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Xeloda / Capecitabine - Your Top Tips, please?

Stillhere
Member

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

Hi Milly, I'm not medical but have had lots of different treatments both for primary and secondary BC. My experience of Xeloda was really good, it worked for me for 2 1/2 years and all I got was the hand/foot syndrome. No hair loss at all. Every patient gets a dose of tablets based on your weight and this can be adjusted if your side effects are too severe. My hospital had a regime of 1 week on/1 off so SEs were very manageable.

If you read through this post everyone's symptoms vary but for me it was SO much easier than IV chemo!! I was gutted to come off it! Good luck whatever you decide xx

Milly216
Member

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

Hi I've been told I need further chemo following taxotere and a mastectomy as my tumour was grade 3, aggressive and triple negative. I don't know for sure but I've been told chemo will be in tablet form so I'm guessing it will be Xeloda. 

 

I am undecided as to whether to accept this treatment. I have no lymph node involvement and no evidence that it has spread so I am reluctant to go through further chemo to mop up cells that may not even be there. 

 

I am am wondering what side effects I can expect. I didn't suffer too much on tax so am hoping this might indicate I would be the same on Xeloda. 

 

To to be honest, my main concern is hair loss. I found this extremely difficult to deal with and now my hair is starting to grow back, I am reluctant to lose it again, or even slow its growth. For me, this would be reason enough not to go ahead. I know this is stupid and I wish I was strong enough to deal with it but I don't think I am. 

george
Member

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

Hi Barton,thanks for replying. Yes, small is always good. Cape has shrunk my biggest liver met to 6mm so I am hoping it continues. It is good that your bone mets are barely visible. In this roller coaster of cancer, always good to cling to the positive.
george
Member

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

My oncologist said he doesn't use TMS with all of his patients as they can be unreliable. However, mine have been reliable so far in showing whether chemo is working or not. To be honest, they just add to my stress levels as every 3 weeks I start worrying about whether the TMs have gone up and then every 3 months it is scan anxiety. I am also changing hospitals next month, should have been this month but there was some confusion and I didn't get an appointment. All sorted now and will be staying with same Onc although journey will be much further.
Enjoy the weekend all 😊

George
Barton
Member

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

Hello George, no, I don't mind you asking. I have a couple in my womb, which is how I discovered I had mets - I started bleeding again, after a good few years of the menopause. I went straight to my GP, and she was very good - I had investigations at the hospital within a few days. 

 

I now also have mets in the lymph nodes under my left arms, and also now multiple minute bone mets in hips, spine and left ribs. They are so small though, that they can't even show me on my CT scan as it takes an expert to spot them - which is good, I suppose. In fact, I found out yesterday at my Onc appointment that that is why my Onc has my TM results - as a way of assessing my progress, either way.

 

Hugs. Barton.x

 

 

Moijan
Member

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

Hi Annemay, yes, re tumour markers....its wierd because mine does test for them and did whilst I was on cape,  I have bone mets and liver mets. Not sure why other oncs dont se thrm! 

 

My guess is that oncs being doctors have their own little preferences...the tms take a while to do, so they. May be expensive!

 

when i read that a few ladies were told that te onc doesnt use them for bone mets..I asked MY onc..he said 'well, we know 'your'  cancer growth/activity Does get reflected in the tms. Maybe its the type of cancer? Mine is lobular and Oestrogen positive.

 

Moijanxx

Anneemay
Member

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

Thanks George that is really helpful and seems more manageable. Good to hear that your tumour markers are falling and that Cape is working for you. My oncologist does not seem to measure them, not sure why. 

Hope that you have a good weekend as well. Ann 

Marirose
Member

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

Hi Barton

Sorry to hear about your sore fingers as you remember mine got quite bad and while i was in France I was useing a hand cream a retired nurse gave me. It is like going back to your old remedy vaseline although it was petroleum jelly it is called Creamy petroleum jelly with vitamin E by Cotton Tree it did wonders for my hands so I have bought more off Amazon. I tried Udderley Eucerin Boots number 7 and other expensive hand creams all didn't help this was not expensive.

