Hi Ladies
it’s been such a long time since I last posted on here!! DX in 2008 age 25 and again just over a year ago with secondary liver/bone mets… Have spent the past 12 months having weekly taxol, avastin, bone strengthener… Finished treatment 10 weeks ago and started on anastrazole as tumour markers had significantly dropped and time for a rest… Back for results today and tumour markers doubled since last time. Can’t help but feel upset and disheartened 
i know this isn’t the end of the road, but as I’m sure you’ll understand it sometimes gets the better of you. I’ll be back to my strong self over the next few days but just wondered if any of you wonderful ladies have had blips like this?
thanks in advance xxx
NanieSpiky- thank you! You are very kind! I try my best with all the ups and downs…
Lolly2383- it’s a blip! Be strong. Keep fighting! I have been diagnosed with bone mets- end of January this year (cancer was in my spine from the beggining but they misdiagnosed me, which possibly was positive because it was too much bad news to cope with) and liver mets June. Everyone keeps saying that tumour markers can flactuate sometimes without clear progression of disease. Maybe you need more chemo?
All the best to all the girls (and guys) out there who deal with the damn monster.
Valia
x x x
My tumour markers have gone up and down for years and years Lolly. They have been in the thousands but Capecitabine halved the markers after just one round of treatment. I think they are a useful tool especially if you are having chemo as it gives and indication if the chemo is doing its job. I have recently stopped Capecitabone and am now on weekly taxol. I have ony had two infusions so far but am not going to check my TMs until I go back to see my Consultant. Yes these blips do happen but there is usually something that the Oncologists can offer to help. I have had bone mets for almost 14 years!
Val
Hi everyone. More bad news for me today as found out that I have a spread in my liver again. So upset. Life feels very unfair at the moment. Sick of hospitals and tests and treatment. I guess I’ll adjust again but so tired and low.
Forgive my moan.
Alison x
So sorry Tawny. Hopefully you have not just been told tht you have mets but how the medics will deal with them?
No wonder you are feeling low and that life is not fair - quite normal I should think. I just hope you can regain your strength soon. Take care.
Verity x
Tawny, Sorry that you have had this step backwards. Hopefully they will have a treatment plan in place and you can get rid of those horrible mets in your liver. You are bound to feel low. But we are here for you and want to help you through this. Let us know if you hear any more about future treatments. Val
Sorry that you’ve been dealt another blow Tawny- know just how you feel as I had the same news myself last month. It’s so unfair isn’t it? My news was a bit of a blow as I had been feeling really well which just goes to show that you can never really tell what is going on inside. Can understand you feeling low and tired as sometimes it feels like an uphill struggle and I didn’t realise how much my news had affected me until I bumped into my doctor at the surgery whilst collecting my prescription and she just said 'I’ve read your latest report. Do you need any support from us,we are here for you’and I burst into tears. Quite unlike me at all. Now my positivity has resurfaced and I’m ready for battle and chemo once again.
Give yourself time to digest this setback and you will adjust when you are ready and regain your fighting spirit too.Always remember that you are not alone.
Liz x
Thanks everyone. Scans a few months ago showed that I was NED in my liver after hormone treatment. I’ve just started paclitaxel for my bones, so I will have further scans after 3 cycles. I’m having chemo and another blood transfusion tomorrow. I’ve only just changed hospitals so feel overwhelmed plus the registrar wasn’t going to mention it until I asked for news of my latest CT scan. I expect I’ll lift myself up from this and just hope that this chemo will be effective. Hair being cropped tomorrow and steroids have brought me out in a rash of painful spots on my face. Merry Crimbo to me!
Alison x
ohhh Tawny.So sympathise with you. Listen girl, you are entitled to be angry, upset, low, furious, tired and whatever else you feel. It’s a horrible place to be and we all understand you so much and sympathise as we all have been there Life is a b***h ( excuse my language) and sucks big times.And then we find our strenghts again and we see that is worth fighting because life is still lovely. Don’t give up. Keep your faith and fight! Take all the help from your doctors/ nurses and FIGHT IT girl. We are all here for you.
