I got the results from bone scan and MRI on torso. The bone mets are much better than they were 2.5 years ago, this was the last time I had a bone scan. The MRI showed one small met on the edge of my liver which the onc said was stable. Not had an MRI scan for 2 years.
He agreed to referal to get an assessment re zapping the liver met. He was intially reluctant but agreed when I said that it moves faster in the liver than in the bones.
I also managed to embarrass myself. I was looking at the MRI pictures on the oncs computer and thought I saw something that looked like a brain so I asked if they had scanned it. The onc replied no we have not scanned your brain if we did we would probably find that you are a bit bonkers. I had mistaken inerds for brain.
Welcome Tawny, (you know what I mean), sorry you have had this recent diagnosis. I am on Bondronate too and have been on this for a year now. I am not keen of the sitting upright bit and not eating for a while but it is better than having to go to the hospital every month for an infusion of another like drug. I have had bone mets for 12 years now. Tomorrow we fly off to France to see my daughter. I haven't seen her for 6 months so a lot of catching up to do ( spending money!). It is a shock when you first hear the news but you do get your head round it eventually and having a treatment plan in place helps. Hope you continue to do well, love Val
Great to see a new liver AND bone mets group. Well, not great but you all know what I mean. I just thought I'd introduce myself. I was diagnosed with the above secondaries in January 2010. It came as a complete shock (doesn't it to everyone?) and I wandered around in a kind of fog for months. I've had six cycles of Zeloda and am currently on bondronat (I'm doing a ZICE trial), letrazole and zolodex. The good news is that at every scan my liver mets have reduced. They never say much about the bones, although I do think that I get another bone scan when I finish the drug trial. It took me a long time to get my head round my new situation but I've certainly come on in leaps and bounds. I'm unrecognisable from the person who sat, in total shock, waiting for her drugs at the hospital pharmacy. As much as possible I try to live a 'normal' life and am lucky in the sense that I don't feel ill. For those of you that have been newly diagnosed, I send you my very best wishes. It's a bit of a cliche, but things do improve once you have adjusted to the new situation. These forums are great if you have any worries as there are always people who have had similar experiences and are happy to help. I suppose the difference in me now versus diagnosis time is that I now allow myself to look forward; to that end I'm studying with the Open University and have just taken possession of 3 moggies!
Just wanted to say I'm sorry the last chemo didn't hve the impact you wanted.. Keeping everything crossed for you the next one does!!! And I'm wishing you LOTS of good wishes and luck.
I know it's hard trying to remain calm at certain times... When I'm stressed I have a bath I'm taking about 5 a day, I'm exaggerating, but not a lot!!!
I will look at the technique you suggested sounds good. This may sound ridiculous but in the scale of things probably not but I'm hooked on green tea (tea pigs brand) it's lovely and seems to have a calming effect on me.
Hope the springlike weather is helping everyone - I so relate to the ups and downs and my mood changes throughout the day - am waiting to start on Xeloda as part of a trial after another bone and CT scan on Friday - so will be interested it you comments on its SEs etc MMG. Xeloda will be my third chemo in a year - had FEC last year June-Aug and it was quite successful but Taxotere was not effective Jan-March this year, in fact I think the Taxotere aggrevated my liver mets as my liver felt like a warzone, glands under my arms were sensitive and head overheated and ached so am glad to come off it after 3 doses when CT scan showed more liver tumour growth but bones etc were no worse (the good news..) - but overall a real let down as I'd hoped the warzone feeling meant it was tackling the problem... Fingers crossed for the Xeloda which I should start soon.
I've always been a worrier so it's no wonder I am now!! Have learnt to do EFT (Emotional Freedom Technique) with finger pressure on acupuncture points on my face/upper body/hands and it really does seem to relax me and take away tension and negative feelings for a while so I'd recommend it - I think you can find details on the web and I bought a book about it after my counselor told me about it. Just tapping on certain pressure points seems to help me to cope some of the time. Does anyone else use EFT?
take care all
Just bumping up! How is everyone? Hope it's all going as well as poss...
