Hi, I have just taken my first dose of capecitabine! Thank you for all the tips and hints on here. It has helped me prepare for today. Fingers crossed the se’s are minimal as I have only just started to recover from doxetaxol.
I have spinal and pelvic mets that are causing so much pain so I am hoping this chemo will help relieve this discomfort. Any advice is most welcome xxx
<Empty imported post>
Good Luck to all. I’ve just received another ‘all stable’ CT result. I’ve been on Capecitabine since April 2008.
Great news Belinda!!! Have a wonderful stable summer!
Laurie x
Hi, hope everyone is feeling OK. Excellent news for you Belinda, also welcome to Rachel, I am going to take a wild guess here, are you aged 37?? If so great, thats my age too.
Wishing everyone a lovely and well Julbilee
Sam x
Hi Sam and everyone else! I was 37 when I first joined but about to be 41 on tuesday!!
I have started on 1800mg twice aday, no major se’s yet.
I was first diagnosed in 2004 aged 33, then secondaries came in 2009, This is my 3rd chemo.
This thread is great, loads of useful info, thanks everyone.
Rachel
Hi Rachel, I’m on 1800mg now as 2000mg was too much, ended up sleeping through most of the dose, day and night & then unable to walk through the second dose! I was first diagnosed at 33 too in 2008 then secondaries at Christmas 2010. This is also my 3rd round!
Well was trundling along nicely on this round with just having a couple of naps a day and tiredness and then wow, last night my skin is coming off my feet again and the familiar burning is back. Have covered the open sores and holding out tight as I finish chemo tomorrow eve, praying it stays OK, its half term!!!
Happy Jubilee to all, looking forward to the flypast this afternoon
Sam x
Missed this thread somhow. Know many of you though!
I have just finished round 5 of Capecitabine and am on a reduced dose from previous cycles of it. I had a free period of 2 and a half years without the drug but tumour markers rose to over 3000 and I wasn’t feeling great.
I have had 2 periods of being on Capecitabine before. My feet are being slobbered in cream. I believe it is better now to rub the cream in too vigorously as it can cause the capilleries in the blood to leak and that causes the sore feet. The first time I was on it my feet were so bad it felt like I was walking on broken glass and it made my cry. I always put lots of cream on at night and wear loose cotton socks to allow the cream to absorbe while I am in bed. The first time I was on Xeloda I did everything wrong and wore boot type slippeers and they were soft on the soles of my feet. But I read it is better to keep them cool and comfortable sandals are the answer. I am wearing my Birkenstocks today but sometimes I wera shoes and socks if it cold. I have another undrlying problem. My Mum has Renaulds disease and I think I have inherited it too. In the hot weather I get freezing cold hands and feet. So it is difficult to keep comfortable at times. Bare feet are good sometimes too.
My hands become worse on the taking pills day and improve on the week off. I put micropore over the cuts at the side of my nails and wear disposable gloves when doing the garden chores or cleaning the sink/bath. I have one more cyle before I see my Oncologist at beginning of July. But I would say I am doing quite well on this reduced dose. She did hint that I may remain on this dose forever now. Will wait and see. But just wanted to point out than you can be on this drug, have a break, and then restart it again if needed. Love to all, Val
Hi Racheal,
Welcome to the Xeloda club. I had to have a 25% reduction because my feet and hands were so bad anf I couldn’twalk on the second cycle. I’m on 1650 twice a day and on my 8th cycle.
I had a dufferent se every months so did know what to expect. I had a month’s break after cycle 5 to go on holiday and seem to be a lot better after that break. I know our Xeloda Queen saud she has had breaks over the 8 years she had been on it and it has been benefical. Please correct me if I’m wrong Marilyn and Belinda hasn’t had a break since she started. Excellant news Belinda and long may it last.
I hope the se are kind to you Racheal and I hope your feet are behaving themselves Val.
Take care ladies and what a lovely day we’ve had down in Kent it stayed dry until about 16.45 which was lovely for all the Jubliee celebrations.
Love
Chris xx
Hi from your Xeloda Queen
Yes, I’ve had a few Xeloda-breaks during my 8+ years on the peachy pills - am having a 5-week break now, but nothing to do with usual side effects or even BC - kidneys affected by Type II diabetes, contributing to anaemia, so onc took me off Xeloda & Ibandronic Acid (tablet bisphosphonate) to reduce impact and hope for improvement. Swings & roundabouts, girls. Everything is affected by everything else.
Actually I’m quite enjoying my chemo-break - a bit more energy and feet are improving!
Marilyn xx
Hi all,
Pretty sure I posted here a couple of hours ago, but seems to have been swallowed - hope it went down easier than the peachy pills sometimes do!
My excellent news is that the scan results today show NO CHANGE! Such a relief: I’ve been feeling really well, probably the best I have been since my original diagnosis in June 2008 and mets diagnosis in 2010, but even so was apprehensive about todays appontment. So, onwards with the pills, and long may they continue to do their job 
Hope your break is helping, Marilyn - I really enjoyed my fortnight off a few weeks ago, just to get out of the dreaded pill routine as well as allowing feet to recover. Hope your feet are improving Sam too.
Best wishes to all,
J xx
Great news Whizz - relief to get such good news, now if only the weather would perk up you could have an even better weekend!
