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Anyone else with liver secondaries?

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Re: Anyone else with liver secondaries?

Thinking of you Emma. Have sent you a PM
Take care xx
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Re: Anyone else with liver secondaries?

Evening Emma

So sorry to hear that no treatment has worked for you. I can't imagine how you must feel.

Sending love and support for you and your family.

Linda

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Re: Anyone else with liver secondaries?

Thinking of you Deb
How are you doing?
Hugs Pheobe x
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Re: Anyone else with liver secondaries?

Thank you for thinking of me... my news wasn’t good... Gemcarbo will be my last chemo as nothings working so the professors words were’enjoy your last few months with your family’ so after a lot of soul searching, that’s what I intend to do.
We’re getting married in 3 weeks after 18 years together, we’re redecorating & designing the whole house & all being well we’re going to take a couple of weeks away for a cruise. It feels ironic that they say life begins at 40, when mine will be ending, but I’m determined to make the most of every day.
Wishing you all lots of love, strength & prayers... Emma xx😘
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Re: Anyone else with liver secondaries?

Dear Lyndyloo I have had to finish chemo so it's scary! After being on Cape my skin on my poor aching feet is peeling off so using lots of cream on them xxxx Thankyou so much for caring xx hope you are ok xx
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Re: Anyone else with liver secondaries?

Evening hummingbird

Did you manage to see oncologist on Tuesday?

Hope if you have to change treatment it is kind to you with very little side effects.

Linda

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Re: Anyone else with liver secondaries?

Just wondering how you're getting on Maley?
How was your Consultation?
Thinking of you
Phoebe xx
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Re: Anyone else with liver secondaries?

Hi LindyLoo
I had just 3 cycles of Cape and tge scan showed new growth so on Tuesday I see my Oncologist so I see what she comes up with to help.plus my bilirubin is v high at 70 and I look like I've got cheap fake tan on all over !!😡Xx
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Re: Anyone else with liver secondaries?

Afternoon hummingbird

Sorry your scan results were not good. How long you on cap before your first scan? Just thinking it may have had chance to work. I had my first scan after 3 courses of Capecitabine. My liver mets had not grown but had not shrunk either so oncologist classed me as being stable. Back to see oncologist on 5 March will ask then when my next scan is.

Try not to worry easier said than done though. There are plenty other treatments.

Linda

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Re: Anyone else with liver secondaries?

Hi Phoebe

Strange we are given doses. It is supposed to be worked out by height and weight. My height is 5ft 5 and around 10st 10.

Pleased u seem to be doing well on that dose anyway which is the main thing.

Linda

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Re: Anyone else with liver secondaries?

Cornwall has been extremely therapeutic thanks.
I'm on 1000mg twice a day
X
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Re: Anyone else with liver secondaries?

I've had my first scan after starting Cape.I have had the results and one rogue tumour out of 9 has grown so will see Oncologist on 20th :(xxxx
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Re: Anyone else with liver secondaries?

Hi Phoebe

Hope you had a good trip to Cornwall.

As a matter of interest are you on 2000mg twice a day or 2000mg per day..

Linda

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Re: Anyone else with liver secondaries?

I’m so sorry to hear this, I feel for you. I joined in 2014 after double masc too n chemo. So four years later I’m here telling the tale. I still look at this site and wonder when is my 2nd turn in all this, I really hope not! But I do think of you poor ladies too. I have teenage girls and feel sick to the stomach about all this. Big hugs to u all xx
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Re: Anyone else with liver secondaries?

Hi Linda
Great to hear the dose reduction has helped! I'm on 2000mg and have been from the start. I think they are worried I wouldn't tolerate a higher dose. To be honest I pretty often feel sedated. .....that's a good way to describe it!
Anyway we've escaped to Cornwall for a couple of weeks. I'm sitting looking at beautiful Sennen Cove having just got in from a blustery walk on the beach with Archie my cavapoo!!

Have a good day everyone!
Phoebe xx
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Re: Anyone else with liver secondaries?

