What are the symptoms of cancer going to The liver

[nicky08]

Hi Deb

The Dark Woods thread has been going on for a very long time as MG has said and is in the main part of the forum. I notice this Liver thread itself is quite old and the last posting before a couple of deleted ones was back in 2013 therefore some of the ladies who posted on here are sadly no longer with us. I have been on the secondaries part of the forum since 2008 and recognise so many of the ladies lost to this awful disease however as new treatments have come on board since 2008 there are plenty of options available in your oncologists medicine cabinet! Hopefully you cope with your chemo, and it's side effects, well.

Nicky x

[MG]

Hi Deb,

The dark wood thread was set up by SCACO (Stay Calm and Carry on) back in 2010/11 while going through chemo. It was known for its mad (somewhat dark and silly) humour and was a bit of escapism while going through treatment. It is rather long, and you probably need to read the first few posts to have any idea what people are talking about, but it may give you a few laughs if that is your humour and coping strategy, Mary Grace x (one of the "Woodies" who hung out in the dark woods).

I will see if I can post a link to it (though not sure if that works) but if not, you will find that when the forum was changed a while back, it somehow found its way into Moving Forwards / Living with Cancer although it wasn't specific to a particular stage of treatment, more to a general raising two fingers to cancer. I will post in it to bump it up to the top for you  

https://forum.breastcancercare.org.uk/t5/Living-with-breast-cancer/Standing-outside-the-dark-dark-wo...

MG x 

[DebHummingbird]

For Suzanne x

[DebHummingbird]

How are you doing? I have just liver mets so far.Have you started your chemo? I had my first last Thursday so going through side effects right now .Thinking of you and it's still gorgeous weather ! Take care xdeb

[DebHummingbird]

Where is tge dark wood ladies? I'm sitting waiting for z scan I have multiple liver mets xx

[lucinda]

Like Suzanne I was dx with bone mets when they showed up on a ct scan. Came right out of the blue and I had no syptoms. Now on capecitabine and last scan showed no more progression and signs of tumours beginning to shrink. I get pain from my bone mets but have never noticed any discomfort with the liver. My onc said tiredness and jaundice are typical symptoms but usually only when it is exstensive.....get tiredness from painkillers and cap so doubt I would notice the difference.xx

[Ramsfan55]

Hi, I was diagnosed about 6 weeks ago with extensive liver mets, but apparently although extensive they are small. I didn't have symptoms at all ant they were found because the onc was monitoring my increasing tumour markers, thank goodness. If you want to find the list of symptoms I would suggest looking on this site or Macmillan as they are very good for info.
Good luck in your treatment x
Suzanne xxx

[supertrouper]

Thanks moodog. I can see that she has posted tonight in the forum.

[Guest user]

Hi Supertrouper, I heard from SCACO a few days ago. She's back at home after an over-long stay in the clink. She's got a treatment plan and seems to be coping pretty darn well x

[supertrouper]

Just wanted to know if anyone had an update about SCACO?

[applestreet]

Hi
Left a message in the woods for SCACO but wanted to let her know that I am thinking of her and willing her all my best wishes. Her woods kept me sane through my journey and she was really cheery and helpful to me when I felt I couldn't cope. All the very best wishes girl and if you need BRINGITON to visit you I'm sure one of us will find her in the woods and send her to you....STAYPOSITIVE bu++++ed off and left me but I'm sure the lazy little so and so can be found as well. M

[Wandy]

Alto and myself and others have passed on your love and best wishes to Scaco. She has finally managed to break out of hosp and has got home. On lots of pain relief, but has a plan with her onc and hope she now gets some rest.
Wandyx

[sivam]

Stay Calm and Carry on, so sorry to hear you are feeling so ill,candles are lit for you in the dark wood chapel xxMavis

[Alto]

DJ007 - not sure about emails - she's in the clink and only has her phone, but it's worth a go. I'll let her know you were asking, and also ST and Biff's messages.

Jane xxx

[Guest user]

I have popped back into the woods tonight after a long " vacation" to let SCACO know that she is in my thoughts xx

[supertrouper]

Please pass on my message to SCACO - let her know that she is in my thoughts and prayers. The Dark Dark Woods have re-opened and we await her return.

