I was diagnosed with liver secondaries September 2006, discovered on my 5th year check up from my primary diagnosis in 2001 aged 38. Felt fine and well at the time so I was completly shocked.
I have a great Oncologist who always examins me throughly. She thought my tummy felt harder than normal, but thought it may be my muscle as I play alot of golf. Gave me an ultrasound to be safe and there they were!
I have been on Herceptin and Capecitabine chemo for a year now and the tumour is still shrinking. I also had one in my neck which dissappeared and one on my spine and ribs too, which also went.
You ladies have given me lots of inspiration and hope and have also given me determination.
Golf does aggrivate my feet though as the Capecitabine makes them raw and sore. Still I am still able to play and I am still here to live another day!
Just heard that my hickman line goes in on Weds still waiting for chemo appt - postal strike- I'll ring them cos I cant wait..... although it will all be at a different hosp which means getting to know new team....
I am sure there are going to be load s of people stressed out this week waiting for results appts etc blast the postman...
Nice to hear from you. I suppose you know all about painting your nails with some dark nail varnish (toe nails too) when on Taxotere - it has been found to help with nail loss by some people. I am sure that there is lots of information on how to get through Taxotere by the people on the forum. I must say that I didn't find it too bad but I did have to ask for better anti-sickness tablets at one point, if I remember.
I was told not to see the chemo as 'nasty stuff being put into your veins' but as a 'wonder solution' or a 'white light' that is going to zap those nasty cancer cells. It is only a small shift in attitude but it really made a difference to how I approached my treatment and took away some of the dread.
Hi Kay and Everyone
Kay my ultrasound on Thursday went OK - nothing to report really. Said couldn't tell me anything as needed to compare this ultrasound with original to see if shrinkage - not sure if fobbing me off!!! She did say again that left boob still inconclusive, which is why had the original MRI scan, but we were not told what results were from that actually. So spose no news is good news, but don't think will ring up and find out, in case bad news.
Got my first round of Taxotere on Wednesday at 2pm .... am starting to dread it and worry about it, as don't know how will affect me, and whether will knock me for six!!! Ah well, least it will be doing some good and killing the b******s we hope!!!
Sorry got to cut this short as dinner ready and 3 yr old being a right little cow .....
Speak soon all.
Definitely not to old for this link - no ageism here and anyway I'm 52 next month! And to hear of your dx 4 years ago and of the success of your treatment is such a boost. It's so good to hear of people like you out there in remission. And I was also interested to hear your first treatment didn't work for long - I was diagnosed in May this year and am on chemo (Taxol & Avastin). My latest scan showed some shrinkage but not as much as they would have liked though my tumour markers are continuing to fall (so I'm feeling reasonably positive at the moment). It does give me hope though that should this chemo combination not prove successful long term, another alternative might. And I think that is all we want really - some hope of success even if when we know it is far from guaranteed.
So really good to read your post. Long may you remain "free from observable disease"! Kay x
It is wonderful to hear how well you are doing, brings hope to the rest of us liver secondaries girls.
Never too late to join in and certainly not too old. We are here to help each other. I am 39 - not sure if you know that with two kids, 3 yrs and 10 months. You are doing so well and give me so much hope to hear that you were dx in 03 and still going strong, and it thrills me to know that it is possible, as when I was dx in July, my world fell apart, as so wanna see my babies grow up. I have done 3 FEC and am starting 3 x Taxotere with first one next week. I am then going on to Herceptin. So very similar to your last treatment I think.
Where about in Essex are you from and where are you being treated. I am near Lakeside, and having chemo in Southend.
Take care and keep posting good news.
I can see that I am a bit late entering this thread (and too old at 56? - never!). I too have liver secondaries. I lost a lot of weight and felt unbelievably tired all the time and went to my GP. I was referred to a liver specialist, despite the fact that I had had breast cancer 9 years before (Oct 94), and he spent time asking me if it was possible I had contracted Hepatitis? had I been abroad? shared needles? (no not really), before doing an ultra sound that showed very clearly that I had multiple tumours.
FEC and Arimidex didn't work for more that 4 months and then it was Taxotere and Herceptin - but that was almost 4 years ago (Dec 03) and I am still 'no observable sign of disease', or remission to you and me. At the time I was diagnosed with secondaries (Feb 03) my Oncologist told me that there was a woman in America who was still alive after 4 years; I reminded him of that a few months ago and he said that she is still going strong.
