New Secondaries - Treatment Plan

Hi all, I have posted on the liver secondaries thread about my mum’s recent liver mets diagnosis. We went to see her consultant today and she’s going to try her on Xeloda, she has to wait to see the chemo team before she can start the tablets though. I really hope it is this week, she said it would be and I think she was a bit surprised at my mum’s deterioration in a week.

If Xeloda does work how long would you normally wait to see an improvement? My mum is asleep a lot of the time, her feet and ankles are swollen and her stomach looks massive. Her doctor said she could have the fluid drained but that would involve a hospital admission and she would rather get started with the treatment and see if that shows an improvement.

The consultant did ask if I was medically trained so thank you for all the excellent advice and information so far, she said I asked great questions.

Thank you

Julie x

Thanks for letting us know how you got on - this sounds like a thoughtful response from the consultant. I’ve been on Xeloda for just 2 doses for my liver mets (I have 4) and within the first dose of 2 weeks I stopped feeling so tired and the discomfort around my middle started to go away with less swelling - am coming to the end of my second dose and keeping all fingers crossed for CT scan. Possible side effects such a hand and foot syndrome are not always easy to cope with on Xeloda (Capecetabine) but you and your Mum will find lots of advice on these forums on the " Bone and liver mets" forum etc - try searching for Capecetabine to give you access.

Please pass on my good wishes to your mother - and well done for getting such praise from the consultant based on your research!

Thanks Fran, it was a bit embarrassing admitting I had no training but had been reading this forum, she asked if that was a good idea, I said yes because a lot of the people on there are doing well and that makes me feel better, my voice was wobbling at that point so she said no more about it.

I hope it works that quickly for my mum, I don’t know how much bigger she can get. I hope your CT scan has good results, it is an encouraging sign that you’re feeling better isn’t it? Do they measure your tumour markers? I don’t think anyone’s mentioned that to us. Did you mean you are having 4 lots of Xeloda or have 4 liver mets? Sorry if that sounds ridiculous?

I’m going to order some of the creams that I’ve read about on here.

Thank you for replying.

Julie x

Hi Julie

As well as the support you are receiving from the forums you may find it useful to have a look at the BCC fact sheet on Xeloda. It explains what it is, how it works, when it is prescribed, the benefits and possible side effects. If you would like a copy or to read this on line just follow this link:-*/changeTemplate/PublicationDisplay/publicationId/116/

Hope this is helpful.

Best wishes Sam, BCC Facilitator

Thank you Sam, we saw the oncologist on Monday and signed all the forms ready to start the chemo. We were told someone from the chemo department would call and arrange for my mum to go in and have the tablets explained by the nurse and then she would take them home. We didn’t hear anything today, is it reasonable for me to phone.them tomorrow and find out when she can go in? It just seems ridiculous that she is getting more and more ill (hardly waking up and very very swollen) and the tablets are there which hopefully would make her feel better.

My mum asked me not to phone because ‘they are very busy’ so I left it today but I think I should ring either the chemo unit or the oncologist’s secretary in the morning.

Thank you for helping me.

Julie x

I’d certainly phone - I understand your mum not wanting to “pester” but she needs the treatment and a gentle prompt should get the response that she’d anticipated. I fully understand not wanting to appear pushy but I’ve grown to be more assertive since having cancer to chivvy when needed to prompt things along.
Hope she gets the call today - she’s lucky to have your support in this emotional time - take of yourself too.

Hello Julie, I would certainly phone the hospital. Without worrying you any further it might be your Mum would feel much better and less tired if she were to have her tummy drained. It might also mean the chemo can work easier as Xeloda has to work with a meal and your Mum probably won’t want to eat much at the moment with so much fluid. I’m no expert, only a patient with secondaries myself and I’m also on Xeloda. I really don’t want to worry you any further but I have been in a similar position as my Mum had late stage ovarian cancer with a very swollen abdomen. Thinking of you both…xx

Thank you for the advice, I called the chemo unit at Guy’s and they can’t fit her in until Monday. I did ask about having the fluid drained but they couldn’t fit her in for that yet either. They gave me a number to ring if she deteriorates. At the moment she just lies in bed (no tv or radio on because she can’t concentrate), she forces herself to come downstairs for at most an hour a day (I don’t think she would if no one was there though), she can only eat a tiny amount and today has actually not had anything, she is now taking cocodamol (sorry, not sure how you spell it), she is asleep most of the time.

This has been going on for so long now - she was ill and she was sent for an ultrasound in February which didn’t show anything, then she ended up in hospital because they were worried she had a blood clot in her lungs because she was breathless, they did a CT of her lungs in the hospital which showed the top of her liver and the multiple tumours therein. A junior doctor discharged her from the hospital saying there were shadows on her liver and she’ll get a letter from the oncology department.

After the eventual liver CT and finally seeing the oncologist we are still no further on with getting any sort of treatment. It’s just so frustrating and she is just so ill.

Sorry to vent but it’s just all so frightening and frustrating. I actually dread seeing her now because there is nothing at all I can do for her.

Julie x


I don’t have any miracle advice for you but I just wanted to say your Mum is very very lucky to have such a lovely daughter as you sound (and am sure you are!!).
Have you tried contacting Macmillan? They were tremendously helpful & supportive when my Dad was poorly.
I am sending you a huge cyber hug & hoping you get the help your Mum deserves very quickly.

With love,
Dugsy x

I’m really sorry to hear this Julie. Could your Mum’s GP help by getting the hospital to act any quicker? I know my own Mum became very withdrawn and just did not want to eat anything. I do hope your GP can arrange for your Mum to have her tummy drained as it must be very uncomfortable and I know how it left my Mum very tired and breathless.
Take Care…xxxx

Thank you Dugsy and Belinda, Dugsy you made me feel very emotional. I’ve had such a happy life so far (I’m 36), I’ve been lucky enough not to have had anything really bad happen to me so far. I think maybe that makes all this a little bit harder to take - certainly a bit more of a shock. I just wish I could do something to make my lovely mum feel better. Thank you for your kind comments.

Actually Belinda my mum’s GP phoned my sister last night to ask how my mum was (how nice is that?), at the time we thought she would be starting treatment very soon and told him that, but, as things stand it may well be worth giving him a call tomorrow although I think my mum may not like it as I can imagine she’d feel that she was going against her oncologist. I will definitely bring it up in the morning as I think she will probably be in a better position to start the chemo if she felt a bit better. Thank you for the advice.

Julie x