Kate, you are so nice to write such a welcome! I must get some of those steroids if they make people as energetic as you! You know, I have been really puzzling over what bish bosh is - and now I know. I am having some of that every month. They gave me morphine to take after the rads but although I didn't need it, the pain was shocking so I just thought it hadn't worked. However, now I have just got back from a walk to my sister's and am feeling very proud of myself for making the effort. Rather envied her stilettos, but somehow I think they might have been causing her even more pain than I am in.
I didn't know about the online chat. My husband is always out on a Tuesday so I will look forward to settling down for that.
Hope your son is not in too much trouble, Kate
I wrote a huge reply to you and then the computer just switched itself off and it disappeared!!! probably a good job as if you see I've posted, I'd get a cup of tea first and put your feet up. I tend to write long replies which is not helped by being on steroids for 4 days every week which make me hyperactive!!
I'm so sorry that you've joined us. We are very supportive so please post any question/concern/rant or worry and I'm sure someone will help you. We're very bad at using at abbreviations and I know when I firsts tarted to use this site I was always asking what does this mean so just ask if it doesn't make sense.
You've really been thrown in at the deep end and I'm not surprised you're struggling. I was diagnosed in april 05 with a large tumour and large lymph node so I knew my prognosis was poor and sadly that is how it has turned out.I first developed skin mets (the medical word for secondaries - metastases). Then in august )^ I developed a new cancerous lymph node in my other side. I'd struggled all summer with poor breathing and being unable to lift my left leg but all the scans in may 06 showed nothing. In sept 06, the scans showed whole lung involvement in my lungs but in my lymph system, bony ones in spine and left hip and a 3cm one in my liver but away from any blood vessel or bile ducts and have been on almost continous chemo ever since. I'm hormone negative so don't have that option. I waas told then I might only live 3 months which when pushed he said if I was lucky I might get to 2 years so have achieved that which others with better prognosis than me have not. Breast cancer is so unpredictable. I'm so sorry you found out via the forums about the seriousness of liver spread through the forums but there area lot of women who post who have lived years with liver mets so don't despair.
I think some oncs like to drip feed the info as it is such a shock and if he gave you the stats what does that really mean - you could fall either side, you just don't know. I would think about what you want to know and how you would cope if you ask your prognosis now. For me, I've always wanted to know but know many people who don't. You have to do what is right for you.
For me, knowing that I had a poor prognosis meant that I've had the time to create special memories for my family and do things like memory boxes which other people have not had the time to do. Sorry to be so morbid. We've had a lot of support from charities and been able to have really good fun at places that we'd never have done otherwise. I enjoy my life and although it is far from normal for a 46yr old, my perspectives have changed and so, yes I now use a mobility scooter but it means I can keep up with the family and the kids love it cos it seems to collect static and they like to 'shock' me!!! I think I cope by being an ostrich at times and other times a realist.
This site is brilliant and is the reason I think why I'm still here as you learn so much of other people's treatment and their oncs opinions. The ask the nurse service is brilliant too as are the days BCC organise. I've made 'real' friends there as well as the cyber friends, I'd already made. There is also live chat for us secondaries girls on a tuesday night. It can be a bit emotional but very helpful as there is a nurse who is online then as well. Maybe give it a few weeks first or maybe you want to join us sooner.
The pain after rads is awful isn't it - I thoiught I'd made a huge mistake a week after having it done but it has made a real difference to my pain and mobility. I hope you are having biphosphonates (some people here call them bish bosh) for your bones. That helps with pain as well.
Must go - got to see son's teacher - He has been very naughty and lying about his homework.
Please keep posting and ask anything - we won't laugh at you - we've all been new at one stage to this site and often it is the little things that we daren't ask but really worry about.
So sorry, you've joined us but I'm sure yiu will be very much welcomed and supported
It is very hard It took me over a year to come to terms with the fact that I have a terminal disease and I felt somewhat cheated that I was dx with stage 4 at the beginning. I felt that I hadn't been given a fair chance (if you know what I mean)
I ahve had a few problems along the way I have had both my lungs drained (at different times) of fluid and have had the lining of my lungs stuck together. I was also admitted last year as an emergency with fluid around my heart which was also drained off.
The last time I was in hospital was in May this year when they drained my right lung and I have felt a lot better since then.
I have decided not to waste the time left and just get on and do things thats the way I have been dealing with it at the moment
Not just the liver - I have bone mets, too, Caroline. They treated my spine with radiotherapy which was brilliant -the pain has gradually faded away over about four weeks. Apart from a bit of residual backache, I feel fine.