 

I am glad you are still doing well and i hope the reduction will help you.

Love and ((((hugs))))  xxx

george
Member

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

Hi Barton, you have had a really good run with Cape which is really encouraging. Good news it is being so effective for you despite sore fingers. Knowing treatment is working makes SEs easier to tolerate. If you don't mind me asking, where are your mets? I have bone and liver.

Have a good weekend

George x
Barton
Member

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

Hello Anneemay, George beat me to it! If it's any help, I really don't like breakfast, and when not on the pills, I don't eat it. When I take my pills in the morning, I usually just go with a Sainsburys small rice pudding, or one of their chocolate muffins. I find that plenty - just enough to get my digestive tract moving! However, if you are still having problems with nausea and sickness, it might be best to eat a little more. I think it will probably be a case of just experimenting as seeing what works.

 

Hope this has helped a little.

 

Hugs. Barton.x

Barton
Member

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

Hello George - yes, very sore fingers this last week - ongoing at the moment. I have completed 12 cycles since restarting on Cape, so 36 weeks. The Onc said that this is a good run before having a little rest - apparently I have done quite well. Good luck with your current/next cycle, George.

 

Hugs. Barton.x

george
Member

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

Hi Anniemay, just seen my oncologist and asked her that question for you. She said eating little and often is the best thing to do while on chemo and it was fine to take Cape with a light meal such as a sandwich. Hope that helps. Might want to check with your own oncologist, but it sounded like good advice to me. I had some good news in that tumour
Markers are continuing to fall while I have been on Cape; they are the lowest they have ever been. 😊Fingers crossed it keeps doing its job.
Have a good weekend all

George x
Anneemay
Member

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

Can I just clarify that when the Cape instructions say "take with a meal" they mean a proper meal and not just a snack like a piece of toast etc. as we normally eat our main evening meal between 6-7pm so if I need to space the doses 12hourly I need to be eating breakfast between 6-7 am. which to be truthful I don't fancy eating that early. I am not generally a person to go back to bed once I am up and at the moment my sleep pattern is not very good. Any suggestions gratefully received. Ann xx

Anneemay
Member

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

Yes they gave me Loperemide so I am well prepared, hopefully I will not need it. I hope your fingers heal quickly and your more comfortable soon. Hugs Ann

george
Member

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

Hi Anniemay, sure you will find lots good advice on this thread, I certainly have. Regarding big D, it doesn't affect everyone and Loperamide is very effective. I always have it to hand, just in case. Flexitol is also good if you get cracked heels. Otheriwse, I have to say, once you get used to it, Cape is very doable.
Barton, sorry to hear you have sore fingers. Hope they settle down soon. How long have you been on Cape?
Have a good weekend all

George x
Barton
Member

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

Hello Ann, good luck! I hope the hospital gave you some Loperamide tablets for the big D! They work really well (on me, anyway, and on George!).

 

I have been to the hospital today for my next lot of tablets. They let me take them away with me but I am to have an extra week off due to sore fingers. I am to start them a week today. They are then going to look into reducing my dose slightly for the breathlessness and sore hands.

 

Hugs. Barton.x

Anneemay
Member

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

Well here goes, I take my first dose of Cape this evening 1800mgs to try to dry up pleural effusions which are being managed with PleurX catheters, I had inserted in March this year. I have ordered the Udderley cream from Amazon recommended by members on the forum, which I have found so informative. I have always had a very sensitive digestive problem bordering on IBS so I am not looking forward to the possible se that may occur with Cape. I have also heeded some of the advice posted on the forum in relation to the big D and have prepared  by stocking up on wet tissues !!!! Just hoping now that Cape will be effective by reducing the amount of fluid currently draining between 300-600 mls each side every 5-6 days, so that I can have the catheters removed. Ann

george
Member

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

Hi Hinchy

 

glad things have settled down; it is always an anxious time when you have a change of treatment. I don't have problems with nausea, but I do suffer from a dodgy tummy so never leave the house without my Loperamide. Sticking to bland food too which is not always that appetising. Have also discovered Flexitol,which I have been using on my feet- it was recommended by someone on this site and I have found it to be very effective. Good luck for Friday. Sure onc will be able to help with side effects

 

George x 

Barton
Member

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

Excellent, Hinchy. So glad you are finding things a little easier! Hope it stays that way, or improves further.

