Hi,
I used to use this site a lot when I was first diagnosed back in 2004/2005 and still visit to see what everyone is up to.
I’ll not go into full history but yesterday I was told my liver was in a serious condition. My Liver Function Test was not good, Bilirubin levels too high for chemo, and scan showing cancer infiltrating liver as well as lymph nodes on neck and under left arm (I’ve already had right mastectomy and auxilla clearance).
My Onc has given me steroids to try and setlle my liver and if it does we’ll try Taxol. I’m having a heart scan on Tuesday and if my LVEF is over 45% I’ll be given Herceptin on Friday.
The Breast Cancer Nurse came to chat with me and my husband after we’d seen Onc, supposed to be giving me advice on eating as I’m not eating much at moment. But she really depressed us and said I’d best be prepared for the worst and enjoy things ‘NOW’, amongst other things. I don’t mind being told up front but I don’t like tea and sympathy, and she really seemed to be pushing me for a bigger reaction, I told her I deal with things in my own way and I’d prepare for the worst when I felt I had to!! I still feel in good health and don’t feel as if I’m going to pop my clogs tomorrow!
I’ve spoken to my Mcmillan Nurse today, who’s more on my level of thinking, and she’s coming to see me next week. She agreed it may be a good idea to see a liver specialist.
I don’t know what to do next, I’m not good at sitting waiting for things to happen, you know what I mean!
Wendy XXX
Wendy,
Will you be seeing your onc. before the nurse next week.
Have you been dx with secondaries and they are getting worse or have you just been dx for a second time?
I have mets in my liver, lymph and bones so I know how it feels to be so worried and want things to happen quickly.
I hope you get to start your treatment soon and your results improve.
Best Wishes,
Kate
Wendy,
what a horrible shock for you after this time - have you seen our thread below on liver secondaries - there are quite a few of us here on this forum who have liver secondaries so there is a pretty good lot of knowledge here,
I know what you mean and I am not suprised about your reaction to the breast cancer nurse. I often feel that these people (and no offence to BCNs) are just paid to tick a few boxes about us when we really are much more complicated than that, Everytime I go to the GP they say how are you with that concerned tone, and I say well where do we start if I really thought you wanted to know (I dont say the last bit maybe I should) ? But anyway I digress here
Did you discuss why the biliruben levels are too high? there are some threads here about biliary stents, maybe there is a specific problem that can be looked at . When will you see him next? I don’t want to bombard you with questions so I will leave it at that
thinking of you in this , me I am having a chemo break but I expect to start treatment by end of September -
take care
Cathy
Thankyou for your replies. I was diagnosed with secondary liver cancer in July 2005, it has been kept under control since then with liver tumours ending up not being visible. I was given a course of Vinorelbine and then have had Herceptin and Capecitabine (Zeloda) more of less continuously since then. I have had short breaks from Herceptin while my heart recovered and have had slightly longer breaks from Capecitabine to give me a rest! I have recently been off Herceptin for a few months because of my LVEF being under 50%. It seems that everything has advanced since not being on Herceptin, that’s why we’re keen to get back on it.
I won’t see Onc next week as he’s on holiday, I will see his registrar on Friday who will confirm my LVEF before having Herceptin.
My LFT doesn’t read well at all, everything is off the scale.If steroids don’t work I may be heading for liver failure, bloody great!
Wendy XXX
Hi Wendy,
I remember you well - I think! You were diagnosed the same time as me and have kids about the same age as mine - 6 & 8? I have thought of you often and I am really sorry to hear things are not going so well.
I would think that this is a blip - albeit a serious one, until they can get your liver under control again, but like you, I wouldn’t be ready to give up yet whilst there are more options as yet untried. As I recall, you had a fantastic response to herceptin.
Did they give you any useful dietary info like taking those fortified drinks (there are others here who know far more about dietary supplements than I do). I would imagine that the sooner you can get some strength back, the more chance there is for your liver to fight back. Is there any chance that they could get you on a Tykerb trial? I think they give this with xeloda too. Where are you being treated?
It is lovely to hear from you - do let us know how things go.
Take good care,
Jenny
x
Wendy,
Hi I have been surfing for Paula as we had been chatting when her situation changed so terribly and quickly. I found quite a lot of things about the liver and mets on the net and posted them on Paula’s thread. I don’t know if any of them apply to you but the earlier the stage, the more things they seem to be able to offer, so there is more beyond the few things I found. If you can face surfing the net I just left some more sites. One guy on there who is a doc had received 6 cycles of CAPP, it returned and he had 3 months of Iressa, 3 months of xeloda and 2 of Gemzar. He is now waiting to start a Taxol/Gleevac study to be approved to join. We have not even heard of half the stuff out there that the US and sometimes even Paris is using. I don’t know what all these drugs do so please don’t think I can suggest drugs but I did want to give you a little boost into action while you are waiting. Got any boxing gloves in your cupboard?
