Is it true that the survival chances with liver mets are a year or less?? I am terrifed now. I dont trust my care team and feel the whole thing is just not going well. I dont think I will see my babies grow up.
Signet I have no experience of liver mets - I have bone mets and have had them since 2002 but I just wanted to say that there are a number of members here with liver mets who certainly have been living with it for more than a year :). I am sure they will be along tomorrow to tell you.
There is a thread in this forum called Anyone else with Liver secondaries which a lot of them post to and I think you will find that helpful.
Dawn
xx
Thanks Dawn xxx i will look at that post. I was ok but had suspicions as i have been referred a palliative care nurse who wants to meet weekly and i cant understand why as my Onc was so positive. Yet she is talking like i have little time. Its been worrrying me silly. They shouldnt do that unless they can be honest in the first place.
Hi Signet
Sorry I can’t help with your question as I’m a bone mets lady but I did see your other post on the Liver Secondaries thread and just wanted to add my support as Dawn has (and Belinda on the other thread). It is very worrying - to say the least - when you get a secondary dx and to be talking about memory boxes etc must have scared you even more. When I had my dx there wasn’t a McMillan nurse in sight which I am glad for now but also would use their services later when needed. I think the Liver secondary ladies, where you’ve also posted, may be able to reassure you about treatments etc but it could be worth speaking to you oncology team and/or BCN to say how scared you are and if all of this is necessary right now? I don’t think any of us actually want to ask the question ‘how long?’ but by understanding how the team work in your hospital it may re-assure you? If your onc is positive I’d take that as the best sign 
Good luck
Nicky x
Hey Signet
fantastic to see you posting again!
I really hope you are feeling better within yourself…even tho these damn nurses are still freakin you out! Like I said before, they done the self same thing with a friend of mine & she had to politely tell them to back off!
I read on a thread here yesterday (wish I could remember which one) about a ladies prognosis for Liver mets. She said that basically, on paper her prognosis was & still is 6 months, but she’s been going strong for 6 years & is still living well! Also reading the Liver Mets thread you can see that the ladies on there are doing fantastically well & I’m sure they’ll give you amazing support too. Lots of the women on here have been living with secondaries for many years & this is what I’m trying to focus on as I face confirmation of secondaries early next week!!
I know my Onc tends not to go into how long she predicts we have left (not sure if we have the same one? Are you SJH?) as everyone reacts differently to different treatments & everyone’s cancer behaves differently.
I have to say tho…if I do get a secondary diagnosis as expected & therefore a McMillan nurse…I will have to tell her to Do One if she starts with the funeral arrangements & the like!
Hxx
Hi Signet
I was diagnosed with liver mets 2 years ago and I am still here and in good health. I went skiing this winter and have plans to go again next!!
You haven’t said what treatment plan you are on but there are lots of options out there and if as your onc says there are just three small lesions they can keep things under control for a long time. Unfortunately no-one can say with certainty how long any of us have got and I for one would rather not know!
As for your nurse, I would, politely point out that you will let her know when you want to discuss things and that such things will be your not her agenda. All of us are different, some people do want to get very organised for others that is not appropriate. One thing you should get her to do is to claim DLA for you. Don’t let it spook you that the special rules are for someone with 6 months left as I know someone who has been claiming it for 6 years!
All the best
Fiona
Hi Signet
Like Fiona I love skiing. I had to miss skiing last February as I was on chemo for my liver, bone & lung mets but I fully intend to go next Winter. I am not yet 12 months post diagnosis with secondaries but as I am not due be scanned again now until October (providing I keep well) I assume I am going to keep going for some time yet.
Sue xx
wow fairly encouraging news and thanks for sharing it. I do hope to last a lot longer.
My ONC is lovely and very very upbeat which i love. I know she would be straight with me but i think i am getting myself very wound up and scared panicking about not seeing my little one start school etc…
Just trying to get back to my old self really. I miss it and i know my friends do too!!!
Good on you both with the skiing!!! I used to go to Aviemore weekly to ski and loved it. Also went to Kaprun in Austria and it was amazing xxxxx
Hi Signet
I hope you are doing ok. I have liver mets. Was dx in July 07 with bc and liver mets at same time. I then had chemo of 3 x FEC and 3 x taxotere then onto herceptin. I had 2 years of great shrinkage, but in Oct last year was slight change so taking xeloda now as well as my 3 weekly herceptin.
I too have little children, a 3 year old son and 6 year old daughter, and so want to stay around to see them grow up.
I lead a pretty normal life and take my hols too. Last year went to turkey and going back this year too.
It is hard to keep going somedays but my babies make it worthwhile.
Life is roller coaster with emotions.
Any questions or worries there will always be someone here to help you.
Take care
Love
Dawn
xx
Hi Dawn thanks for replying on both my threads and nice to meet someone similar on the kiddie front x
I think its them that keep me going and I do find every moment is precious now. Things I prob wouldnt have been as fussed about before so from that point of view its lovely.
My little ones are 10, 3 and a half and 2. I am hoping to see some shrinkage.
I am now on weekly Paclitaxel and 3 weekly herceptin. Not sure when next scan is. Always nerve wracking time. Fingers crossed this treatment is making an impact though x
Hi Signet,
Posted on liver mets thread, then found this one.