I'm just wondering whether any of you lovely ladies who have been on Xeloda could give me some insight? How quickly did it start 'working' for you?
I go for a check up/next lot of tablets every 3 weeks, and at each check they do my bloods (inc tumour markers) my tumour markers are still going up at every appointment, and at the minute, are going up more than they did before I started the Xeloda!!!! My calcium levels are still really high - so now i have to have some zolendronic acid (not sure if that's the right word!?!) through a drip every week.
I swear before I started taking all these drugs I never felt so ill or rubbish....
sorry - now I've just complained a lot! xxx
I am now nearly 4 years from my primary diagnosis and a good 18 months since my secondary diagnosis and I still don't think I have come to terms with things. Every time I turn up for scan results I think I am prepared for whatever they are going to say, a sort of acceptance of my situation but however positive the results it's always still been there in my case. I have spread to my liver, lungs, spine and left eye......just awful really.
So, I guess what I am trying to say is that I still can't quite believe this is happening to me despite being on my third lot of chemo......I must be slightly bonkers! What you are feeling is perfectly normal however I hope there will soon be days when it isn't your first waking thought.
Thanks for our comments Mellissa, you have helped me a lot.
I just wish I could keep my worrying under control.....also gain an acceptance of what is going on. I know I can't change things and have to grit my teeth and get on with it but find that so hard.
I hope in time.....if I have it, I will come to terms with things.
I had my bone scan today so I am radioactive at the moment I am having treatment next week so will ask then if results have come in. The only slight problem is that I will be having a telephone consultation next week so they may not want to provide results over the phone so may have to wait another 3 weeks.
Having read other posts I think they ought to check my liver again. Its been over a year since the last MRI on it.
The waiting sometimes does my head in completely.
When I was diagnosed in 2009 I was told that taxol was currently considered the 'gold standard' for treating liver mets( and similar are just variations of taxol)
If you haven't had FEC before then they would probably hold that treatment back so they can use it later.
My onc tells me that they used to throw everything they had at it to try to make it go away. That didn't work so now they try to treat us with a lighter touch in order to keep the mets under control for as long as possible. With some women it works for many years - let's hope that all of us on this list are in that group!
They may carry on with the taxol or stop it after 12, it us possible that if they time it right (before the mets become resistant) they might use it again later. I think that the idea is to keep as many options for treatments waiting in the wings as possible.
Re number and size of mets I have lots and lots spread throughout my liver but they seem to respond well to chemo, another lady I know had 3 small mets that didn't respond so well to taxol but she was able to have cyberknife, I am not sure that number of mets is always relevant, so maybe it doesn't matter if you don't ask at the moment - what is more important is which treatment works
Re bone mets, when they were found later I was terribly upset but the lovely nurse explained that anything that controlled the liver mets would also control the bone ones. The liver ones are the ones they really meed to focus on. The alendronic acid should help with bone pain and keep your bones strong to discourage spread as well. My understanding is that they can offer radiotherapy to help with pain if the aondrenic acid doesn't stop it over the next few weeks.
I am afraid that the whole secondaries thing is more of a long haul on the treatment front. But you do get to know all of your care team at the hospital really well, and I have found them to be lovely (I am sure there are more up sides than that, it's a bit early in the morning, when I think of more I will let you know!!)
Weird time to post at nearly 4 am but Im often awake at this time.
I haven't much to tell since my last post......5th Taxol coming up on Friday out of a possible 12. Onc suddenly said we might do more depending on the CT scan. There is very little mention of my bone mets which i have discovered are all around my sacrum (sp) and would account for pain I ignored for quite some time thinking it was just getting old with a large arsesitting on a chair for too long.
What still confuses me are that there are so many different treatments to what appear similar dx. I have liver mets......not happy with how vague they are amount numbers etc but too scared to ask.....and the bone mets that they give a dose of alendronic acid every 3 weeks just to top the Taxol up. I seem to be only on Taxol every week......others are on extras.......why? Is mine too far gone, typical negative poit of view of mine........will they maybe add more after the 12 week scan........I konw I should ask but Im scared.
Hoping you ladies will know........
Thanks for your quick reply!
