Community Champion
Posts: 8,325
Registered: ‎26-10-2015

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

Hiya bel
I'm sure once you start cape you will feel better and able to do more. .I think I'm better now on it.
Only trouble is taking letrozole for 3 years. .I was always hot now I feel the cold. Maybe it's the cape or the heart pills I take but I'm sat here with a chunky jumper on and the heating ! Not complaining though. Also feel the ugg boots need airing .
Just got a scan appointment for 8th Dec. .think I will ask for results to wait until after Xmas as wouldn't want bad ones to spoil Xmas!
Member
Posts: 26
Registered: ‎24-07-2016

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

Hi all 

good to see so many positives around cape chemo. I have heard this morning that I can’t start cape till I’ve had liver biopsy with is now scheduled for 30th. Cape to start on 10thDec!

thanks for info on biopsy still a bit nervous but just want to get it started.

ive now had 7 weeks where I’ve been shaky, lightheaded and wobbly so not been able to do much without a place to lie down very nearby! I’m hoping that Cape will sort me out and make me able to get out and about more.

In our area we don’t have a SBC Nurse so I do feel very isolated. We so need one but no money! Apparently!! 

Mad when your support so well with primaries then bang once you get secondaries you’re on your own!

Hoping to get some further support from palliative care team at hospice.

Keep well everyone

Bel x

 

Community Champion
Posts: 8,325
Registered: ‎26-10-2015

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

There was a very interesting article about low dose of cape working really well for years ..it was on my Facebook page. .I will try to load it here for you to read. ..
Member
Posts: 11
Registered: ‎09-07-2017

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

H Kirky

Thanks for the info and link to the calculator tool, really good.

I don't think the dose can  be the same for everyone because we all seem to have different tolerances and some have other health problems. I am managing my SE's 'reasonably' well except the fatigue and I don't like spending day after day in bed unable to function because I feel so unwell most of the time. There seems to be many women who have or are taking reduced doses, so it can't be an exact science. AND holding onto that thought I will be able to move forward with the help of my oncologist and the lovely support of this community.

Keep smiling 

Happygirl 

Member
Posts: 74
Registered: ‎28-06-2013

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

Hi. Re dose. The max dose is 1250mg x BSA. Good calculator https://halls.md/body-surface-area/bsa.htm
I am 5 ft 10 in and 12 stone 6 so large and my max dose was 2500 twice a day. I ended up on 1500 and this kept me stable for 20 months. Good luck xx
Community Champion
Posts: 8,325
Registered: ‎26-10-2015

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

Hiya
I found on my week off the peachy pills ..tins of rice pudding helped me with the wobbles and tirednes s etc or sweet things ..it's not good medical advice but what works for me ..suits me !
Member
Posts: 11
Registered: ‎09-07-2017

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

Hi Lynnq

Thanks for your response and good luck with on your Golder Wedding Anniversary planning something to look forward to and enjoy.

I don't know how the medics estimate doses, I was told height and weight. I am 5 feet small and weigh 70k like you with gastrointestinal probs which were caused by first line chemo. We just have to trust them when they decide and hope they will adjust if needed. I hope your week off is as good as it can be and the big D goes away soon.

Keep smiling

Happygirl X

Member
Posts: 609
Registered: ‎10-10-2012

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

Hello Happygirl...interesting to see that you are on the same dose as I am.  The Onc told me that he was starting me on a low dose because I have gastrointestinal problem which causes diarrhoea and since it can also be a SE of cape he didn’t want to aggravate it.

I must say that I didn’t think that it was a low dose but I am quite tall (5’8”) and weigh about 72k so perhaps for me it is.

I am just coming to the end of my third cycle, starting my week off.  I am feeling tired and have the big D today so taking it easy.

Thanks for responding Carolyn - I think that I may be the same in feeling worse during my week off... a bit shaky as well today.

 

 I am also trying to get into Christmas mode,   It is our Golden wedding anniversary on Boxing Day and we are  having a family get together, just close family and our children will sort the food.   Hoping to have a bigger celebration in the early spring when people are more able to travel.  Really want to stay well for that...

 

Hugs  to all Cape users

 

xxx

 

Member
Posts: 11
Registered: ‎09-07-2017

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

Hi Caroline,

Good to hear your Cape is not causing too many problems and you have got to your 5th cycle (well done) after horrid previous treatments.

I'm just coming to the end of my second cycle but not sure it's any better only that I am managing the SE's a bit better. Like you I am finding 'Sleeping' all a part of the course but not eating so much as nausea seems to govern that even though I have tablets that help. I'm on the max dose for my hight and weight  2000 x twice a day. So I hope to discuss a reduced amount when I see the oncologist on 26th then the next cycle begins. I am determined to give it a go and apreciate all the sharing that goes on in this forum it really helps. Thank you.

Wishing you well as you continue your journey

Hugs

Happygirl

Member
Posts: 306
Registered: ‎30-09-2017

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

Cheers George! I’m looking forward to reading it, Kate x

Member
Posts: 328
Registered: ‎28-01-2016

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

Hi Kate,

Yes, she is the one. She was a vegetarian, marathon running deputy head when she was diagnosed. I found the book helpful, hope you do too😊

Have a good weekend all

George 🤗
Community Champion
Posts: 8,325
Registered: ‎26-10-2015

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

Shame on you Lynn. .not visiting us for a whole week ! I find the week off cape the worst. .although it's nice not to have to pop all the peachy pills. .I find myself extra tired and wobbly. .like withdrawal symptoms. I'm on day 5 back on and feeling much better again ..but I'm going to have to stop eating so much !
I'm in Xmas shopping mode at moment. .so trying to focus on other things.
I've always had long nails and manicured them regular but find my nails ate getting thin and have to keep them shorter now ..feet ok and hands ok too ....
Hope all the lovely cape ladies reading aRe coping as well as I am ....
Member
Posts: 306
Registered: ‎30-09-2017

