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Have I got liver secondarys

51 REPLIES 51
katiebelu
Member

Re: Have I got liver secondarys

Just read your post, so sorry for what you are facing. I had BC just over two and half years ago, had a mastectomy and the usual chemo and radiotherapy. I am fine just now but what your going through is my worst nightmare. Just wanted to wish you all the luck in the world and I hope the doctors are able to keep your cancer at bay.

dawnhc
Member

Re: Have I got liver secondarys

Hi Mel,

I had the E and the F parts and opted for the cold cap. I did have quite a lot of thinning but manged to keep a decent covering. Those who didn't know me would just think I had thin hair. Yes it is uncomfortable but take a couple of painkillers half an hour or so before they start. If you have long hair get it cut short beforehand - the cold can is more efficient that way. Make sure your hair is wetted before it is applied, and that you can't feel any air pockets. The crown and top are most vulnerable this way.

Dawn
xxx

debsincornwall
Member

Re: Have I got liver secondarys

Hi Mel
sorry to hear you are in pain try not to panic(easier said than done) I have never had pain in my liver even when it was at its worst in Jan this year it was just very big, a bit like later stage of pregnancy.
Please Mel make notes they wont mind ask them to go slowly when they are explaining things to you remember it is o.k. for us to take charge.
Love Debsxxx

mel69121
Member

Re: Have I got liver secondarys

Hi
Am a bit fed up and feeling low.have been in some pain for the last day or so and am worried as it is just below my rib cage were my liver is!! have had to take some morphine which I am feeling is not a good sign.
Kay maybe I misunderstood about the cocktail of drug as what is the point of giving me 2 that are the same.so will ring my BC nurse up today one to ask about this pain (lets hope it is just bad wind or something as not bee eating much) and 2 to check on the drugs I am going to be given.Sometime I don't hear what they are saying to me and I get it all wrong ( well more to the point I switch off)

Mel
xxx

Kay123
Member

Re: Have I got liver secondarys

HI Mel

It does all get terribly confusing doesn't it? I find the onc often gives me so much info and I'm left thinking about one thing whilst he is still giving me yet more info. It sometimes is just impossible to take everything in.

Like Debs, I've had 6 x FEC but not CMF. They are both cocktails of 3 drugs. FEC stands for fluorouracil, epirubicin and cyclophosphamide and CMF for cyclophosphamide, methotrexate and fluorouracil. So 2 of the drugs are the same and it is whether they use epirubicin or methotrexate. Your hair definitely does fall out with FEC though you could see if you could use a cold cap which might reduce the hair loss. I used them initially but actually hated them - gave me bad headaches etc - so in the end decided I just preferred going bald! But they might be something to try.

Really like Jacquie's friend's 'you only need enough for today' (about energy to bear things etc). So often what we do is think about the unknown future and feel we just won't be able to cope.

Hope all goes well with the treatment - let us know how you are doing.

Kay xx

debsincornwall
Member

Re: Have I got liver secondarys

Hi Mel,
it is all a bit of a fog isnt it? I have not had the CMF but I did have 6x FEC the E being epirubicin and that was the one that made my hair fall out. It is a rotten shock and I cant say anything that will make it any better sorry.
It did grow back thicker and curly and I never once complained about it! This last time I took control and had it cut really short it was not as devastating but still not a pleasant experience.
Good luck with your treatment.

Love Debsxxx

mel69121
Member

Re: Have I got liver secondarys

Hi
went armed with my list of questions to th onc and things started of well I asked them and he answered.then I lost the plot and didnt write anything down.Once we got to I could lose my hair I went into a daze.I know with everything else going on that is the least of my worrys but it is just this thing that I have about being bald!!!
they mentioned 2 lots of chemo CMF and FEC I think that is what they were talking about giving me.But as I lost it will ring the bc nurse up again today to check.What did everyone else have?
I feel in a bit of a daze at the moment,that this is just one big dream and I will wake up soon

Mel

Jacksy
Member

Re: Have I got liver secondarys

Hi Mel,
I am so sorry to hear that it is now in your liver. I was diagnosed with primary BC and liver mets within a few weeks in March/April last year.
I was wondering how you got on yesterday. I hope you were able to take a friend with you, and that the staff took things slowly and made sure you understood everything. It's such a b***er having to think about more chemo so soon after the last. You just wonder where on earth you will be able to get the strength. But you will. Whatever it takes to treat this, you will find the energy to bear it somehow each day. A friend of mine says 'you only need enough for today'.
Big hug coming at you. Let us know how you are
love Jacquie x

cavabien
Member

Re: Have I got liver secondarys

Hope the appointment with the onc went as well as could be expected.

