Anyone else with liver secondaries?

[LYNDYLOO]

Hi liver mets.

I was dianoised with liver mets after 8 years as bone mets only.

Thought I resurrect this page.

Linda

[Lillypin]

Hi guys I was diganosed last year with BC ER/PR+HER- mets to the liver I did chemo and now I am on zoledex and Tamoxifen. Is anyone on this treatment and how is it working for you and how long have you been on this. I live in Zimbabwe 

[Liz_nz]

Hi, I've been around the block a few times so not a young 'un.  I have secondaries in my liver and they scare me a lot, however they have behaved well over the last 2.5 years.  The white if my eyes sometimes takes on a yellow tinge, but my liver blood tests are still looking ok.

other than my regular treatment, nothing special has been done about my liver mets

hugs x

[Lou81]

Hi Helen 

ive never had a bone scan just ct and MRI. I'm at the oncologists on Friday so I will mention the pain, it's weird how it's just one leg, I don't take pain killers but think I might start having to. I've got chemo again next Wednesday. When is your bone scan? 

I should be over the moon with the liver results which I am, but I've convinced myself it's somewhere else xxx

[hellyhead]

Hello Lou, 

I was just passing by - have never posted before but have been reading/lurking for a few years. Your post touched me and I just wanted to say that when I had taxotere/docetaxol the bone pain was very bad, and I think it is the same for most people if not all. Before BC I never took painkillers, but with the docetaxol I kept on top of it with regular medication, codeine and paracetamol. Ask for some relief when you go back to hospital. I hope you are a little bit reassured. It is horrible but the chemo pain will pass.  I'm not diagnosed with secondaries but waiting for a bone scan to find out! So I know about the anxiety and mind games and consequent ups and downs.... One day I'm planning my funeral and the next I'm sure it's just a stiff neck. It's not much fun and hard to be positive.

Take care, hope you are feeling a little better today. 

Helen

[Lou81]

Hi everyone 

met liver surgeon this weeks it's nothing to worry about he doesn't want to see me again. I've had my first lot of T chemotheraphy, it's hit me harder than the fec every bone hurts and I've convinced myself it's in my bones especially my legs.sick of worrying all the time. I've had brilliant news but I'm scared there gonna tell me something else is wrong, I'm doing my head in. Hope everyone is ok xxx

[funnyface]

Lou, I'm sorry you are having a mixed up mess! I hope this decision is correct. Nobody wants to need surgery, but how wonderful if it's fixable and curable! FF

[DebHummingbird]

What a total emotional rollercoaster you poor thing Lou!!! Let's hope they stay with the same decision and you can go wild and celebrate.everything crossed and big hugs from me xxx let us know ASAP xx

[Lou81]

Sorry I've not been on for a bit. Well it was a bit of a shock. In my liver there is a cyst but the other thing they to,d me was cancer turns out not to be. Went in for the results, he said the chemotheraphy had done nothing to the 1.5cm legion and with the different contrast in the ct and latest MRI it showed up very different.  He said a load of liver specialists were looking at it from another hospital and they would let me know in 5 days. So as you can imagine I was very shocked, my nurse then rang me after 5 days and said the liver people had all agreed it was something called an adenoma, I've probably spelt it wrong, it's not cancer but I've still got to see a liver specialist cos they can grow and I might have to get it removed. They cancelled my chemotheraphy last week, but I've got it again on Wednesday, I've had fec now going on to the T. I'm worried there gonna ring again and say they've made another mistake and it is cancer. So for 2 months I thought I was stage 4 but it turns out I'm not. 

Hope everyone else is getting on ok xxx

[funnyface]

Lou, We haven't heard from you in a bit, hope your results went well! We are here if you need us.

Jacksy, I remember how happy my mom always was when I would stop at her house! Lol, I only lived a block away! I also remember being announced if I thought she stopped by too often. That's when I was young, dumb, and newly married. Now, I would give anything for her to be able to walk through my door! Time has moved on and the circle continues. I love when any of my kids come by! I get "ridiculously happy" even if it's just a day! They are always our lives! FF

[Jacksy]

Hi everyone, hope your scans went ok Lou, and your biopsy Margaret, must be getting your results soon then the waiting will be over. 

Yes Funnyface people think we're so brave but they would do the same. There is no alternative. And even hiding under the duvet doesn't last long as I eventually need the loo/a cup of tea!

im enjoying the sunshine and getting over my treatment this week, so got a quiet weekend planned. Looking forward to seeing my daughter back from uni tonight, which makes me feel ridiculously happy...

have good weekend one and all

Jacksy xx

[funnyface]

Lou, Glad your treatment wasn't so bad. Some times it takes  a bit to figure out the SE's and how to best combat them!! Good luck with scan results.