Love to you and sorry to butt in but but saw your thread and wanted to try to do something.
Thinking of you
Lily x
Hi Wendy
I am so with you…dont listen to your BCN mine was pretty much the same where as my Macmillan was the one who said get a 2nd referral…she is a star and a great support. I was told to go and live the last maybe months out at home. I know my liver is failing but I cannot give up…i have 2 bubs and no way can someone tell me with that attitude to go away.
Lilly, Debsincornwall, Dibley…far too many to mention on here are STARS…Lily I intend to meet you hun after all this for a nice treat…wine and yummy nibbles…right sorry gotto go had no rest back killing from rads and huge fat feet…
Will let you know how tomorrow goes at Marsden…
Night all thanks a million…I MEAN THAT SOOOOOOOOOOOOO MUCH …xxxxxxxxx
Hi Wendy
So sorry to read this. I too have liver mets and am on herceptin. I can really empathise with your shock. Let us hope, as Jenny says, that this is a blip and your liver will be got under control.
Thinking of you.
Laura x
Paula,
I am just a really ordinary person that you would not notice as you passed in the street. If I have helped at all then I am the one who gained by being able to do it. I think we might have met in another life maybe? Hey you have a lot on with the treatment for your back and the chemo, etc. I get stuffed just doing the chemo some days! Brighton is a drive but ok for a day trip, so don’t waste one of your wishes, be my pleasure.
Lily x
Lily
we are all ordinary peeps but some has been given a gift here…I know what urs is…
When I am fit I will see you and I dont live in Brighton so we may be nearer than you think…anyway maybe we can have success picnic for all…
Thanks again Lily…from my heart
xxxxxx
Hi Wendy
sorry to hear your liver mets are in a poor state,I have liver and bone mets secs diagnosed in 2004. 6x fec 18mths free of treatment and trouble, 2 yrs capecitabine until liver in a really bad state was told sh.t or bust time had been fighting for avastin wont bore you with it. In Feb I started taxol and avastin after 6t 4av I had 50% reduction next scan after same amount of treatment 10% reduction. Had scan this week now on avastin only once every 3 weeks so waiting for results will report with what I hope will be good news whwn I hear. I think if you are able to take herceptin you can have lapatinib so maybe ask your onc.
Hope they can offer you help I know I always go on about it but make notes re question you may have and always date them for me they have proven invaluable.
Good luck.
Love Debsxxx
Hi Everyone,
Thankyou for your replies, it helps so much!
Paula, I have 2 children aged 9 & 7 and can not bear the thought of leaving them. Out of the blue a few weeks ago my little boy said “Mummy I could not live without you”. They’re worth fighting this for.
Debs, your post is very interesting and I shall be following up on the Lapatinib, hopefully I should start Taxol very soon if my liver improves.
Lily, Jenny, Laura etc.thanks for your advice I shall be researching some of these, keep it coming if you find anything else.
Wendy XXX
Wendy - understand how you feel I think.
On 11th june 2008, I had a 9mm liver secondary tucked away at the back of my liver and caused no probs for last 22 months and then 3 weeks later went yellow as new lymphnode cluster grew up and blocked my common bile duct causing me to go yellow and needing a liver stent so went from being reasonably well to being very ill.
After a horrendous time due to my oesophagus being squashed by a tumour, I had a stent put in via my liver rather than an endoscope and now a week later my bilirubin is nearly normal and my LFTs are improving. Hoping to start taxol next week to control this new spread.
Apparently, I’ve been unlucky with the new growth as if grown elsewhere in liver it wouldn’t be causing me a problem!!!
Hoping your new treatment will work for you and things settle down. I have twins of 11 and an 8 yr old and it is breaking my heart to know that due to my other secondary spread I won’t be here at christmas. Everybody is very supportive here so please ask questions and maybe join us in live chat on tuesday evenings.
love Kate
Kate,
Have they said that’s your longest expected survival rate? or may that change if you can get on Taxol? I really hope so, for you and your children’s sake.
Wendy xxx
Hi kate,
Just read your post after reading Paula’s. I am so sorry you’ve had such a hard time.
I’m thinking of you and praying your next treatment will prove more successful than anyone has dreamed of, for your sake and for your children.
You are very special.
Big ((HUG))
love,
Ann xx