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liver secondaries

35 REPLIES 35
noz
Member

Re: liver secondaries

Fimillan

hi well believe me we are all in the same boat

scared…..cancer is a terrible struggle isn’t it.

I am going on holiday with my family in April and all I can do to s be determined to go!

we are going to Spain but can’t get m ducal insurance with stage 4 so will have to use 

ECHIC If I get ill

keep take NGH the treatment even if it makes you feel sh*t

we have to keep on keeping on!

much love Noz

noz
Member

Re: liver secondaries

Hi Fiona

nothing much is happening with me as I’m not scanned til end of feb

i like you feel mega tired can’t get upstairs without resting sometimes 

I have problems with my eyes streaming with tears some my face is soaked

l also feel sick everyday and have to take antiemetics 

I have managed to avoid COVID but if we get it apparently we have to have an IV infusion 

I am coping but this treatment seems very harsh

sending you well wishes 

Noz c

 

FiMillan
Member

Re: liver secondaries

Evening ladies

Well this is the first time I've looked at this thread and I'm encouraged by your optimism. 

I have secondary tnbc which has recurred in the same place as primary diagnosis in 2018 and now spread to the liver. 

Options for me are limited because I'm triple negative but reading your posts has given me a little ray of hope, if not necessarily for me,but for others. 

This cancer sh*t really is crap, isn't it? But knowing you're all there to help is amazing

I've had 6 rounds of GemCarbo since my secondary DX, which started in July. My wbc/neutrophils take at least 4 weeks to recover hence why its taken so much longer to complete 6 cycles (I never had this problem first time round so is that an indication of something?). But my last cycle I tolerated fairly well so I'm choosing to do a 7th cycle if my onc says it's OK. I feel fine.other than I tire easily, but is that chemo or cancer I just don't know.

What happens next? I can only have 8 cycles of Gemcarbo and have decided I only want 1 more max. I know each hospital trust has a different approach. I want to go on holiday with family in April but am scared that I won't be able to.

It seems that a lot of women go onto Capecetibine as Stage 2 and I'd be interested to hear where you're all at.

God, this cancer sh*t is rubbish, isn't it.

Most of the time I just deal with the thoughts myself. Sometimes I talk to my husband about it, but rarely do i come to the Forum. Daft really when  you all know better than anyone what I'm feeling.

I'm scared for the long (?) term future but can only deal with the immediate future. When I read your posts it gives me hope so thank you.

Apologies for the ramblings of a scared woman.

Xxx💜

Fiona09
Member

Re: liver secondaries

Hi Noz

I'm not sure how things are going really. My CT showed that the liver mets had shrunk a bit. My bones are stable. I am suffering from really bad confusion, twitching in my arms, hands and legs. I find that my speech is a struggle too. If I'm at home all I do is sleep. I'm not sure if it's the fulvestrant or not. I've had the palbo before and I was ok. The fulvestrant is new to me. How are things going with you at the moment xxx

noz
Member

Re: liver secondaries

Hi fiona

just thinking about you and wondering how the trial is going?

I am on cycle 5 of pablo and fasolex

MRI soon 

Noz xxxxxxx

 

noz
Member

Re: liver secondaries

Hi Fiona

my treatment is identical to yours.

inhave the injections every month now, and they are a bit sore to say the least

i start round 4 of pablo today. It makes me feel very tired, and sick but the anti sick pills do help.

I also sleep a lot worse, but now have sleeping tablets.

my MRI says my metastasis in my liver are all still there, but not grown.

CT SCAN shows the same. So we plod on.

I do hope you have a result soon….as they said to me early days.

i wish you all the best and will send you my love .xxxxx

Fiona09
Member

Re: liver secondaries

Hi Noz.

I finally started the trial just over two weeks ago. I was randomised to have the fulvestrant and palbociclib. The first injections didn't hurt at all but on day 15 I had to have them again and they hurt that time. Straight after Christmas I have to have the injections again. I think at that point I go to every 28 days. During the months I was waiting for my treatment to start I had a CT, this showed that even though my bones were fairly stable the metastases had gotten worse in my liver. I do feel little stabbing pains around my liver now that I never felt before. Hope your treatment is going well. How long have you been on this combination of medication? Have you felt it has made your condition better? I do hope so.

Take care and merry Christmas 🎅 🎄 

Regards Fiona x

Fiona09
Member

Re: liver secondaries

Hi Noz.

I was on palbociclib and letrazole. I struggled with the 125mg of palbo and they dropped it to the middle level 100mg and I was better on that. With this new treatment I'll either get the fulvestrant with or without palbo. Apparently fulvestrant is not readily prescribed here unless it's through a trial. What area do you live in? I'm in Kent. I was told that it is a postcode lottery and Kent doesn't generally get prescribed it unless you're on a trial. I haven't been contacted about when it's going to happen. I'm waiting for an urgent MRI to see what's happening in my head. The fact that it's gone into my jaw, they want to check that it's not gone into any other areas, such as the brain. I just want them to do something to make my face feel better. It's totally numb on the left side. Pretty painful too.