Madmargaret, Wishing you the best with your biopsy procedure and results! Not much of a choice is how I feel when people tell me I'm so brave! Believe me I have no bravery in this just have to get on with it! Bravery is if I risk my life to save someone else's! Take care ladies! FF

[madmargaret]

Hi Lou,deb,jacksy

will be glad when biopsy gets done on Thursday 

I hate feeling like a hamster on a wheel....can't get off. But hey ho not got much of a choice...go with the flow

hope all went well with your MRI and ct

marjx

[Lou81]

Hi deb, jacksy and madmarge,

hows everyone doing? I've got MRI and CT tomorrow so I'm a bit nervous. Don't get the results till 11 days later . Had another fec chemotheraphy last Wednesday which wasn't to bad just feel a bit tired. 

Lou xxx

[madmargaret]

Just done a quick reply but don't know where it has gone but anyway it was to say I really appreciated the welcome don't feel quite so alone now x

[madmargaret]

Thank you for the welcome...really appreciate it,makes me feel that I am not alone in all this crap x

[DebHummingbird]

Hi Lou jacksi and madmarge, hope you are all ok so will catch up later - I didn't have treatment after my intusl bc 20 years ago when I had chemo. so it lay dormant all those years xxx

[Jacksy]

And I meant to say hi and welcome to madmargaret too. It annoys me that I can't see the posts while I'm replying...brain like a sieve. Hope you find some helpful information and good support here X

[Jacksy]

I think we are all older than we like to think or admit!! Debhummingbird I can hardly believe that - your liver mets are from your BC 20 years ago?? I don't know if you've been on any treatment in that time, but that kinda gives us all hope that they could be growing really really slowly 👍🏼😀.

All the best to you all. I'm fighting off a bout of norovirus 😷 So not very happy today

Jxx

[madmargaret]

Oops forgot to read your reply number 2

[madmargaret]

Hi Deb

Are you having treatment. At the moment the have put me on Letrozole til they decide what else to do after the liver biopsy. Feet haven't touched the ground these last six weeks with tests,X-rays bloods scans biopsies etc.HEy ho though everyone has been so kind . Thanks for replying too.refuse to act my age as well as you can tell from the name I have chosen lol. X

[DebHummingbird]

I had my liver biopsy about July last year and the tumours were from original bc 20 years ago her2 and had my chemo now on Herceptin and perjeta every 3 weeks 2/3rds shrinkage and awaiting my results of scan on Monday xxxxx

[DebHummingbird]

Hi I'm an oldie pretending not to be LOL and I have 8 lesions across my liver xxx

[madmargaret]

Hi I am new on here.

Is there anyone out there who is not as young as they would like to be lol. Just diagnosed BC with liver lesions...biopsy of liver next week. Is lesion from breast or left from another site operated on 13 years ago. It's just I don't know from reading on here if there are any " oldies" like me who have had successful treatment . Thanks

[DebHummingbird]

lol spellcheck put "Auvergne" it should be I have just read

[DebHummingbird]

I had missed Jacksys post so Auvergne just read it and it's inspiring and give out hope in many ways! My liver lesions are all over and quite a handful so when I've asked my Oncologist about resection and ablation she said there are too many .But to hear that you are clear is totally mind blowing 😘⭐️Xx

[Lou81]

Hi, 

im not bad got chemotheraphy tomorrow then I've got a ct scan on Monday. Hopefully will show chemotheraphy is doing something, well I hope it does. I still have my moments though, nice to hear jacksy is still going strong after 10 years with what I've read on the internet I didn't think that was possible, so I need to stop googling.

lou xxx

[DebHummingbird]

Hi Lou -how are things with you? I hope all is moving forward and you feel abit more relaxed with your new norm xx

[Lou81]

Hi jacksy

Thankyou for replying. I saw the oncologist yesterday and the liver specialist has got back and he seems to think one is a cyst one is a tumour. They've requested another ct and MRI. I will have my 3rd chemotherapy on Wednesday. I'm hoping this chemotherapy might have shrank the tumour and no more have popped up. My last ct was 31st January. I'm hoping they can operate if it's in a good position xxx

[Carolyn52]

Hello Jacksy
How nice to hear from you and I'm sure the ladies here will be inspired about you doing so well ...
We all look at the internet too much and scare ourselves but we have to remember everyone is unique to treatments and hope for better things coming out to keep our little blighters under control ...
Keep in touch ..
Hugs xxxx

