Hello all, I recognise a few of you from the bone and liver mets thread, I started taking capecitabine but had a strange side effect - heavy arms, strange sensation in chest and a bit breathless and have been takn off it due to this. Been to see yet another Onc today who wasn't a BC expert so wasn't really much help (but Oh! he was LOVELY!!!) but said he was going to have a word with some of his colleagues in Newcastle about an alternative treatment. Is anyone on anything other than capecitabine and how are you finding it?? many thanks Joanne.
Just read your post & wanted to say good luck with the Capecitabine. I've just finished my 5th cycle & due to start the 6th on Tuesday. Not sure what will happen after that as depends on what the PET scan shows. Last one, in May, showed everything stable so hoping next one will back that up.
I've found this treatment very doable & have had few SEs - have started feeling tired this past week & feet a bit sore if I walk a lot, but I do religiously put on the cream twice a day & have been pleasantly surprised how well my hands & feet have been. Try Flexitol as well, it's very good & you can pick it up at Boots.
Hope you find the treatment ok as well - there's quite a few ladies on here who have been on it for quite a while, so here's hoping it does the same for the rest of us!
Great comments and info re capecitabine. I've just started today and feel very overwhelmed with all the tablets, I'm hoping that once I get into a routine with it it will become easier. I've already got the Udderley cream recommended and will make a pit stop at the Body Shop later to pick up the cotton gloves and socks.
Thanks again for the info its invaluable to us 'newbies'
Hi I have been on Capecitabine for about 18 months now and its going great. Secondary tumours in my liver have shrunk and no progression in my bones. I have tender hands and feet but all quite manageable with cream and white gloves (My son says I look like Michael Jackson) and trainer socks are great for my feet, I will try that cream that several of you mention, thanks. Like most of you say the side effects are of no consequence if the treatment is working and its a good excuse to sit with your feet up. I have also become an expert in plasters and have boxes of all types. My Doctor prescribed Haelan tape which I have found really good for the soles of my feet and for my thumbs which sometimes split. Those gell inserts for shoes also help and shoes with nice squishy insoles. I looked on here to see how long you can take it for and was amazed to see you can take it for 7 years or more, great news if it keeps it a bay.
How about putting on those cotton foot moisturing socks after slathering on the cream (I think the Body Shop does them).
Servants and feet up do sound more appealing though!!
I got Udderly Smooth from Amazon, the one with Urea in it - I know but it works. However, when I ran out I moved onto Flexitol which you can get from Boots and it feels just the same and also does a good job. Just remember not to rub it in as Val reported that she made her feet worse to start with by rubbing it in too much. I tend to slather it on and keep my feet up for a while to let it sink in - good excuse to keep still for a while! Make sure you have plenty of 'servants' around to wait on you!
Good luck, Sue x
thanks for advice so far - now been told to use udder cream (NHS has nothing that the doctor and BCN think wil help feet!!! Any suggestions on suppliers on internet as BCN said that's only way to get hold of some?
thanks Marilyn -your message is so encourgining and Sue, I agree a bit of this agro with feet is worth it if the tumours are being zapped. Feel are slowly recovering on this non-tablet week but don't want to walk far so am taking the taxi to the hospital appt - think it's time I put my mind to completing a DLA form as mobility is now restricted alot. Will see what they advise - just hoping to continue with the tablets even on a reduced dose...
I've been on capecitabine constantly for over 7½ years now, with a couple of "chemo-breaks" in the first year to go on some long-haul holidays (when I could still get travel insurance!). I started on 2000mg x twice a day, two weeks on and one week off. But when I started to get hand/foot and digestive problems, my onc reduced my dose (twice), finally landing on 1000mg x twice a day, two weeks on and one week off. All this was in the first 12-18 months of my "life with capecitabine"; I've been on the lower dose almost constantly for six years -- did have a three-week break in November last year, when a CT scan showed some possible liver progression and I was having some other health problems (unrelated to the BC). But back to stable after that, so back on the capecitabine, hopefully for many months/years to come.
As you said, none of us has a crystal ball, so it's difficult to advise you on whether or not to have a break -- I assume you'd be monitored regularly if you go off the capecitabine, so you might feel confident to do this for a short period? Your feet will thank you ☺!
I have been on Capecitabine for nearly six months now and I have had some problems with my feet. I find some days I can tolerate more walking than others. Sometimes they just blister really easily. AS Marilyn says Felxitol is very good (Boots have it). I love walking too but if the drugs working then I can put up with a bit of discomfort now and again.
Good luck with your treatment.
Marilyn, My Onc thinks I should give my body a break from the drugs for a while. Did they do that with you or did you just stay on the capecitabine? I would like to keep my tumours damped down and am concerned that within a few months of no drugs I will end up worse than before - that is what happened to me last year. Oh, for a crystal ball????? Or maybe not?