Been crossing my fingers for you. (Means "good luck" i my language, hope it means the same in English!)

Ca-va

maltomlin
Member

Re: Have I got liver secondarys

Good luck today.

Mal

mel69121
Member

Re: Have I got liver secondarys

Hi
am going to see my onc today to find out what treatment they are going to give me.Not looking forward to that at all.I have this real issue about losing my hair as I did manage to keep it with the first lot of chemo that I had.Get this feeling that I might not be so lucky this time.Of all the other things going on in my life and I am letting this worry me!! Still have got my list off questions that I need answers to so lets hope they can answer them.

Mel

xxxx

mel69121
Member

Re: Have I got liver secondarys

Hi
I looked at spike thread call laser treatment or what every it said there was some very interesting reading about the basingstoke pelican cancer foundation. They spoke about doing surgery on liver mets and there was another sit about injecting chemo drugs straight into the liver and not in a vein so it does not go around your body.Will have to investigate some more

luv
mel

naunamh
Member

Re: Have I got liver secondarys

Mel , I am so sorry that the tests revealed liver mets. I hate this ******* disease. I hope the info the other ladies with a similar dx can give you will bring some sanity. Could you not take someone with you to help remember your oncs discussions? It doesn't have to be someone you know, an advocate perhaps.
Thinking of you
Margaret

gill23
Member

Re: Have I got liver secondarys

hi mel,
oh boy you are having a lot to cope with in a short time.

I do not know much about the treatment and am trying to find out. My onc does not say he knows anythign either - but there is a tread from spike who has gone to Germany and had Laser treatment to put her Liver into remission. My onc say they do not do that in UK - but since then spike has said she heard they do it at a clinic in Basingstoke. that is all I know.

I am sure we would all go to Germany if we thought it would do any good - but Basingstoke is nearer.

I am going to ask again when I go at the beginning of Sept - when we decide if the Chemo I am having is working or whether I have to change.

How old are your children?

I have got over the shock of IT having spread, but it catches up every so often - still need to cry +++

hugs to you
gill

mel69121
Member

Re: Have I got liver secondarys

Hi
Have only just been diagnosed with liver mets.Was diagnosed in jan with BC have had treatment and think that has all gone .But have it in the other boob and liver which I only found out last week. I have not been offered anything yet.when I went to get the result they were going on about chemo and drugs and other things but it all went over my head I think I went into shock or something Am seeing the ONC next week. Gill you said in one of your comments that basingstoke offer an operation for liver cancer is that right as I don't live very far from there.And what is the laser? never heard of that.Had a really bad day yesterday and this afternoon was not much better.Will I ever except this and get on with my life!! I am finding it all very difficult and upsetting at the moment.
Could do with some real hugs but have not told the kids yet so the only one that know is a friend of mine and she not hear,so will make do will a cyba hugs

thanks
mel

gill23
Member

Re: Have I got liver secondarys

debs,
what is your story - how long have you had the mets in your liver ? anywhere else?

what do they say about treating your liver physically - ie with laser or an op?

love and hugs gill

debsincornwall
Member

Re: Have I got liver secondarys

Hi Mel,
sorry to hear you have been diagnosed with liver mets. It will take a few days to sink in and the roller coaster of emotions is sadly to be expected.
Please get a little book and make notes I promise it help sort out the muddle that develops in our head. When you hear of a new drug or treatment write it down.
The liver is quite a strong organ mine never fails to amaze me.
Sending you cyber hugs as corny as that sounds!

Love Debsxxx

gill23
Member

Re: Have I got liver secondarys

hello Mel,

I have Liver mets - amongst other places.

I am having Epirubicin at the moment and have to go back to see what effect that has a had in a couple of weeks after my 3rd chemo.

It is an absoulote xxxxxxxxxxxxx but we just have to do what they say and hope.

I have cried and cried and cried and still cry occasionally for good measure. I think you have to.

I have asked the question why can't they operate on the Liver and am told they don't in the UK. I have now found out that they do in Germany and there is a place in Basingstoke which another forum poster said is doing it. so I am going ask again. I don't understand why if they do it for Bowel secondaries they don't for BC Secondaries.

Cry cry cry and hope hope hope hope.

go well and keep in touch.
gill

Belinda48
Member

Re: Have I got liver secondarys

Hi Mel

Sorry to hear your news, we all think why us what have we done, I think that still there are so many people in this world that are so cruel its just unfair. That said when you get your head round this your fighting spirit will come through and you will be more positive.

