I was diagnosed with bc and liver and lung secondaries last September (2007) After mixed results on epirubicin I responded very well to herceptin and taxotere. My scan in May when I finished chemo showed no evidence of disease in the lungs and significant improvement in the liver I have continued with herceptin and felt well and able to put my life back together I thought it was over last year when I heard about the cancer, but hoped that herceptin would keep things stable and a might have a few years more.
I even when out and got mys4elf a wonderful new job and was so proud of doing that after all that I’d been through over the last few months. I had a lovely holiday in Whitby last week and came back to london to get the results of my latest scan yesterday before starting work today
However, life can be so cruel! Yesterday at the clinic I was told that the herceptin clear is not working on its own and the liver tumours are a lot bigger I have been offered Xeloda to start in 3 weeks.
The shock of this is only just sinking in I went to work today to take my mind off things and because I didn’t know what else to do They know I have had cancer treatment but I haven’t said anything about what has happened It was so hard trying to be cheerful and friendly all day, while trying not to cry
I’m wondering whether I will be able to work on the xeloda I’m also terrified that I’m facing an endless cycle of chemo that will work for a little while and then the cancer will come back I don’t know if I could bear that
I know there are ladies on this site that are worse off but I feel my life has been destroyed for the second time in a year and I don’t know of it is worth carrying on.
Any advice, support kindness would be appreciated as I don’t know what to do
Laura, I just want to send you my love and best wishes and hope that you can find the strength to take on this cruel illness a second time. I don’t know what else to say, but had to say something as your post made me feel so sad for you.
this site has been a godsend to me at times like this, …what can i say ? I know how you feel, your story is similar to mine in terms of timings, i had the same news myself today and will start taxol and avastin next week…and to top it off you have to deal with a new job. I admire you for going out and getting a new job, you must be really strong to do that and then go in after getting crap news…(I went home!). There are plenty of ladies here who have done really well on xeloda and its worked for and they are continuing to work. I think alot of people tolerate it quite well and manage to carry on pretty normally.
I’m sorry you are having such a tough time, can I suggest that you give the BCC helpline a call and talk in confidence with one of our trained members of staff. Here you will be able to share your fears and concerns with someone who will offer you a listening ear as well as support and advice. The number is free phone 0808 800 6000 and the line is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm.
So very sorry you’ve both had s*** news. My own cancer is progessing slower than yours in that its still not in major organs but growing it is nonetheless in my neck and chest wall and now causing pain…I am back on chemotherapy next week too…taxol weekly.
Laura: Of all the chemos I’ve had xeloda was the easiest to tolerate. I did have one cycle with bad diarrhoea but once the dose was adjusted it was OK and I had minimum fatigue. I know some women who have been on xeloda for several years and its still keeping their cancers stable.
Wish I had some comforting words…but don’t…basically think its all just a nightmare and never been under any illusions that all the treatments do is give us bite sized (if we’re lucky as I have been comparitively) chunks of life. Some days I could just lie down and, shut my eyes and wave goodbye but somehow i don’t…somehow something perks me up…often a joke, some trivia rather than the deep meaningful stuff.
Not sure I feel worthy enough to comment but am aware that it is quite late and would hate you to think that you don’t have a lot of support.
As somone else has said this is such a s**t journey we are on. None of us knows in which direction we will end up and we are all at different stages and different places.
I have the luxury of being near the end of my first and hopefully only treatment but none of us ever know. I am so very sorry to hear your news and feel somewhat embarrassed that I might say the wrong thing but here goes …
From what you have said you are a fighter - you have done the best you can and picked yourself up and were trying your best to get back to normal. Now you have had a HUGE spanner stuck in the works - with appalling timing. Every time any of us on here gets a change of plan we feel like we are having a derailment (I do anyway). You have had an enourous change of plan at a time when you had just let your guard down and were ready for some fun.
The news you have had is awful - the news we all don’t want to hear. Anyone of us hearing that would be bowled over by it - so you are bound to be feeling awful right now. Having said that - you will adjust to your new and unexpected position and do exactly what you did last time - plan the best course of action in the circumstances and go for it. That’s all any of us can do.
It must be doubly confusing in that no-one knows what you are going through. Believe me when I say I undersand that as I am still in the closet (nearly a year on) and it can be most surreal when people think you are in one position when you are in fact in quite a different place! It feels like being in some sort of peculiar film.