I too live in Essex, I am fit and well, like a drink or two but occasionally have been known to really push the boat out!
Basically necrosis is dead tissue, the sort of thing you'd see in a horror movie!! It sounds disgusting but it means the chemo is doing its job by clearing up the tumours so I'm well pleased. At least having the chemo is not in vain.Good luck with your ultrasound tomorrow, I will have my fingers crossed for you and good luck with the Taxoteres next week.
Sorry Allie, but what is nerosis - not heard of this one. Well done on all your results looking good - that must be a relief and cheer you up. I have an ultrasound tomorrow at 10.30 to check whether lumps in boobs shrunk or not. Don't think they will do liver - no idea at all. Keeping everything crossed they tell me that there is shrinkage, but am sh*****g myself about it, as scared they will say no change or worse!!!
Kay and Wisdens, hope you are both OK will catch up with you on the other thread later. Not had much time on here at mo, as been out and about with little ones, and obviously taking and collecting Sophie from preschool every morning, so the weeks disappear, and have to admit to becoming a couch potato on the evening, as knackered!!!
Take care all and catch up very soon. Keep everything crossed for tomorrow - then roll on next Wednesday, first of 3 taxoteres!!!
Got my scan results today and all is looking good considering I am only half way through chemo. The numerous tumours have turned into numerous necrosed areas, isn't it great when nerosis is a good thing. Bloods still good but going back on reduced dose of chemo so I don't get my horrible sore lip back. Anyway hope you are all doing well and fighting the good fight, not looking forward to the funny taste thing, I have really enjoyed my daily cup of coffee for the last two weeks.
At the moment I am off chemo for two weks to help my lower lip heal(it looks like I've got a very nasty coldsore). Onc says my bloods are great (including tumour markers)and will be on chemo until November then hormone treatment. Will be having CT scan in next few weeks. Feeling very positive at the moment.
I'll certainly look into this. I'd assumed because I was keeping on working there was no additional support. Thanks for the advice. Kay
Blue badges not sure on but I have a disability living allowance which my hospice care nurse made me aware of..(the GP signs it). I too am working but once we are diagnosed with secondaries ( I didn't have a clue and so am 18months late in applying so get in there) apparently we are 'entitled' under this comes a mobility quetionnaire as well and then IF entitled you can then claim the blue badge... Anyway this is how I was told...... it took about 4 wks....... look on the internet for DLA Special Conditions.....
As to doing what you feel like my onc is like yours the positive psychological definitely outweighs the neg. and as you say you know your own body and know when to have that important rest and when to do the gardening!
I'm really surpised how many different treatments we are all having and it is so hopeful to see so many doing well and living normal lives.
I too have a liver secondary - but no bone or lung secondaries! Have just posted on the other thread started by Jenny (thanks Jenny) with all the details, but basically found out I had the secondary in May this year after routine blood tests - had no symptoms. I was originally told it was operable and therefore "potentially" still curable but then the MRI showed the tumour was too close to the portal vein. So chemo now and maybe the liver resection in the New year. I think liver ablation is also an alternative if they can't get the clearance around the tumour for the liver resection. Am stressing about the tumour shrinking at the moment - am due another MRI next week, as I will then be half way through the chemo. Not sure what I'll do if there have been no changes.
My liver specialist told me to carry on as normal - including drinking. I haven't fancied drinking much on the chemo but the odd glass of red wine does help now and then! My whole team (breast surgeon, liver specialist and oncologist) seem to have a very practical approach to things and encourage me to carry on doing things - they seem to believe that the psychological benefits of enjoying life as much as possible outweigh any risks. And that quite suits me as well. I just try and moderate things a bit and listen to my body - it usually tells me if I'm overdoing it!!
Haven't been told anything about DLA or blue badges (or access to MacMillan Nurses) - is that because I am still working part time?
I would like to join in - probably a bit old 57 diagnosed 2001 and have had the secondaries bones to start with last August with liver mets...... had many chemos and they're not working .... the hormonal pills didn't work... although mine is a + I don't have enough plusses or something for Herceptin. Am on vinoralbine? 2nd cycle at the moment and awaiting onc appt to see if any effect. As far as I've been told I just keep going with chemo after chemo hopefully some of it holding at bay all my liver symptoms.
