like it is going to be a sunny day which is always good :-)

Member

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

Hi George,
Really good to hear you enjoyed your holiday. Also great that your not having too many side effects from Cape .Long may it continue. xxx
Member

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

Hello Sarah, welcome, but sorry you have had to join us. The only advice I can give is to read back through this thread. There has been some very good advice from some fantastic ladies. Cape has worked for a long time for some, so is a good option.

 

I take my tablets differently from Waffles - I take them with food, and have never suffered nausea or sickness, and I try to take them as close to 12 hours apart as possible (even going to the extent of setting my alarm for the early morning pills, then going back to sleep afterwards on a non-work day). I would say experiment, and see which combination works best for you. Do tell your Onc team if you get any funny se's, though - don't suffer in silence.

 

Hugs, and best wishes. Barton.x

Member

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

Hi Cape ladies

 

just catching up with thread as I have been in Cornwall for a week, had such a lovely time and the weather was wonderful. Took my peach friends with me and they behaved themselves as not too many SEs, certainly none that stopped me enjoying myself.

i have read about Ibrance and it does seem like a wonder drug so I hope we get it here. I was on Everolimus when I was first diagnosed, but it didn't suit me. I had dreadful mouth ulcers that were so painful I had to drink from a straw. Also, had a skin rash and mouth infection. Know it works for lots of people, but it was not right for me.

Sarah, I can only echo what Waffles said. I followed all advice from the ladies on this site and SEs not been too bad, just feel a bit more tired than usual and have had to watch the big D but think that goes with most chemos.

 

Have a good week all

 

George

 

Member

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

Hi Sarah,
Welcome to our little gang. My main piece of advice would be to takey our cape pills 20 minutes after eating. I had problems with nausea on my first cycle because I was taking the tablets at the same time as my food. Also, put cream on your hands and feet night and morning. I use Eucerin 10% Urea. It's quite expensive but some of the other Cape ladies can recommend other other types of cream.
Some ladies take their doses 12 hours apart. I sort of adhere to that, mainly to help my memory but sometimes I vary by 1 or 2 hours and it doesn't seem to have caused any problems as so far Cape has been working well. The important thing to remember to avoid toxicity is to always take your doses at least 8 hours apart.
Hope your first cycle goes well. Whatever question you've got I'm sure one of us will be able to help. (((hugs))) xxx
Member

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

Hi have seen oncologist today , lung mets increased in size and number so will be starting capecitabine soon , any advice ladies ? Had previously had FEC , Taxol and Gem / Carbo . X

Community Champion

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

Hi Waffles

just to say Ibrance is around £7000 per month!

 

Marirose, how lovely. iamnot married but have bern toGretna( long before it became such a big concern!) must have been you ger than 16when I went.

 

best Wishes, Moijanx

Member

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

HI Marirose,
How romantic, you were a Gretna bride! What a lovely story.
Goodness, I didn't realise everolimus cost the NHS £3000 per month. I bet Ibrance will be loads more expensive than that. I think Cape is relatively inexpensive though to the NHS as the patent has expired and because it takes no time to administer it like the IV drugs.
It's strange how we're all so different that some of us can get totally awful side effects from drugs and others are hardly affected. I'm starting to get a bit of bother with my feet being sore but the Eucetin has been stopping it get too bad.
Hope your appointment this week coming goes much better than the last. Will be thinking about you. xxx
Community Champion

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

Hi everyone I am still here

Waffles I didn't realise you lived in Scotland we love Scotland we have spent many happy times there. First time was when we eloped to Gretna just before the age of concent was dropped to 18 had many lovely memories.

I am glad to see you can still get Everolimus I was on it 16 months and it kept me stable it did cost £3000 a month for the tablets and while I was on it a survey was done asking for success stories from the scotish health service. When I was on it NICE was withdrawing it because of the cost anyone on it could stay on it but then they changed their mind and it was available to all so now it would seem they want to withdraw it again I wonder why.