Regards

Fiona xxx

noz
Member

Re: liver secondaries

Hi Fiona I hope by now you have managed to get the trial sorted out and your pain relief. I am having the injection in my bottom every two weeks which is fine if a little bit sore but that’s a small price to pay if it helps

I too have daughters who are in their 30s but still get very upset about my diagnosis. It’s hard for them isn’t it because they still need their mum. I’m also on palbociclib which I take for three weeks then have a week off. Not too many side-effects just tired. What a horrible disease this is. I’m sending you lots of love and hope everything is getting a bit better. Noz

Fiona09
Member

Re: liver secondaries

Hi Noz,

I had an email from the nurses from the oncology team. She said that they are going to discuss my case at the MDM on Tuesday to find out if it's possible to do radiotherapy on my jaw area, that will only be if there's a target area so I'm crossing my fingers. I have to contact the nurses at the hospice and talk about medication to help calm it down. My cheek is swelling and when I look down I feel that I can see it puffed out. I know if I get the radiotherapy it's going to hurt after but eventually when it calms down it will be better. I had radiotherapy on both hips and it was painful for a few days but it's made my walking easier. Have you had any update on your liver mets? What medication are you on? I'm not on anything at the moment. What are the plans for your treatment? It's horrible all of this isn't it? There's times I think I'd like to give up but I'd feel so guilty to my daughters. They are trying to encourage me to try everything so that I don't leave them. It's a very difficult situation 😕 

Fiona x

noz
Member

Re: liver secondaries

Hi Fiona

im so sad that it wasn’t better news.

let’s hope you get on the trial and the treatment works.

you do need to get some pain relief and that should be very possible, you must not remain in pain. Until you know about possible radiotherapy make sure you do get some interim relief.

in this day and age no one should suffer pain.

I send you positive thoughts and love

keep us up to date with progress…..which WILL happen x

 

Fiona09
Member

Re: liver secondaries

Hi Noz,

I went to meet with the trial doctor to have blood tests and answer extensive questions and I'll be having an ECG tomorrow. This will help them decide if I meet the criteria to be part of the trial. While I was there she asked if I had any pain so I said about my face being numb and if it flares up that I'm getting extensive pain in the left side of my face but I'm waiting for the results, she checked and my CT results were back and she said the cancer has spread from the mets on my skull to my jaw on the left side. I need to speak to my clinical nurse specialist to see if they can do some radiotherapy on it to see if it will alleviate the pain and discomfort. I think I knew it was more than a cold. Let's see where they go now.

Fiona xxx

noz
Member

Re: liver secondaries

Fiona

fingers crossed for tomorrow…..why do they take so long to report.

I know most MRI etc are reported in 48 hours, but it’s always TWO WEEK WAIT!!

how many of those have we all had.

colds etc are rife at the moment I have had a low level nose bung for about 3 weeks now, I’ve started on some Sudafed, an over the counter anti congestion medicine , it has definitely helped.

perhaps you could ask your BC nurse if you could try it??

thinking of you and all in the s**t club! Xxxx

Fiona09
Member

Re: liver secondaries

Hi Noz and Timmycat.

I had my head CT already but they are having delays on getting the reports back, at least 2 weeks. I'm hoping I'll hear by Wednesday this week. I've been having some really bad facial pain instances, even at work. I've had a bad cold in my chest and sinuses and I don't know if that's made it worse. When your sinuses are inflamed it can put pressure on your face. I hope as I get over the cold some of the pain will stop. I can't hear out of my left ear either, I could before. This disease throws up some really unexpected symptoms. I wonder how people who don't have it would feel if they got some of them. It's very difficult to explain your pain type to others that have not had it.

noz
Member

Re: liver secondaries

Sorry this is for Fiona from me and Timmy cat!Ive got chemo brain I’m afraid!

noz
Member

Re: liver secondaries

Timmycat

like Fiona I really hope that the treatment works for you.

how horrible to have pain on your face….hopefully radiotherapy might help?

please let us know how you go, and we are both sending you good vibes and love.

noz 

Timmycat
Member

Re: liver secondaries

Hi Fiona,

My goodness, you're really going through the mill aren't you 😔,  so sorry to hear that. 

Hopefully the trial drugs will really work well, so it's a blind trial, that's interesting, and what I found when I was on the trial for Ribociclib and Letrozole is that you get really well looked after, I even had a lovely nurse come to my house every month to take bloods. 