Quite upbeat at the moment as am steroids and strong pain killers so am able to work part time and do most things as long as I rest enough to keep the white cells there!!
I hope this is a possitive for you all especially those of you with young children as you all need so much more energy to get through treatment and cope at home with all the everyday things with the little ones...
The health team looking after me are tremendous, especially the Macmillan or Hospice Care.....(you dont have to be dying) they are a fountain of info and they help the whole family, my gp is also great an visits me he wont have me going tothe surgery sothat I don't get infected with anything
Well in a slightly better frame of mind tonight - not feeling down like I was, and hopefully tomorrow back to my normal, positive, bouncy self. Went out for lunch today with some friends as one of their birthdays tomorrow and of course, all the little muppets, but I left baby Jack at home with Daddy, so I could sit and relax and enjoy myself, instead of being up and down chasing after him now he crawls so fast. So had a really nice time. Also gave Daddy time to spend some quality time with Jack!!!
Jacqui, you definitely need to apply for DLA - apparently if you have secondaries you get it. Just need your onc to sort out the Special Rules - DS1500 form and I think it is pretty much done. Although still sorting mine as forms got lost, so don't know for sure. Also if you get DLA you can apply for blue badge and think get that as well once you have DLA.
Talking of wigs, EVERYONE, and I mean EVERYONE, says how lovely and natural my wig is and that is looks amazing. Are they trying to tell me something here, in a roundabout way, that my hair was crap before .... charming. But they all keep telling me, that if they didn't know, they would never guess it was a wig. And non of the kids seem to notice. So can't be that bad, just need to get my confidence built, but am definitely getting there.
Gonna ask the onc on wednesday about drinking, although not fancied it that much, and think I might get a serious addiction to it, esp. when down ... LOL - only joking (I think). But gonna ask if would affect my liver tumour. I know one glass won't hurt now and again, but think need to be told that.
Anyway, hope all you lovely ladies are well this evening and got a fun packed weekend organised. My hubby working in morning (runs a golf club) but hopefully home by about 2, and then depending on weather might take muppets out and about!!!
Take care all and it is soooooooooo nice to meet you, honestly, makes this journey that much more easier talking to people that are in the same horrible boat as me, and understand more of what I am going through. You are all wonderful.
Lovely to hear from you all, and great to hear from some 'old-timers'. Thanks for joining in.
Jenny - thanks for starting that new thread, good idea. I'm looking into benefits as have just gone down to half pay (been off 6 months now), so getting worried. DLA sounds worth doing.
Allie - your experience getting diagnosed/treated sounds awful! Makes you want to sue somebody! ( altho generally i'm against that sort of thing).
Know what you mean about glam wig - I've had more compliments about my hair since wearing a wig than in all the years before! Says a lot about my previous wash 'n' wear style doesn't it! I'm actually quite offended.
Dawn - So sorry you're feeling rough. I hope it's beginning to pass and you're able to rest and look after yourself.
I'm quite encouraged by the 10% statistic, as I vaguely thought my onc was saying there was no chance of getting rid of it.
As for alcohol, nobody's told me I shouldn't be drinking... I'm not a big drinker usually, and now on chemo i find less than half a glass is quite enough for me as it has a much greater effect! I do drink plenty of water at the same time. I honestly don't think a bit of a drink every now and then can hurt. Maybe best to avoid a big session all at once tho, so as not to overload your liver.
Rkirkman - (sorry don't know your name) - glad to hear you are happy and decorating! Glad you still come on here and can encourage us.
Okay i'm going to go and look at all your introductions on the other thread. I might have to draw up a chart to keep by the computer, like I do when reading a novel with too many new characters!
Warm best wishes to you all
Just an alcohol note. I love my red wine but have cut back considerably. I have a few glasses at the weekend and on high days and holidays and any day of the week with a 'd' in it (no just kidding...) as I believe it helps both physically and mentally.
Will keep this brief - broke my arm last week, fell when decorating ( I was standing on the bed !!! - don't ask !!!???) and in pain.