Morning liver mets ladies

Just wondering how you are all doing. I am half way through my 6th session of Cap. Feel alot better since dose was reduced. On 3600mg felt I was sedated . Was a strange sensation. Hope all you liver mets ladies are doing OK.

Linda

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Re: Anyone else with liver secondaries?

Thank you lovely, lots of love x
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Re: Anyone else with liver secondaries?

Hi Maley
It's good your liver function is fine. Do hope this new chemo works for you and keeps everything under control.
Take it a day at a time and stay positive!
We're all rooting for you
Hugs xx
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Re: Anyone else with liver secondaries?

Hi Maley, I don’t have much knowledge of your treatment as I have bone mets but just wanted to say I’m thinking about you. Hope this treatment goes well, and you get the answers or reassurance you want. Kxx

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Re: Anyone else with liver secondaries?

Thank you my lovely, that means a lot xx
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Re: Anyone else with liver secondaries?

Evening Maley

Welcome to the forum. Sorry to hear you are having such an awful time of it at the moment. Hopefully this new chemo you have started works well with not to many side effects.

Good luck with your 3rd opinion.

Linda

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Re: Anyone else with liver secondaries?

Hi guys, I’ve not accessed this forum until now but I’ve reached the point where I could do with some support.

I'm 40 with 2 teenagers & my primary diagnosis was in 2014, followed by chemo, radio, double mastectomy, hysterectomy & then reconstruction.

My secondaries in my liver were found in Jan 2017 after a routine blood test. My liver function has been fine & I've felt reasonably well.

Since then I’ve been on Capeceptibine, Eribulin & today I started Gemcarbo... nothing seeing to be keeping these stubborn little buggers at bay!!

It’s great to hear some positive stories as I’m starting to feel that my onc is giving up on me.

I'm off to a different hospital on Weds for a 3rd opinion, to be honest I think I’m praying for a miracle. 🙏🏻

Spoiler
 

 

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Re: Anyone else with liver secondaries?

Hang on in there Deb!
My liver mets are very extensive too. Currently on my 10th cycle of capecitabene which seems to be keeping things stable
Hugs Phoebe x
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Re: Anyone else with liver secondaries?

Hi I'm now into the start of my second year and have 9. Large tumours on my liver.They did almost shrink away but suddenly grew back faster than before.Im currently on Cape.I don't have anything else but my brain is acting up lol xx
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Re: Anyone else with liver secondaries?

Hi ladies

Just thought I would bump this up as it has slipped down page.

Linda

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Re: Anyone else with liver secondaries?

Hi Maria

great to hear you're still going strong after 22 months! It's encouraging to know there are so many different drugs they can try. My Consultant did sya that breast cancer seems to respond to a change of drug.

My next scan is 3rd jan. 

Will thinking of you in December

big hugs xx

 

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Re: Anyone else with liver secondaries?

I was on 4mg. I don't think they like you to be on it for too long. They put me paciltaxel chemotherapy and had 8 weekly sessions of this before they gave me xeloda. I think it does takes time for the chemo to kick in. The swelling has only reduced gradually over time. My BR was up slightly this time but they did say that xeloda can cause it to rise. There are so many different treatment regimes and I'm sure they will be tailoring things specifically to your Mom. Stay strong and positive! big hugs and prayers xxx
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Re: Anyone else with liver secondaries?

phoebe, they have her on 8mg/day of the steriod. how many mg did they give you? She was on it for about 3 weeks then stopped now again bc of the bilirubin up again. im praying the xeloda kicks in. its been 5 days now and no improvement...


praying🙏🏻🙏🏻🙏🏻
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Re: Anyone else with liver secondaries?

Yes my abdomen was quite swollen in April/May. I took dexomethazone for while, which helped, but kept me awake! Things have improved as my liver function has perked up with the chemotherapy. i will be praying for you and your Mom Joellek xx
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Re: Anyone else with liver secondaries?

