Hi, just found this site thanks to my hubby who’s alway looking for answers.
I’m on chemo no.8 with Xeloda. My feet were very sore after the first four cycles and my oncologist reduced the no. of days on drugs to 12 plus 9 days off and this really seems to have helped the side effects but I’ll let you know next week after the CT scan if its still as effective on the mets which all shrunk during the first four cycles of two weeks on and one week off.
Udderly Smooth works best for my sore feet an dwearing Fitflops whenevr possible, but i’ve still managed to walk 6miles today bwith the local Ramblers.
I’m so impressed that you walked 6 miles, and I’m guessing that it wasn’t all on the flat either. I’m interested to hear your good reports of Udderly Smooth too: I have a variety of different creams and have been alternating between them up until this cycle when I decided to try just using the Udderly, and I have to say that my feet do seem to have been better this time (I’m on cycle 6). It’s the one with added urea that I use - is that the same?
Hi Geewhiz
Yes the Udderly smooth cream does have the added urea and is prescribed to me by the Oncology Centre… I find it soothing. I also give my feet attention by having reflexology and see a Chiropodist too( good use of DLA money) as my feet look and feel so terrible at times.
I am now on 1 week on and 1 week off of CAP.
One thing I was wondering is how many women have secondaries from an original lobular cancer?.
It was a 6mm lobular cancer 11 1/2 years ago that was not picked up on a mammagram that is the one that has spread to my bones, to be secondary cancer ( not the 1cm ductal cancer that I also had at the same time )
Esha
Hi Esha,
Well I’m a lobular girl too. I had three masses when diagnosed, the largest 6.5cm, although it was one of the smaller ones that I had felt. Nothing had shown on a mammogram 3years previously. My primary diagnosis was in June 2008, secondary Feb 2010.
J xx
I’m now on cycle 5. Have been prescribed 2 big bottles of Udderly Smooth with Aloe Vera & Vitamin E (Are those better than the normal ones? Usually I just get one small tube).
My tiredness is lots better. I think seeing the herbalist and taking the herbs must helped. Shame he couldn’t do anything about the hand & feet, because this cycle my feet are really struggling:-( Lots of skin are peeling off and they are becoming a bit painful to walk on.
Apart from that and being really busy with work, I’m fine. Tumour Marker is now down to 16!! So, Xeloda is def working for me.
It seems to have gone a bit quiet on this thread, hope that means good news on the Xeloda front.
I wanted to ask how bad the hand foot syndrome is for others. I’m on day 6 of my seventh cycle, and really struggling. The skin on my big toes and all around the sides of my heels is very red and sore, and my right heel in particular feels as though it might split if I put weight on it - are these sensations familiar to others?
I know that things are worse for me at the moment because I’m on Abraxane as well (day 7 of my seventh cycle) which is giving me aching legs and wobbly knees, so together with my feet I’m struggling to get around at all, just hobbling around the house.
My oncologist had mentioned increasing my Xeloda dose once I’ve finished abraxane (I’m already on 4,000mg a day), but I’m not keen if my feet are going to continue to be this sore.
I find there is no consistency, each cycle has been different! This cycle I have had no side effects at all, apart from my feet going a dark brown colour, but no soreness or dried skin…weird!
I have actually been told to leave the xeloda until after I have finished WBR, I have had 3 weeks off before due to poor bloods and it was still seen to be working, so quite nice to have a tablet break.
Just finished cycle 5 last Friday, and I really struggled with that one. During my 2nd week, my feet were so bad that I can hardly walk. They were black and red and lots of skins were peeling off. I was putting creams on about 5 times a day!! Not usually a moaner, but had a good moan with onc when I saw him on Monday. He had a look at my feet and decided to delay the start of cycle 6 by a week and reduced my dose from 1800mg x 2 to 1500mg x 2.
Since I stopped it on Friday, my feet are healing up and they’re a lot better now. My onc said that they might make a full recovery by the start of cycle 6, but then I would have a real struggle again during cycle 6 and it would make sense to give it a bit extra time and lower the dose.
Nicky, I think it makes more sense to stop the xeloda during WBR. I seem to remember that chemo and rads can magnify the side effects of each other. And you certainly don’t need that!