[DJ007]

Same good wishes from me Alto - I do have her email address - Is she able to pick those up?

Dx

[Alto]

Hi folks,

A few of us are acting as go-betweens for SCACO as she can't get on the site. Sheil and moondog I've passed on your good wishes to SCACO. Verity, Mezzomamma has given her your message and she's very grateful for the extra ammo for when she sees her onc today.

Thanks and love to all,

Jane xxx

[Guest user]

Hi Wandy

Very sorry to hear about SCACO, please give her my very best wishes.
Moondog

[sheil]

Hi Wandy,
Say hi to SCACO from me too. I just hope she is doing OK.
Sheil

[VerityC]

Hi Wandy,
Thank you for responding on SCACO's behalf. No need to thank me for my response; I have been helped by others on here and it is good to think that my experience MAY be a help to others, but nonetheless it was good to hear from you.
I am very disappointed though to hear that SCACO is unwell. What can I say...this is such a devastating disease?! Please give her my very best wishes. I will be thinking of her.

Verity x

[Wandy]

Verity,

Its lovely of you to have posted such a lengthy reply. Not sure if SCACO will see it straight away. She is in hosp and not very well. I believe her news is not great, but yours is a lovely positive story and I will pass on to her to have a look.
Wandyx

[VerityC]

Hi StayCalmand carry on ( I LOVE that name....!)
I am very sorry to hear of your worries. I have been away so have not looked at this site for a while until this evening. I see that someone suggested you contact me as I have posted on here before about my liver mets and how they were treated.
I was diagnosed with secondary breast cancer last year, within roughly two weeks of my initial diagnosis for grade 3 breast cancer. It was a HUGE shock!! I was terrified. I had 3 lesions, the biggest being a circle of about 5.5cm diameter. I am ER -PR - and HER 2 +.
I had 4 x AC, which rendered all my tumours inactive AND shrunk them considerably, then 4 x Taxol and was started on Herceptin at the same time. A couple of months after Taxol ended I was admitted to the clinic for radio frequency ablation because the tumours were then small enough to be zapped. It involved an anaesthetic (which gave me dreadful after effects- bad anaesthetist, I think!). For several weeks I would get peculiar twinges in my right side and was convinced the tumours were growing again but they were not; the twinges were the result of the liver having to reform itself where the tumours had been, quite literally, burnt out. I still get the odd twinge, but they are less frequent and less intense.
I had NO symptoms at all pre diagnosis, apart possibly on one occasion, a year before diagnosis, of fluid in my ankles, but even that may not have been liver related as I have always suffered with fluid retention and the medics think that it may or may not have been related - we will never know.
I have had one follow up scan so far which was clear, as I have referred to above. I am due another follow up scan in about 3 weeks time. I hope and pray that it is clear!!
RFA is available if the lesions are distinct shapes and not more than about 5 cm wide. A heated probe is placed into the abdomen and into the tumour to (as my oncologist told me) "microwave" it.
I am now well, post chemo, post mastectomy and LD reconstruction. I am not sure that I had the energy that I had pre diagnosis but I am fairly to very active, mentally and physically, just over a year post initial diagnosis. I consider myself to be very, very fortunate, but in the back of my mind I am aware that at any time my luck could change again!!
If I can help in any way, please let me know. I do not trust the private messaging on this site post "upgrade" so if you wish to PM me just put a note on here that you have so that I know to look out for it.
Do let us know how you get on, and I will be hoping for good news for you!!
Verity. x

[Guest user]

Thanks for that.

They gave me some tablets to Hirt he fluid but nowt is happening, so I'm going to a&e tomorrow.
Think once I can stand up straight I'll feel a tad perkier!
X

[Guest user]