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

Hello George, I’m not on this treatment but often read the thread. Is this book by one of the women who does the ‘You, Me and the Big C’ podcast? I only know the name of Rachel, who used to present the news on bbc5 live and sadly died recently, but I remember one of the others has bowel cancer. Thank you for the recommendation, will definitely order a copy. Enjoy your weekend, Kate x

Community Champion
Posts: 4,507
Registered: ‎01-05-2012

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

Hi BJR324

I have had 2 liver biopsies done, around 3 years apart. They are usually just a day case and done under local anaesthetic with sedation if you need it. You need to fast beforehand and afterwards. The procedure is usually done using ultrasound guidance so is done by one of the radiologists or whatever their actual title is. It is u comfortable rahrt than painful and is a bit of a weird feeling. Afterwards you have to lie flat for at least an hour, possibly 2 (I can’t rmember) to make sure there is no internal bleeding. You can then gradually sit up and I think I went home about 4 hours, maybe more, after the procedure was done. You should have some one to drive you there and be with you once discharged.  There is some more,aides who’ve had this done, some more recently that me, on the  treatments and medical issues part of the secondaries part of the forum under ‘Ablation or liver resection’.

Good luck with Cape, sorry to hear docetaxel didn’t work well for you.

Nicky x

Member
Posts: 609
Registered: ‎10-10-2012

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

Hello again everyone- some good reading on here for me today.  Have not visited for a Week or so.

I am on my last day of my third cycle on Cape...well I take the last tablets this evening and then have my week off.

Today I am feeling tired and a bit achey but on the whole my SEs haven’t been too bad.  The tips of my fingers seem to be getting a bit dry and flaky but my feet seem to be okay.  I sometimes feel Nauseous often a biscuit helps, but if not I take an anti sickness pill but not many in a week.  My mouth is a little sore but not massive ulcers like I had on the E & E, I have a teaspoon of Manuka honey each day and I think that helps. Obviously I am hoping for a lengthy period of time on Cape especially if my SEs remain tolerable 

 

I have read so many posts today and I am sorry I can’t remember all of your names,  But thank you all for your input it really does help to not feel alone, especially on the ‘down’ days

 

Your posts and advice are very helpful CAROLYN and I will certainly look up the book that you recommend GEORGE.

 

 

Hope everyone is as well as they can be and all of the ‘new’ ladies get on with this treatment.

 

xx

Member
Posts: 328
Registered: ‎28-01-2016

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

Me again, sorry. Just wanted to recommend a book I have read by Deborah James called 'F*** You Cancer.' She was diagnosed with stage 4 bowel cancer at 35 and writes about her experience in a non preachy or judgemental way - no mention of drinking 10 kale smoothies a day. Yuk. I think it is the book I would have liked to write had I the talent to do so. Anyway, a lot she said resonated with me, especially as the focus is on living with cancer. Just a suggestion.

Have a good weekend all. I am off up north: Manchester tomorrow, Leeds Saturday and Sunday. I suspect I will be visiting a few German markets. The one in Birmingham started today.

George 🤗
Member
Posts: 328
Registered: ‎28-01-2016

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

Hi BJR

Sorry, can't help with liver biopsy question. I was diagnosed with bone and then liver mets. Cape, over a period of over 2 years, got rid of 5 mets and reduced one to a dot. Got scan results on Tuesday so will see if it is still working. Cancer likes nothing better than throwing a curve ball when you least. expect it.
I found the initial cycles of Cape left me feeling tired but, after that, my body seemed to adjust and I generally feel fine apart from sore hands and feet. I had my dose reduced after big D struck during my week off. I am now on 1800 x 2. However, my onc once said Cape either works or it doesn't so don't be too worried if you need to reduce your dose. In my case.it was as effective when I was on 1500 × 2 as when I was.on 2,150×2. I have had a few adjustments during my time.on this treatment.
Hope SEs are not too bad for you and please feel free to ask questions as there are lots of ladies on this site who will be happy to help.

George
Member
Posts: 328
Registered: ‎28-01-2016

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

Thanks for your kind words, Carolyn. You offer lots of support and guidance, especially to newbies. Yes, my feet are pretty awful but I do find Sketchers a big help along with my gel socks and moisturiser. Anyway, I have never been what you would call a
Cinderella. 😂
Glad to hear Cape is being kind to you; it is the 'easiest' treatment I have had. Like you, I suffered when on the E and E combo.

Have a good weekend

George🤗
Member
Posts: 26
Registered: ‎24-07-2016

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

Hello everyone

I’m just joining this thread as I’ve been on Docetaxel 6 rounds which finished in July for liver mets, all ok for about six weeks then felt really poorly, GP thought it could  be flu, amongst other things, but eventually after a CT scan last week, was told by oncologist that I now have extensive mets to liver and also in lungs too. On the plus side bones stable!

I’m rather gutted, waiting now for start date for capecitabine. He also wants to do a liver biopsy to check it’s still the same as my primaries from 2005. Can anyone give me any info on liver biopsy, bit scared!

Im hoping that Cape is easier than docetaxel as I found that really hard and disappointed that it didn’t really work! 

reading though post it seems that lots of ladies find it easier if the dose is right. I’m starting on full dose so a bit worried.

Any advice would be very much appreciated.

keep well everyone

 

 

Community Champion
Posts: 8,325
Registered: ‎26-10-2015

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

Hiya George
I love your wording lizard feet ..that is so correct and normally I would be wearing my boots by now but the sketchers are my go to every day for comfort too. Keep posting as you are an old hand at this peachy pill lark and very hrlpful to us newbies. ..