For you and me both, they seem to think that our conditions are going to vary so much, that they will not change treatment until something hurts.
They seemed hopeful enough about the Femara (which I think is an aromatase inhibitor like your Arimidex?) containing the tumour. The onc said they were hoping for a remission this way- but they don't seem inclined to check whether it is working, which leads me to believe they are not very confident. However, that is just what I have read into the situation, so it may not be that way at all.
I am trying to cope with the worry, but it's a bit hard, isn't it? I am trying to get out a bit more and take my mind off it, and not dwell too much on little remarks by the onc and the nurse. I keep telling myself that nobody knows how it will go. How are you managing today?
Hi kittybuttoon and everyone else I was dx with mets at 1st dx in march 07 I have them in my liver, pleura, and lymph glands. I have a lump in my breast as well and on my clavicle in neck. I the lump in my neck was removed originally so that they could carry out histology to determine where the primary cancer was. I didn't have any lumps in breast at that time.
I had 6 cycles of FEC and now on Arimidex and Zoladex. The lump in my neck has grown back although not so big and I was also told that this could be a guage to see how well the treatment is working. So far my mets are stable, I havn't had any further tests , have to have a ct scan in Nov as it has been 6 months since last one. So everytime I see onc they just do a blood test and ask me how I am. I was told that they wouldn't change anything until I start to feel ill again.
Kiitty do you just have mets in your liver?
Hi everyone. I too have mets and primary dx all at the same time- in August 08. I have not had surgery (they said no point as it had already spread) and I am on Femara which the onc hopes will control all the tumours at once. I feel fine at the moment. Saw the specialist this Tuesday and they didn't schedule in any tests to see how it was going - the onc said they would not do any until I felt some more symptoms. Otherwise I would just spend my time waiting for, and worrying about, whether the situation had got worse. Fair enough, I guess - if there are no tests I can fool myself into believing nothing's wrong! (Consultant shrink said it is patients who are in denial about cancer who live the longest- apparently they've done studies. So good old denial is an excellent coping mechanism, apparently) I didn't know the odds were so poor until just now when I read the thread - everyone at the hospital has just said it's impossible to say how because everyone is different.
just to come back to you - we usually meet at St pauls - for no other reason than its quite central for those coming from north stations from hertfordshire or from waterloo....would love to meet you in person...maybe we can organise one soonish do look out for it..everyone at london meets is always happy to meet 'new' people in person and its quite informal...
hope you are doing ok
Thanks for all the comments, I was also advised that leaving my breast lump in place would provide a useful guage as to the success of any treatment.
I am awaiting blood tests to confirm whether I am pre/post menopause following chemo and will then start hormone treatments
I was dx in June with secondaries in pleura, on aorta, in bones and liver.
Originally in 1999. then 2003.
I have had 3 Epirubicin and am now on 3 Docetaxol.
I would love to meet up if you do it again. I live in Sussex - I can get up to London - where do you meet?
Hi Fiona and everyone..I was diagnosed with stage 4 from the beginning, in 2003. I have bone mets and my primary has been ''useful'' in guaging how well my treatments work.
It used to be said (a few years ago) that a mastectomy could perhaps cause further spread but you do hear of more masts being carried out on stage 4 patients now than when I was first diagnosed.
Once the cells are in the rest of the body, there is little point in removing the original tumour so If you are diagnosed as stage iv from the beginning, it is unusual to have surgery.
I havn't had any surgery at all my cancer presented its self by way of a pleural effusion and a lump in my neck. I then had 6 fec followed by Zoladex and Arimidex. I was told that surgery wasn't an option for me. I didn't have a lump in my breast to start with. I have one now but the oncs are continuing with the same treatment
Yes, I am having chemo first, and have had 4 of 6 cycles, it now looks as if I won't have an op at all if hormone treatments keep my breast and liver tumour in check. Just wondered if anyone else had been in the same position.
I started with a Wide Local Excision (WLE/lumpectomy), was due to start on neo-adjuvant chemo, then discovered the liver tumour. They said the treatment would be exactly the same, as the chemo that targeted the breast cancer cells which they thought might be in my body, would also target the bc cells in my liver. The chemo was successful in shrinking the tumour, and it has stayed the same size since being on Herceptin and tamoxifen since January.
Are you saying you haven't had any breast surgery yet?
I am another 'deep-ender'. Liver mets from the get-go. Funny, there seem to be far more women in this situation than the 5-10% usually quoted.
Welcome to the club that noone wants to join, Carol...
Hi I was dx in June 08 and found out last week that I have liver secondaries. I was having neoadjuvant chemo and now have to decide whether or not to have breast surgery. Just wondered what you did Caroline and Jacquie.