My thoughts and prayers with you. Get better soon please
Valia
x x x
Thanks Ladies it’s been confirmed that the tumours in my liver have become active again, and also some new ones (all in 8 weeks)… So, starting more chemo (Xeloda) next week! Have read posts from some of you who are also having this treatment. Feeling positive now after a few hours of it sinking in… I’ll fight this again for the sake of my two babies. Love to you all xxx
ladies please can I (very reluctantly) join you.I was dx with bone mets may 2009 and have been going along quite nicely since then on letrozole.Originally had chemo and rads because I had a lymphatic mass but no primary and earlier this year managed to persuade them to remove my lymph nodes.Recent scans had shown everything stable and went for my latest ct results 18 th Dec.Onc tells me bone mets are stable BUT slight problems as it seems letrozole not working any more and signs of mets in the liver.I was totally floored, I did feel there was progression in the bone mets as I have been having more pain but other than that feeling well generally.So new treatment plan,chemo being held in reserve and switched to exemestane and hopefully afinitor(they have had to apply for funding for that).Just could not tell the family so just hoping for funding for the afinitor and will then explain it all to them.have a bone scan monday so they have a baseline to refer to when starting the new treatment.My DIL expecting first grandchild so will be gutted if it arrives Monday/Tuesday as I will not be able to go near her or the baby!
Happy new year to you all and praying for successful treatments for you all.
L xx
Dear Lucinda, I am so sorry to read this news about your liver mets. Just to say I am thinking about you and am sure they will be able to help you with treatment that kilss the uggers. Hugs Val
Hi Lolly, I have been on Xeloda lots of times and it is a marvellous drug. It has kept me going for years and I hope that it works just as effectivly for you. Val
Lucinda- Hope you get the funding for afinitor as it’s supposed to work really well alongside exemestane. Fingers crossed for you.
Well,I am now booked in for ct scan 15 Jan as I chickened out of having my liver biopsy. I am still visiting the nurse for an open wound on my chest from my portacath infection and its removal which was extremely painful, due to the local not being effective, even though I kept telling them I was in pain. Needless to say, the whole experience has made me very apprehensive of having another procedure with a local. Fortunately, my onc understands my worries and has decided on a scan instead to check progression, then it will be decision time as to what chemo I will try this time. Hopefully, it will be Xeloda as that seems to be a ‘nicer’ chemo than the others from reading the forums.
Hope everyone else is coping ok with their treatments and hope that 2013 becomes the year of stability for us all (wouldn’t that be great?)
Liz x
Hi. I was diagnosed with mets in bones, liver, lung and various lymph nodes in July 2012. We tried hormone therapy (zoladex and letrozole) until Sept 2012 but a CT scan showed further growth and just hot add a bit more a blood clot in the internal jugular vein. In October 2012 I commenced weekly taxol (12 week course) and was scanned after 7. This scan showed that some of the tumours were shrinking and that the bone mets were less obvious so I carried on. Monday just gone was number 12 but my onc has advised that he would like to give me 6 more taxol but fortnightly instead to give my blood a chance to recover. I have found taxol very bearable, I also have 4 weekly zolodronic acid infusions, daily ad-cal d3 and daily heparin.
My worst bone pain is in my right arm and shoulder, this lessened with radiotherapy in September but has returned again, grrrrr. I am still working 2 days per week (reduced hrs) whilst having chemo to keep my brain active but as a secondary school teacher is not easy!!!
Does any body else have mets in all of these places? I am 34 years old and my son is only 4 - again a big struggle but I fight for his sake. I was told I can’t ride my horses any more and from July to November I didn’t. I now ride again but only gently as it helps me feel like me and let’s me do what I love.
sorry for the essay!!!
Hi DG541xw
Welcome to the BCC discussion forums where I am sure you will get lots of good, honest support from the many informed users of this site.