I had 6 courses of weekly Paclitaxel for my primary & bone mets and it worked really well for me. I found it a lot easier as well compare to FEC, which I’m having currently for my liver mets.
Hope it do an equally good job for you (or even better) and the side effects are not too bad.
Take care xx
Hi Signet
I’ve posted on the “Anyone Else with Liver Secondaries?” thread in response to your worries about being bombarded with nurses and your anxieties about “how long???”. None of us knows the answer to “how long?”, including our oncologists, well, not until we get very ill indeed, but I’m hoping you’re not in that position right now.
I’ve been living a relatively “normal” life with liver (and bone) mets for over 6½ years, and there are others with a similar story to mine posting to the secondaries boards.
So please take heart, and I hope your treatment plan is easy for you and stomps on those mets!
Regards, Marilyn x
Hi Signet
I was diagnosed with liver mets in March 2003 and have been on herceptin since Dec 2003. My last scan was still NED - long may it continue! Everyone is different, as had been said, but you just have to believe that your team will do their best for you and enjoy your children.
Blondie
Hi Signet, I too am another of the Liver mets Ladies along with secondaries in bone, lungs and lymph which were diagnosed in June 2008, 10 years after my original diagnosis and I felt exactly the same as you but unlike you do not have small children albiet I have 4 grandchildren I want to see grow up. I recieved a lot of help and advice from the other Ladies on this site and am living a relatively normal life. I am currently on Capcitabine which is keeping things stable.
Take heart from all the other Liver mets Ladies and as Blondie says believe that your Oncologist and his team will do ther best for you.
Lesley xx
Hey Signet
I read from one if your posts that you’re the same age as me & also have 3 wee ones. I have a 3, 5 & 10yr old.
I just wondered if you’d heard of the Willow Foundation? They provide special days out for 18-40 olds who are in our position. They have arranged a Mon-Fri break for the 5 of us…plus my Mother in Law…at Center Parcs & have also given us some CP vouchers to spend while we’re there.
It has given us all something to look forward too amongst the rollercoaster of my life at the moment!
Hxx
Hiya H, we have just heard thru the nurse that willow foundation have approved a hol for us there too!!! Not sure bout week tho as they arent keen to let me miss any chemo. They are talking a Friday to Monday break. What type lodge are they putting you in? Is it the basic type? xxxx
I am waiting on a call from them but they haven called yet. They rang her Monday to tell her.
Hey Signet
That’s Fab!
They’ve booked us into a 3 bed New Style Woodland Lodge & I choose the CP Vouchers (was offered either that or the Welcome Hamper).
The girl from the Willow Foundation called me, asked what kind of dates we were looking at, went away & then called me back 10 minutes later to confirm that it had been booked & to give us the reference number in case we wanted to pre book anything!
The kids are so chuffed to be going back (we’ve been once before) & the 2 older ones have their week all planned out already! LOL
…I’m just hoping that if I need to start chemo again soon that it’s kind to me…imagine not being able to go down the flumes! ;o)
Hxx
Aw wow thats great to hear H cos we have been twice and stayed in the same lodge you are going to and were worried they would put us in the basic lodge which just isnt very nice. We stayed in that type our first visit and the second visit there was no comparison. The new style woodland lodges are awesome. Your kids I can understand will be very hyper.
Where do you come from H?? I live in Melrose in the Scottish Borders so we are going to Whinfell in Cumbria as its only an hour away.
Ohhhh I hope they do same for us then xxx Just hope they call soon cos I know the kids will be really excited too.
Hey Signet
Well done on the insurance & DLA! That’ll take a lot of pressure off! I just wish we had critical illness cover…something I was going to take out when I reached 40! I have one life cover that will pay out on terminal illness, but the main one won’t until I’m dead! Cheery! lol
I’m stuck in limbo at the moment. I have a regional recurrance, which can’t be cured, but it’s not classed as secondaries…it’s all very bizarre! I had a CT scan today & have myself prepared (yeh right!!) for what seems to be the inevitable secondary diagnosis on Tuesday! :o(
I live up in Livingston. I thought you might have been from up this way since you had posted on the St Johns Hospital thread a while back. You should try & make it up to Edinburgh one weekend for our get togethers. I always feel so much better when I meet the mad bunch from here!
Hx
Hi H that is a very odd situation your in!!! Hey you never know, perhaps they wont class it as secondary which is better isnt it??? Its a minefield this cancer game it really is.
Well oddly I just got a call from DLA to say they wanted to advise me that the original decision had been reconsidered and Higher rate DLA awarded from monday following my secondary diagnosis. Still refusing me anything prior to that but what the heck. At least I am gettin it now after 4 months of hassle. Not sure if its higher rate care or mobility as I didnt think to ask. I think its care. Not sure if you normally get both or not under those circs.
Ah I had my mastectomy at St J right enough. I thought it was a nice hospital and enjoyed my time there - best I could anyway!!!
We had critical illness cover for years but cancelled it last year on the advice of our financial advisor as he thought it was expensive and hgihly unlikely for us to need it GULP. So it came as a huge blow after my diagnosis. We could have had a lump sum paid out to us which would have been lovely. However decided to use this other life policy as its a decreasing one so sooner its used the better. Oh its a funny old situation isnt it!!!xxx