DX Apr 05, with primary bc in both breasts, then after bad reaction to first FEC landed in hospital where they discovered liver mets. Completed FEC and on herceptin, arimidex and zoladex for last 2 years.
Touch wood - with my free arm - I've remained well. Now 44, married with 10 yr old girl. Gave up work and if I didn't have bc, I am at the happiest point in my life and enjoying the freedom to do what I want, when I want.
Hi Jacquie, Jenny and Allie
Thank you all so much for posting on here, as was feeling really alone and quite vulnerable really. Not been on the computer much the last couple of days, as not been feeling that good, as think I have gone on a downer for some reason, had a bit of a cold and now have diarrohea (like you want to know that), not sure if linked to chemo as not happened before since started or whether had something dodgy to eat. Also taken one of my anti sickness tablets today as for the first time feeling a bit sick. Nothing to write about, but thought would take one in case start to feel worse.
I am going to ask my onc on Wednesday about ablation, also other chemo regimes as noticed a few people on EPI and 5FU (no idea what this is) and tykerb. Are these stronger than FEC and taxotere and need to know if am on the strongest possible. Also, reckon he will be suggesting further scans to check on things, so terrified about that too, in case anymore spreads.
I have applied for DLA but my forms seem to have got lost, so waiting for new ones to come through. My macmillan nurse is supposed to be getting my DS1500, but will ask onc on wednesday too about it. Also applying for blue badge, but need DLA first for that to make it easier.
Onc never gave us any prognosis as such. Said that the stats are 75% chance of remission for however long (didn't give time frame) and only 10% of getting rid of the cancer in liver for good! I am too scared to ask too much really, no idea what grade or size my cancer tumours are. Keep thinking will ask these questions on wednesday, but then get worried as to what the answers might be and do I really want to know if its not that good.
It is my 5th wedding anniversary next Friday (bit of late starter!! LOL). Not sure what we will do, probably nothing much, as I have not had any alcohol since 26 July when told it was on my liver. Think it is psycological really, that if I don't drink, I am helping my liver in some ways. What do you all think about this. Are you drinking. Sometimes could murder a drink, but then think would I stop.
Sorry, you can probably feel the vibes through this that am in a bit of a low mood today. Hopefully will get better during the day.
It is so nice to hear from all of you and makes me know that I am not alone and there are other lovely people, sadly, in the same boat as me. I hope you are all well today and look forward to catching up with you soon. ANd next time, hopefully I will be in a better, happier mood and make you laugh.
Jacquie, so glad you had a lovely day out with your colleagues, and am sorry about your last chemo being kept waiting 4 hours. Unacceptable. I had to wait 2 hours on my FIRST chemo as they were running so late, and was totally freaking out. But last one was OK.
Thank you also for all your comments, and how positive they were, actually cheered me up a little. Ah well, best go. Take care all of you and hope to hear from you soon. Sorry for dribbling (again).
Lots of Love
Hi Jackie, Dawn & Jenny,
I too have liver mets. I had symptoms of gall bladder problems went to the GP and she booked an ultrasound for a months time. In the meantime I found a large lump and had a WLE on July 2. After discharge I didn't really get back to normal. I went for the US and thats were they found the mets. I was told by myself by the Gp which was probably the most devastating thing. Referred quite slowly to see the ONC, who put me on Tamoxifen whilst she went on holiday as i was ER+. After 2 weeks I was bright yellow and had a stomach that looked pregnant! Called the hospital and was admitted immediately. I had a PICC line inserted and started on chemo EPI & 5FU continous infusion. They also started water tablets etc, these have all been stopped now I now go weekly for my EPI and the change the 5FU which now my blood results are improved will be increased. My hair is coming out think and fast and got my very glam wig ready for wedding next week! The ONC is now starting to talk about the next line of treatment (hormones) so I'm feeling reasonably positive this week. Back in August I didn't think I was going to be here to celebrate my 10th wedding anniversary in November. Jenny its lovely to hear you are doing so well, it gives lots of hope for the rest of us.