 

I met a lady at the clinic last week who got chatting she was on cape but the onc had taken her of it for 3 weeks because she got some terrible spots like blisters on her forearm and her hair was dropping out and she showed me when she ran her hands through it. Her hands were fine nothing wrong feet ok too the spots were clearing apart from the ones the dog had ripped jumping up. She was such a happy soul and was taking it all in her stride she was also on herceptin which she had injected into her thigh

so maybe that may have caused it. She had been on it since June.

 

Love and (((hugs))) to all xxx

Member

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

Hi Moijan,
Sorry, I'm very guilty of not checking my messages so hadn't noticed you had sent them. I am just about to reply to them. xxx
Community Champion

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

Hi Waffles, yes, I have heard that Ibrance has had great results. I hope we get it soon and so many of us will benefit. I am on Eribulin, which has been working well.

 

i did  try to message you a few days ago, but not sure if your messaging is turned on?

 

i am pleased that Scotland has so many options for ladies like us. Do keep us posted re Ibrance coming out up therexx

 

hugs, Moijanxx

Member

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

Hi Carolyn,
I think my care has been good and I feel lucky to have access to these drugs.It's only this year that they became generally available here. When I got my SBC diagnosis last year I would like to have tried everolimus but it wasn't available. We still don't have access here to to Kadcycla which is suitable for Her+ patients. We also have much less access to trials compared to the big cancer hospitals in England. But all and all can't complain too much. I just wish that cancer drug prices weren't so ridiculously high and everyone wherever they lived could get access to them. xxx
Community Champion

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

Oh waffles ..you are lucky having access to those three drugs ...Scotland seem to be a lot more ahead on these things without penny counting !!
My best friends granddaughter lives in Scotland and has leukaemia and she says treatment fantastic there.
Fingers crossed for Ibrance soon for everyone .
Xxxx
Member

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

Hi Caroline,
I'm in Scotland so we can get prescribed Everolimus, Faslodex and Eribulin if we need ithem as the Scottish Medices Consortium (our equivalent of nice) have recently approved that they can be prescribed to anyone with SBC. I just wish that all of us in UK could get the drugs we need. I really hope we can all benefit from Ibrance soon. xxx
Community Champion

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

Waffles ..everolimus has now been withdrawn completely ..I saw it on the news last week so fingers crossed it might be replaced by ibrance .
I remember way back at my primary ..arimidex was a wonder drug as an alternative to tamox .. but once it was licensed it was prescribed quickly .
Xxx
Member

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

Hi Moijan,
My onc has said that the results for Ibrance are very impressive and that, assuming it is made available here, it would be suitable for me. I'm E+ and Pr+. He thinks it is a better drug than everolimus which he thinks overall has worse side effects. xxx
Community Champion

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

Yes Carolyn, i totally agree with everything you have said here...Apparently, if the NICE group ok'd it, the price would come down and vice versa..chicken and egg.

 

I did ask a lovely lady onc reg what groups it worked for..she was at the recent conference in the US where it was presented...she said the results were amazing for all Oes pos people and that she thinks it will be available by the end of this year because of this evidence.

 

Where NICE is concerned tho, there are no guarrantees...lets cross all our digits and our legs, and eyes!!

 

💙💚💜💗💛🌺🌹🌷🌸💖🌻✈️🛁

moijanxx

Community Champion

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

Moijan
These drug companies need to stop thinking about their fat wallets and think of lives being saved.
Yes a lot of ibrance patients do seem to get hair loss but it seems to be when its paired with leyrozole . The latest posting on inspire indicates it works better as a first line treatment not a last resort though.
Here's hoping though as lots of our ladies are all hoping for the chance to try it.
Carolyn xxx
Community Champion

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

Hi Carolyn, yes, I think the usa ladies...because they are all basically on private health care and pay their oncologists...have access to their records....I have been reading about Ibrance in detail and like evrryone rlse I hope we can have it here soon...it costs about £7000 per month...which is a bit outrageous. So I cant see that the NICE group will allow us all to have it until the price is reduced!