So your mets are in your skull, I can't imagine how horrible that must be, do you have a date yet for your head CT? So hope you get on well with your new treatment (whatever it is to be) and that you get some relief from the pain in your face.

Let us know how it all goes and sending love and hugs, will be thinking of you 💖

Timmycat x

Timmycat
Member

Re: liver secondaries

Hi noz,

So sorry to hear that your evil secondaries have grown, and that you've now got another one! Crossing everything that your MRI and CT scans bring good news, and that your new chemo will work well.

I'm no longer on Letrozole, it's just Capecitabine now, but when I was on Letrozole I had really bad night sweats, so I feel for you.

For me, at the moment I'm feeling pretty good thanks and tolerating the Capecitabine, I should be due for a scan soon when I've finished my third cycle, so hopefully round about the end of Oct 🤞.

Will be thinking of you and all the other ladies in this s**t club as you put it 😅🥰 keep in touch xxxxx

noz
Member

Re: liver secondaries

Hi Fiona I’m sorry things are not going great, but as they keep saying “we have plenty of options to go at” I like you went for a liver biopsy, but they couldn’t get one either, so I’m just on the treatment mentioned with a hope it works tag!

I will think of you and all the others, and hope you get some better news soon

much love Noz xxxxxx

Fiona09
Member

Re: liver secondaries

Hi Timmycat 

My biopsy didn't happen. I went to the appointment and they used ultrasound to locate the lesions. There were some small ones and a couple of larger ones. The small ones were no good to get enough tissue from, one of the bigger ones was in a difficult place for them to get to and the other bigger one had blood vessels running underneath it. So he said sorry and that they couldn't do it. So off I went and didn't look back. So all my drugs have stopped at the moment. Letrazole, palbociclib and Denosumab. I'm possibly going on a trial called Palmira. They use 3 drugs, Letrazole, palbociclib and fulvestrant. Two thirds will get palbociclib and either Letrazole or fulvestrant. The other third will only get fulvestrant. As I've already had Letrazole and palbociclib and the cancer spread when they stopped working, I may get palbociclib with fulvestrant or just fulvestrant on its own. I'll also start back on my Denosumab when I get the results of my head CT. I have numbness over the whole left side of my face, pain in my facial bones also on the left. As I have mets on my skull they are checking if any have spread down to my face and may be pressing on the main facial nerve. If it's a bit of cancer there they may be able to give a single dose radiotherapy. The fun just doesn't stop does it.

Fiona

noz
Member

Re: liver secondaries

Hi Timmycat

thanks for your post my secondaries had grown since last scan, and i have grown one more as well

I have started on palbociclib and have had 3 weeks so far. i'm now on my week off!

it hasn't been as bad (yet) as i was led to believe. i'm also having Fulvestrant in my bottom every two weeks. I will have another MRI and CT at the end of the month/DEC so hopefully they will have responded. The worst things are being tired and terrible hot sweats...I wake up drenched every night, but I guess we have to put up with the endless menopause. I hope letrezole works for you, it did for me.

I send you and all the other folk in this s**t club my love xxxxx

please let us know how you are

 

 

 

Timmycat
Member

Re: liver secondaries

Hi Fiona09,

So sorry that you and Noz have liver mets, I haven't been on here lately so was interested in your posts.

Like you Fiona I have bone mets, diagnosed in December 19 and then a spread to my liver. I was started on Ribociclib and Letrozole, and for 18 months it was kept stable, but in May of this year I felt extremely ill, no appetite, never felt so bad.  I was worried that the cancer was spreading, but was told it probably wasn't.  But by June 21st when I finally had a scan it was discovered that indeed the cancer had spread to my liver. Apparently the Ribociclib had stopped working possibly in May, so for 3 months at least I had no chemo fighting my corner. 

Now,  after a false start when my first cycle of Capecitabine wiped my platelets out to a dangerous low I restarted in September and am now on my third cycle. 

So by now, as your post was three weeks ago you would have had your biopsy, I hope you are as ok as you can be and are on chemo that's working for you. I'm interested in which chemo you were put on and if it's the same as me. I'm finding this new one is doable and now I'm getting used to it, I'm feeling so much better. 

Sending you, noz and all you lovely people loads of love and my best wishes ❤

Timmycat xx

 

 

noz
Member

Re: liver secondaries

Hi

thanks so much for this

helps a lot

i have now taken 5 days….and not a lot has happened!……..I’m still standing!!

hope it continues 

I do have night sweats but have had these for 14 years on letrazole.

blood tests next week so fingers crossed

sending you love xxxx

teresaa71
Member

Re: liver secondaries

Hi

I've just completed my first cycle of Palbociclib and have found it to be fine. I had one day where I did a fitness session and then was completely wiped out and had to have a sleep in the day. Other than getting very hot at night, I can't report much of a difference.

