Hi Ladies,
I’m just abou to start my 8 cycle of Xeloda and was wondering what other ladies thought about a maintenance dose? I spoke to the chemo nurse today and she said that the normal regime was 8 cycle in this area, The only people who seem to be on the maintenance doses men with prostatecancer.
Can anyone shed any light on to what to ask the oncologist when I see her on the 14th June.
Thanks
Chris xx
Generally for breast cancer(ignore prostate and any other cancer) your dose is worked out by working out your body mass area (height x weight) and you take this dose twice a day for two weeks then have one week off. During this time you will be monitored to see how you get on with it. If it agrees with you (and it does for many ladies) you stay on this regime, and you can stay on it for years, if it keeping your tumours at bay. If like me, it doesnt agree with you, your oncologist will try try different regimes, to try and find one that suits you. I was really ill on the full dose and had to come off it for weeks. I now take 50% of the full dose and am just about managing. The hospital will monitor your blood results to check for low white cell count and for low platelet count. If these are low, you will have an extra week off so your body can recover. Hope this helps. Regards Jane
Hi Chris - Jane has given you all the info you need right now, but just wanted to let you know that I’ve been on Xeloda for over 8 years, most of that time on a reduced rate of 1000mg x twice a day, two weeks on and one week off. And there are many others posting here who have also been on it for longer than the initial planned cycles. It really depends on the response to the treatment: whether you can tolerate it, what dose is best for effectiveness while not being too difficult with side effects and - the key element - is it working for you.
There are loads of posts here about Xeloda - have a read and you should find all your questions answered, but do come back if you have any other concerns that you think we might be able to help with. And good luck!
Marilyn x
Hi Ladies,
Thank - you so much for your responds. I’ve read about Xelda to my eyes are going crossed. I’ve done nearly 8 cycles with some se effects mainly hand/foot syndrome which they reduced by 25% as I had difficult walking.
I want to ask some pertinent question as when discussing the benefits of maintence dose she said that she didn’t know of any sec breast cancer patients in this area who was on it. She saud they mainly had 8 cycles and then onto an inhibtor.
I tolerating the chemo well and would like to remain on it if my scan results are good for obvious reasons.
Is there anything else I could ask to get myself a good case for staying on this chemo?
Thanks for listening to me ranting on.
Love
Chris x
Hi Chris
I’ve been on Xeloda for 18 cycles at the full dose for me which is 1800mg x2 daily. It is my maintenance dose, And will keep at it for as long as it works. I am lucky in that I’ve had no problems except for some finger toe tingling. I had some peeling in the early days however Calmurid cream available from my GP did the trick. It is free unlike udderly smooth cream.
Anyway I’m rabbiting a bit, but just wanted you to know I have tumours in my liver. I did have a lytic lesion in my hip which has now resolved . My onc said that the other lesions in my bones probably have resolved to some degree too. And xeloda is keeping everything constantly dampened down.
I also take vitamin D3, calcium, and Q10 for energy/bone strength and to boost the immune system. At moment I feel great And have astounded my onc, GP, and orthopedist. I put it all down to being bloody minded, armed with reliable information and asking lots of pertinent questions, which your onc won’t mind.
I am also riding. my horse 3 times a week, walking about 10 miles every week with a walking club, ride my bike and a bit of gardening for good measure…all the things I was told not to do by my orthopaedic surgeon and well meaning friends!
I hope this info helps. My oncologist said she has had many ladies on xeloda for years for secondaries, and has a plan B if I have further problems…the key is to arm yourself with a list of questions to ease your peace of mind. Oh, and please don’t ask ‘how long have I got’, as this puts doctors in a dilemma as treating cancer is not an exact science… It can be a bit of hit and miss and depends on your hospital and oncologist and of course your type of breast cancer.
Best wishes
Jane, Newcastle upon Tyne
Hi Steris, I have been on Xeloda for 5 cycles at a reduced dost. I am coping reasonably well on this dosgae. I see my Oncologist after cycle 6 and have to get a scan at that point too. She told me before I started this time that I may remain on this indefinitely.
I have been on this drug before each time for roughly 6/7 months. But I suffered badly with Planer Planter syndrome which is sore hands and feet to you and me! But when my feet were really bad they halved the dosage as I wasn’t coping as it was like walking on broken glass.
So I am now on the lowest dose that I was on before if that makes sense. They weigh me each time I go to the ward. I get my Zolidronate infusion on Friday and if bloods are ok I will get my next round of pills. My feet are ok apart from some peeling/dry skin but my hands have been a problem at times and they are keeping an eye on the, I have a supply of disposable gloves which I use if doing anything that I think may harm my hands, like light gardening. I have also needed imodium for tummy problems during the pil taking period. The week off the pils is like a holiday for me! I had my tumour markers taken in Juanuary and they had both halved after just a few cycles of this chemo which is a great boost to hear if you are feeling rough at the time. Makes it worth it if you see what I mean. Hope you manage on this dose Chris, keep in touch, Val
Hi,
have you got any questions that would be relevant for the oncolgist to try and sway her to keep me on this. This cycle my hands/fingers have been awful. The pain has kept me awake for the last two nights. I must admit that I’ve had different side affects every month.
I’m really hoping to stay on this chemo as it seems to be keeping the little uggers at bay. I get sick and tired of all the post code lotteries we have in this country. I just wish we were all treated the same.
Thanks again for your replies and I haven’t heard of Calmurid cream before Jane. My GP prescribed Aveeno cream for me. I use a combination of Udderly, E45 and Aveeno had my problems as I had chemo reduced to 16650 twice daily as I couldn’t cope with the pain on the soles of my feet,
Love
Chris xx