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liver mets and xeloda

33 REPLIES 33
hemly31
Member

Re: liver mets and xeloda

i recently had a welfare benefit person help fill in the DLA form and im just waiting to see if my onc will fillin the DS1500 report form which im hoping he will. if the claim goes through i will be applying for a blue badge too, i have to drive into london for my treatment so will help with congestion charge and parking,

i also had a macmillian nurse come to see me this weel. she was really helpful and helps liase with my gp and onc if need be. as my onc is in london i can ring her up at anytime if i start to feel worse it made me feel at ease knowing that there is someone here locally for me.

xx

ForumMember
Member

Re: liver mets and xeloda

Hi Tracey and Kay

Tracey - yes, I do have twinges from time to time in my liver and I'm never sure whether it's from my tumours or if it's the xeloda doing its work! I like to think it's the xeloda doing its work......

Kay - really pleased that you've got a different HR person. It makes a huge difference and I hope that I helped a lot of our employees as I saw myself as the 'go-between' for them and their particular manager and finding the best possible solution for both. Good luck with the Xeloda - I've been very lucky on it in that I've tolerated it very well and fingers crossed that you will do as well.

Kay123
Member

Re: liver mets and xeloda

Hi Lolag (and everyone else)

Started on xeloda today - reduced dose of 1800mg twice a day which he will increase if I tolerate it well. No side effects yet!! ANd feel so much better for knowing something is now hopefully stopping the tumours in their track. Good to hear that it has shrunk your tumours so well - there seem to be quite a lot of people who are doing really well on it. Hubby has been put on foot rubbing duties!

Think I have decided just to see how things go with work - chatted to onc today briefly about it and he said he thought I should just "carry on as normal"! Claimed for DLA after my failed liver resection in January so that is all sorted. I haven't bothered with a blue badge as my mobility has been reasonable (in fact was improving as I recovered from the taxol last year and the surgery) but might do now, so that it's there if I need it.

Lynn - as others have said, you really do need to ask those questions you have as otherwise you are just putting yourself under tremendous strain. Have you got a breast care nurse or oncology liaison nurse you could chat to? Sometimes that's easier than trying to grab the onc and they have in the past raised issues with the onc for me, if they don't know the answers. I think Jacquie is right too in saying that they don't always tell you stuff - think they are always trying to judge what info you as an individual need/want to hear.

Hugs for you all

Kay xx

Lolag
Member

Re: liver mets and xeloda

PS - remember you have rights at work under The Disability Discrimination Act.

Lolag
Member

Re: liver mets and xeloda

Hi Kay

I started Xeloda in December 07 for mets in the liver, bones and lymph nodes of the chest. Back then I couldn't walk more than 15 steps without becoming out of breath. Things gradually improved and my latest scans showed significant shrinkage of the tumours.

My greatest problem with Xeloda is that initially it made me lose my appetite and I lost a stone in weight. I've gained half of what I lost now and feel much better. I have level 1 hand and foot syndrome (redness but no pain or peeling) but I've been applying aqueous cream faithfully every night and morning. Keep a note of all side-effects and mention them each time you go to the clinic. There are lots of medications that can help and your oncology team really do want to make you as comfortable as possible.

As regards work, I think it's an individual thing. I haven't been working since my mets diagnosis but that's because I still get tired and need my afternoon nap! Make sure you apply for Disability Living Allowance under the special rules. You get the care component automatically as long as your GP agrees to give you a DS 1500 report and you can even get it if you work.

Other than this all can say is good luck. It does get easier, I promise. You just find your way of coping.

Hugs,

Lolax

hemly31
Member

Re: liver mets and xeloda

Hi Lynn,

i agree with Jacquie, i got to a point where i was trying to cope with the pain and thought it was normal to feel what i was feelilng. you need to ask as many questions as you need, it may feel that your taking up all their time but this is YOUR TIME and you need your questions answered.
dont do what i did and wait until the last minute for effective pain relif, i was put on other small meds which didnt work at all and now im on pain killer patches everyday which helps alot.
Me and hubbie always take a list of questions to the docs so we dont forget, it feels wierd at first but atleast you will leave the clinic with questions answered and much happier.

Good luck.

Hema

xx

Jacksy
Member

Re: liver mets and xeloda

Hi Lynn,
That is 'your' time in the clinic. However busy they are, they have a job to do and an important part of that job is to make sure you understand everything and have the opportunity to ask whatever you want. Please take a list of questions and a supportive partner/friend who won't let you leave until you have answers. I think often they don't tell you stuff until you ask because we are all different and some people don't want to know. Maybe I'm just being charitable and they are not giving you enough time!
Wishing you the very best for Monday, and a hug for the waiting....
Jacquie x

aroma
Member

Re: liver mets and xeloda

im having regular ct scans for secondaries on my liver that were actually there when i was first diognosed with bc in 2006,as i am having pain in that area im to have these scans every 3 mnths .does that mean i wont have to have chemo again? as i had fec before my mastectomy and taxotere afterwards . im getting results of my most recent scan next monday ,and im really scared now as the pains are increasing ,they are copepable with pain killers but i take pain relief for joint pain from the arimadex .thos is getting so confusing ,and due to the sheer number of patients at clinic i dont feel that i get enough time to actually talk things through ,and i dont want to make a fuss .the doctors are overworked enough as it is. ive recenlty lost a sister to bowel and liver cancer so you can see why im worried .i should bevery glad to hear from anyone who has been through similar .thanks lynn x