Hi you girls,
Just thought I would butt in here as someone diagnosed stage IV on initial diagnosis 2 years ago when I was 45. Mets were found on my liver immediately, but no where else. There are plenty of women here with liver mets. I never had any symptoms from mets, then or now. I have had various different chemos, lost my hair twice (got loads at the moment) and managed to carry on life as normal. My daughter was just about to begin school when I was first diagnosed and I didn't know if I would live to see her there. As time goes on, and I've learned more about this disease I now know that it is not an instant death sentence, and there are treatments out there that allow some of us to live years with this disease. Liver transplants are not an option for metastatic disease as the cells are out there in your bloodstream/lymph system and would probably recur in a new organ. Ablation is sometimes possible depending on the location, size and number of tumours (small in size and number). You should both be eligible for DLA. Get someone to help you fill in the forms if you are unsure of anything. I found it distressing to do at the time (you have to apply under the special rules which suggest that you only have six months to live - ignore this bit as many of us have received it for years!) but now am grateful for the extra money.
Anyway, I know I have rambled a bit, but just wanted to let you know there are many of us in this leaky boat. I am going to start a thread for us all to introduce ourselves and write a little profile about ourselves (as there is as yet no sign of profiles returning - moderator!) and our various diagnoses/treatments etc as it will help people to 'get to know' each other.
Good Luck to both of you, there is masses of support and info to be had from this forum, just sorry you find yourselves here, but you are in great company!
Good to hear back from you.
I took the liberty of copying my message and your reply onto a public board so that others can join in.
The first thing that struck me is how young your children are - that must be so difficult to manage, both in practical terms, and when thinking about the what-ifs of the future. I hope you have lots of practical help.
The second thing that struck me is that you haven't been sick on FEC! I can't believe it - made me sick as a dog when I had it.
I'm in St Albans, which isn't all that far from you.
Have you been given any sort of prognosis? My onc said that 'in the old days' before current treatments, my liver tumour would have killed me in six weeks! Didn't like the sound of that. I didn't want to ask a partic no of years or whatever, but it's playing on my mind. I keep holding onto the fact that however long people have survived up to now, we should hopefully break that barrier cos of the massive progress that's been made in the last few years. I take comfort from the fact that i'm being treated at a world class research centre (Mount Vernon, Northwood). Hope that makes a difference.
I was told that a transplant was absolutely not an option for someone with cancer - I guess there are so many completely healthy people waiting for them they don't want to use them on us?! I'd like to know more about that ablation thing too. My tumour's right in the middle near the bile duct, which makes it complicated to get to or do anything with, i think.
I'm feeling more upbeat now, but had a big downer over the weekend and beginning of this week. i think it was partly the end of hols and having been kept busy, partly due to a horrible experience at chemo last Thurs (my chemo got misplaced and i was kept waiting 4 hours!), but mostly down to the fact it's September and everyone else is starting new schools, new courses and jobs. I was thinking 'what about me' - all flipping summer I've been at the hospital every week and I'm still in the middle of it and no sign of a let up in the foreseeable future, if ever (will be on Herceptin for five years after chemo ends). I felt I had nothing to look forward to, nothing to get interested in or any new start.
I wonder if other people have had a similar experience in the last week or two.
Anyway, I'd better go to bed. Had a long day including going out for a manicure and pedicure (!) with some girls from work - they booked 12 places on a spa evening and got one free so asked me along. It was really kind as i don't even really work with them - I'm on a different site. I've been off work since April anyway.
Also I felt so good at 8.30 this morning that I let my daughter invite a friend to tea - regretted it when it got to 3.30 and I was whacked tho!
I really hope you're feeling a bit happier today. Sounds like you had a bad couple of days.
Take care of yourself, look forward to hearing back from you.
Thank you so much for your message. I am really not bothered whether we whisper or go public, as not worried who reads this.
I have to say, it is nice to meet someone else in the same position as me, as most people I chat to on here have just bc with no secondaries, and the ones I have chatted to with secondaries it is either bone or lung. Although obviously would rather meet you and everyone else in completely different circumstances.