I was really concerned about the potential side effects when I first starting taking the drug. Hopefully my bloods will be good and cycle 2 can start. 

I take Letrozole and Palbociclib after my evening meal. 

 

noz
Member

Re: liver secondaries

Thanks so much…you have given me so much hope

That is just what I needed

Nx

noz
Member

Re: liver secondaries

Hi

thank you so much for this

i have had a terrible week and this made me feel so much better

i had my first fulvestrant injections on Tuesday and am waiting to start palbociclib today

i have had numerous phone calls, nurses pharmacy etc to discuss palbociclib with me.

they have really scared me with all the side effects…really scared me,!

so thanks for telling me your experience…….so helpful

cancer😡😡😡😡

Nxxxxx

Loulou1007
Member

Re: liver secondaries

Hi

I am on Fulvestrant monthly and Palbociclib daily for 3 weeks then a week off. I am just about to start my 3rd month as was diagonsed in June 21 with spine mets. Side effects for me are feeling tired, I work full time  but looking to give up. I have night sweats a few moods swings and hair has thinned but not noticeable. I am ER+ and had an agressive primary cancer 5 years ago was on exmestane for most of that time until it stopped working, I had no syptoms for my spine mets.

You should also have 3 monthly CT and MRI scans I have mine next week. They also monitor the CA15-3 blood marker.

This is an unique club, for inspirations, great advice and helpful friends. My one wish would be to elimate this pain in the ass disease for everyone on this site.

Love and hugs

Louise x

Lambkin36
Member

Re: liver secondaries

I’ve been on Palbociclib for 3 and a half years and have a clear CT scan, side effects mainly fatigue, so tired I need to sleep in the afternoons but pace myself and doable 🙂

noz
Member

Re: liver secondaries

Thanks so much for this

has cheered me up and made my day

much love

noz

noz
Member

Re: liver secondaries

I have had liver secondaries for 14 years on letrazole only….

so don’t give up hope

sending you love

Noz

noz
Member

Re: liver secondaries

I’m so sorry it just goes on and on doesn’t it

i went to clinic yesterday and started on Fulvestrant in my bum!

on Friday I start on palbociclib….from the description of the side effects sounds horrid, but needs must, 

the consultant said it may work for 12 to 18 months

would love to hear from anyone who has had this treatment 

and thank you all so much…..it’s good to have friends, even in a rubbish club!

cathyb9
Member

Re: liver secondaries

Hi Noz I was diagnosed with liver mets I’m March I had quite a lot of them.

im on palbociclib and Letrozole and there has been significant shrinkage and hardly any there after 4 months treatment,

hope this gives you hope 

cathy xx

Mermaid007
Member

Re: liver secondaries

Hi Noz,

While not the news you were expecting, it’s amazing that your initial liver mets cleared up on Letrezole for all those years!

My primary was in 1999 and returned to bones 2014 then liver 2018 so I’m almost 7 years with Secondary. As I understand it because our cancer is “ old cancer” it can be less aggressive and a bit lazy. That’s good news for you plus the amazing new drugs that have cone around since your last diagnosis. If you are still ER + it’s possible you might be put on one of the new oral targeted drugs such as palbociclib or Abemaciclib or ribociclib. I was on Abemaciclib for my liver mets which kept them stable for 2 and half years. I had it along with fulvestrant injections every month ( one in each buttock). Following progression I’m now on an oral chemo called capecitabine. 

Its horrid when you hear it’s come back but, as you know from before, once you get your treatment plan you will start to feel a bit more in control.

lots of info on these boards

wishing you well

Debs x

Fiona09
Member

Re: liver secondaries

I feel bad for you. I have secondary breast cancer in my bones. Today I have been told it has spread to my liver, I have a liver biopsy on Monday. 

Shi
Community Champion
Community Champion

Re: liver secondaries

noz ❤️ Please look up metupuk.org.uk there is a lot of info there too ❤️ Could help while waiting for response from bcn and other thread users ❤️💕💕Shi xx

noz
Member

liver secondaries

hi I was diagnosed with breast cancer 18 years ago

 I had had no treatment other than lumpectomy and sentinal node biopsy which was clear. So my prognosis was good. After 7 years it came back and my liver had many small secondaries.

I was put on letrazole which cleared it on my MRI's for 11 years.

I am now completely gutted that it has come back a third time in my liver again. two small secondaries.

It is not in my bones at present as I have had a bone scan.

First time round it was oestrogen pos not told Her status.

I am going for a liver biopsy on Tuesday, but am so worried about the next steps ie treatment

I'm sure there is something for me but no idea what ??

I cant tell you how upset I am about this news and desperate for you to send me some help

thanks Noz