Capecitabine - I am on round 53!! anyone else like me??

Hi everyone,

I was diagnosed 3.5 years ago with advanced mets in liver, lungs and bones. I have been on Capecitabine now for 3 years and I have got rid of my mets lungs and still have liver and bones, the liver tumours are now looking necrotic which is fab. My oncologist does not know anyone who has had so many rounds of this drug. How is anyone else doing with this wonder drug??

whoop whoop LisaM1972, i am posting to say how fab, great to see such a positive post

((((hug))))

rhian x

That’s brilliant Lisa ! I’ve been taking it for 2 years, 9 months. For many people it certainly is a wonder drug.
love Jackiexxx

Hi Lisa

That is famntastic news for you and great to see positive posts about Capecitabine (Xeloda).

I have just started Xeloda, after being on Herceptin alone for 2 years, but last scan showed some movement so have been put on it. I am on 4000mg a day, 2000mg in morning and 2000mg at night, and so far, touch wood, no side affects.

Am bit confused though, as when asked chemo nurse about being on it long term he said prob not and i said I knew people who had been on it for 2 years, and he said he had never hear of that.

I am seeing my onc on 20th jan, so will ask him then too when we see what the scan results as to how long i can/will be on it.

Hope everyone has a great christmas.
Love
Dawn
xx

Hi Lisa, No I think you are the longest person to date…I was on it 3 years ago for about 6/7 months. Then was on it for 8 months this year and just recently stopped it with a view to restarting again when the need arises. I take it for just bone mets and the markers certainly go down with each cycle, so I think it has kept me going for a long time…which is great. Well done Lisa…and everyone else wh has gone down the Capacitabine route…love Val

3.5 years is really great going! I got two stable years from capecitabine for my liver mets. However, we do have a xeloda queen who I am sure will see this at some point, and confirm the details…

Jenny

(Edited to say - confirm how long she has been on it - my last sentence didn’t really make a lot of sense.)

hi, thanks for your post i started my 1st round yesterday, very encouraging post
galen x

thanks for all your posts - it doesn’t seem the oncologists communicate between hospitals or areas - it is just good to spread some good news. We are looking for the world record holder - no seriously our oncology unit is - again to spread the good word. So, ask around and post away!!

Merry Christmas everyone.

Lisa

Well, the BCC record-holder is having problems getting onto the site at present, so I will just add that she is in her sixth year on xeloda.

Jenny.

Hi all

As Jenny promised, here I am, six years since I started on Xeloda for liver & bone mets!! I am one of the lucky ones for whom it’s worked very well, without too many vile side effects, reducing and then disappearing my liver mets, and helping to keep my (quite extensive) bone mets stable. Started out on 2000mg x twice a day, but I’ve been on a low-ish dose for over four years: 1000mg x twice a day, two weeks on and one week off, and really hardly notice I’m on chemo at all.

I so hope all of you on it now are getting as good a response, and that it’s treating you kindly.

I know that some people with BC mets in the States have been on Xeloda for a long time as well, but I think I’m the record-holder here in the UK, and would be very pleased to take part in any review or research on using it long-term – please PM me for more info.

Love, Marilyn (the Xeloda Queen)

Fantastic news marilyn - can’t wait to tell my hubby and my other friends on it, they will be delighted. Will update my oncologist too. Thanks for your positivity and all the best to everyone else too. happy new year to you all.

Hi, What fantastic news. I am 4 days into my 2nd cycle of 2000mg twice a day and so far no problems just a little nausea but nothing to complain about, oh except Christmas night, the last day of my 1st cycle and I felt really unwell and spent Boxing Day in bed absolutley kn…d but that could be due to the excesses of Xmas. When I asked my onc if the treatment did manage to stablise my mets (lungs, liver and lymph) would I be going back on hormonal treatment he said no, if Capectabine stablised them I would staying on it for as long as it continued to work so heres hoping. Its very encouraging to hear of others doing so well on it and for so long too.
Love Lesley xx,

Hello all

What good news and reading your posts has given me renewed hope that my secondaries could be controlled too. Early days for me yet, I have only had the first 3 cycles of carboplatin and gemcitabine for my lung and bone mets. I had a CT scan on Monday and get the results on Friday, I hardly dare to hope for good news.

