Xeloda -- foot care

ElaineG

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

JeanMargaret

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.

MoiraC

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

MoiraC

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 

MoiraC

Hi Jean Margaret - hope it goes well for you

Chantellep

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.

wendy55

Hi @Chantellep,
Great to hear from you again, pity about the bad weather on the cruise, good to hear you are walking again,I find that I have to keep socks on,that helps but still get the cracking and dead skin, just part and parcel of the side effects, still it keeps on working, I am coming up to my five year anniversary in June and have been on xeloda for over 2 years now,when I last saw my oncologist I said I hoped I could go 5 years, well see, my ca markers have risen very very slowly but still in the normal range,I am on my 9 days off now, which in effect means I get two clear days as it takes 7 days for the xeloda to get out of my system, then start all over again, now the weather is getting cooler FINALLY, the side effects arent quite as bad, and it means I can go outside in the garden,we have just had the first decent rain for three months, so lovely to lay in bed and listen to the rain on our tin roof!!

wendy55

MoiraC

Hi @Chantellep  -so glad you got away despite the bad weather and you are getting some walking. My feet were very bad last week and the background burn turned to full heat -I could barely walk and it felt like walking on sharp rocks! I managed to keep up the moisture,ice and elevation and my dr told me to cease -it was day 10 of cycle 3. Things improved over the weekend and I have managed to not have the skin split. Back to doc this week for review and I think a lower dose. It was very scary and seemed to escalate quite quickly. Thanks for tip re filing -I wasn't sure if a good idea. All the best 

MoiraC

Hi @wendy55 - good to hear you have been on Xeloda so long and with good effect despite feet problems. You will see above my feet challenges -this is only my 3rd cycle. Glad to hear you have rain and the side effects have eased for you to have time outside. The heat seems relentess here in Sydney-rain ? What is that! Best wishes --moisturising next !

wendy55

Hi @MoiraC , happy to hear that you are managing okay, the sideeffects are challenging, its actually my hands that are the worst,but its something you learn to live with and manage, sounds like a good idea if the oncologist lowers your dose, I am on 2 tablets morning and night and my cycle is 12 days on 9 days off, this is manageable for me, I started on 3 tablets morning and night and 14 days on and 7 days off, my body could no tcope that all so have been on lower dose for last 2 years, yes, the rain was very welcoming but did not last long enough, back to sunny days now, weather all over the place,
I am hoping to get at least another year out of the xeloda, all depends on how my scans come up, also my oncologist has all my bloods done every 19 days so this also gives him an indication of how things are going - take care and heres hoping for some rain for you!!!

wendy55

Patti J

Please don't  file your feet. As you said you don't  know  how deeply to go. My podiatrist told me that he sees many patients  who have used this sort of technique and gone too far. 
I have peeling feet but they are not painful. I think I  have a very high pain threshold.  

MoiraC

Thanks Patti J -am seeing my podiatrist tomorrow so will also discuss

Chantellep

Hi all. I resorted to filing my feet myself because the podiatrist made them soooo bad that I couldn't stand or walk for over three weeks. At least I can do a little filing occasionally and manage how much I take off -- but it is a learning curve -- and thereby avoid getting the big 'scales' and cracks that catch on my socks then tear, which is not nice! The oncologist was happy and encouraged me to file my feet for myself. I think it is a matter of what can be managed best.
Yes, getting the drug balance right to minimise side effects while hopefully maximising cancer control takes a bit of time. I started out over five years ago on five tablets morning and night (I'm a tall woman) and it has slowly dropped to two morning and three at night. When I've accidentally (or intentionally to vary my week off dates) extended my two week drug time, just three or four doses (one to two extra days) is enough to wind up side effects. So, what I'm saying is don't mind about the slow drop in dose, and keep doing the cool hands/feet, no friction, cotton sock/gloves, moisturising routines because they do help. Hope that's encouraging

wendy55

Hi @Chantellep, someone told me about gel infused socks the other day, just google gel socks and all sorts turns up, my feet arent the culprit so much but my hands, I have limited movement and they are very tight people say they look like they have  been burned!! my oncologist did put me on a stop start routine which has got the side effects to where they are now, do your eyes water and your nose run as well!! my eyes are terrible especially where there is any air, but the silly thing is as soon as I lay down the nose stops running and the eyes stop running, cannot do anything about it its all part and parcel of being on xeloda, I also find I get extremely fatigued the last three days of my 12 day cycle, still its working so will just keep on keeping on!!

wendy55

Chantellep

Hi Wendy. Yes, always tired at the end of the on cycle, and probably a bit cranky too! I also don't feel much like eating and can forget to feed myself, which can make both symptoms worse.
Your poor hands-- that must make things very hard. Mine are dry and can be sore but nothing as unpleasant and limiting as that. Do you wear cotton gloves over moisturiser applications? 
I've seen ads for those sock things but I think they would be too harsh for tender feet -- it's some kind of chemical peel and that sounds nasty 
And yes, my eyes and nose do run, but I hadn't linked it with Xeloda. And yes, they are worse in wind and dry up when I lie down (to the extent that I have to put drops in my eyes sometimes to get my eyes to open again). It helps to know I can blame the drug and it's not just my body packing it in!