Thanks Maria great to hear you,re doing well too and will be thinking of you ....I have a scan 3rd jan xx
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Re: Anyone else with liver secondaries?

ladies as you may have read we r struggling, did any of you have swelling in the abdomen due to the liver? My mom has a lot of swelling and is going to call to day to see if it can be drained?
please send some prayers our way.

praying🙏🏻🙏🏻
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Re: Anyone else with liver secondaries?

Morning Phoebe4,

 

It sounds like you are doing well and that your treatments have managed to control your liver met.  That's such good news to hear and I hope you are able to keep positive and keep your faith in the treatments.  I too have liver mets, coming up to 22months since diagnosis.  I am on Exemestane at the minute with a scan at end of Dec to see if it's working.  Keep positive and keep posting on here, so many lovely ladies to talk too.

 

hugs, Maria x

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Re: Anyone else with liver secondaries?

Hello everyone!

It's reassuring to know you are there, coping with liver mets too.

My liver mets are  very advanced and things didn't look good in April this year when I was diagnosed, but the Consultant was quite adamant that he'd had good results with  Paclitacel, even in cases like mine, and it has really helped me. Now on Capecitabene.

 

How is everyone doing?

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Re: Anyone else with liver secondaries?

Hi All,

So Tuesday was a very very bad day for me. Was convinced that I wasn't going to make it beyond my next birthday. 

 

Someone mentioned Maggie's, so I went on to their website and fortunately they had a group session for Secondary BC sufferers on the Wednesday.  So I went along and was surprised at what a fantastic place it was. Getting to sit face to face talking to ladies who were in a similar position to me, but a few years on gave me some hope. 

 

My original oncologist passed me on to a new oncologist, who i saw yesterday.  As I was only on tamoxifen for such a short time before my lumpectomy, she said we can't be sure that it was actually having any effect on the liver Mets. So yesterday I had a Zoladex implant done, and hopefully in a month when I am fully into menopause I will be able to switch from tamoxifen to letrozol. 

 

If the body scan shows no more spread they are still happy to remove the liver tumour.

 

So now just waiting for scan.

 

 

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Re: Anyone else with liver secondaries?

Morning Ptt

Welcome to the forum. It is a terrible shock when you get diagnoised with secondary breast cancer as I was back in 2009.

At first it was only bone mets till last scan in August showed up liver mets. Now on capecitabine.

Have you found out what your next treatment is?

Keep in touch

Linda

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Re: Anyone else with liver secondaries?

Hi Ptt was diagnosed last Friday with 2 liver secondaries seeing consultant tomorrow. I’m 10 years from a similar primary stage to you. Left feeling ‘where did stage 3 go?’ Today is the first day I’ve not cried. Hope you get plenty of support here for your journey. I did the first time round. Judy x

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Re: Anyone else with liver secondaries?

Thanks, just can't believe I have to wait until Tuesday. More waiting.

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Re: Anyone else with liver secondaries?

Hi, and sorry you have to find yourself in the secondaries part of the forum.  Unfortunately breast cancer doesn't like to behave itself so it throws out the unexpected.  As a low grade, non aggressive (ie not HER2+++) BC your oncologist woud have assumed the growth was a cyst or similar.  I know I had a shadow on my CT scan when I was diagnosed with secondary bone cancer in 2008.  As it didn't grow or shrink with chemo it was thought to be a cyst.  Maybe it was, but some 5 years later I was diagnosed with liver mets as well.  Secondary BC can occur at the same time as primary BC and some ladies on here have had the 'double whammy' of both diagnoses at the same time.  Some have also been disgnosed with secondary BC but the primary site has never been found.  As I said BC doesnt always behave itself as we are lead to believe.

However, you are now speaking with your oncologist about treatment and that will be a bit of a minefield at the moment but we are here to answer any questions you might have.  This can be before your appointment or afterwards, we do all understand your fear of the unknown and the main advice we tend to give is dont do an internet search!  Facts and figures are way out of date and we are all individuals.

Take care and hope you get a treatment plan in place as soon as possible.

Nicky x

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Re: Anyone else with liver secondaries?

Hi All

 

I was diagnosed in back in August with a grade 2 ER+ HER2-neg. Had the lump removed along with some lymph nodes. And started radiotherapy this week.

