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Liver mets - new thread

geordiex
Member

Re: Liver mets - new thread

my onc has ladies on kadcyla for brain mets theyve been on for years as once you have mets there or had radiotherapy sometimes the blood brain barrier is damaged so drugs can get thru ,his ladies have been on it for a few years xx

nicky08
Community Champion

Re: Liver mets - new thread

Dear Hilsy, so sorry to hear what your oncologist has said. I do hope you get a second opinion if you want to or at least speak to your current team about any other options. I know kadcyla/TDM1 has been mentioned but I understand it doesn't cross the blood brain barrier so maybe this is why its not being offered or maybe your liver function results show it would be too much strain? Sending you and your loved ones love and supportat this scary time. Apologies for any bad typos I'm having to use my phone.
Nicky x

Gillg78
Member

Re: Liver mets - new thread

Please seek another opinion and quickly. You have nothing to lose. Not on the same scale but my surgeon would not do surgery on my broken shoulder caused by bone mets for fear i need to stop chemo to recover. I pushed and seen 2 other surgeons the last who is performing on Monday no issues at all. I also have a referral on the NHS for a second opinion at Christies for my liver mets my largest tumour is 9cm. I hope you are pain free and please continue to post and let us know your updates. We are all here for you. Xxx
bertie1
Member

Re: Liver mets - new thread

Hi hilsy you must be devastated I can only say what everyone else is and would seek a second opinion as there are other treatments out there and not all oncologists think the same.Sending lots of hugs your way.
Kaye xx
LemonDrizzle
Member

Re: Liver mets - new thread

Hilsy, I do hope you feel strong enough to get another opinion. From reading around, its clear that oncologists think differently about the different treatments available.
Love and hugs
LD
geordiex
Member

Re: Liver mets - new thread

yes Hilsy I really think you should get another opinion for sure ,take care xxx

Hilsy
Member

Re: Liver mets - new thread

You're all so lovely thank you im just not sure what's happening now really im thinking they've seeb things in scans and tests lately they've not been telling me to try and keep me going as I do feel so ill and declining. I don't knowxifctyry can do that? With hold info? She said three weeks ago there was an option of a chemo for my liver but would be unlikely to work as nothing else is and I would be yet more poorly and they justcwantvqualiry of life for me now. Oh well! Maybe I should get another opinion somewhere..... Xxx
geordiex
Member

Re: Liver mets - new thread

thats what Ive been saying re Kadcyla seems wrong to me xx

SDP
Member

Re: Liver mets - new thread

oh I don't understand this at all ... can you get referred for a second opinion?  I've been told that if I show progression in the liver then they will put me on TDM1? I've had liver mets from the outset but have been stable neck downwards on herceptin and perjeta since my initial treatment with docetaxal?  Also I've heard about a few more options since I've been digging around . .. and there are many things they can do to treat the liver!  I'd definately go and see a different oncologist if you can xxxx

2catlady
Member

Re: Liver mets - new thread

Hilsy,I'm so sorry. God I hate this dammed disease. Sending you all my love xxxxxxx
Massive hugs,Helen xxxxxxxxxxxx
belinda
Member

Re: Liver mets - new thread

Dear Hilsy, I'm so very sorry to read your news. I hope you are being kept as comfortable and pain free as possible. You and all who love you are in my thoughts. With Love, Belinda. XXX
Bevlaar
Member

Re: Liver mets - new thread

We're all here for you Hilsy...if the love here could keep us going, we would all live eternally. Im sending you so much love and positive thoughts and will pray that the medics will find something else to try and give you more time without making you too poorly.
Love bev xxxxxxxxxx
geordiex
Member

Re: Liver mets - new thread

what I can't understand is why your not being offered Kadcyla ? xxx

Hilsy
Member

Re: Liver mets - new thread

Thanks so much for your support all. The regime I was on was actually my last hope to keep me going a little longer as im biw Pallative anyway as its secondary. My brain tumour was removed and then I had radiation for it 6 months ago and it came back and Is growing meanwhile I developed liver and lung mets so they put me on herceptin and chemo tablets then swapped herceptin for lapatanib as it crosses the blood brain barrier but I've been feeling poorly for weeks and yesterdayvthey just said the chemo isn't working and they didn't thinking would as nothing else is so im to come off and try and enjoy the time I have now. I'm not eligible for more surgery treatment due to it not working before and the rest of my body. I just hope my liver doesn't pack in too quick love to you all and thank you so much I hope you all do better bless you xxx
LemonDrizzle
Member

Re: Liver mets - new thread

Hilly, your news is dreadful and I can't begin to think about how you must be feeling. It seems that you have been told that the treatment is being stopped without being given any support to help you cope. My onc has always told me that there are different treatments to try so I would suggest getting a second opinion ASAP as there seems to be so many unanswered questions.
Sending love and hugs
LD x
Desi-2
Member

