Xeloda -- foot care

Hi Xeloda-ers all!  Yes, the week off isn't really much, is it? I just begin to think it might be getting better and it's time to start again. But I guess that's the way to keep the cancer off balance. I had a 'win' with an extra week off so I could go on a two week cruise. Cruising suits me because I can still sleep and eat when I like, and get off the ship to explore when I feel like it. And my husband can come and go, and be as active as he likes when I need to be a blob. Bad news though because we had four days of very nasty weather -- even the crew were sick, so that means it was bad! -- so my to-be-blissful extra week was still spent feeling nauseous. But it could have much worse if I'd been in the second week of Xeloda so I am very thankful for that! Yes, I'm still walking though not as much as I'd like, as I've lost muscle strength and I'm guessing it will take quite some time to build up again. I think walking helps, no only because it feels better to be out and about, and to be getting some exercise, but I also think it helps to gently rub off some of the dead skin. My feet are so much less likely to crack if I can keep the dead skin down. Dry filing works well (though it makes a dust storm) and it's hard to judge how deep to go safely (because it always hurts more one to three days later than at the time of filing), whereas if I can walk regularly, dead skin still builds up but not as quickly. Phew, what a long message; hope I've said something helpful or of interest! Best wishes to you all.

Hi Jean Margaret - hope it goes well for you

Hi Elaine G - good to hear dose change has helped. Sorry to hear about the nausea and reflux - what a bummer - hope things improve soon and that scans go well 

Hi Chantellep - good to hear your experience. I had kind of got used to numb toes which I also have found seem a bit improved but now my feet are indeed hot and sore - a background burn is a perfect way to describe what they feel like today. Am increasing the grease today onwards! Good to hear you are walking - I have been wondering if you find that makes things worse or better? I too am still a fan of Xeloda - so good to hear you are too. All the best

I've just joined the xeloda club for liver mets. Thanks for sharing your experiences and I'll make sure I have some moisturising creams and gastrostop handy. I'm on 3x 500g tabs in the morning and 4 tabs in the evening which seems to be at the high end, but the onc will scale it back if needs be.  Ho hum, here we go again, but at least we're still here.

Thanks Moira and Chantelle
Well - was changed to one week on and one wk off - so far so good!  Feet not as painful or red, same with hands.
So weird how the nausea and reflux persists even in the week off!
Scans will be end of April - 30 so will let you know results.
Thanks again
Regards, Elaine

Hi Moira. I had neuropathy after IV chemo but it did gradually improve. And while Xeloda hands and feet are a pain, for me I've found that I've got used to it and know what I can and can't do. Yes, there's a sort of background burn that is there all the time but if I'm careful it stays just that, background. Absolutely no friction on skin allowed and plenty of grease! I've also found getting enough rest makes it all fairly bearable. I've been doing cross-stitch tonight and had a long slow careful walk in the beautiful weather today. Xeloda is still working and I'm still a fan! :) Hope all goes well, and also for you Elaine.

Hi Elaine - I was diagnosed July 2017 also de novo and just finished 2nd round Xeloda and same regime as you. I have found it so much better than previous IV chemo but my feet are sore. I developed neuropathy after Paklitakel and am still numb in my feet but no peeling or cracks yet. Have you found any particular creams for your feet that help? So far I am using Aveeda and Moo cream. I find I have to rest each afternoon for about an hour -sometimes reading and sometimes sleep for half hour. Otherwise my pain meds for bone and liver mets dont seem to hold and I too feel whacked. My fingers and numb toes are crossed for you and us all that we will get the good results other women have had with Xeloda. Sending you good wishes -for every crap day there is another good one on the way I am sure

Hi ladies
love reading the experiences on Xeloda
I started feb 8 - 1500mg (3 tabs) BD - quite gruelling.... 2 wks on 1wk off, now just started third cycle....
BUT had a blood transfusion towards end of Cycle 2 - and still felt like 'death warmed up'
And then just to cap it all off - lovely as in not 'red' sunburnt feet towards end of cylce 2, so stopped half a day earlier for rest wk.  Just started again on Thurs so 3rd day today.  Had a lovely lunch out yesterday, but today utterly whacked :(
Oh the joys of ongoing treatment.  But like you have heard it's relatively successful in some women so fingers crossed.
I was Dx in Feb 2016 de novo.
Regards, Elaine

@wendy55 I'll let you know whenever I go down in case it coincides. One never knows. I haven't got my January appointment sent out yet since the RAH moved. I've checked I'm on the list. They forget not everyone lives in Adelaide and some people need to coordinate work. It woukd be great to meet sometime. Maybe at the bcna forum one time. Kath x