 

Hugs. Barton.x

Hinchy
Member

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

Hi ladies thanks very much for the tips. I'm still struggling with nausea but managing to eat little and often. Off to see my onc on fri so fingers crossed he will have a plan for me! 

Love hinchy x x

george
Member

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

Hi Waffles

 

enjoy your new coat and jumper. Sounds like you are preparing for winter. Me too.  Meditation was very relaxing. We don't lie down, just sit in a chair as instructor takes us on a journey. Also, had reflexology today which was so relaxin ing I fell asleep and woke myself up snoring. Bit embarrassing. 

 

Have a good week 

 

George x 

Waffles
Member

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

Hi George and Carolyn,
Nothing like spending a bit of money to make you feel better. I now have lovely mew coat and jumper.
Meditation sounds lovely George. Not sure I'd be able to lie on yoga mat due to bones though. xxx
george
Member

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

Hi Waffles

 

Well done you for all the retail therapy; it does make you feel good. I am loving my new jumpers. Let us know how the new chemo goes, pleased it is working well so far. 

Off to see Blood Brothers in Birmingham on Wednesday- one of my 'feel good' therapies. I went to a medication class today which was wonderful, so relaxing.

Have a good week everyone

 

George x 

Carolyn52
Member

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

Waffles
Good girl ..keep up with the retail therapy don't let us down ...it has to be done.
Glad u feeling ok on the new chemo too.
Hugs xx
Waffles
Member

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

Hi George,
Was shopping this morning too. Third day of retail therapy on the trot. Feeling good 😀 xxx
sarah66
Member

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

Hi all , just started my second cycle of capecitabine, the week off was nice not having to take 5 tablets twice a day. I had felt fine so far a little more tired than normal but manageable, I am just waiting for the dreaded diarrhoea to come but fingers crossed. Best wishes to all xx

george
Member

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

Go for it, Waffles. I treated myself to 2 new jumpers and a pair of new shoes at the weekend. 😊We need things to cheer ourselves up, I do anyway.
George x
Waffles
Member

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

Thanks George,
Yes a little bit of retail therapy always helps, doesn't. I think I might need some today too. 😊 xxx

george
Member

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

Hi Deedeepuss, the Udderley Smooth cream I use is extra care 20 as it has more urea in it. Your smoothies sound delicious, something I must get into.

Hinchey, sorry you have had to join us. I can only echo what the others have said regarding SEs. My oncologist said he had to reduce the dose in 90 per cent of his patients and that a reduced dose is just as effective. This was also echoed in a booklet I found on the Breastcare website about Cape so I would talk to your team about the side effects, don't suffer any more. Cape does seem to be an effective treatment as it has shrunk one of my liver mets by 50 percent in a short time so fingers crossed it continues. I don't like taking the tablets so, ridiculous as it sounds, I have renamed them cancer killers which helps psychologically. (CKs for short) 

Waffles, pleased that the side effects of your new chemo are not too bad and that you have managed some retail therapy. It is a shock when the treatment stops working. I was devastated when Taxol stopped working

as, like you, I felt quite well. It is difficult when we have to start a new regime, but you seem to be doing well. 

 

Have a good weekend all. 