There are quite a few of us with liver secs and living with it so be strong.

Huge hug
Beli x

Sam_BCC
Member

Re: Have I got liver secondarys

Hi Mel

I am sorry to read of your diagnosis, just wanted to remind you if you think talking this through with someone may help please don't hesitate to call the helpline to speak with one of trained members of staff, who will offer you a listening ear as well as support and understanding. The number is free phone 0808 800 6000 and the line is open Monday to Friday 9am to 5pm and Saturdays 9am to 2pm.

Best wishes.

Sam
BCC Facilitator

diane1w
Member

Re: Have I got liver secondarys

I'm so sorry to hear that it was in your liver, the waiting game is the hard but but you do get back to an new kind og norm. I have mets in my liver and lungs and was diagnosed in Feb this year, my kids are 9 and 6 and I hope and pray every night that I wake up with lots of energy to fight this thing. I think the truth is everybody strives to live for their kids and family, you will to.

We all have to live in hope, there are breakthroughs everyday regarding breast cancer they just need to one step in front of us needing them!

Hope you find the stength to cope it does get easier.

Love Diane

sukes
Member

Re: Have I got liver secondarys

Mel,

I don't know what to say other than firstly i'm sorry to hear your news but as some of the other ladies have said treatment has kept it at bay for them so there is hope. I too can't sleep but please keep your chin up.

Take care
sukes

mel69121
Member

Re: Have I got liver secondarys

Hi
couldn't sleep (no surprise) everything keeps going round and round in my head. All I can think is why me what have I done to deserve this and as usual I cant remember what the doctor said. The lump in my other Boob I am going to have taken out .When I don't know but the are normally pretty quick.The doc was on about chemo again and some other drugs I just cant remember.I know that he said the chemo would probably be a different combination to the last lot.Have got to go back and see him on the 1st September.I need to get in a positive frame of mind but I cant.It makes me feel sick the thought of this thing growing inside me and there is nothing I can do about it.What I didnt think to ask is cant they operate on my liver,or if I did ask it I cant remember what they said .Will have to get hold of my BC nurse I think next week and re ask these questions.My mate allways said that I should not go on my own to these appointments and I all ways insist that I do,then I end up forgetting what they say
anyway thanks for everyones kind word

mel
XXXXX

KatherineM
Member

Re: Have I got liver secondarys

Oh Mel

I am sorry sorry to hear that - nothing prepares you even when they have given you lots of hints to be ready for a shock, I know how you feel and as Kay says its no suprise you are totally devastated, you feel that the ground has fallen away... Sending you a cyber hug and lots of good thoughts - its very very hard to bear,

love
cathy

Kay123
Member

Re: Have I got liver secondarys

Really sorry to hear that, Mel. I don't think you can ever be fully prepared for such news, so it is no surprise that you are feeling devastated. When you feel able, let us know what the plan is.

Sending you lots of hugs

Kay x

mel69121
Member

Re: Have I got liver secondarys

Hi
unfortunately the news was not good I have liver mets .Although I was expecting it I feel devastated I just can get my head round it all at the moment
will post later

melxxxx

naunamh
Member

Re: Have I got liver secondarys

Mel I hope the news was good for you today, wishing you well
Margaret

horace
Member

Re: Have I got liver secondarys

Hoping to hear from you soon Mel.Thinking of youxx

Kay123
Member

Re: Have I got liver secondarys

Hope the news has been good, Mel. ANd if it hasn't, that at least you know what the treatment plan is and that it is started soon.

Kay xx

debsincornwall
Member

Re: Have I got liver secondarys

Hi Mel
good luck for today, crossing anything that will cross.
Love Debsxxx

aroma
Member

Re: Have I got liver secondarys

hi mel ,just to say im thinking of you . take care .lynn xx

julie10270
Member

Re: Have I got liver secondarys

I've got my fingers crossed for you Mel. X

gill23
Member

Re: Have I got liver secondarys

I ahve just dropped into this thread.

I have liver, bone pleura and atora tumours. Am currently on Epirubicin and fingers crossed.

Thanks to your question I have read about all these people who are living for years - my onc gave me statistics which were pretty gloomy.