I think I might wait til my week off next weekend and see how one glass goes, and ask the BCN again during the week!
Probably best i don't start drinking on a Sunday night anyway!!!!
To drink or not to drink -- there are as many answers to this as there are people taking Xeloda -- people I know who have been on it have not stopped drinking the odd glass of wine, and some didn't stop drinking the very frequent glass of wine. Who knows how that impacted on their lives? BC is such an unpredictable disease . . .
There's nothing in the patient information about alcohol affecting Xeloda's effectiveness, or causing increased side effects, etc. BUT there are other considerations -- I decided not to drink any alcohol when I was dx with liver & bone mets, as:
* I didn't want to put any further pressure on my already tumour-ridden and therefore poorly-functioning liver;
* alcohol can be dehydrating -- difficult, when Xeloda already gives us side effects resulting from dehydration;
* I wanted to be able to take pain-killers when I need them for bone pain;
* alcohol wasn't a big part of my life, anyway, so I haven't missed it much.
I have had the very odd glass of something alcoholic (once or twice a year) over the last seven years since my mets dx, and I'm sure an occasional glass won't, in the longer term, cause much of a problem, but maybe have a chat with someone (chemo hotline at your hospital, Mac nurse, etc) if you're worried. Also, you may get the answer after you've had your glass of wine, i.e. it may not be so nice, depending on your Xeloda dose.
So many variables, but quality of life is our key focus -- see how you go on!
Sorry if this seems like a really shallow question, but I can't find any definate answer anywhere.
I started xeloda last week and was told I could not drink any alcohol whilst on it (at all! ever!), but speaking to someone else at clinic on Friday she said she does have the odd glass of wine (in moderation obviously!) and just wondered what your personal experiences/advice are?
(Also still taking tamoxifen/clodronate/zoladex but alcohol is ok with those!)
Just I'd really like a glass of wine!!!!!!!!!!!!!!!!!!!!!
hope you're all having a good Sunday xxx
Hi Sheana and others
Good to know that others don't know "everything" about their bodies and treatment - I go into the appt with list of issues to raise and usually run out of steam before getting through it all and asking about how disease is progressing is often something I "chicken out of" - not in denial but just thinking I need to cope and hoping treatments are helping with bone, liver and other mets and giving time to managing the side effects and having some quality time with family. Think if I keep hopeful the will too. Hoping now that the Docetaxol is helping liver mets in particular and am encouraged by comments on this site about all the different liver met treatments - so long as they offer me another treatment then I can feel "ok" about living with SBC. So do please share what treatments you are having - it helps me to feel that I can ask questions at the hospital if I need to. Ok - back to "doing" to avoid brain constantly wondering if liver discomfort is getting less and therefore that the Tax is helping - I seem to be constantly mentally monitoring the discomfort when I'm in a seated position (thankfully not discomfort when standing or sleeping so brain does switch of then....)
Take care all
Thanks for your continued input.
Well, I had my 3/12 Taxol today.......arrived at the Chelt Hosp at 9am and was home at 7.30pm. Excellent, cant wait for the next 9 treatments....is it 9?....my counting isn't what it was. Maybe an abacus would be a good idea.....so that was over 10hrs at Hosp, Hmmmm
Still can't sleep.....I get up for the loo and the boys ask me what the weird rattling noise is....I tell them I have a thing for MMs....sadly they expect that this is likely.....as anything goes these days....and don't question that that most of the pharmacy's drug supply is flying around my crumbling body like an old jar os saved pennies every time I move.
Had my bloods done and had some positive news that my calcium is normal....for now, I don't do' normal.....saw a junior doctor who as usual, I knew more than him about how I came to be sitting admiring his beard whilst going back over the whole bloody story.
Anyway I moaned to him that I didnt like a diuretic drug I had been put on and that my GP and even chemist had questioned the doseage.....he then said out of the blue (as I feel he suddenly realised something I didn't knowso hemade a quick move to throw me), we will give you Alendronic acid every 3 weeks......but as you have already had it while in hospital you cant have it until next week. Erm......really.....would have quite liked to know that one.
