Well Im on my 2nd cycle xeloda (easier to spell than capsomethingbine!), at my last appointment I didnt see my onc, but his registrar, I was reading over the desk (as you do) and thought I saw in doctor scrawl that my dose would be increased if there were no side effects, didnt ask registrar as he wouldnt of known anyway you know how useless they can be if you ask the wrong question (once got left in the office alone for nearly an hour while one nipped out for info!! nightmare!! ) anyway Im taking 4000mg a day and so far no SE, now I know the dose can be lowered if needed but havent heard of anyone having it raised, maybe my upside down reading isnt what it was or maybe the spidery scrawl was tricking me!!!
I will check with my usual onc when I go again on 26th, but just thought Id see if any of you ladies have heard or had this happen to you???
take care
Sue xx
Hi Sue,
My understanding is that in this country they usually start you on about 75% of the maximum dose suitable for you based upon your height and weight. If you develop side effects, they can lower the dose and it should still be effective. I have been taking capsomething (he he) since January '07 and have had one dose reduction. I began on 4000mg like you, and now take 3500mg per day. The worst side effects I get are hand/foot syndrome. In the states I know that clinical trials are being carried out whereby they begin you on a lower dose and increase it if you are tolerating it well. I guess if you have read your notes correctly, your onc wants to make sure that you are not going to suffer any adverse effects and it sounds at though you will be fine if you have begun your second dose OK. Side effects are cumulative, my hands and feet didn’t really kick in for some months and it was August when I had my dose reduced. I hope this drug works well for you, let us know how you get on.
Jenny
x
Hi Jenny
if youve been on this since Jan 07 I take it that your having good results with it - thats great to hear!!! I love sucess stories!!
take care
sue xx
Hi Sue
Just to say I started on Xeloda 2 weeks ago along with the normal herceptine… no side effects like you… I realised that they had given me too low a dose when I read the leaflet.for height/weight… coincidently spoke to oncology nurse this morning & they always give a lower dose to start to check side effects… looks like they will increase mine next week… oh apparently xeloda can be given on & off for a long time unlike other chemos
x J
My experience has been different - I started taking it in September 2006 at a very low dose (two big tablets and one small one) because of the state of my liver and my consultant said that my body wouldn’t have been able to take a stronger dose at that time.
I’m now on 3 big ones and one small one and don’t have any side effects but know of more people who do have the hand and foot syndrome and have to take a break to let their skin heal.
I’ve a friend who has been off it for the last 8 months and she’s doing really well plus another friend of mine who has had to take a break because of her hands and feet and she’s also doing well. Which is all good news for us on it!!
Pinkdove
i am on 4000 per day but now am being reduced (advice from london doc ) as my feet are bad , terrible tingling and frost bite feelings . am on a week off now but he also recommends 2 weeks on and 2 weeks off .
love Tracy xxxx