 

On the CT scan i had in when they found my BC, they also found a growth on my liver which they originally thought was an unrelated benign growth. 

 

Move forward a couple of months and my recent MRI showed the growth had increased to 8cm.  So then i had a biopsy done. Results from that today and they have said it is the secondary BC. 

 

So appointment on Tuesday with oncologist to discuss chemotherapy. 

 

After having such a small primary BC, I'm just struggling to understand how it has spread.

 

I'm only 5 days into my 20 days of radiotherapy.  So I'm worried now that I will have to finish the roads before starting chemo !

 

I thought I'd been so lucky that the BC had been found early, so much for that 😔

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Re: Anyone else with liver secondaries?

Afternoon Nicky 08

No need to apologise I am pleased u managed to get away on holiday. Hopefully the weather was better than it was here.

Thank you for your explanation regarding liver function results. I certainly know alot more now than I did a couple of months ago.

I week nearly over with taking cap. Not felt much different. Appetite still good. Went out on Wednesday as usual with my friend had 3 glasses of wine as normal with a spot of lunch. Long may it continue. When will you know what your next treatment is?

Have a good weekend.

Linda

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Re: Anyone else with liver secondaries?

Hi, and welcome to any newbies.

I have been away on holiday for a week so not responded to any posts (sorry Lindyloo) or added any advice or experiences that have helped me.

I have bone mets (since 2008) and they spread to the liver in 2013. I have had Capecitabine, which worked for 18 months then went on to a combination chemo regime of Docetaxel, Herceptin and Perjeta which worked for about 14 months (6 cycles included the docetaxel element then the following ones just the H and P) then Kadcyla which didn't work (phew, what a long list but it's not been as bad as it sounds) I have just had a scan after 8 cycles of eribulin and I know only show one liver met that is continuing to shrink (I had several at th start of eribulin) and bone mets are stable. I am very tune in to my LFT results especially the ALT, AFT and bilirubin figures! Sometimes they have been very high and I know my liver is under stress from the disease or sometimes the added stress of dealing with a glass or two of wine! Currently all are in the low to middle figures of the normal range which is why I suspected my liver met/s had shrunk. I also know that you can generally still have chemo as long as the figures don't go three times over the maximum of the range. I had this a few times when on Cape and had to have an extra week off until the figures reduced enough. These were the only times I felt my liver was being stressed and felt sort of 'heavy', the only way i can describe it. Once this was due to some heart medication that I was put on by a cardiologist which sent the figures through the roof and I felt so unwell. I now see a cardio oncologist to make sure there's no clashes with the different meds I'm on as I had heart damage after having FEC in 2008.

Hope all are coping well with the treatments and the side effects are minimal.

Nicky x

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Re: Anyone else with liver secondaries?

Hi there I have liver, lung and bone mets, dx Dec '16, had fulvestrant + trial drug then Cape but they didnt work. But- good news, I am on paclitaxel and after 9 sessions showed all responding, with 1/3 to 1/2 shrinkage. xxx

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Re: Anyone else with liver secondaries?

Hi Nicky thank you for the information regarding enzyenes.

Hope your chemo is going well and not to many side effects.

Think the reason why I had Taxetere was because after 3 Fec my tumours markers had gone up. I asked what they were next thing I new was they changed it to Taxetere. Wonder whether it would have been changed it I had not asked.

Oncologist must hate me I am always asking questions. Make a list before I go.

Hugs
Linda

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Re: Anyone else with liver secondaries?

Morning Ladies,

 

I am not completely sure that this is correct but I seem to remember worrying that I was having 6 x FEC whilst other ladies were having 3 x Fec and 3 X Tax.  I think I was told at the time that the T is added when there is lymph node involvement.    Hopefully someone can answer your question a bit more professionally than my fuzzy recollection.

 

🙂 x

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Re: Anyone else with liver secondaries?

