Just diagnosed with liver mets and put on Xeloda. Anyone with liver mets and Xeloda. Really scared out all of this and need some advise.
Hi llmac
i have liver mets and have finished taxotere. I am really sorry that you have come on these boards in these circumstances, its terrible I know.
There are lots of ladies here in similar circumstances they are probably all out enjoying the nice day (i have to do some work on my computer and have peeked in here) and I am sure that you will get some more replies soon. Xeloda is a very effective drug and there are people who have been on it for years, with time you can have sore hands and sore feet so watch out for that
its a terrible shock this and takes some time to get your head around, I dont really know if I am there yet myself, but you do manage to go on, lots of us met up the other day and it was nice to have a chance to talk in person, there is a big meeting being lined up on May 6th… if you have a look at the south bank tea you can see that.
I hope you are doing ok under the circumstances, why dont you post some more under the liver secondaries thread, there is lots of useful information there as well.
take care
Cathy
Hi llmac
I am sorry to read of your recent diagnosis. If you think it would help to talk through some of your fears and concerns please don’t hesitate to use our helpline. It’s not at all unusual to feel frightened in your situation and the staff on the helpline can offer you support and a ‘listening ear’. The lines are open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm and the number is free phone 0808 800 6000.
I hope this helps
Kind regards
Sam
BCC Facilitator
Hi llmac
Really sorry to hear that you’ve been diagnosed with liver mets - it is so very scary at the start but I’ve definitely found it gets easier. I was diagnosed last May/June with liver mets and have had Taxol and Avastin, which did quite a good job of shrinking things. Am now on Megace (a hormonal treatment). So can’t advise on xeloda though I know there are a number of ladies with liver mets who are on Xeloda and hopefully will post soon.
Have you started on the Xeloda? And are there specific quesitons you have? Do please ask if so and someone is almost certain to have an answer - I find my fears lessen if I feel I know what to expect etc.
As Cathy says, it also really helps to talk to others in a similar position - I was part of the group that met up on Thursday. I can’t make the meet on May 6th but know several others are going - and there’s another get together in Grantchester on Tuesday, and several others around the country too.It may be too soon for you to feel confident about meeting with others but do bear it in mind as it is really so supportive.
Sending you lots of cyber hugs
Kay xx
Hi Illmac
I’ve been on Xeloda for the past two years for liver mets and this is my third type of chemo and, by far, have found it the easiest although I am fairly lucky because I’m on a low dose because my liver was seriously compromised 2 years ago and they said my liver wouldn’t cope with a higher dose. Also, I don’t really suffer from the hand and foot syndrome that a lot of people do.
Another plus is that I haven’t lost my hair with this chemo and that would have been an issue for me not to have had hair for the past two years!
There are a lot of us on this site who are on this chemo and have varying side effects and the best ways of dealing with the hand/foot syndrome, some have found the ‘udder’ cream good whilst others flexitol, etc.
Hope this helps a little bit.
Take care.
Pinkdove
Hi Illmac
So very sorry you’ve had this diagnosis, but very glad you’ve found your way to this forum – you’ll get help, advice, support, empathy, laughs and invitations to get-togethers here. Like everyone has said, you’ll need to take some time to get used to your “new normal” with liver mets, and we all hope your treatment will really zap those mets!
I think I might be the “Xeloda Queen” on these boards, as I’ve been on this chemo for almost 4½ years after liver & bone mets dx in October 2003, first at a “regular” dose (2000mg x twice a day; two weeks on, one week off), but after several chemo-breaks and dose reductions because of hand/foot syndrome and some digestive problems, I’ve been on a lower dose (1000mg x twice a day; two weeks on, one week off) for about three years now. The combination of Xeloda and aromatase inhibitor (my BC is ER++, so I was on Arimidex for two years, now on Aromasin) shrank and/or disappeared most of the mets in the first six months. This combination has kept my liver stable for almost the whole of my time with mets – had some slight progression after two years, hence the change of aromatase inhibitor, which did the trick. At my most recent liver ultra-sound scan a few weeks ago, the doc couldn’t actually see my liver mets – bet they’d show up on a CT scan, but I don’t have any liver pain or symptoms, and my liver function tests and bloods have been “normal” since my mets dx, so I’m not clamouring for a CT scan. When you start Xeloda, please do, as others have said, lay in a supply of goos and gunks, to keep your hands & feet well moisturised – “udderly smooth” (search the words “not just for cows”) and creams with either aloe vera or urea are good, but I’m sure you’ll find whatever is best for your skin.
So . . . while it will probably be a terrifying time for you, please take heart that it is possible for our treatments to help us continue our lives in the “new normal” mode. And please also keep coming back to our Secondary Forum for answers, advice, support, etc.
Marilyn x
Marilyn
I was really cheered to hear how long Xeloda has worked for you and interested to hear that your onc combines xeloda with an aromatase inhibitor. I am on Arimidex, also for liver (and lung) mets but no suggestion of using Xeloda at the same time. The Arimidex does seem to be keeping things stable but I wonder if I should be asking about Xeloda?