[Jacksy]

Hi lovely ladies and especially Lou and others newly diagnosed with secondaries.

i actually started this thread ten years ago and I'm still well and able to do my job,so I hope you can take heart from that. Lou I think it's dangerous reading the Internet, although we all do it!, as even data a few years old is now so out of date. Things are moving fast and new treatments becoming available all the time. I didn't think I'd see my youngest child even go to secondary school and now she's away at uni!

having one or two isolated tumours in your liver makes you more likely to be eligible for direct treatments such as surgery or radio frequency ablation (RFA), a kind of laser treatment with radio waves. I've had both and now my liver has been clear for 4 years. If you have a scattered distribution then systemic treatments (that go round your bloodstream like chemo etc) can still get good results. You have to remember that your onc is a medical oncologist,i.e not a surgeon, radiographer or anything else. Occasionally they can get a bit blinkered and only look at medicinal treatments, and 'forget' there are other treatments out there. As soon as I asked my onc about RFA he said he would contact somebody and find out if I was eligible for referral, so it might be worth reminding yours later. They usually want to see how you respond to chemo first to get as much shrinkage as possible before referring you, and being on chemo isn't conducive to healthy healing after surgery so they will probably wait until you have finished the course.

You are still very much in the shock and devastation stage of coming to terms with a secondary diagnosis and yes it is utterly terrifying. You are allowed to be an emotional wreck! But it WILL pass and in time you will find a new stability and acceptance and be able to enjoy things and look ahead and make plans, and the ground under your feet will feel solid again. 

Try not to worry about what others are having, like different meds to take home. Everyone's body reacts differently, and they are probably having different side effects to you so need something different. You are all on good and 'mainstream' chemos that have been proven to have good effects. Try to trust your team. 

Wishing all you newbies the very best outcomes. Be kind to yourselves. 

Jacksy xxx

[Lou81]

They've said one is 1.3cm and 1 is 1cm they have said they are on top of each other. I'm just worried there growing and this chemotherapy isn't working.get another scan after another lot of chemotherapy. Then they might change the chemotherapy depending on what's going off. He said about referring me to a liver surgeon. I'm her negative so I'm worried it's not got as much treatment options but I'm hr+ pr+ I think. X

[DebHummingbird]

I started with Herceptin perjeta and Taxotare last July and had shrinkage and now on Herceptin and perjeta with arimidex 👍Do you know much about your liver lesions???

[Lou81]

Yes stayed over 2 nights it was very posh, it was lovely. I probably won't sleep tonight cos I slept last night lol. What treatment are you on deb? Xx

[DebHummingbird]

Ps in many ways I quite liked the steroids as I had so much energy and got loads of homework done 😊Xxx

[DebHummingbird]

I was told by my chemo nurse that the pain after chemo was "grabbing" and it's the cancer being got at !! So far I have Mets in my Liver and no soread up or down as yet.I was given injections diy to take home and it's to help your bone marrow.Did you stay over at the Spa? I didn't sleep last night and it's getting to me abit now .Have a good day Lou 🤗🌈x

[Lou81]

No I haven't I will have to get some today. After chemotherapy when I went to bed at night I had quite a bit of pain in my liver and I was wondering if that means it might be working or I'm just imagining things, it's gone now. I finish my steroid tablets tomorrow. Do you know why some people get the injections to take home? And I haven't x

[DebHummingbird]

Hi Lou glad to read your post and that you enjoyed the Spa!! So that's your chemo ticked off and it's doable.I found it hard to sleep after having steroids but it eased off.Maybe have ginger biscuits with your cuppa for sickness ?? Sending you love & hugs xxx

[Lou81]

The spa was nice I tried to relax, the chemo was fine apart from being awake for 24 hours after think that was the steroids, I slept well last night though. Still feel a bit sick, and my hair is nearly all gone now x

[donns58]

Well good luck with the bloods an chemo on Wednesday . Try to have a relaxing time at the spa it will do u good . I've got everything crossed for you . Will see how you are later in the week xx

[Lou81]

I'm back on Wednesday for chemo, then my next appointment with the doctor is the 17th. Got to go in the morning for my blood, then off to a spa for 2 nights, it's only local, I'm hoping I can relax and enjoy it but how I'm feeling I doubt I will 

xxxx

[donns58]