Hi Linda,

 

Mine were high initially which is how I found out in the first place, they are gradually coming back down to normal now.  There are number of LIver Enzymes but the ones they check are ALP (which should be approx under 115ish) and ALT (which should be somewhere under 50ish). I say 'ish' as the norm varies slightly from lab to lab.  I believe, and I am no medic, that they raise when the liver is under stress and is an indication that liver cells are dying.  This is only from stuff I have read up on the internet as I'm one of these people that needs to know everything that is going on in my body so I'm fully equiped when I see my oncologist.  I think I drive her crazy, but in a funny way 🙂

 

I'm 40 so in my eyes still quite young. Certainly not the way I had hoped to start married life.  Number 4 chemo tomorrow.  Its werid why some of us are on 6 x FEC and some of us are on Tax.  Is there a reason for this?

x

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Re: Anyone else with liver secondaries?

Evening Nicky

You must be a bit in shock being told you have bone mets which you knew nothing about.

Sorry things seem to be progressing fast. Hope you had a good honeymoon .

I asked last week when I was at chemo unit sorting out my cap to see my liver function results they were all within the normal range. Have to say it is the first time I have asked to see results. I am going to ask every time in future.

As a matter of interest what should the reading be.

If you don't mind me asking how old are you with you just coming back from honeymoon I am guessing you are only young.

Linda

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Re: Anyone else with liver secondaries?

Hi Maria

Nice to hear from someone in a similar boat as me.

Treatment so far dianoised with breast cancer and bone mets 2009 had 6 chemo 3 Fec 3 Taxetere then put on Letrozole which worked till 2014 changed treatment to E/E combo which worked until recently. Discovered it had gone to liver on last scan. Just started cap today. Hopefully it will work. Not sure what size is the tumour did ask oncologist got no reply. Will ask again at next appointment..

What hormonal treatment are you on now?

Like you say bet there are quite a few women with liver mets. Wonder if there are many who have lived with it for 10 years would be nice to hear from them. Would certainly give me a boast.

Hugs
Linda

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Re: Anyone else with liver secondaries?

Evening Ladies, I was dx original with bilateral June 2015, double mx and recon followed by 6 rounds of FEC-T and told there was very little chance in a recurrance.  Came back from honeymoon in May with stomach pains, several tests and scans later got told it had come back with a couple of 2cm lession in my liver.  I was mortified and still am.  Have had 3 x Tax, Herceptin & Perjeta.  Had halfway CT scan results last week hoping that the treatment had done something.  Was told, by a different oncologist than normal, that my bone cancer was healing well.  I didnt event know I had bone mets! Also told there was a 3rd small tumor in my liver which they suspect was there all along as well but grew in between my initial CT scan and starting chemo (had to wait 3.5 weeks as had to have a port put back in and then wait a week for it to heal). All very scary and a massive curve ball to me and my husband. He seemed positive that treatment was working as it was showing the healing bones, just was hard to share in his optimisim.  Does anyone else monitor their liver enzyme results?  I'm obessed with checking my numbers, but not sure whether they mean anything or not as mine are coming down to almost normal but CT scan shows no reduction in size?! Also, does anyone else have bloating and pains in their liver.  The pains have progressively gotten worse with each chemo, its not there all the time but comes and goes, like a dull ache or a twitch at times.  I worry as it should be getting better not worse. My onocologit didnt seem too concerned with it but I am. Anyone else have this?  My initial pains went after first chemo, but then they feel like they are coming back and I worry that the treatment is not working. xx

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Re: Anyone else with liver secondaries?

Deb here I'm on KADCYLA and have a review tomorrow as I'm past my 6 months.Previously I've had Herceptin perjeta taxotare then P & H until lesions grew.love to all x ps I have 8 liver lesions x
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Re: Anyone else with liver secondaries?

Hi Linda,

 

I was diagnosed with Liver and Bone met at the same times as my primary in Janurary 2016.

 

I have had Fec which shrunk all mets and then lumpectomy.   I was on Tamoxifen and Zometa until a recent scan showed slight progression when I was move onto another hormonal.

 

I often wonder how many ladies  are out there with liver mets and uplifting stories to share that read this site but don't post.

 

Its hard but we are LIVING with this.

 

Maria