 

George X 

Waffles
Member

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

Thanks Carolyn and Barton,
I'm a little achier than I was but not too bad. Funny thing is though is that my feet have got worse since I stopped cape and I have a big crack on heel. Obviously, just a hangover of the cape as this isn't a navelbine s/e. It should clear up shortly with some urea cream. But pretty much feeling fine otherwise. Hope you both are keeping well too. xxx
Barton
Member

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

Hello Waffles, we were sorry to "lose" you from this thread, but I'm so glad you are doing well on the Navelbine! That is really good to hear. Keep it up.

 

Hugs. Barton.x

Carolyn52
Member

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

So glad u r well waffles ..you must be feeling ok to attempt lunch and shopping on a Saturday !!!! I'm envious ..wish I could join you.
Xxxxc
Waffles
Member

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

Hi Carolyn,
Thanks for asking. You are very kind no wonder you are a community champion. I've been following the forums but haven't really felt like posting. I must admit I was knocked off my feet when I found out Cape wasn't working as I had been feeling so well on it.I'm now on navelbine which is another oral chemo and seems to be fairly easy side effects wise so far. I'm gradually getting back on track and am going to spend the afternoon going for lunch and shopping. I'll get back into the word games in the private forum this evening I think and will get back to posting again very shortly.
Best wishes xxx
Carolyn52
Member

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

Waffles.
I know u r not a cape crusader anymore but if u r still dipping in here ...how are you with the new chemo you haven't been posting for a while and hope u are well.
Carolyn xxx
Carolyn52
Member

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

Hiya Denise
Just gatecrashing but it's so good that u r coping well and returning to work on a phased return. Well done ..2016 has not been a good one but hey hoo its nearly over and hopefully 2017 will b a better one for you.
Carolyn xxx
Deedeepuss
Member

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

Hi

 

Thank-you for advising get on the udderly cream, I'd looked on Amazon but there were all sorts, shea, urea! 

 

I've just finished my 2nd cycle, and feel better than the 1st round.  I've found that fruit smoothies help when you don't really feel hungry. I've been blending oranges, banana,  strawberries, apples, melon, all sorts with a little water.  My friend throws in some watercress too, I tried it and it is really nice and refreshing. I haven't tried it yet but my friend also freezes some chopped pineapple and blends that in and says it's really good. Will try that next week.

 

I'm going to work next week to discuss a phased return at the end of the month. It will be slowly slowly.

 

Enjoy the weekend

 

Xxx

Barton
Member

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

Soory you have had to join us, Hinchy, but welcome. I can sympathise with your se's, but I haven't suffered that badly, and have had absolutely no nausea or sickness. Moijan is right - please speak again to your Onc and perhaps ask for a slightly lower dose, or an adjusted timetable (the Americans seem to use the 7 days on, 7 days off regime - that Moijan was on - a lot). My dose was lowered slightly after my first 10 cycles because I was suffering from extreme breathlessness by then, however I continue on the 14/7 day regime.

 

Other than that, all I can suggest is also Moijans suggestion - that you make sure you eat plenty when you take the pills. That has 2 effects - firstly, it helps the pills activate and do what they are supposed to do, and, secondly, it is supposed to minimise the sickness (can't answer for that of course).

 

I hope this is some help, but sorry I can't offer more.

 

Hugs. Barton.x

Moijan
Member

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

Deedeepuss

 

hi, 

Udderley Smooth is the original and best, it has tubs with pics of cows on...see Amazon

 

moijanxx

Moijan
Member

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

Yes Helen. My first cycle was dreadful..kept a journal and wrote 'life isnt worth living' the onc reviwed, made the dosage one week on, one week off and reduced the dose. It worked well. For almost two years on the new regime. I think they bump you on the highest dose for your weight to see if you can tolerate it.

 

keep mobile, eg do not lie down for a day, walk about every hour or so...as i got a dvt, as a result ofnot being mobile, the antisickness tabs also are s/e dvt, which isnt everyone but i was unlucky

 

Take the tablets with piles of food too, that helps. You could try milk or soups if your not hungry, or just gorge yourself on things you do like..I think it works better with food.