Good luck this afternoon - I will look for your results.

go well
gill

mel69121
Member

Re: Have I got liver secondarys

Hi
Have had a call this morning from Claire (my cancer nurse) asking me to go for an appointment this afternoon with the onc as results are in.Am now very frightened about the results!
I will just add that I cant fault these doctors or the hospital as I thought that I would have to wait for another week and that was going to unbearable.It has only been 4 days.I did book that holiday to Egypt in October and am now wondering if I have done the right thing as I am going on my own.I do feel that I need some time out away from anyone that knows I have cancer to try and get my head round things.But then I dont know if I will be able to get insurance.As I am also diabetic that can cause a problem.perhaps I should just forget it all together.
Anyway will post later when I have the results

Mel xxxx

mel69121
Member

Re: Have I got liver secondarys

Hi
thank you to everyone one for there kind words.From what you all say there is still hope that if I get the positive yes it is liver mets and in the other boob as well.It just seems so unreal at the moment. I had stopped chemo for the BC six weeks ago and now this has turned up.Can i go through this all again.Have been planing my funeral tonight so the kids don't have to worry.Does that seem stupid ! and all I do is cry.Have been of work since April and have managed to get the doctor to allow me to go back next week dont know if I have done the right thing or if I will cope with it,but I need to do something.
I have not told the kids about the scan or what I might have,infact they know very little about what has been going on these past 8 months I didnt want to worry them.They new that I had BC but think that it is all gone.They have there own lives to lead and wrong or right I didnt want to worry them.
Anyway am going to look for a nice holiday that I can go on some were warm and sunny.As long as I am well enough I shall go
thanks

Mel xxxxxx

Kay123
Member

Re: Have I got liver secondarys

Hi Mel

Just as everyone else has said, I am hoping that there is some reason other than liver secondaries. However as someone who was told 15 months ago that I had liver mets, I can also endorse what everyone else has said about still being able to get on with life and enjoy things. I'm on chemo at the moment but seem to be responding very well - no guarantees how long that will continue but currrently the cancer is under control. I won't pretend it isn't a real emotional rollercoaster and that there are bad times as well as good but there is always support here.

The waiting is truly horrible - hope you get your results very soon. L

Sending you lots of hugs

Kay x

Belinda48
Member

Re: Have I got liver secondarys

Sorry your feeling down I know the waiting is the worst. Fingers crossed it is nothing but as other ladies have said there are many of us dealing with this b..................disease but we are fighters and you must join our gang. I have been on chemo for 2 years now and things at the moment are stable.

You did make me laugh aswell debsincornwall I think of things like that but don't say anything.

Big hugs Beli x

aroma
Member

Re: Have I got liver secondarys

hello ive had breast cancer and also have secondaries in my liver which thankfully the chemo have kept stable ,just having regular ctscans now to keep an eye on things .so although at the moment your living in limbo land you will soon have a clearer picture of what to do regarding treatments etc im 2 yrs post diognosis now and still upand fighting ,i know its not easy for you but the support on line is lovely there is always someone here to help .take care of yourself .sending big hugs to you .lynn xx

SuzanneP
Member

Re: Have I got liver secondarys

debsincornwall,

I have just got to say how you made me laugh out loud at asking your Onc whether you should go for a Cashmere coat or a cheaper one. It's the sort of thing that I would think but know that I would be thought of as a complete nutter if I uttered it out loud. It's great that you feel you can say these things!

Suze
x

KatherineM
Member

Re: Have I got liver secondarys

Mel

I am keeping my fingers crossed that it could be something else even though it doesnt look good.

Its been 9 months for me in this club and I have done alot in that time and hope to do more. I am just back from the hospital and things I think are looking pretty stable...so you do go on, its not easy but there are lots of lovely things to do- including not so lovely like full time work for me.

Hope that you can get through this horrible time and they can sort out atreatment plan asap,

take care
cathy

debsincornwall
Member

Re: Have I got liver secondarys

Hi Mel,
sorry you are feeling down but when you have to wait for results it is always a very stressful time.
Remember we are all different and there are lots of treatments depending on results. If while you are waiting you think of things you want to ask, write them down if you have read any of my posts I am forever banging on about my little book! Not so little now I am on my second one, when first diagnosed did not think I would get past 1st page.
In some ways my life has been better than before, Two weeks after being given the rotten news Ian and I got married.I have been able to witness my youngest daughter falling in love and having a beautiful wedding, eldest grand daughter having her first baby(I know I am only 57) so lots of lovely normal things going on all around. For me I try not to dwell on the inevitable I have done some daft things such as ringing onc and asking would I be wasting money if I bought a cashmere winter coat or a cheaper one. His reply buy the cashmere, so I did and you know what I need another winter coat this year.
Sorry if I have gone on I just want you to see that the only difference between me and the stranger across the road is that I know what could be on my death certificate.
You will reach lots of milestones and have the full support of other forum members.