By now during the convo, my chemo head has totally fecked in and haven't got a clue what's going on, who he is and in fact more importantly I wonder if someone has knicked my KitKat from the table where I was sitting. He left me saying he would talk to the Oncologist and come back to me.
I thought well you can forget that where's my KItKat......but in he trundled about an hour later and confirmed all we had talked about......I think.
The only thing that I think I bottled was asking how big the liver mets are....next time maybe. Scardy cat really under the bullshit.
Take care Sheana x
It's quite obvious my head is full of steroids so ignore this post if you want!
Just thought I would add my name to this list.
I was diagnosed with liver and bone mets in feb 2009.
I had 8 cycles of paclitaxol (3weeks on 1 week off for each cycle)
I decided to take a break for a few months then started on capecitabine/xeloda + monthy zometa last October.
The bone mets have spread a bit but the liver ones seem ok at the moment.
My secondaries arrived 4 years and 6 months after my initial diagnosis which seems annoyingly close to the 5 year 'all clear' ( if there is such a thing) but at least it suggests that they are slow growing - that is what I tell myself any way 🙂
I love to hear about people who are 7 years post liver mets diagnosis - It is very cheering!!
I know I have been a bit naughty, however I have previously asked for a bone scan and was told no as I did not have any symptoms. In response to this I waited nearly a year whilst dillingently monitoring self for symptoms but none came so I resorted to lying as I was fed up of waiting for my left leg to fall off.
I am glad I am not the only one with a guilty amytryptiline habit.
Just wanted to say Thanks for your kind messages of welcome... Hope you're all as well as poss! I'm just back from Parents Evening and now a week into Xeloda having just taken all my tablets with my tea! What kind of crazy life is this?! I wonder how this ever becomes 'normal'?
I too have bone and liver mets and like you when i heard liver I thought that was that. Know how you feel, I'm still terrified and everyday it's just a case of putiing one foot in front of the other. My work keeps me kind of sane. I often sit and think "how did I get to this point" I'm on hormone therapy and bone strengthening drip at moment but don't know if hormone tabs working or not (Letrozole)Anyway take care
Alex I had to have a chuckle at your getting a bone scan by fair means or foul!!! But 2.5 yrs is a long time and I would have thought it was sufficient for you to tell your onc you would like one! Fingers crossed for you that both the bone scan and the mri bring you only good news.
I have my bottle of ami as well LOL. I have the liquid form of it and only take 5mls. I have been told I can go up quite a bit on that dose but I think I would sleep all day. Fortunately I am one of those lucky people who always seems to sleep well with or without the dope.
Sheana do you feel you could ask your GP or onc for something to help with sleep. I used to be one of those who would avoid pills at all costs but now I feel if it helps I will take it. Hope the taxol on Friday goes well for you.
Finally, they are going to scan me again. Its been 2.5 years since my last bone scan. I told them I had a pain in my neck, this was a fib well outright lie actually, but it seems to have done the trick. Its been over a year since my last MRI on my liver so they are going to do that as well. I have treatment tomorrow, herceptin and pamidronate.
Sheana you are not a scardycat. It took me nearly two years before I could even look at a site like this. I had difficulty sleeping when I was on tax due to night sweats, the onc prescribed me amytriptiline, this did the trick. In fact I liked it so much that I went to my GP and he said I could have it for as long as I liked. My BCN was horrified by this as she thinks I don't need it. I find that it helps me sleep and this helps me cope better with the diagnosis. One of my sayings is that you can't go wrong with 'Ovaltine and amytriptiline'. Life can seem so much worse when suffering from sleep deprivation. You could try camomile tea if you prefer the mpre natural option.
Hope everyone is feeling as ok as they can be.
I am still reading all your posts even though I haven't said much after my initial panic.
I am due my 3rd taxol on Friday so will turn up at Cheltenham Hosp at 9am for bloods and fingers crossed that all will be ok to go ahead. I'm really trying to stop my head thinking that the oncologist said 12 Taxol and then we will review......my head is really trying to not go there as to what then. From what you ladies have said though, there are many options that can keep us ticking over. It is definitiely living 'with' cancer.....that is my new mantra and must stick to it.