 

i was told that when/if I have 4 Failed therapies, they can ask for it on compassionate grounds..I think thats to do with the arrangement they had with the drug companies, but im not sure that Ibrance is still one of the drugs that were available earlier.   The other thing is.....Ibrance does have a lot of Netrapenia associated eith it...some trial results indicated 75% and also hair loss is quite common too. So im hoping this drug may get modified/improved at some stage.

 

hugs, Moijanxx

Community Champion

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

Hi ladies, 

 

yes Waffles, I too look at the inspire website and find it useful. I also watched the 'the truth sbout cancer'

seminars earlier this year. They were very insightful..they were about 90 minutes long and their first one was all about chemotherapy....these seminars were created by a group of usa oncologists and other proffessionals. they were very informative and gave me pause for thought.

 

I would say, tho that If you do decide to watch them...do think very carefully and chat to your oncologist before deciding to change or add any treatments. I had a long chat with mine and decided it was much safer to carry on with the treatment plan offered at my hospital.

 

 the one very helpful site I personally value the most  highly is 'Cancer active' administered by Chris Woollams. This one is very kind and very sensible. However, I always chat to my oncologist about any new suggestions and am guided by him. 

 

Huggy thoughts,

 

Moijanxx

Member

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

Hi Carolyn,
I hope Ibrance wiĺl be available generally soon . It would benefit so many of us. xxx
Community Champion

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

Hiya waffles
I also dip into inspire website and as its US based it surprises me how much info they have but I think I read that they have direct access to their records at their hospital!!
I like to read the updates on ibrance which is available there and only on trial here still.
Carolyn xxx
Member

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

Hi Moijan,
Yes, you are right. We are certainly vulnerable to what we read online. However, I do benefit from looking at the American Inspire Forum as it has a lot of very knowledgeable people postng and interesting info about new breakthroughs. I like to be informed about the treatments available so I can feel like I'm taking an active role in my treatment. I feel our own forum is so helpful with this too. However, just googling the internet exposes us to a lot of false information and quackery much of it, as you rightly say, unreferenced.
Please don't think your post read like a lecture. I always enjoy reading your posts and find them very enlightening. I think you are very generous to share your experience and knowledge with the rest of us. Keep posting.
Best wishes xxx


Community Champion

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

 

Hi Waffles, and everyone else.

 

i understand totally where you are coming from....id heard less than 10, but I recently checked with my onc and he said that they were very old statistics and that in the past few years so many new drugs/options have come out that things have really changed...and the thing is with statistics....1/ we dont know how valid the studies were that they are based on 2/ we dont know how ill people were at diagnosis....and 3/ most important....they are continually changing!!

 

 

Waffles, we do all go through these kinda thoughts.....I definitely do. There are times when I get despondent about all sorts of things.. some of your posts have been very helpful to me.

 

Regarding Google, well I search for things a lot on there, but i dont  rely on it for health info at all because most of it isnt referenced!

 

 Having said that....well,  even some of the studies that have been done have been criticised for having flaws. I am not en expert in anything - especially statistics, but I do have a lot of healthy skepticism, because we are all individuals, with our own lives, different experiences (and food fads) I just believe that almost anything is possible!  

 

For example, I was convinced that Cape failed for me, because id had a break( after around 23/12)

And that was why bc became resistant! But lovely Barton has had breaks and it has been fine, so im actually tempted to try it again if need be..!maybe it will work for me later if my bc changes its dna again!

 

I have edited this post because i just want to apologise if it sounds like a lecture.....its not meant to be.....

i get just upset because in our position, we are very vulnerable to all the info and rhetoric out there.....it always 'sounds' true...but it isnt always.