Hi SCACO
Firstly I'm crap on an iPhone with steroid vision so apologies for typos!
I was diagnosed with SBC from the start last year with no lumps, bumps or symptoms after routine scan. I have liver, lung, bone, peritoneal, pelvic and brain mets. But hey I'm still here!
With specific regard to the build up of fluid, I would insist on drainage when it gets to the point where it is uncomfortable. The first time I had 4l drained and the second time was kept in for 2 days and they took off somewhere around 13l. I'm only 5'3 and generally weigh 57-59 kg but my weight had gone up to almost 70kgs! Drainage was such a relief and I could breathe and walk in a non waddling fashion!
Liver mets can be scary but as also mentioned, treated with success. SBC is such an individual disease thatsometimes you just have to shut your eyes to the stats because they won't apply to you.
Personally I have run through FEC, Taxotere, tamoxifen and capecitabine in a year with some progression each time. I'm now on Eribulin which is a new drug (well I say I'm on it - had 1 dose but now bloods too crap for next so waiting for more bloods after bone marrow booster).
The best thing you can do is to find a team you who trust and who you feel will work with and for you. Don't accept the 'stage IV stare' (where they look at you and think - well she's fu****. Get yourself to a second opinion.
Hope I haven't sounded too scary. I was working as a nurse until a couple of weeks ago but had to go sick because I had whole brain radiation and now chemo.
Chemo is a bit of a crap shoot, keep trying til they find the one for you and don't give up hope. There are plenty of success stories out there. Feel free to pm me if you want any more info that I can help you with.
The first few weeks are the scariest until you get a treatment plan in order - it does get better in your head. Hang on in there and if you're anxious or can't sleep get a prescription.
Hugs
Laurie x

[GingerLaces]

Hi SCACO dont post very often these days as site is too complicated, but would just like to say how sorry I am to hear that you are having further tests. You were always very helpful and cheerful whilst I was going through my treatment last year. I would like to wish you all the best and sending a big hug your way.

[Guest user]

Thanks Winnie, I'm sorry about your mum, but it's good to know that she had successful treatment for bc.
X

[Guest user]

Winnie, so pleased your mother got more years and sorry she is no longer with you. Sh*tty disease.
Thanks for your post, so pleased to hear positive stories about liver mets going away xx

[winnie2]

Oh Yes - there is always hope.
if its any comfort - my mother had multiple liver mets 18m on from initial diagnosis. The largest was 6.5 cm.
They all completely resolved on CT scan following treatment with Taxol and Herceptin.
She died 6 yars later (2010) from Bowel cancer & her Breast cancer was still in remission.
Hope this helps.
Many cyber hugs - it must be a difficult day.
xxx

[Guest user]

Thanks for that, I will definitely ask about the gold standard.

I went to get more info today and have been told that I have multiple lesions, with the biggest being 6x6cm. Any hope do you think?

Xx

[mrsblue]

Hi all... I've been following this thread esp. re SCACO (a cyber hug if I may, thinking of your user name).
I was dx with multiple liver mets 3 years ago, so I have been in that devastating place. Now I can honestly say that my day-to-day life is not dominated by cancer... much to my surprise. I'm being literally kept alive by tablets (capecitabine) and am currently free from "liver" symptoms.
Decided to join in today because of the question raised, what is the gold standard of chemo for liver mets. Good question! I had 6xEC (which shrunk 'em by millimetres but temporarily), then weekly Taxol - almost exactly a year after starting EC - but Taxol didn't work for me. Then capecitabine since Jan 2011.
I don't know if there is an official medical consensus on the gold standard... I doubt it, it might depend on Herceptin status?? BUT.... when I had my liver mets dx, the BCN told me, "we can get good control of these if we find the right treatment"
...IF... I would say that the "if" is becoming a more hopeful "When" for many of us liver ladies (& men??)! with the new treatments now available.

[Guest user]

Hey Debs, be as blunt as you like. I'm interested in all views and experiences. I got the news in May, after the news about the lungs!
Moondog xx

[Guest user]

Hi SCACO

I am so sorry that you are having to deal with this.

I was diagnosed with liver mets in March, unfortunately it has progressed. I do get symptoms and would be more than willing to share my experience if this is what you wish.

Please PM me with any questions.

In fact, I was thinking of starting a frank new thread about this, but a little nervous of scaring, upsetting anyone. Help on this would be appreciated anyone? One lady on here has encouraged me to do so but sometimes I can be very blunt!