I see my Oncologist on Friday and I will ask her about this wonder drug.
I would be really interested to know at what stage you have been given capecitabine?

Many thanks

Sue

sue,

I guess you have the results by now - hope they were positive. Apologies for delay in replying but have been so busy at work, no excuse I know when you are anxiously waiting for a reply.

My oncologist told me this at the time 4 years ago - that there were 4 known drugs to treat my disease (there are more now don’t panic) and each had a percentage of working and being successful, so they start with the highest one first which for me was taxotere which had a 70% chance of working - well it did not for me, so then I was put on capceitabine that had a 60% chance of working and it did - in bucket loads - so I treat the stats with the contempt they deserve.

Since my diagnosis 4 years ago, more drugs have come onto the market - i.e. lapatibnib and I figure that if I can outlive the researchers - then I will always be fine!!!

I know and appreciate it is scary but have faith in your drugs and treatment and do what suits you, if you think complimentary therapy is for you, then go and have bucket loads, everybody reaches for different things. Whatever we do brings a little control back to an otherwise uncontrollable situation.

Be happy and live longer is my motto.
And here I am moaning to my husband because I have a common cold and I think that is worse than my internal tumours!! ha ha. shows you how well inside I am feeling and you can too!!!

All the best
If you want more advice anytime let me know
Lisa

Hi Lisa

Thanks for that, again really encouraging news.

I did have good scan results, the tumour in my liver had reduced by nealy 50%, and there wasa reduction in the one that can be measured in my lungs (good news I think is that the others were too small to measure) and my Onc thinks that they have improved in my bones slightly as well. She says bones take longer to show much improvement, soft tissue shows more quickly.

The only thing concerning me now is the stranged red lumps that have started to appear o my legs first and now on my arms. They are tender to touch and have worsened over the last 48 hours so that if I knock the one that appeared first, and is now the reddest, it is quite painful. Anyone had this happen whilct on carboplatin and gemcitabine?

I asked my BCN on Friday morning and the Onc said that Gemcitabine can cause a rash but this is not really a rash. I am going to call into the hospital tomorrow on my way to work and see what my BCN thinks and take it from there.

I will let you know what happens!

Lumpy Sue!!!

Arrrhgggggggggggg I start this drug on Tuesday am dreading it can any one tell me you can have normal sex etc; just incase I get lucky! Also when do you start to feel any side effects-am taking the 1st 3 days off work, and have a buddy staying each of those nights. Any info please

hi
started on the capectibine tabs just after christmas, but dose was too high so had bad side effects, and hhave ascites in my tummy a lot which need draining, along with other problems. have caused a delay so ive only recieved two, and then i worry incase im not going to get enough in my system. but its out of my hands and i just have to leave it to the experts. so glad to hear of those of you who have done well with the treatment . keep up the good work x

When taking capecitabine long-term, what about lowered immunity and risk of infection? On my EC chemo I was scrupulous about eating safe foods, keeping away from children, not using public transport etc. for the middle week of the 3-week treatment cycle. Is this important with Xeloda too?

Hi mrsblue
During the 6+ years that I’ve been on capecitabine, I haven’t been quite as rigorous about keeping away from sources of infection as you have with EC, but I do try to avoid people who are sneezing/coughing/spitting. So far, I’ve been pretty lucky, with only a few colds/infections, but we’re all so different in the way we respond to our cancer, our treatments and life in general, so I’d say it’s probably wise to be careful. I try to remember to wash my hands after being out, and also use that antiseptic gel. You can only do so much, though . . . Hope the capecitabine is working well for you!
Marilyn x

Hi Marilyn

Thanks for your reply - very helpful! Actually I’m not on capecitabine (yet…) but it will probably be an option when I need another chemo.