Think I'm having a scardie cat day again........wish I could sleep better too......thanks again for all your posts ladies 🙂 x
Hi Sheana and Madmusic girl
Sorry you have to join us on the secondaries part of the forum - the place no-one wants to be, however there is a lot of support and knowledge on here so you have come to the right place.
I was going through similar to you both exactly 3 years ago when I had a local recurrence - a bone scan and CT scan then showed 2 bone mets. As you have said, I thought it was curtains! However after much grief and disbelief I got my head round what could be done to treat me and my oncologist also used the expression incurable but treatable. I had a course of 6 x FEC chemo and have since been on Arimidex and also bone strengtheners (bisphosphonates) I have adopted the 'Living with Secondary BC' motto rather than dying from it and continue pretty much as before my secondary dx - just a few more aches from the hormone treatments rather than any pain from my bone mets.
Wishing you both good luck with your treatments and, as you can see, there are many ladies living with mets and also having the same treatment regimes are you are having.
Hi Sheana and Madmusicgirl,
I am sorry to hear about your diagnosis. Its normal to feel shocked, frightened and angry. As others have said you will get your head around it in time.
A lot more women are living longer with secondary BC. There are a lot of women on this site who live full and active lives following their secondary BC diagnosis.
My story is that I was diagnosed in Nov 2008 with liver and bone mets. I was 42. I had 3 FEC, and 5 taxol with herceptin. I am now on herceptin, pamidronate and tamoxifen. My liver met did not show on a CT scan and was found on a MRI. The good news is that six months after chemo, they could no longer see the liver met. My bone mets are in my spine and shoulders. I don't know what my bones mets are doing as I have not had a bone scan for 2.5 years.
Thanks to the treatment I have remained well and symptom free. I still work full time.
I didn't have many symptoms whilst on chemo. One lady on this site is known as the Xeloda Queen as she was on this drug for 7 years!
A liver and bone mets thread is overdue so thanks for starting it.
I hope your treatment works well for you.
Hi Sheana & madmusicgirl
Just a quick post to say I've been living with liver & bone mets for over seven years, on continuous Xeloda, Bondronat & exemestane. Takes a bit of getting used to -- I'm still getting used to it!
Marilyn x (Xeloda Queen, for at least another few weeks . . .)
Sorry to read about your secondary diagnosis, please follow the link I posted to Sheana earlier and the helpliners are here to support you too.
I'm so sorry that we have to join us, too. I was 26 less than 6 months ago!! So, not a lot older than you!! No family history etc. etc. So, seen your post and just have to reply.
My primary dx didn't last that long, less than 2 weeks, so you can say that it's at about the same time. (again, read my profile by clicking on my name) for details.
Can't believe there're so many similarities between us!! The last 20 months has been really really tough, but for me the darkest hour is now over and I can relax slightly... still have my moments though.
Haven't had Xeloda before, but there're some really good info about that chemo on this forum, hope you find them helpful.
Completely understand cancer - age - future. Cancer is NOT something that we get in our 20s, let alone mets!! Only just started out on our career / family (not for me, but for most people) / ambitions, cancer never ever fitted into our plan and our lives will be changed forever to a certain extend. But things WILL get better, although not as good as we've planed and intended. I have to keep on reminding myself that I feel like my mum and can do a lot less. It's a huge learning curve and have to make lots of adjustment. But at least my treatment has been effective so far and the cancer is now under control. I am pain free most of the time and still adding days to my lifespan.
chat, vent, scream, share... whatever you'd like to do, this forum is the right place. The helpline was a big help for me. Hope you find the support and info you need here.
Take good care of yourself xx
I'm not sure if this is the right place for me to post... but just wanted to say hello again in the forum...
Docs found grade 3 IDC in my right breast in October which was removed.... and to cut a 4 month story short they have now found mets in my liver last week and abnormal cell patterns in my bones (which they explained as (i think) a kind of pre-cancerous/early cancerous cell formation)(They've also found a very early endometrial tumour as well and another primary in my left breast - just for good measure! - I've told them to stop looking!!!!)