Anyway, really pleased to hear how well your treatment has worked. It’s so encouraging for us comparative newbies to hear this sort of thing
Barbara x
Hi Marilyn
So nice to hear you have been on Xeloda for so long, I have been on Xeloda 1500mg twice a day for nearly two years started on 2000mg but had problems so Onc reduced the dosage I am just starting to have problems with my hands and feet so trying out numerous creams. My liver is working normally but still shows liver mets also having Zoladex hormone treatment. My Onc doesn’t give me many options such as reducing the dosage, but feel encouraged by you being on 1000mg.
Beli
Hi Barbara & Beli
I’ve been really lucky so far with my treatments, but I know a few of us haven’t had as much success with Xeloda, and have had to try IV chemo, which is not as easy on our systems.
Barbara, one of my chums has an onc who won’t let her have an AI + chemo at the same time – must be something my onc has decided to rebel against!
Good luck to both of you!
Marilyn x
Hi llmac,
I am sorry you find yourself here, but I’m sure you’ll get lots of support from the lovely people. I was diagnosed with primary bc and liver mets a year ago. I had 7 months of Taxol and Herceptin, and now I’m on Tamoxifen and herceptin, which seems to be keeping things stable so far (just had first 3-month scan to check).
Come on and ask anything you want to,
love Jacquie
Hi there,
I too have liver mets and had xeloda but unfortunately it didnt work for me, so am now on taxol, I did find xeloda an easy regime, although I only had 3 cycles. Hope this does the trick for you,
Love and luck
Suexx
hi sue , how did yu know it didnt work ? was it a scan ? i am on it now and not sure if it is working for sure , had bloods today and my GGT is up 14 points although they said thats nothing i am still worried .
Tracy
Hi Tracy
just to let you know I was on xeloda for 2 years 2300mg twice a day. Shrinkage in 1st year then stable for 6mths we are all different so I hope you will also have good shrinkage.
Love Debsxxx
Hi tracy1964
Havent visited for a while, sorry to answer you so late, I had 3 cycles then an MRI scan which showed my liver lesions have “progressed” which means they’ve spread to other parts of my liver.
There of loads of ladies who have fantastic results with xeloda, this wasnt the one for me but Im sure if your onc was worried he would be scanning you to keep an eye on things. My onc doesnt do the blood test youve mentioned if your onc isnt worried then try to take his lead and relax a bit, I know how difficult it is, stay strong, and keep positive
take care
Sue xx
hi limac
ive been given 1800mg of xeloda to take twice daily. i have liver, lungs and brain mets. my dose has made my feet very very sore, they look black and blue sometimes. i started to use e45 but the nurses recommended a cream called Aveeno which you can buy from boots, its made from oats and i really noticed a difference straight away. the soremess reduced but skin still dry and becoming flaky.
like the other comments we will have to keep moisturising for a long time to keep our feet smooth!
good luck.
Hema
xx
Hi llmac
sorry I have only just seen your message.
I didnt really suffer that much one of the problems was the skin under my feet got really hard and itchy solved this by getting my hubby to rub my feet each night with E45 cream my feet are still as soft as a babys bottam. I also got the dreaded poos usually in the middle of the night but boy did I feel better the next day. It didnt matter what I took my bowels were a disaster. Towards the end my breathing was a bit poor but it still is so I think that isdown to general deteriation. It is a good drug and you can plan things around it so we had plenty of breaks which I am so grateful for.
Hope this helps.
Love Debsxxx
just to add to Debs, yep i have the dreaded poos too but it controlable and i feel alot better afterwards too.
Hi all
I am starting on xeloda on Thursday - my latest scan has shown quite a lot of progression within the liver. So have picked up a few tips from this thread - will go and get some creams tomorrow.
Wanted to ask though whether you all think it would be reasonable to hope to keep on working? Really want to carry on working (have only just gone back to my full hours after my op in January and Taxol last year) and it does sound as if the side effects are manageable. But I also want to be realistic when I talk to my boss and HR next week. Onc is starting me on a lower dose but not sure exactly what dose, and may increase it if (when?) liver function improves, depending on side effects. How tired do people get on it?
Can I ask also Debs and Hema whether the “dreaded poos” are following constipation or the reverse?!!
Thanks
Kay xx
Hi Kay,
There seem to be several different responses to xeloda. Some women experience sickness and diarhhea or constipation but the majority do not. If you are one of the fortunate ones who tolerate it well, work should be no problem for you. I have only really become tired recently (been on it since Jan '07) and a few early nights would probably deal with this side effect. I have had no bowel issues to deal with bar the odd day here and there but nothing debilitating. I suggest you tell boss and HR that you need to give it a few days to gauge your response to treatment and then take it from there. The dreaded hand/foot syndrome tends not to be an immediate side effect but is cumulative over some months.
Hope you get a great response to it and tolerate it well.
Jenny
x
Hi Kay
the poos usually followed constipation and were always on the week off from chemo. With me it soon get into a regular patern I think if you can keep your bowels regular you could be o.k.
Good luck
Love Debsxxx