Hi girls,
I am due to start xeloda in two weeks. As I am part of TACT 2 trial I have had 4 lots of epi. Can someone out there give me advice. I have all the leaflets ref side effects and dosage. Fell worried as I have heard that they can sometimes get the dosage wrong and it makes you ill???
They have gone on about foot and hand syndrome - does this mean you can’t run or walk while taking it?? Nurse seems to think that it will aggravate it.
Any advice would be welcome,
thanks girlies - always nice to have somewhere to turn.
Sending lol,
Tracy xxx
Hi Tracy,
I was on the Tact 2 trial - the same arm as you - epi followed by Xeloda. For me, the side effects of Xeloda were almost non existent. Hair started to grow again when I began the second lot of tablets. Towards the end of the last cyle of tablets I did experience short stabbing pain in the heel of one foot. Limped round for a bit and kept my foot up when sat down, but it was not really a problem. I like walking with the dogs, but was advised to abandon this as it is the pressure on the feet that can cause the foot syndrome. My hands throughout were fine.
Re the dosage - I think they start you off on the maximum, but if you experience problems , they can reduce the dose; apparently this does not impact on the the effectiveness of the drug. It’s all to do with your own metabolism.
Now I have finished Chemo and Rads and fee very much like a human bean again - good luck with your treatment. For me, Xeloda was a far easier ride than the Epi.
Jane
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Hi Tracy,
no words of wisdom from me I’m afraid as I’m on arm 2 of the trial but I wanted to say ‘welcome back’!! We haven’t heard from you in ages!!! How have you been? I can hardly believe you have finished Epi already, the time goes soooooo quickly doesn’t it!?
Anyway, how have you been and how are you feeling?
Kelly
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Thanks Jane - fingers crossed that I am as lucky.
Hi ya Kelly - long time no hear. I have been logging on but not so often. The epi has been wiping me out for the week following. Feel very fuzzy, tired but my brain is active and it is very frustrating. Don’t seem to have the energy to do anything and my concentration is about 3 mins, sorry.
Hope you are doing ok - what are you up to??
Hiya Trace,
I’m v.g ta. Just had my 3rd day 8 CMF yesterday and am feeling unusually good, hoping its not the calm before the storm! Only 1 more cycle then thats me done as far as chemo goes. Got rads and then a years worth of Herceptin to go next and will be starting Tamoxifen shortly.
I’m still non-effective work wise. Went to the med centre the other day and am hoping to start my ‘phased return’ to work in the new year. I’ll have been off for 9 months by then and am already shi**ting myself! I think it’ll be a long old time before I’m up for fitness testing and CCS type stuff again! This chemo lark is wiping me out, and the rads sound like they tire you out too. The padre made a home visit to me last week, bless him. It was lovely to see him and nice to know the station haven’t forgotten about me!! Are you having much contact with anyone at work at the mo?
Take care and keep in touch,
Kelly
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Hi Bettyboo
I am on the trial too and only have one more epi before I go on to Xeloda so am also keen to hear stories about side effects. I was speaking to my breast nurse yesterday and was saying I was really worried about sickness with Xeloda as nothing has prevented vomiting after epi. She said that sickness is more of a problem with epi and she thinks I should be fine. Here is hoping! It is daunting though reading all the glossy leaflets about how unwell the tablets can make you. At least I have a supply of nappy cream at home already, that seems to be what people recommend for sore feet!
Let us know how you get on once you start.
Sinclair
Hi ladies,
Thanks for that - Sinclair, I will keep you posted. I must get some nappy cream, my son is 11 so haven’t had some in for a while!!!
Not looking forward to the tiredness, just seem spaced out all the time at the moment. Can only get better!!
Kelly - yes, still off work, the chemo is wiping me out, couldn’t imagine having to function on a daily basis especially chemo week. I start xeloda 25th Sep so here is hoping it isn’t as bad.
Having lots of contact with friends from work, the boss rings me occasionally to see how it is going, I even managed to pop in last week to see them all. Think they were a bit shocked at how normal I looked, not quite sure what they were expecting.
Hair is very thin on top now but still not got the guts to shave, I used the cold cap all 4 times so it is still there - I think I will just bare with it until it starts to grow back.
Glad to hear you are ok - I do think about you. Not managed to log on as often as I would like, seem to spend most of my time lying on the couch or in bed!!!
Take care honey and I will keep in touch, sending lol,
Tracy xxx
Hi Tracy
I’ve just started my 3rd cycle on Xeloda tablets. I haven’t experienced any sickness at all and only developed sore feet in the ‘rest’ week of cycle 2. This lasted for about 4 days and then suddenly cleared up! Keep moisturing hands and feet and I’m sure you’ll be OK.
Carol
Hi all,
I’ve just started my second cycle of Xeloda today… it’s been a breeze compared to the Epirubicin!! I was very sick for a couple of days after each Epi and they didn’t really sort out the anti-sickness meds for me. But as for the Xeloda… so far, so good! I’ve had no side-effects (yet!)… no diarrhoea, hands and feet are OK… so fingers crossed that it will stay this way 
I don’t want to raise my hopes too much, but it’s a good start anyway. I take 5 tablets after breakfast and the same after dinner, so am rattling. Not sure how they decide how many you take, as another lady I was talking to at the hospital only has to take 4 + 4… but she’s probably a bit lighter than me, so maybe it’s done on body weight (I’m about 9st 10lbs)…
AliS
I’m on my 8th cycle of xeloda now as have secondaries and it is keeping them under control.
They do start you off on the max dose for your bodyweight ratio and most women seem to have to have their dose reduced. I had to abandon the first cycle after 8 days as I had such bad diarrhoea and hand and foot syndrome. I’m now on two thirds of the dose and my mets have shrunk and I’m generally OK. I get tired but then that is usually the case with chemo and have secondaries as well so in a different place to you. This is my 4th different type of chemo in 2 and a half years so my body is rather battered by it and I’m probably a scary person to people who have jsut been diagnosed.
Sometimes in the first few days, I can feel a bit nauseous but just take 1 dose of domperidone and it’s gone. They say you must take the tablets within 15- 30 minutes of a meal and I do have to do that or else I get diarhhoea and feel sick. I also find it better if it is a meal and not just a snack. I haven’t had any problems with mouth ulcers or neutrapaenia and it is not a hair falling out chemo so your hair should just keep growing back.
I have had a lot of trouble with my feet - my hands are OK but I’ve had problems with my feet since taxotere in march 06. I find in the second week I have to be careful how far I walk or else my feet go bright red and feel as if they are on fire. If I don’t rest and grease my feet well I can end up with massive and deep blisters but not everyvbody gets this problem anyway. If you do - then do as they advise and stop the tablets and inform your chemo unit. Xeloda stays in your system for quite a few days after you stop so if you leave it too long, you can be in agony.
Cow’s udder cream is supposed to be good - there is an older thread about xeloda so probably worth searching for it. I use Body Shop’s hemp hand cream or E45 as my feet get very dry.
My last problem with blisters was really my own fault as I did 3 days of hard walking in Cornwall on the second week and due to my secondaries I’m not usually that active so rather overdid it!!!
It’s like most chemos - some women tolerate better than others. I’ve dfinately found it an easier chemo than the others but becuase they make the tablets in 500mg and 150mg sizes you can end up takijng a lot of tablets. My first cycle was for 2500mg so took 5 tablets when they reduced it, I ended up taking 7 tablets twice a day!!!
I wouldn’t worry too much - if you take the advice and phone if you are running into side effects then you’re ok - it’s women who plod on with side effects that run into probs.
Hope it all goes well
kate