 

use a lot of cream on fingers and feet.

 

imiss cape, it gaveme such freedom. I carried the antisickness, anti diarrhoea and wipes around with me all the time as was at uni( also spare knickers...tho i didn t need them.)

 

its a good drug, try and negotiate the dose change/weeks.  Love and hugs,

 

Mojanxx

Hinchy
Member

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

Hi Ladies

 

Im just wanted to reach out to you Cape ladies !

I have just coming to the end of my first cape cycle (diagnosed with liver mets and additinal bone mets three weeks ago) - had previously been on hormone therapies for mets on my spine for the last three years. Im 40 years old and I have to children ages 5 and 8.

I have found it unbearable - I have had the most overwelming nausea, lack of appetite lack of taste. I got to the point where I was becoming scared of taking the tablets (also as the nausea didnt help!). Over the last couple of days my feet have been very very sore to the point where I was having difficulty walking.  

The docs have given me lots of antisickness - ondansatrom and it did help a little but Im just not going to be able to go on as I have been .

I just wondered if any of you lovely ladies have any pearls of wisdom!

Lots of love Hinchy xx

Barton
Member

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

I am just wondering how Corey is. Has anyone heard from her? She started Cape a little while ago, I believe, but haven't heard how she is getting on.

 

Hugs. Barton.x

 

Ps - scrap that - have just reread one of her pm's and she is on IV chemo. Still wondering how she is doing, though!

Barton
Member

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

Well done, Denise, for the excellent drop in tumour markers! That is such good news! Long may it continue.

 

Hugs. Barton.x

Carolyn52
Member

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

Hello Denise
Gatecrashing here ..just to say its nice to see you posting again and coping with cape so well. There is so much help here so I'm sure you will get plenty of replies.
Sending you hugs
Carolyn xxxx
Deedeepuss
Member

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

Hi

 

I hope you had a good weekend George. Weathers been cooler but pleasant, hope Scotland shared the blue skies with you.

 

I'm on my 2nd round of Cape, so think I'm officially a Cape Cruise derived now, albeit a newbie to the drug. I've been using Ave enough,  but not over keen on the oatmeal odour. I believe Udder cream is really good, but there are so many different ones. Can anyone enlighten me on which one is good Please? 

 

Yesterday was the first day I felt like me since radiotherapy, so feeling better. Had my blood cancer marker result yesterday too and it's dropped by 7, something I wasn't expecting. I thought it would continue to rise for quite a while, so was extremely surprised and really happy. 

 

Big hugs

Denise xxx

 

 

george
Member

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

Thanks for all your good wishes. I know I am on the cancer roller coaster so will take the good news when it comes to help compensate for all the bad times. (Sorry if that sounded a bit heavy) Also, good is that it is my week off from Cape. Off to Edinburgh for few days tomorrow. Packing the Loperadime, but good not to have to pack my peachy pals- although it will feel weird going without them as they have become so much a part of my daily routine. Have a good weekend all x
Moijan
Member

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

Fantastic News George.....so very happy for you.

 

enjoy your success

 

love Moijanxx

Barton
Member

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

George, know what you mean about the Magic Pills - I take some everywhere with me, too!

 

Hugs. Barton.x

Marirose
Member

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

Brilliant news George all that worrying was worth waiting for enjoy your celebrations.

 

Love and (((hugs)))  xxx

george
Member

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

Thanks Barton and Waffles. Yes, I will enjoy good news while I can. Was really despondent when Taxol failed although i was on it for a year. I have been anxious waiting to see whether Cape would work, you never know. Worth putting up with dodgy tummy if it is working. Loperamide is my new best friend. We go everywhere together. Have a good weekend and good luck with new treatment, Waffles. X
Barton
Member

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

Thats wonderful news, George - well done. Stress over for the next 3 months now! Relax and treat yourself to something (be it wine or chocolate, or maybe both!).

 

Hugs, and so pleased for you!

 

Barton.x