hi ,
i have had some great support from ladies here with secondarys but i just wondered how long are you taking xeloda and do you have a break then go back on it, i spoke to my oncologist and he said i will probably have 6 or 7 lots ,i am also taking it wih herceptin, he says i will then just stay on herceptin, also my white blood cells and neuts, plts and hb have increased since taing xeloda which i find really strange and slightly worrying is it working ??
thanks galen xx
Hi Galen
I too am on Xeloda, and am on cycle no.5. I did ask my onc how long I would be on it for as mentioned others that have been on it long term. He said not sure, but latest scan showed no growth and slight shrinkage. He said as long as it works will stay on it. I am also on Herceptin as well, have been since Dec 07. So hopefully the two together will give me some more good results.
I hope it works for you and for me and our results are good.
It seems that depending on where u live to how long they give treatments for.
Sorry not much help really am I.
Take care
Dawn
xxxx
Hi, I have been on a constant Xeloda for nearly 2 years. My bloods have held up well throughout and I will stay on Xeloda until it stops working. I hope you will find it’s working well for you…x
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Hi – I’ve been on Xeloda (1000 mg x twice a day; two weeks on & one week off) continuously for over six years. My onc is very keen for me to stay on it as long as (a) it keeps working, e.g. it keeps my liver & bone mets stable, and (b) I can continue to tolerate it. So far, so good, and I do hope it works as well for you as it has done for me!
Marilyn (the Xeloda Queen) x
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Thank you so much for the replies, im having another wobbly day, my hubby has just gone back to work this week after taking 8 weeks off to be at home with me since my mets diagnosis, so im just needing reassuance again and feeling a bit lonely ! dawn your reply was great and all info is useful, i will wait and see what my scan shows in march, i also have just spoken to my doc regarding my white blood count and he told me its a good thing !! shows im coping well, thanks again xx (sure i will be back soon with something else !)
love galen x
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hiya everyone
i too am to restart xeloda on monday im slightly nervous cos i had quiet a bad reaction to the first one which i had several weeks ago, but i am at quiet a low eb at the moment.
i had fec 2 years ago, for my breast cancer which was 6 cycles, i did ok until just before christmas but my tummy started swelling and i was told it had spread to my tummy and i have ascites. which i keep having to have a drain put in to empty. anyway i was rough before my first xeloda and it had to be put off.
i think i started it before i was quite right, but the specialist felt i had to give it a try
i just about managed to take the tabs for 2 weeks, i was on 4 large and 2 small tablets, but i found it so hard, i used to heave before i took the tablets. and had a lot of trouble trying to eat.
my bowels bled a lot, and eventually my white cells went to 0 but by then id gone back into hosp. i couldnt eat or drink because my mouth was so sore with ulcers, so they give me 3 mouthwashes to use.
it had sent my potttasium right up. and they had to give me loads of stuff to bring it down, iv,s mainly.
all in all i feel so weak after being in hospital for 5 weeks, i have no strength in my legs, and dont feel up to starting chemo tommorow, but without it, we all know what the consequences would be.
sorry to off load, any of u, been this effected, and can offer any advice please x
Sorry I haven’t any experience of Xeloda yet (will do shortly) but just wanted to wish you luck with your next dose. It sounds like you have had a really awful time lately so I really hope that your luck changes for the better now.
Linda
thankyou linda, thats kind of you, dont let my experience worry you because my sister took it, and was fine on it x
Hi There, I am not on Xeloda at the moment. But had 8 months of it last year. I first had Xeloda 2/3 years before that but had a higher dose and had bad side effects as I had what they call Palmer Planter Syndrome which gave me sore hands and feet. When I went on to Xeloda last year I got a reduced dose and coped with the drug much better. Although I am not taking it just now, my Consultant has said I can have it again. (I got a break of 18 months after my first course of it). I knew it was working for me as they examined my blood tests and could see my CEA and CA125 levels were reduced after each course. If you want to ask any questions feel free to PM me or post on here. I know that I feel much better than I did this time last year. I have bone mets in my sternum, ribs, spine and pelvis. Love and cyber hugs to all posting on this thread, love Val
Warm wishes to everyone who has posted. I’m currently on my second cycle (1650mg twice a day) and, so far, no side effects…and this is what I want to ask: appreciating that everyone is different, how long did the side effects take to kick in? I’m thinking specifically about hands and feet. I’m moisturising like crazy and am fine but wondering if it has an accumulative effect. Hope I’m not hi-jacking the post.
Thanks
Alison
Hi Alison, I think it took about 5 months before I really noticed any dryness re hands and feet. After a year of this chemo my feet were considerably better and my hands have never been much of a problem…I often forget to put hand cream on, I wash up without rubber gloves etc. I’m just passed the 2 year mark on these tablets and will stay on them while they continue to be effective. I hope Xeloda works well for you…and everyone else here…xx
hi girls,
I’ve been on and off Xeloda along with Taxotere for the last 4 years. I took a bad reaction when getting taxotere last time so can’t get that any more. Oncologist has kept me on Xeloda for 3 or 4 more cycles then will do scan to see how things are. I have secondaries in my ovary and pelvic area. Get a lot of fluid which has to be drained. SE’s from Taxotere were pretty awful so don’t know now what it will be like with just Xeloda. Just started yesterday and so far feel OK. I do have sore hands and feet and horrible nails. Hate taking the tablets as they just make me gag.
All the best everyone with Xeloda
Sheila
sheila
i know what you mean about tabs making you gag, im the same,i am a christian so i know you might laugh at this, but every tab i take, i say through christ i can do anything. seems to help me. but nurse suggested crushing them and taking with yoghurt if it would help?
you seem to be very similiar to me in your treatment, i too have to be drained regularly because i have ascites, but i have so much trouble getting it done when i need it. like its really uncomfortable now but i phoned up yesterday and they said it could be next week.i know they dont like doing it while your having chemo, but it just gets too painful. look forward to your reply x
I have just started potentially 8 cycles of xeloda, although having 6 to start with. Also on lapatinib, letrozole and zoladex inplant. Until reading this thread I didn’t realise that xeloda was used long term with breast cancer. I thought it was just the other cancers that it is used for that had a low dosage maintenance. Started Tuesday, so no noticable side effects yet. On so many different drugs and injections at the moment that its hard to tell which ones give you which side effects. Currently popping just short of 25 pills a day.
Snoogle
x
Hi,I am currently on my 5th cycle of Xeloda and my Onc says I will be on it for as long as it works. Just waiting for a scan in April and keeping fingers crossed. The side effects are just beginning to kick in with sore feet and yucky, painfull big toe nails.
Good luck to everyone else on this drug and of course any other treatment.
Lesleyxxx
Everydaymatters
Pleased to get your reply particularily the bit about being a christian. I too am a christian and know that I have managed to get through this awful ordeal with the prayerful support of all my friends and family.
Xeloda is OK on it’s own. Feel so much better not having the Taxotere. I am sure you will be able to cope with it.
Lesley - know what you mean about sore feet. Toenails are horrible and fingers not much better. Nails just fall off. Like you I will be on it long term as it does keep tumour and fluid at bay.
Sheila