We are mostly women on here and without wanting to be rude to any men on here women are brilliant at coping with S**T and making the most of what we can. That’s what you did last time and what you will do again. Where you are now is very frightening as you’re not even sure exactly what you’ve got to do but once you’ve got your head round it all you will just get on with it and do your best.
You have had a huge shock and once you’ve picked yourself up you will feel very diffferently than how you feel right now.
I hope I haven’t been patronising as it must seem very easy for me to be sitting here writing this when I’m not in your situation.
Give yourself time to adjust and rethink.
Wishing you the very best of luck with it all
{{{{{ big hug }}}}} love FB xx
Hi Laura I like Fizbix am just finishing my course of chemo for my first dx and so have so far only had to deal with one lot of treatment but can sympathise with you as I have a sister who has just undergone chemo for a recurrance of her bc and she like you was devastated when she had to start it all again. I myself have been taking xeloda for 10 weeks now and I have had no side effects from it. The side effects I have had are hot flushes and aches and pains (down to the menopause not the xeloda) As it is in tablet form it is easier to tolerate for most people and I would say if you don’t have any bad side effects (which some people do) then yes you could probably continue to work the only problem may be the tiredness which sometimes creeps up on you. You also don’t lose your hair and so you at least look normal. Please don’t despair as you can always come on here to sound off and get support.
XX
You are so welcome Lara. Some posts on here make me feel really emotional and sad, and yours hit the spot. I wish I could give you a big hug, but I have sent a cyber hug instead.
I am so sorry to read your news - it is always so traumatic when one hears the dreaded ‘progression’ word.
I would just like to add my xeloda ten-penneth here.Some people do find xeloda difficult to tolerate, but for those who don’t suffer any untoward side-effects, you would not really realise you were having chemo at all. It should be perfectly possible for you to carry on working with no trouble. I hope this will be the case for you and also, that it works well for you. I have been taking it for 20 months now, and it has kept my liver mets stable. There is plenty of information on this forum about the common side effects, chiefly hand/foot syndrome. I was given a dvd with my first prescription which explained all about the drug in detail.
Cathy, I am sorry to read that you also got c**p news today and wish you well with the new regime.
I may have walked past you last week Laura, we were camped at Robin Hoods Bay…
Lara
I’m so sorry. It is such a shock when it returns.
I found xeloda easy to take as long as I had the tablets having eaten within 15 -30 mins or else I got diarrhoea. I needed loads of moisturiser for my dry skin on my feet an hands. I felt fine on it and did loads of thongs. I had 9 cycles and the it stopped working bbut I seem to be the exception as most women seem to stay on xeloda for many more moonths or even years.
You’ve had a big shock and I know it makes you feel like you want to give up but don’t. Give xeloda a chance - it is a fantastic chemo and should work well for you.
For all of us here once we’ve secondaries, life becomes much more of a lottery and that’s why being here on the forums is so important. We can all cry and laugh together and rant and moan. You know how supportive people are and we all want to share our news - good and bad and support each other.
Don’t hold it all in - you should have a cry. It’s a huge shock and takes a long time to get your head round it.
Love Kate
Sorry you’ve had such awful news, but glad that you’ve got an action plan and that you managed to have a lovely holiday in Whitby before getting your results. Hope the Xeloda works really well for you, with few or no side effects so that you can enjoy your new job too.
Hi Laura and Cathy
So sorry to hear your news, Cathy, having scan results is awful, I know when I was told I had significent progression in May it was devastating, but you do pick yourself up and I wish you well with your treatment. I am now on my 5th cycle of Xeloda and continue to work, I am becoming more tired but think that is because I am coming towards the end of week 2. Apart from a bit of nausea and tiredness I haven’t really had any sideeffects and hope to stay on it long term, I am waiting for a date for my next scan, supposed to be after cycle 6 so fingers crossed!
Best Wishes Kathryn
Hi to all,
it is always a shock when we are given the news that our tumours are growing again. I find it amazing that after all the chemo that goes through our system they are able to grow and spread! If only we could fight back in a more efficient way, no sooner have we begun to feel a little bit more like our usual self and WHAM we have to go back on treatment.
Laura , as others have said xeloda is a kinder chemo and can be managed once you get used to the routine of it, with any look you will be able to carry on with work. I was on it for 2 yrs had good shrinkage and it kept the cancer under control. So fingers crossed it will work well for you.