Love Debsxxx

nicky08
Community Champion

Re: Have I got liver secondarys

Mel

Thinking of you during the terrible waiting game. I have bone secondaries so know how devastating tests and results can be but the waiting game is definitely the pits. I hope the scans come back with nothing but if not you are in the right place for support and advice. There are so many lovely ladies on here with liver secondaries who are dealing with it in such a positive way and showing that there definitely is life after a 2ndary dx who will help you with whatever happens. Don't know what else to say but please know we are here to support you and help in any way.

Nicky x

dm1968
Member

Re: Have I got liver secondarys

Hi Mel

So sorry to hear you are going through this crap. I was dx last July with bc and liver mets within 10 days of each other. So now over a year on (hoping for many more) I am still going strong, been to Florida in April and just got back from 2 weeks in Tenerife. So just to let u know that life still goes on and you can enjoy yourself, You never ever forget about the cancer (well I dont) always there in my mind, thinking what ifs and will I still be here for certain things, but you can still push away and have fun. I have 2 children a 4 year old and 20 month old and they keep me sane and keep me fighting everyday.

My last 2 scans showed great shrinkage and am now currently on just herceptin, after having chemo last year.

I hope that they are wrong and the scans show no spread for you.

Take care and let us know how u are.

Love
Dawn
xx

Katie61
Member

Re: Have I got liver secondarys

Hi Mel,
Just want to say that I am so sorry you are going through this terrible anguish. I hope it turns out well for you.

Katie x x

mel69121
Member

Re: Have I got liver secondarys

Hi everyone
Had my scan today and they also did some biopsy now I just have to wait and see ,but from what they said then they feel that it is secondaries in my liver. All I can think is this could be it I could be dead in six months.But then I think about you Debs and 4 years on you are still here.But then I think of my sister who died of breast cancer at 27.think my mind is a bit of a muddle.Felt I had to go to my sisters grave and luckly a friend of my took me .Did ask Dawn (my sister) to give me a bit of help in fighting this.But don't know if I have the energy to.
It is all going round and round I think of my kids and what will they do with out me.I know they are not babys ( they are 18,20,22) but will they cope
anyway am going for a soak in th bath.as feeling very low at the moment

luv
mel

debsincornwall
Member

Re: Have I got liver secondarys

Hi Mel
sorry you are having to go through the waiting game, as the others have said if it is in the liver it is highly unlikely to be cured. New treatments are being discovered all the time.
I have lots of clusters all over my liver my onc says its like blue cheese. Each time I have chemo it shrinks it back I consider myself lucky it has not spread to other organs. After what was a horrid prognosis I am still here and having fun 4 years on!
Try not to panic and good luck for tomorrow.

Love Debsxxx

mel69121
Member

Re: Have I got liver secondarys

Hi
Yes I had an ultrasound.My lymph node were clear when I had them taken out some months ago..Didn't know that it could be transported thought the blood stream (probably being a bit thick)
will let you know how I get on but feel like shit at the moment and dont know which way to turn

luv
mel

Jacksy
Member

Re: Have I got liver secondarys

Oh Cathy - we must have been posting at the same time....

Jacksy
Member

Re: Have I got liver secondarys

Oh Mel, you must be worried sick. I am so glad you only have to wait one more night for your scan - do you know when you will get the results?
We just have to hope that it is nothing to do with the breast cancer and soon you will be looking back on this with relief.
I am so sorry to tell you, in answer to your question, that if you have secondaries such as in the liver, you can never be completely cured, as it means cells have been dispersed around your body through your bloodstream or lymphatic system. I have a tumour on my liver, and have to face the fact that even if they could remove it, the oncologists are all pretty sure that there will be other 'seeds' in my body which, given time, would start to grow. However, there are all sorts of treatments that can keep things under control, and herceptin is very effective in some people.
There are lots of us on here living with secondaries in the liver or other parts of our bodies, for many years.
Hang in there, and let us know how you get on
big hug
Jacquie xx

KatherineM
Member

Re: Have I got liver secondarys

Mel

I don't want to lie to you - stage 4 is not curable - BUT you dont know whether or not you are in this position. I am guessing that you have had an ultrasound or maybe something has shown up on a physical exam and they are sending you for a CT ? It is a really scary place to be and I hope that you can get your scan results soon. There have been women on this site who have gone on and found themselves not to have liver mets, Also there are women on this site who have liver mets and the cancer is controlled, and they are leading relatively normal lives....its really crap the whole thing and I am sorry that it is one thing after another for you.

take care, I hope its gos OK tomorrow, let us know what happens, there will be other people along,

Cathy