It is such a devastating blow isn't it when you find out you have bc and then secondaries immediately. Not sure how much you know about me, so will tell again. I am 39 years old, and have a daughter who will be 4 in December and a little boy who will be 1 in November. I found a bit of a lump at the end of my pregnancy with Jack in my left breast, but then forgot about it and didn't really feel it again. On hindsight I should have gone to the docs immediately, but you never think it will happen to you. Then about 21st June found a lump in my right breast, which felt harder and bigger. So rang docs and told had to wait for routine appointment. So 5 days later went to the docs, he thought was just fibrous tissues but said would get me referred anyway. Got an appointment for 9 July and went for mammogram, ultrasound and FNA. Was quite upset by the end of it, and had gone on my own, as hubby stayed with kids. Anyway, went back a week later for results on 16 July and they said def. need mascectomy with right but weren't sure with the left. I was going for double mascectomy to be sure. They did another ultrasound on my left but was still inconclusive, as mamo and FNA showed something but ultra didn't. Had core biopsy that afternoon on right but wanted MRI for left. Got an appointment for MRI 2 days later and had a bone scan and CT scan on 20 July. All very quick. THen we were told had to wait til 30 July for results, but I kept asking if could see someone else, as the waiting was so stressful and emotional and worrying. Anyway, got to see someone on 26, and it was then that found out had gone onto my liver, but the oncologist was a little shocked as I had had no symptoms whatsoever, no sickness, dizzyness etc.
Anyway, mascectomy straight out of the window and was told straight onto chemo. Am on FEC x 3 and then taxotere x 3 and then Herceptin for a year (I think). Have had 2 sessions now, 2nd one last week. Thankfully have not suffered at all on chemo apart from my hair, but slowly getting use to it as best I can. NO sickness whatsoever, although this week have had a cold and hoping doesn't effect me in any way with regards to blood count in 2 weeks time.
I have got an oncologist appoint. on 12 (next week), think it is just routine but am getting a bit worried, as we were never told anything from the MRI or bone scan. Just that he had seen the written report of the CT scan and it was that which showed something on my liver. I know that if there had been anything else they would have called us (I think), and so it is probably just a checkup. Gonna ask if can have Herceptin alongside chemo, as know lots do, and got other questions to ask him about Taxotere, Herceptin and heart conditions, Liver op/transplant if possible (He already said no when asked him, but found a post about Thermal ablation or resection). Worth asking him again.
Anyway, think that about covers everything. I applying for DLA and blue badge - might as well get some benefit from this s****y disease.
Where abouts are you from anyway and how are you doing at the moment. I am from Essex, near Lakeside shopping centre if you know it.
Think am a little bit down last night and today, as really couldn't face coming on here last night. Had a bit of a tough day yesterday with my little girl Sophie being a cry baby and Jack just grumpy, think tooth no.7 appearing. And Sophie and her best friend Jessica just kept fighting when my friend popped round too, so was drained last night. But hopefully today will be better.
Think I have rambled on enough now, you probably dropped off to sleep.
Catch up with you very soon. Take care of yourself and hope that you are having a good week and feeling OK.
Lots of Love
I'd like to introduce myself as I think we're in a similar boat....
I was diagnosed at the end of march, with a 12mm lump and only a trace of stuff in the nodes. Under the microscope they identified it as stage 3, and I started chemo at the end of April. Within a couple of weeks I'd had a liver scan and found I had a liver secondary. Bones and lungs clear. I started on FEC and we quickly realised it was seriously mucking up my immunity - my wbc just wouldn't recover even with the bone marrow boosting injections. They scanned me after I'd managed two cycles of FEC, and there was a little shrinkage. By then they had the results that I was HER2+ so swapped me to Herceptin and Taxol. I've been having this every week (what a total drag!) and am now halfway through.(I would have been finished on the FEC by now). I have a scan on Friday, results Monday, and they may change to a three-weekly cycle again if my bloods are back up by Monday.
I know I'm a bit ahead of you, and I think you've talked before about every appt being more bad news, which was my experience. Like you, it left me reeling to discover i had bc, then that I would need chemo, and then that I already have mets, all within the space of a few weeks.
My hair came out on the FEC, and I'm using a combination of scarves (at home and among friends and in windy places!) and a very sleek wig (not at all the scruffy 'au naturel' look that i've had for the past 10 years!). I am lucky to have a v supportive husband and have 3 children aged 9 - 17. I'm 44.
Anyway, I thought you'd like to know I'm here, and I'd love to hear more about your journey. Sometimes it feels v lonely when surrounded by others who have no secondaries.
I'm not sure if this will go just to you or go out publucly - i don't mind either way - perhaps we'll find some others also in the same boat.
With very best wishes