While you are waiting for replies and to help you along I have put for you below links to some of our publications you might find helpful, also you might find our secondary live chat which runs each Tuesday evening between 8.30 and 9.30pm good support, just follow the links for ‘live chat’.
www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-resource-pack-bcc173
I hope this helps. Take care,
Jo, Facilitator
I said I’d report back, sorry it’s taken me a while. We’ve been away on holiday where I caught flu then came home to a chest infection which caused a flare up of my asthma, messed with my blood counts and landed me in hospital but . . . . . . . .
I got the DLA award 
high rate for 3 years. The letter was waiting for me when I got home.
Thanks to all for help and encouragement with this. It will make a huge difference to us and take some of the pressure off financially when we need it most.
Even better my oncologist used the ‘s’ word today 
I’m joining the stable people and continuing on Herceptin and Zometa every 3 weeks hopefully for a good long time. 2013 is looking better than 2012 already.
Much love to those with less good news, just keep swimming x
That’s wonderful news WeePixie. The DLA award certainly does help to ease us financially at a time when money should be the least our our worries. Well done on achieving the ‘s’ word as well - you certainly are swimming well.
Unfortunately, I am stuck doing doggy paddle as my scan has shown progression. Liver met has grown, 2 mets in neck and 2 mets in chest, one of which is pressing on my windpipe, apparently. So I am now joining the capecitabine crowd but not until 12 Feb as we have a holiday booked from Sunday and I want to keep well for that. Bit apprehensive about SE’s but if it gets rid of the little blighters then all well and good.
At least the sun is shining today. Love to other liver ladies.
Liz x
Hi to you all on this thread. Just popping in to say that I’ve now lived with liver mets for longer than my “bone mets only” time - I didn’t expect to be as well as I am after 3-and-a-half years with them.
For me, tumour markers have been a good indication of what is going on, though apparently my CT scans are difficult to interpret because the mets are “diffuse” … still it is amazing how, with an effective treatment (mine has been capecitabine) the liver can recover. And, of course, scary when the blood results show a blip or when it’s scan time.
Best wishes to all, and hoping you can get good treatment / monitoring / support in the coming year.
Hello ladies
Can I join you? I was dx with bone mets back in late October and, unbeknownst to me, my CT scan in November picked up a shadow on my liver. I didn’t get to hear of it at the time, as there was a bit of a panic going on as I had a vertebra compressing my spinal cord. Last week I had another CT and at my follow-up (suddenly arranged for this week), I was told that the shadow on my liver seems to have grown (although my bones are pretty much stable).tinue The news about my lover was a blow, as I was half-expecting progression in my bones, but had no clue that my liver had anything wrong with it. I start on capecitabine tomorrow, so hopefully that will work where the Letrozole didn’t.
It is good to read that there are some long-standing members of this board. Having another secondary dx is quite a blow, but knowing that ladies do continue to enjoy life. I just need to decide whether to stop work completely or just convince my boss that the only way I can continue working at all is to reduce my hours further. I guess I’ll see how the Cap goes.
Sue
Dear Sue
I know what a shock it is to get an unexpected dx.I went for my ct scan results a few days before Christmas.I knew something was wrong when registrar asked me who my pct was.Turned out I had quite a lot of progression in the bones and like you spread to liver.Letrozole had stopped working and so changed to exestaane and funding applied for everolimus.I got my funding through and started the combo 3 weeks ago.Usual se’s with a chemo drug…nausea,fatigue,mouth ulcers,spots and rashes.I am sure I read on the bone thread you did nor qualify for this tratment,really sorry about that and I am sure the criteria may change when Nice approves it.It does seem that lots of people have good results on Cap so i am sure you will too.
My main problem is I cannot put any weight on my right leg.Had an x-ray and fracture has been ruled out.Will be phoning hospital Monday morning to report no change and see where we go from here.Was happy to have a couple of duvet days but now really fed up as it has been a week and even getting to the loo is a struggle.Gp gave me morphine but all that does is make me sleepy.He suggested increasing the dose to help with the pain but I want to walk not sleep.
Hope the cap does it’s job and you can make a decision about working which suits you.Have you applied for DLA as that at least helps with finances.
L xx