Many thanks Mariyn - this is interesting; I think I am on max dosage (5 large plus 1 small twice a day) due to height/weight/tumours so I'll see what Onc says - could be I have to put up with high dosage and not walking for a while to get benefits and then go onto lower dosage. Thank goodness for Birkenstock their sandals are the only way I really feel sort of comfortable and able to walk! (so sunshine keep shining so I can stay in sandals!)
Hi Fran - so glad to hear you think the capecitabine is working on your liver mets, and hope the scan shows real improvement in a couple of weeks time. It does sound like your sore feet are probably hand/foot syndrome side effects, even though you might not see any damage to your soles at this stage. Those of us who have been on capecitabine for long periods have usually found that side effects are in direct proportion to your dosage: the higher the dose, the more likely it is that you might have some problems. I would try slathering on some nice foot cream -- my podiatrist recommends Flexitol, which has a very high level of urea - a good skin repairer, but there are plenty of others that you might like to use. And of course talk to your onc about this -- our oncs really do want us to be able to tolerate our treatments, especially when they're working well for us, so s/he might recommend a reduction in dosage if you're on a very high dose now and having problems so early in your treatment. Good luck with this!!
Just wondering if sore feet that make it very, very painful to walk is a normal SE for Capectabine as I've just had a few days away in the Dales and could hardly walk even around the mobilehome (and walking is my passion...) - have had just first 2 weeks of tablets and now on "off" week - I do see Onco tomorrow so will ask then but wondered what the experience of others is. I know there is foot and hand syndrome - do you think that's what it is? No cracks so not dolloping cream on like some of you... Also has anyone had this early on in treatment and then found it goes away with time (am hopeful). I do think the chemo is working as the liver discomfort is significantly reduced (hurrah!) and I will be scanned in another couple of weeks to look for progress so want to continue with the treatment - and will endure if it's helping but this soreness when walking is a real problem at the moment (not much housework will get done today!)
Thanks for any advice
Thanks for sharing - you and other posters are helping to make my day feel really positive as I've just started Capecitabine and am full of hopes that it will work - good luck to you with all your future plans for your new relationship - can only add words of encouragement as others have!
Thank you so much ladies !
I agree so much that we certainly don't "sweat the small stuff" anymore. I wouldn't have chosen this lifestyle but I have to say, I enjoy every moment of life now . Life is so precious.
Marilf, how wonderful that Capecitabine is still working so well for you after more than 7 years, and long may that continue. What an inspiration you are. It certainly is a wonder drug for those whose bodies can tolerate it. How sad that some people react badly to it.
Thank you for all your encouragement girls. When my marriage broke up I was convinced that I would never have a relationship again, but this man has melted my heart, and he's known about my illness from the start. I've decided to listen to those people who said "never say never" after all. Thanks again xxxxxx
Hi Jackie - how lovely for you to have found happiness, and love again. Definitely go for it, as long as the new man understands there's no reason not to 🙂 It's also great that your treatment is keeping you stable and long may that last as well.
Good luck + enjoy 🙂
ps - Sue - no you're not the only one - I don't sweat the small stuff anymore and it's a whole better way to live.
As Belinda said, I've been on capecitabine for over seven years, and am also very lucky that it has worked so well at keeping my liver and bone mets stable -- my CT scan a few weeks ago was "unremarkable", i.e. vaguely not really showing much of anything going on in my liver. Result!
And as everyone else has said, don't hesitate for one nano-second in getting that relationship together - there's nothing in the BC mets rule-book that says "don't fall in love because we might not be around for long". Run, don't walk! And enjoy!
Hi Jackie, I'm now 3 years with Capecitabine..I might be changing soonish but marilf, a forum user, is either 7 or 8 years with Capecitabine.
Enjoy life and I wish you both much happiness..xx
Couldn't agree more with Louise. Go for it, make sure you enjoy every day. Love will be all the sweeter this time around I am sure. Whilst our diagnosis is terrible it is somehow liberating in a way, you don't sweat the small things the same! BUt maybe that's just me!
I have only been on Capecitabine for the last 6 months and it has worked for me. I will possibly take it for a bit longer yet.
yes there are people here who have been on capecitebane for longer - I've only just started this having been diagnosed with secondaries almost 2 years ago.
BUT regardless, this disease is fickle and no one knows how long drugs work for individuals. You disereve love and happiness as much as anyone else and I say go for it. Enjoy life and squeeze everylast bit out of it regardless of whether you have 10 days, 10 weeks or 10 years!!
Best of luck
Hi all, I used to post on here a lot but haven't been on for a long time, so apologies if this topic has come up time and time again.
My bc spread to my liver 5 years ago (original diagnosis 10 years ago) and I've been on Capecitabine for 4 years. The cancer has stayed stable, my bloods are normal and I acknowledge that I am VERY VERY lucky. Hopefully this may give some of you some hope too.
I'm just wondering if there are ladies on here who have been on Capecitabine a lot longer than this ?
The reason I am asking is that I'm in the process of falling in love, something I never thought possible after my husband left me 3 years ago. I'm wondering if I'm being selfish, encouraging him.
Thanks, love Jackie xxx