Kay123
Member

Re: liver mets and xeloda

Thanks for all the info/advice. It sounds quite promising with regard to work. Like you Hema, I want to carry on working as it feels like keeping a little bit of normality but clearly don't want to continue if it is really going to be too much. Not fair on the children (and parents) I work with either. But it does sound reasonable to assume that I can keep going for the moment at least.

Have got a new lady in HR, Carol, who is completely different to anyone I've ever met from HR before (not including you of course!). She's very keen to adapt things to make sure I can continue working, has set up regular meetings with me and my line manager, and has put all kinds of things in place for me. So will be very happy to discuss things with her (as well as the staff at the provision). Only problem is that she is with us temporarily for 3 months to fill in for someone else - and leaves at the end of the month. Hope the person who is taking over from her is similar........

Thanks again for all your help.

K x

Belinda48
Member

Re: liver mets and xeloda

Hi Kay

I am on Xeloda and have been since May 2006, I started off on a higher dose which didn''t agree with me I had the runs big time, mind you I really wasn't very well with my liver as it was very enlarged. Since then I have been on a lower dosage and seem to be fine. My hands and feet get sore and cracked but that has not always been the case it has got worse the longer I have been on Xeloda. I now know that on he second week of my chemo to take it easy and stay off my feet as much as possible. I have tried various of creams which help also Manuka honey is quite good a bit sticky. As regards work I stopped straight away but that because I wanted to have time for myself I felt I deserved it. I do get tired but I think we are all different we all tolerate things differently if you feel you can and want to work then go for it.

All the best Beli x

debsincornwall
Member

Re: liver mets and xeloda

Hi Tracy
I had the twinges and it usually was followed by a scan that showed reduction. I am having them every now and again on tax and avastin.
So fingers crossed its good news.

Love Debsxxx

tracy1964
Member

Re: liver mets and xeloda

pinkdove do you ever get liver pain or twinges on xeloda?

ForumMember
Member

Re: liver mets and xeloda

Hi Kay

I've tolerated Xeloda really well and have been on it since 2006. I too started off on a low dose because my liver couldn't take a higher one but it has been increased since my scans have shown an improvement.

Never had the trots and I seem to tolerate the hand and foot syndrome well. I think it goes to show you that we all react differently.

Can't really offer you any advice on working or not. I know when I met you at the focus group you wanted to continue and I think if it means a lot to you then I'd see how it goes and talk to those nice people in your small unit not the HR people in the big bit as you were saying!

Take care

Carol

hemly31
Member

Re: liver mets and xeloda

hey kay,

yep i have the runs with xeloda and ive only been on it for 2 weeks. before that i was on other chemo drugs which made me constipated, but i do feel in the day a little constipated when i want to go and im taking movicol.

work has been difficult for me at the moment with being dx with liver and lungs in jan and the brain mets last month my emotions and coping with the diseases is hard and i forced to take the time off for me to get better, work for me was a normal thing to do and i really wanted to keep hold of it but i had to do whats best for my health.
with work i think you should see how you are with the chemo and take it from there, last thing you want is to over do it and take on more than you can handle. not sure if it is the heat but i tend to get tired throughout the day and try to sleep but am still tired.

keep me posted on how your doing.

Hema

xx

debsincornwall
Member

Re: liver mets and xeloda

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

Jennywren
Member

Re: liver mets and xeloda

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

Kay123
Member

Re: liver mets and xeloda

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

hemly31
Member

Re: liver mets and xeloda

just to add to Debs, yep i have the dreaded poos too but it controlable and i feel alot better afterwards too.

debsincornwall
Member

Re: liver mets and xeloda

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

hemly31
Member

Re: liver mets and xeloda

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

suecco
Member

Re: liver mets and xeloda

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

debsincornwall
Member

Re: liver mets and xeloda

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

tracy1964
Member

Re: liver mets and xeloda

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

suecco
Member

Re: liver mets and xeloda

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

Jacksy
Member

Re: liver mets and xeloda

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

Marilf
Member

Re: liver mets and xeloda

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

Belinda48
Member

Re: liver mets and xeloda

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

manon
Member

Re: liver mets and xeloda

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

Marilf
Member

Re: liver mets and xeloda

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

ForumMember
Member

Re: liver mets and xeloda

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

Kay123
Member

Re: liver mets and xeloda

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

Sam_BCC
Member

Re: liver mets and xeloda

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

KatherineM
Member

Re: liver mets and xeloda

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

llmac
Member

liver mets and xeloda

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.