 

Love and huggy thoughts to everyone,

 

Moijanxx

 

Highlighted
Member

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

Thanks Ladies,
It's great to hear from people who were on Cape for a while. That makes me feel a lot better. The internet often gives the worst case scenario or out of date information. I remember when I was first diagnosed with IBC 10 years ago I read on a site that there was a 0% chance of surviving 10 years. I asked my onc of that was true and he said it was probably true only for people who didn't have any treatment. I should have learnt my lesson by now.
Best wishes xxx
Member

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

Morning everyone, hope you are having a good bank holiday. I don't often read this thread because I'm off  Capecitabine but I just wanted to say that I was on it very successfully for two and a half years! It's been my best secondary treatment so far so I hope that it works well for you.

 

Also, for anyone wanting anti diarrhoea meds, Superdrug do their own brand Instants, that just melt in the mouth and work really quickly, much cheaper than Immodium! xxx

Member

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

Morning Waffles. Glad you are only getting mild se's at the moment. Me too, and it's such a relief! Actually managed to do some walking yesterday, all be it with lots of sitting down inbetween (get back pain from compression fractures after a while).

 

Shame about the food aversions! The only trouble I have with food aversions is getting fed up with trying to find something to eat in the mornings with my pills! I hate having to have breakfast, and I really don't like biscuits, although have used those for pill taking for a while. What I don't like is having something with the pills that I like (ie rice pudding), but then ending up hating it because I have had to take pills with it!

 

Anyway, I hope we have put your mind at rest re length of time you are able to stay on Cape.

 

Hugs. Barton.x

Member

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

Hi Barton and Moijan,
Thanks so much. You can both be relied upon to give such good advice. I know I should stay away from Google as it can ruin my day sometimes especially when scans are coming up.
I feel well at the moment with only relatively mild side effects, the worst of these being food aversions. I do still have aches and pains but nothing too bad.
Thanks again ladies xxx

Community Champion

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

I was on Cape for about 23 months before it failed.  Think i also saw that quote about 'offering an average of 7  months extra time' somewhere , too Waffles.. But those sorts of estimates dont really impress me, because obviously it doesnt work for some people, but how do they know what exactly their initial prognosis was,,? I mean, maybe some ladies were very ill before going onto cape...and all of the ladies would have had different pronoses from each other, so we arent comparing like with like.

 

What im trying to say is, a little pinch of salt is required! Anyway, I wish you well on Cape, im quite envious!

 

huggy thoughts,

 

Moijan😎💜💙💚💛💗🌸

Member

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

Hello Waffles, I think you might have come across a myth. I have heard of many people being on Cape for years until it finally failed. There is an American site with a Cape thread that has some on there for years. I believe one of our dear ladies (since departed, I fear) was on it for 9 years (someone please correct me if I have that wrong!). I haven't been on it amywhere near that long, but I habe been on it for about 2 years, with an 8 or 9 month gap after the 10th cycle, when I was on Exemestane (which unfortunately let me down).

 

I know one lady was only allowed to do 6 cycles before her Onc took her off it, but she was told at the start that it would only be for 6 cycles, but I think that was probably a (very unfair) quirk of her Onc.

 

Hope this helps, and hope you are OK.

 

Hugs. Barton.x

Member

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

Hi all
Cape has been working well for me for 8 months. I read somewhere that if the drug works at all the average it does so for is 7 months. Obviously, I should keep off google but as I have a scan soon I'm a bit worried I may be reaching the end of the drug's usefulness.
I know that some of you have been on this drug before. I notice you said that Moijan and Barton too I think. How long did it work for you then. Best wishes
Community Champion

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

Oh, Tournesol, so sorry. Trust me to put my big foot in it, Thank you for sharing about your situation.

Lets hope you feel better soon. I had a lot of success with my Cape for quite a while. Hope it works well for you., Im also sure you are a much better patient than I...and I was referring more to being a patient in hospitals, rather than hospices...i have not been inside the doors of one. But, i am going to go to see my local one soon, as I have heard on here that they often have freebie treatments lke aromatherapy and reflexology, and other kind therapies and it appears staff are usually  lovely and supportive.......
Love to you

Moijan

Community Champion

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