Debs

[Guest user]

I am only trying to work through what I would ask from reading various threads, but I guess I would want to know:

How many lesions?
Are they the only spread?
If only these, how best can I zap them directly via radio ablation / cyberknife and/or get them surgically removed
How best can I alleviate any symptoms I have as a result of the mets - eg: maybe draining fluid, managing discomfort etc
What is the gold standard chemo for liver mets (I see mention of chemos which may be milder in their SEs but are having good effect. I notice VerityC, who you might PM, talking about what we hope is a similar situation to yours in that this is the only spread and having good results on reducing the lesions. What has she done, what has worked?

Agree with Jane on the biopsy of the new areas, I have also seen people where they have flipped (I think Lemongrove recently) and maybe herceptin or some other treatment would be effective and they might no longer respond to tamoxifen, so pushing for a biopsy seems like a good idea.

We are all here for you any time, Sue xxx

[sheil]

Hi SCACO
Am absolutely gutted to hear this. I rarely visit the site now, but you were always on and a great inspiration when I started about 18 months ago, your posts always gave me a laugh, I even thought about your post about picking blackberries with your son this morning when I picked some myself. This must have knocked you sideways. Just shxte.
Hope you're holding up.
Sheil
X

[Alto]

SCACO, one thing that occurs after having read various other posts on secondaries is to make sure they check the hormone status of the new areas. It seems that quite a lot of people find that the ER/PR status of their secondaries can be very different to the primary but it doesn't always seem to get checked.

Thinking of you lots - the gang are completely united around you.

Jane xxx

[Guest user]

PS: SCACO, Noticed you saying a couple of times that you can't start a new topic. Realised that I don't know how to either and its because there is no "New Topic" button at the top of the latest posts list (which is how I usually come into the site).
If you go to the left hand menu bar and pick any of the headings, like I guess Secondary Treatments and Medical issues and click on it, New Topic does appear to be at the top, so I guess you pick your area and start the topic there.
Had a go at actually doing it and the forum hung up on my computer, (hey ho, can I just say that whilst its content and members are wonderful, the forum user-friendliness is not a patch on how it used to be).

[Lucy_BCC]

Hi staycalmandcarryon

I am sorry to read your news, please don't forget that you can call our helpline to talk things over with one of specialist nurses, lines are open 9-5 during the week and 10-2 Saturdays on 0808 800 6000

If it would help to read the BCC publication prior to your appointment on Friday you can do so via this link:

http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-breast-cancer-liver-bcc36

Take care

Lucy

[Ali_H]

Scaco I'm sorry, I have no advice to offer but I'm sending you a gentle hug. You were kind enough to help me when I first joined the site, I hope the advice you need comes soon x

[Guest user]

Bump

[Guest user]

Thanks for your kind words ladies.

Im now in practical mode. I have some fluid retention in the upper abdomen, it's really quite high and is causing me to feel really tight. Has anyone else had this, know of this? How serious a sign is it? The man at the US scan didn't seem too bothered and I've seen 2 different docs these past 2 days (sickness and diarrhea which was apparently a bug. Feeling better now) and neither have said anything or suggested whisking me off to the hospital. I was given some tablets to reduce the fluid but it was after taking 1 that the vomiting and other started and although the gp said it was just a coincidence I'm a bit nervous about having another, mainly cos I'm in the isle of man and am going home on the boat tomorrow so dont need all of that going on. I'll try again Monday.

The other thing is that I'm seeing my onc on Friday - what questions should I ask? What alternative tests should I be asking for? what shouldn't I put up with?

I would put this in a new topic if I could but it won't let me. I'm going to post it on a few so apologies for the repetition.

Xx

[Lisa_x]

I am so sorry to hear this. Sending you lots of love xxxx

[Milo1]

Hi All,
I also have liver mets, however apart from fatigue and the normal side affects of letrozole i dont feel anything else, I would say try not to worry until you get the scan results. easier said than done I know but best wishes to you

[RevCat]

SCACO I am so sorry... nothing I can say.... just sending a hug.... this d*mn disease... gutted for you. 😞

[Guest user]

I'm so sorry - i've sent you a pm x

[Guest user]

Hi,

Well I've been told that it's in my liver. To what extent I don't know, but it must be fairly hefty as I have quite a lot of symptoms. I'm seeing onc next week (on hols at the mo, called gp for the news).

I feel sick and scared and numb.
X