Cath , I was on taxoland avastin from Feb this year and had 60% shrinkage I am just on avastin and pamidronate every 3 weeks up to now it is keeping everything under control I expect to go back on tax next month.
Good luck to you all with your treatment it is incredible how much we all have to go through. May we all have lots more time with our loved ones and stay as happy as we can.
So sorry to hear your news. Please try to stay strong and believe that just because one treatment is now failing, doesn’t mean to say that the next won’t be good for you. I have heard it said on TV that there is a “whole raft of new cancer drugs in the pipeline” - don’t know how true that is but lets hope so.
Just this morning Dr Chris Steele on the This Morning programme talked about a very promising potential new cancer drug and although he said you’d be looking at 5 - 7 years before its available under the current system, but maybe it might be clinically trialled earlier and maybe Gordon Brown might get his finger out and start to fastrack new drugs. so you never know what might happen in the future.
Sorry i’ve rambled on a bit, but as you’ve been to Whitby for your hols I wondered if you lived in the North East cos I do. If so, we could meet up if you’d like.
Hi Laura,
I’m so sorry this is all happening to you but I needed to say of course it is worth carrying on, you sound like a strong lady.
The shock must have been tremendous for you. My situation is different, I was diagnosed 2004 and my secondaries started this year. Between times I split up from a horrible man and quite unexpectedly met a wonderful one who is now my husband and stepdad to my nearly 8 yr old twin girls. I feel unbearably cheated that life gets snatched away just when it starts getting so good but I am trying to focus on the present rather than the future. Each moment is precious as no future is ever certain.
It sounds like you too have been getting on with life, I really hope you can find the strength to continue to do so. It sounds like you need some support to help you throigh this battle. I hope you find someone who can help you soon.
Hope this doesn’t sound too irrelevant,
thinking of you xx
So sorry to hear your news. Having secondaries is such a horrendous emotional rollercoaster - we have to deal with all the treatments and then hope that they are keeping things stable at the very least but always in the knowledge that at some time that particular treatment will fail. I too have liver mets and had the same experience as you have had, in April this year when a scan showed there had been a lot of progression in my liver. I’ve been on xeloda since then (on my 6th cycle) and appear to have done really well on it - tumour markers dropped from over 400 to 21 in 4 cycles! I have a scan tomorrow but onc appears very confident that it will show significant shrinkage. As others have said, I have had some side effects (particularly sore feet) but it’s been easier than the other 2 chemos I’ve had. He’s reduced my dose now slightly because of the side effects and I’m certainly coping better with it. I’ve managed to continue working 4 days a week throughout in quite a demanding job.
My onc describes it as finding out which particular treatment my cancer is sensitive to and also reassures me by saying that there are lots of chemos still he can try. So I really hope that xeloda is the one that gives you (and me! and everyone else on it!) some feeling of stability. For me it is always a balance between quantity and quality of life but I do feel it is possible to have a reasonable quality of life (and work and go out and enjoy things) whilst on xeloda.
Thanks you so much all of you for your support and kind comments.
I’m not feeling quite so desperate as I was, partly thanks to hearing that ‘positive’ results from xeloda are possible. The Dr I saw on Monday was very guarded about it.
I must say going to work has been a godsend as it has helped keep me busy. Although I’m very tired and have been feeling a bit weak and nauseous, which I am hoping is from the shock and nothing worse.
I walked from Whitby to Robin Hoods Bay so may indeed have passed you Jenny! Linda - I know the North East well as my Dad live sin Berwick, although I live in London.
Hi Laura, I’m on my 7th cycle of Xeloda, I’m having the highest dose and I have no side effects at all. Would recommend using cream for your hands and feet as soon as you start treatment.
With Love…x
Sorry to hear you aren’t finding things easy to cope with. I am on my 2nd cycle of xeloda, I had a really bad reaction to the first one because the dose was too high however it showed an 48% reduction in my cancer which I have in my lungs and liver. So although I was really ill with the first one at least it kicked the cancers butt. I have now been reduced by 50% of the original dose, i expect if I am fine they will put it up gradually. Cycle 2 has been a breeze, you don’t get the really aching legs that you get with other chemos.
Hopefully it will work for you - just remember to have hope we all need that. Secondaries does mean a bit of a rollercoaster ride we are all going to have meetings with our onc when they are going to tell us the cancer has progressed unfortunately it is part of this horrible disease - we just have to pick ourselves up dust ourselves down and move on to the new treatment with new hopes that it works.