Xeloda as a maintenance treatment

Hi everyone

Can I ask those who are on Xeloda long term if they are receiving this through private healthcare or on the NHS. I saw the registrar this week and asked about the dose I would be on for maintenance and she said that they dont give it for maintenance and that I would only be having the 6 cycles. I live in the North East.I feel really flat now as after reading all the positive posts on here from women who have been on it for years I assumed that that was the course for everyone as long as it was working. I will ask the Onc when I see her in 3 weeks but I asked the nursing staff in the chemo unit and they have never given it long term.

Maddison

Hi Maddison
My treatment is privately funded and I currently have authorisation for8 cycles and am on the 2nd. I understand that if it is working, and it’s too early to tell really, I can stay on it long term. My chemo nurses certainly have patients who have been on it for a long time. Hope you get some answers
Best Wishes
Kathryn

Hi Maddison,

I did not realise the post code lottery stretched as far as Xeloda. I find it a bit strange that your onc talks of secondary bc in terms of ‘maintainance’. I think most, if not all of us, are constantly having treatment which constitutes maintainance in so far as secondaries are incurable and if we are not ‘maintained’ we suffer progression.

I have my treatment on the NHS and have been on Xeloda now for 18 months. When I was initially prescribed it, I asked the consultant if I could stay on it indefinitely and he said yes, as long as it was working or I could tolerate it.

Where abouts are you in the North East? Our Xeloda queen, Marilyn, has been prescribed this medicine for more than 4 years now and is treated in Manchester (is that right M?).

Jenny

Hi Maddison & Jenny

Xeloda Queen here! Just posted my response to you about this on the other thread, Maddison, so won’t repeat here. I suggested a discussion with your onc (as opposed to her registrars), but you might want to go to a different onc for a second opinion, if you’re still being told that you won’t get Xeloda as a “maintenance” treatment. As Jenny says, with mets, all our treatment is “maintenance”.

Marilyn x

Hi Marilyn and Jenny

I think that because I have seen so many women on this site who seem to be having Xeloda long term that I assumed it would be the same for me. although at the back of my mind I am sure the ONc said thae advantage of the drug is that you can play around with the does and can have it long term (but my memory plays tricks and I might have dreamt that) Wish I had written down what she said. I see her in 2 weeks so will ask her about it. I would just feel happier if i was taking something long term which was helping. I live in Darlington and have my treatment at Stockton. will post this on the other thread as I want to get as many opinoions as possible.

Maddison

Hi Maddison, at my hospital you are not kept on Xeloda for long periods but can go back to it if it’s worked before. I’ve just completed my 4th cycle and have had none of the nasty side effects but not sure if Xeloda’s working…or doing much although things are stable. I have bone mets and keep reading here and there that chemo often doesn’t work as well for bone mets as it does soft tissue mets. Belinda…x