Hi Lou, I know !!! My mind has been all over the place. My daughter says he never said !
Just said scattering. I'm not back at hospital until the 8th so will find out more. It seems we all get different drugs depending on the onc an what you've had before . Will let you know once I've spoken to him .
Big hugs xx

[Lou81]

Hi Donna,
Did they say how many legions are in the liver? I've only had fec, I wonder why we get different drugs. When are they scanning you again? It's so worrying isn't it I can't even think straight xxxx

[donns58]

Hi Lou, I'm so sorry to hear your news. It's so tough because children are truly our world... I found out my secondary had spread from bones to liver 4 weeks ago. It has truly knocked me for six .... it's such a tough one to deal with . However there are some great ladies on here who are happy to share their experiences which really does help. I started taxol an have had the first 3 sessions.. 15 more to go !! It's so overwhelming. Still I think we have to take it a day at a time ..
I hope your treatment goes well an I'm sending you lots of positive energy to you an your family .
Just a question...to anyone out there ...
My onc said there were scattering in the liver .. I was so in shock I didn't ask anything else . Is this worse than a tumour ? Has anyone else been told this ?
D xx

[Lou81]

Hi Nicky

thanks for replying. I'm Er and PR positive but her negative. I'm not sure if this is a good or bad thing. I'm just scared there growing Massive and this chemo not do anything. There only 1cm and 1.3cm I think and they are next to each other.  I'm at hospital in morning for bloods, then going to a spa then back for chemo Wednesday . It's just most things I've read about liver mets is doom and gloom. Somedays I'm ok somedays I'm not, I'm scared about the next scan and that probably won't be for another 5 weeks. Think I read that's once you have secondary breast cancer it will always spread somewhere else, feel like a ticking time bomb lol xxxx

[nicky08]

Hi all liver newbies.

It is such a shock when breast cancer comes back and I don't think any of us have ever been prepared for that awful diagnosis. Unfortunately it can come back many many years down the line or it a secondary diagnosis can come at the same time as a primary diagnosis - at the moment there is no test to predict what will happen with you as each case is individual.

We all know how horrible that time is and to have it happen so soon after having a baby must really throw you out, plus going straight on to a pretty harsh chemo and dealing with the SEs doesn't make it any easier - other than you know you are bashing the little uggers! 

I had FEC chemo in 2008 when I was dx with a local recurrence and bone mets. I then went on to hormone treatment (arimidex) and had a very good, ie stable response for nearly 5 years. I then developed some pain in my leg and got various scans organised which eventually showed liver mets, and progression in my bone mets. I started on Capecitabine which reduced the liver mets for about 18 months before moving onto a Herceptin drug regime (long story but I had changed from HER2- to HER2+) which kept me stable (and reduced the liver mets) until I had some progression. I have now gone onto Kadcyla and am coming up to my first set of scans to see how it is working. During FEC, which is a course of 6 treatments, you would normally have a scan after 3 cycles and then one at the end. After that (I think you, Lou, are hormone positive) you would normally go onto a hormone treatment with scans every 3 months initially.

I hope this helps and sorry I've not been able to offer support earlier but I'm just recovering from flu so not been on the boards much. Feel free to ask any other questions, one of us is bound to be able to help.

Nicky x

[funnyface]

Deb Hummingbird, No my tumors are in my lungs not my liver. I know Lou81 was looking for people with liver lesions, but I thought it would be helpful to hear from any one with organ mets! There is long term liver mets survivors too. Keep hoping! 

Lou81, The spa treat will do you good! It will give you some time to relax and absorbid your own thoughts! I can't even imagine how yiur head is spinning with just having an infant. I know what a mess I was with dx and how long it took me to screw my headback on. I tell my story in hopes of giving others hope. I always wish for it to help them stop fretting so bad.

Hugs to both of you. FF

[Lou81]

Hi Maria 

Thats encouraging to read my primary tumour was 5.6cm, they were gonna do chemotheraphy first but then changed there mind to do a mastectomy, then they found the liver legions. I've noticed today my hair is falling out but I've got a wig ready. Xxx

[Rose47]

Hi Lou81

I have never asked the size of my liver legion.  I do know that my primary tumour was 5.5 cm and after 6 fec they had to use a marker to find it as it had shrunk so much.  I had 3 liver legions and now have just 1 and my bone is healing so fec really can work.  My onc wants to scan every 6 months and I have bloods done every month so they keep an eye on things.    There are lots of lovely ladies on here, Nicky and Mojan always have so much advice when it comes to liver mets.  

Enjoy your spa day and good luck with your next treatment.  Xx

[Lou81]

Hi Deb 

what treatment are you on? Xxxx