I'm now on Xeloda and then on double the dose of bisphosphonate and tamoxifen as i had been previously... they're going to keep scanning regularly etc and keep watching...
Apologies if here isn't the right place to post, but everyone else I've met with BC has a primary dx... and 4 months ago i was 26 with no family history of cancer and (like everyone else I'm sure) no idea what was about to be round the corner ...
so I guess am hoping this might be a good place to chat/vent/scream/share etc....
Thanks for your help ladies.
I must admit when 'liver' was mentioned I really thought that it was curtains for me. I'm still a long way from getting my head round things but your posts have put a hint of hope in my life that I thought had gone. By the way, I have no real info on what mets I actually have so I must be brave to get some more info at some point. At the moment, I just try and get through each day without a complete crisis. I'm on Taxol every week for 12 weeks and then see where we are.......
The bone mets didn't show on the bone scan, only on the CT/MRI where the liver showed up to. Very small apparently and have had no pain.
For a few weeks the drs thought I had a thyroid problem as 2 bone scans were clear.....it was a mystery to them apart from the extremeley high calcium level. Couldn't figure where it was coming from. Two departments didnt seem to want to take my case on and get to the bottom of it. Anyway, we got there.
I will re-read your posts and get back to you. Thanks for taking the time to reply.
I am sorry to read about your recent secondary diagnosis and can see that you have lots of support here, in addition please feel free to call our helpline for further support and information on 0808 800 6000, the lines are open 9-5 weekdays and 9-2 Sat.
I am posting a link to the BCC secondary page where you will find specific secondary information and support which you may find helpful:
Sorry to hear about your recent secondary diagnosis. It is understandable that you should feel shocked and scared. As Julie and m1yu have both already said, it really does get easier to accept. Now it probably feels as if your life will never be the same again, but you will hopefully get your head around things soon.
I was diagnosed with secondaries in my bones in April 2010 and in my liver November 2010, at first I was understandably devastated and was mentally planning my demise. I now have accepted things, mainly due to support and encouragement of people on here. I admit I do have down days, but they are far outweighed with good days. I have read enough to know that nowadays secondary cancer is treated more like a chronic illness than a death sentence and many people can have their cancer managed for many years. I like to think of myself as 'living with cancer' rather than dying of cancer. Stories of people living up to 18 years (and that is now, treatments obviously improve all of the time!)can't help but inspire you to think there is hope!
I really hope that you find some support on here. One thing I really find has helped me is the live chat on a Tuesday evening, I have made some very good 'cyber friends' whose support has been invaluable.
Take care Nicola xx
I'm sorry that to have to join the mets club. I have bone and liver mets and had taxol before. So, any questions, feel free to ask.
You can see my medical history on my profile.
I fully understand the shock of a mets dx. It takes a long time to come to terms with it (if ever)! Couldn't stop thinking of the what ifs. But as time goes on, and treatment starts to take effect, it does give me a bit of positivity.
Taxol did a very good job for me, so hope it does the same thing for you. Will be thinking of you next week.
Sending you a hug xx
I am so sorry to hear of your dx and understand how scary it all is, whilst not fully coming to terms with it I have found I have got my head round it more now and am trying to live as normal a life as possible.
I was dx with bc in 1999 and just when I'd begun to allow myself to think I'd beaten it I was dx with bone mets in March 2010. So far I have not had to have chemo for my secondaries but am on hormones and bisphosphonates (bone strengthener) and have had some rads.
It is coming up to a year from my mets dx and I have been through all sorts of emotions. It does get easier but I still sometimes have wobbly days, I think I always will, BUT mostly I just try to get on with living and mostly that works!
I wish you luck in your treatment and hope you have minimal side effects.One of the things I have found that has helped me the most is this site and the wonderful women on here, it is a great support, I hope you find it so too!
With every good wish, Julie x
I havent been on here for a while because I have been in and out of of hospital for weeks finally been dx with liver mets and some small mets to the lowere lumber region.
I have had to treatemnts of taxol and have 3rd one next week.....just wondered if anyone would share their stories. I am terrified as you can imagine,
PS 5 year anniversary would have been tomorrow.