I have two more cycles of FEC to go.
I am another one who wa dx with mets straight off, liver, pleura and lymph nodes. I have had 6 courses of fec and am currently on Arimidex tablets with monthy Zoladex injections. At the moment my mets are stable so you can never tell what is going to work for each individual person.
I do worry that because my treatment is more subtle than the chemo that it isn't working but the oncs have assured me that this type can work really well for some time - so heres hoping that it does.
good luck with everything
Must be awful to have gone in at the deep end as you say. Glad you're keeping tumours stable that's good news. I was diagnosed with BC Sept 06 and Liver secs Dec 07 and that was tough enough. Thought after the BC treatment and going back to work I was well on my way to getting my life back but no chance!!
Anyway had 8 Taxotere which after the 5th was really tough. I can't have Tamoxifen - not hormone positive. I have Herceptin though every 3 weeks which will be indefinitely like you. Will be glad to get scan results on 13th to see if the shrinkage has stayed! Optimistic though since my abdominal pain I started with again last week seems to have eased off for some reason.
Thanks for 'club' news will look out for details. I'm Wolverhampton area.
7th year is excellent. So pleased to hear you're doing so well. Gives me more hope. Know we're all individuals and try to keep as positive as I can, and must say now I've joined this site I somehow don't feel so alone. Family are good but no one seems to understand your feelings do they unless they're going through it.
I'm another one! Diagnosed march 07 with primary bc and liver secondaries (that's what we call being a deep-ender - straight in at the deep end!). I had FEC (nasty to me) then Taxol (do-able but messed up my blood counts big-time) with Herceptin last year. Now on Herceptin until it stops working, and Tamoxifen. I seem to be maintaining the shrinkage I got with the chemo, so far.
Of course you can join us at the next meet- open to anyone. We are by no means a closed club. Or there are general meet-ups for people with any kind of secondaries, at regular intervals. (Look out for threads about 'Cinderella').
Hope you and Kathryn both get good results
love jacquie x
Just wanted to wish you the best of luck with your scan, I really hope it all goes well. I know what you mean about the moments thinking about the future - it can get scary if you dwell on it too much. Like you I do try to take each day at a time and do what I can while I'm well enough. Am going to Paignton on Friday for a week so looking forward to that.
Another of the London 8! I have a small tumour in my liver but my main problem is the spread to my lungs and especially the pleura. I am on my 3rd chemo, Xeloda and have a scan tomorrow to check on progress so I'm crossing my fingers and toes as if it is effective then I can stay on it.
My oncologist doesn't talk about prognosis, just about managing it and trying to get it stable. I still work and try to carry on much as normal but we were all talking on Thursday about the fact that even close friends really don't understand what we are dealing with. I find it helpful not to think too far into the future but have my moments particularly thinking about seeing my lovely children graduate from university but I factor in lots of treats, holidays,days out just to look forward to.
Hope you will keep posting and let us know how you ar getting on
Hi Carol-yes, lining of the lungs.Like you I found the taxotere quite challenging-but not impossibly so, and would have it again if necessary. Have to say, have been feeling stronger since the course finished-and my hair is growing back with a vengeance!!
I too am on a break since June, and feel a lot better. Don't know about you but the taxotere really affected me especially from cycle 5. Had FEC before and had little problem with that. I can walk a lot further in the last month and got more energy although do get tired easily. I have Herceptin every 3 weeks which I'll also have for life, hopefully it'll hold the cancer from spreading further. Sorry to not know but what's the pleura - is it lungs?
Hi Carol. I too have secondaries to liver (and bone, and pleura). Like you I recently completed 6 cycles of taxotere, and am still on herceptin. The liver tumours responded well, the pleura, not so well, so although am on a chemo break at the moment, am realistically expecting for there to be further chemo starting again after the next scan at the end of next month. The last scan (in August), lead my onc to conclude that I'm stable for present, and so a short break from treatment would be ok-and perhaps even beneficial. I have never asked for a prognosis, but accept that the aim is to keep me as well as possible, for as long as possible. I'm hoping that the herceptin (which I'll be on for life), may mean that I'll be around for a while yet!
Good luck with the rest of your treatment-I'll be interested to hear how it goes. Take care,x
Thanks to all of you for your replies. I've only heard of one other patient at my hospital with liver mets and am sure it helps to know others that are going through the same as me, and as you all say meet up occasionally. Hopefully now I've joined this site I'll be able to do that.