Hope your tootsie recover on your chemo break Marilyn and you get around to doing some of the stuff you maybe haven’t had the energy for.
Anybody else had leg cramps as a SE? I’m on the tail end of the week off on cycle 1 and the last couple of night have woken up with the type of spasmodic cramp that make you go OWWWW!
Hi all,
So 2nd week of first cycle and I am exhausted, I have never felt this tired before!
Also my throat feels red raw and I have developed a cough, anyone else had these symtoms? or have I just picked up a cold virus? I rang hospital but nobody seemed too interested as I dont seem to have a temp!
Having spent most of the week in bed or on sofa I am feeling very frustrated.
Any advise please?
Hi all,
Rachel, sorry you are feeling so wiped out. I’m managing ok energy wise, but definitely need much more sleep than I used to - up to 10 hours a night sometimes. I used to worry about it, but now try to just go with it - if thats what my body need then so be it. I’m sorry about your throat and cough too - have no experience of that as a side effect, so hope it is something you have picked up and will soon shake off. You could mention the extreme tiredness to your onc next time and see if they might consider reducing your dose?
Alesta, you brought memories of cramp flooding back. It is horrible when it happens, and I remember it seeming to go on for ages. The good news, which will hoepfully be true for you too, is that it gradually reduces to the point where I had almost forgotten about it, until your post. Having said that, last night: cramp again! Maybe it was on my mind, or maybe just a coincidence!
Enjoying a lovely (well compared to recently anyway) day here - out for Sunday lunch with Mum, brother and son, and have even summoned the energy to pull a few weeds in the garden.
Best wishes to everyone,
Jx
Hi Rachel,
I have had a sore throat a couple of times since I started the chemo and my nose has periods where it constantly runs. I’m on anitbiotics at the moment because I felt so awlfu on fridayl and my throat when completely went that morning so I just phoned GP and he wrote out a prescription for me. I spent the morning in bed as I couldn’t even get out of bed. My chemo nurse said the running nose is normal and I suppose our bodies are getting a bit of a hidding from the chemo, but my bloods have always been fine.
Great news Whizz on your results, makes all the se worthwhile and long may it last for one and all.
Marilyn I hope you’re enjoying your 5 weeks of freedom and it allows your body to recover from the se’s. I’m on cycle 8 and my oncologist isn’t happy with me doing anymore cycles. I’m pretty scared of coming off Xeloda; if its working why change the treatment regime? I know we did discuss the maintenance dose but she isn’t keen and wants me to have Fasolodex injections. I’ll put another thread up to see if I can get anymore info.
Take care ladies
love Chris xx
Hi Everyone
Told today that bone mets had spread to ribs & hips (spine only before) & they want to try me on capecitabine (hormones for last 6moths). Have browsed through the thread & have an idea of what or what not I might be in for.
I have a few questions:
- Has anybody managed to work while on this treatment? I’m currently working full time except for the trips to hospital. There are days when I just crash out in the evening but life goes on relatively normally.
- Has anyone managed to get travel insurance? We already have a 16 day trip to New York / Canada booked (money put aside for big premium). Insurecancer seem a possibility but would want ok on blood counts before issuing certificate which they’d want done at last minute which is a bit scary! Oncologist was absolutely fine about it & said doing paperwork was not an issue.
Cheers in advance
Ingrid
Thanks guys, its helpful to know that others are suffering similar symptoms. I think it may be a cold virus that I have picked up. Its slowly clearing up but now on my chest. Taking it easy but finding it very difficult to slow down. But my feet are starting to feel sore so that will slow me down!!
Anyone had rads to their spine? My onc is recomending rads for my pain but not sure re after effects? I have had rads before, breast and sternum so I know about skin and tiredness but scared re mobility problems. Meant to be voluteering for olympics but not looking too promising at the moment!!!
Rach x
Hi Rachel just to say I had rads to spine when first diagnosed with spine mets in feb 2011. I suspect s/es appart from general tiredness and skin redness depends on which part of spine radiated. Anyway i had 5 days of rads focused on T4 which was collapsed. i had very few s/es but did notice I was a little hoarse for a day or two. Lower down I think bowel symptoms may be an issue but many people have just a one off dose of radiotherapy which is even less likely to give symptoms. Pamx
Hi Ingrid - I worked full-time in a regeneration partnership team for four years after my bone & liver mets dx in 2003 while on Capecitabine. Then, at the end of my contract, I took early retirement - because I could! I was pretty tired by then (I’ve been on Capecitabine for over 8 years), and hadn’t wanted to retire three years before I was 60, but I’m glad I did that now, as it’s meant I’ve been able to spend more time with my partner, who also retired at about the same time.
You’ll need to see how you react to Capecitabine before making any firm decisions about working - each of us has such an individual response to our BC and treatments. But it can be much more “gentle” than many of the IV chemos we might get - and you should keep your hair!
Hope it works well for you and is kind.
As for travel insurance for a trip to the States, I couldn’t get any last year, but I have extensive bone mets and more than one liver met, not to mention quite a number of health problems (high blood pressure, neuropathy, retinopathy) resulting from diabetes. So, on paper, I look v. ill indeed - in person, I’m pretty ordinary! Hope you enjoy your holiday!
xx
Hi all
I’m starting on capecitabne tomorrow and was wondering how long until the side effects begin.
Thanks
Debbie x