I also had some weird aches, J. But I can’t see that listed under the side effects of Xeloda. That has got me a bit panicky! For your info, Nicky: I had for 3 days brief and pulsing pains at the top of my head. Onc said that sounds more like trapped nerves in my NECK! But no pain in my NECK! Weird! After he said that, I felt something in my neck going all the way up to my head. Also had some aches in my legs/knees/lower back. Onc wasn’t worried about them either. Also had some pain in my bad breast, which was the one made me got up in the middle of the night and frighten me (tumour marker is only 16, so what was I worrying about?? Some times those frights come out of no where!!). Onc did feel a “thickening” but no lumps any where. In the end, he said keep an eye on it and let him know if any of those pains get worse and he’ll organize scans to make sure.
Oh dear, that’s a really long post! Sorry, just such a relief that those aches are nothing to worry about at this stage.
Hi ladies,
WBR is more than enough to deal with Nicky, so glad to hear you’re having the little chemo break.
Feet!..mine vary from cycle to cycle…have had heel splits every now and then…I really recommend silver plasters…for me they have helped splits heal quicker than any of the regular plasters…also keep plasters on for a couple more days than you think you need them…my experience.
Pulsing neck pains…I’ve had these every now and then…they come on out of nowhere and last a few seconds but very intense. I do know I have mets to the top of my spine, neck.
Take Care All…xx
Ah, feet . . . mine have been pretty terrible recently - peeling, painful, red, toenails lifting, etc - during my two weeks on Xeloda, even though I’m only on 1000mg x twice a day, then recovering a bit on the week off. Saw my podiatrist yesterday, and she mentioned that sometimes we might have a little allergic reaction to Flexitol heel cream, so I’m trying their general foot cream instead. And every other foot goo and gunge I can lay my hands on! Must get in a supply of silver plasters, Belinda - hope they come in interesting colours . . .
I agree that WBR is plenty for you to be dealing with right now, S., and so I’m glad you’re having a little Xeloda-break.
And hello and hugs to all the other Xeloda Queens - hope it’s keeping the little 'uggers sorted.
Well I called the hospital the morning and the advice is to stop the xeloda and try to rest my feet as much as possible - so it’s official, I have to put my feet up and be lazy!
My oncologist will review the situation in 2 weeks time when I go for my final Abraxane, and might look at revising the dose.
I’m continuing with udderly cream for now, and if the skin splits then they advise using cavilling too.
A bit disappointed to be stopping as I’m sure it is working for mr, but I managed 13 doses out of 28 so not too bad.
Thanks Marilyn. I’m partway through getting my bedroom and en-suite remodelled and decorated, so as long as I can limp to the kettle to make builder’s tea at regular intervals I shall be fine!
Best wishes to Nicky65 too with the WBR. How often do you have to go for this? are you noticing any side effects? I’m glad they halted your Xeloda too, another straw the camel will be glad to see removed.
Belinda, thanks for the tip re silver plasters - I’ll get some in stock in case.
And thanks for the encouragement m!yu, I hope my feet clear up fairly quickly too.
Hello to all Xeloda women
Its so helpful to share the ongoing SEs of CAP with you all. I find as time goes on I dont bother to tell people the ongoing SEs, easier just to say I have got used to them and they dont bother me too much?
I have now had 11 cycles and started in March 2011. Consultant says I will stay on CAP until it stops working. I have had my dose reduced to 1500 twice a day, one week on and one week off( 3 tablets morning and 3 tablets evening)
My side effects have no pattern at all. My feet can be very sore, I sometimes develop tiny cuts on the soles of my feet. It is very painful to put pressure on my feet when they are like this. My feet can get dry, cracked, red and sore and it helps to plaster them with the udderly smooth cream.
My fingers are often tingling and with poor sensation. My eyes are very sensitive to light, when outside and my my nose may start running. Have stocked up on some lovely colourful hankies …!
BUT THE GOOD NEWS is that this amazing medication is keeping this disease under control at the moment. In Jan 2012 it will have been 2 years since secondary Mets diagnosis(10 years after primary diagnosis) and I continue to feel fit and well.
I wish you all the best that we all hope for.
Keep up the posts!
Esha
Esha
It’s news like that we need to hear! when we are bogged down with niggly and never predictable side effects! It is so good to hear that for many ladies it really does work! Keep on inspiring us please,
Well I hope you are and they keep working as well as they have for our very own ‘Xeloda Queen’ I’m starting them next week and have read all the post and taken notes as what I may have to expected regarding se’s.
Hi Chris, oh good luck with the tablets…I do hope you find the chemo as effective and kind as I and others have. So many of us are now on the tablets it’s been good to read tips and everyone’s experience of taking them…xx
…if I’m still on Xeloda in April next year it will be my 4th year with the peachy tablets.