I finished Taxotare in June and am currently on 'a break' which I'm glad of - until I started with pain again last weekend. Had scans last Thursday and got results on 13 Oct. Fingers crossed. Must say though pain seems better this week - taking less painkillers etc. so hopefully that's a good sign. They did test for markers but my consultant says these are not always significant so don't know what they are.
I too find it difficult with extended family sometimes. I know others have to get on with their lives and that's how it should be but must admit I feel a bit resentful (if that's the word) sometimes that it can't be me looking forward to the future with as much confidence etc. (Kathy I've got a daughter 25 who isn't in a relationship so I feel sad when I think I may not see her married! ) My tolerance also seems to be different when people are moaning about trivia, then I feel awful as I've previously been a very sympathetic understanding person and still am most of the time.
I'm pleased to hear that other chemos are working. It gives me more confidence if I have to go back on treatment that something will work for me.
I've just had a pack delivered from the Penny Brohn Cancer Centre (previously Bristol Centre). Wondered if anyone has been on their residentials and found it helped?
Just wanted to add my bit, as the others have said statistics are just that, numbers and they don't take into account the individual person. As far as you can put them out of your head and try to enjoy each day.
And I am another of the "London 8"! I find meeting with others extremely helpful - gives me a great boost and really helps me feel not so isolated. Like Cathy, I do find it difficult when out with many friends (even old friends who I've known for years) - my priorities seem so different now and there are only a few very close friends who seem to understand why I don't want to talk about retirement plans/possible grandchildren/children's weddings etc etc.
I do know quite a lot of the statistics but tend to focus on the fact that there are people with secondaries who are living many years. I don't see why at this stage I shouldn't be one of those people (even though I know the odds are against me) and that helps me cope most of the time, albeit with some black days or even weeks. I also tell myself that if my life is going to be short, I may as well enjoy what is left of it! Much easier said than done though!! I do try and keep as busy as I can without getting overtired, and have kept working 4 days a week - a job that I really enjoy. Also trying to make sure I do lots of "fun" things with my husband and my children (who are all in their 20s).
I was diagnosed with liver mets last May/June and had Taxol and Avastin last year and then a lot of progression earlier this year after only a few months off chemo. However I am now on xeloda and that has worked extremely well for me - plan is to keep me on it indefinitely on a low dosage to minimise side effects. We talked on Thursday when we met in London, about the fact that some chemos work well for some and others for others - so just even if taxotere hasn't held the cancer in check for long, doesn't mean that another chemo won't. HOpefully your scan will show there isn't progression though - like Cathy, pain has never been an indicator for me at all. Tumour markers have been though.
Do let us know how you are getting on - hope you don't have too long to wait for the scan results.
I was one of the London 8 and I can confirm it was great for the morale!
I agree with Cathy - you just have to take it day by day, put the statistics in a box in your head and just get on with things in as far as its possible. My oncologist doesn't like to talk about prognosis - he says he and his colleagues are assessed on the accuracy of their forecasts and they are all so far off the mark when it comes to individuals that it is counterproductive.
What are you on after Taxotere? Is it just herceptin or are they giving you something else? I had 9 sessions of tax and am now on arimidex (almost a year now)
look after yourself
I was diagnosed in November 07 with pretty much the same picture yourself...liver secondaries, but I have some bone secondaries as well. There are quite a few of us on the site here in similar sorts of situations. How do I cope ? Try not to think too much about the statistics, carry on as normally as possible, try to have a laugh and to really enjoy spending time with just my husband and my son,
Just on Thursday 8 of us from this site met up to share stories and talk with each other- I found it really helpful as I often feel so alone and so odd when out with friends and family. I don't find my extended family that helpful although my husband is very supportive emotionally and practically.
I am on my second chemo after taxotere - taxol plus avastin, it is hard going back on chemo again, but you pick yourself up and start again. I hope that you can have additional time free from chemo - do your markers give you any clue? I haven't found pain or discomfort a really useful sign of how things are going, but for me fatigue has been a clue. Do have a look on some of our old threads about liver secondaries, think I will reactivate it if no one else does!
Hope you are doing Ok on a day to day basis - keep in touchm
I'm new to this but hope to link up with others who have the same experiences as me in that I was diagnosed in September 06 with Grade III Breast Cancer, 16 cancerous lymphnodes and then in November 07 told I had extensive liver secondaries. Just completed 8 cycles on Taxotare in June but now have pain again in my abdomen and am awaiting scan results. Just wondered how everyone else was coping? Consultant says my prognosis not good as less than 5% survive 5 years!! Concerned that my cancer may be active again after just 3 months of no chemo. Have Herceptin every 3 weeks. Appreciate anyones comments and support. Thanks. Carol