Re: Liver mets - new thread

Hilsy I'm so sorry you've been told this! Just like to add if your up to it maybe a second opinion or re guest any trials available. How are you feeling physically surely that must have some bearing. Xxxx
Gillg78
Member

Re: Liver mets - new thread

Hilsy, like everyone else what treatments have you had so far. You need to get a quick referral for a second opinion your onc has not been so forthcoming with information or support and allowed you to leave the hospital without support. Please contact your gp tomorrow get a quick referral and also contact your BCN for support. Thinking of you. Xxx
Bevlaar
Member

Re: Liver mets - new thread

Hilsy this is devastating. How many chemos have you had? I was under the impression there were many more options. I think i would need to know why he says he's stopping treatment? Are the mets too far advanced??..loads of questions. I cant quite believe this. You must feel desolate.
Sending you loads of love.....bev 💖💖💖💖💖
EJ81
Member

Re: Liver mets - new thread

Hilsy,
So sorry you've been given this awful news. Even worse that they've then left you in the dark about what your results mean and whether you have other times available. Really hope you get some answers soon xxxxx
Tinkerbelle
Member

Re: Liver mets - new thread

Hilsy - Sorry to hear this news; this must have been so difficult for you to hear.  

 

Did they say you couldn't try any other treatments?

 

Are you up to asking for a second opinion just to be sure they've covered every option? 

 

hugs ((((Hilsy))))

 

Tink x

 

 

 

geordiex
Member

Re: Liver mets - new thread

but what about Kadcyla ? xx

2catlady
Member

Re: Liver mets - new thread

Hilsy, huge hugs xxx did he not suggest another chemo. There are many out there! Surely you haven't gone through them all. Can he not do rads on your liver. I'm totally in shock that you haven't been given any information and why you haven't been offered anything.
Massive hugs coming your way,Helen xxxxx
Hilsy
Member

Re: Liver mets - new thread

Hi all, I have mets to my brain liver and lungs. Today I was told there's nothing more they can do and have been taken off chemo of capecitebine tablets and lapatanib for her 2 positive. It's because the chemo isn't working on the liver specifically. Does anyone know or are experiencing having liver mets without any treatment? My liver function blood tests were apparently not too good. I have no idea of this means I won't be here at Xmas or not. Xxx
Gillg78
Member

Re: Liver mets - new thread

I had a double dx in sept. With extensive bone mets, liver, lung and chest wall. After three docetaxel chemo my liver mets have shrunk by about 30% and all other areas are no growth. I continue on another 3 chemo. The past three months have been a rollercoster of emotions. I have a young family my baby was only 5 months at dx...but every day is getting easier.
fergal_jay
Member

Re: Liver mets - new thread

Hi lemon and EJ yes I just go with how she feels we are trying to keep life as normal as possible, she doesn't feel like working at the moment she wants to not be too tired when starting chemo (she is self employed) I do go to appointments with her and my dad, I feel being their taxi service let's them see I'm here for them. She won't let me go in the appointments in think she wants to be the one to tell me if anythingS bad news. She's impatiently waiting for the first chemo appointment as wants to start now haha we are.doing our best I suppose under the circumstances
EJ81
Member

Re: Liver mets - new thread

Hi Fergal - I can see you this time!

I'd second a lot of what LD has just said; this first part is the worst. Once treatment is underway you and your family will find what I call a 'new normal', things calm down a bit and having a plan makes the whole thing seem more manageable.

I had a double whammy diagnosis too, as did several others on here, it is a really scary time. I don't know if you are going with your mum to appointments but I'd definitely recommend bringing a pen and paper as it is a lot to take in. I also know some of my family found the helpline here really useful as I didn't always want to discuss everything with everyone or couldn't answer all their questions.

Lots of love to you and your mum xxx
LemonDrizzle
Member

Re: Liver mets - new thread

Good morning Fergal
There's a few of us who were diagnosed with mets right from the start so your mum is not alone. I'm not surprised you're all shocked and scared as it turns your whole world upside down in an instant. When you find out the chemo your mum's going to have there'll be lots of advice on here to help. Herceptin is much easier than chemo in my experience but it does depend on the type of chemo and how your mum reacts, after all we all tolerate things differently. This early part of the diagnosis is the worse part. The anxiety is unbelievable due to the numerous tests and scans and you feel like there's no future, but once you get a treatment plan and actually start it does get easier as you feel you are doing something to help yourself. At the start each appointment seems to bring more bad news but starting treatment will turn that around as it works and your mum gets positive results instead. Just be there to support your mum (which you obviously are) and let her moan, cry or whatever else and when she wants to be alone then let her - my family find this hard but are getting better!
LD x
fergal_jay
Member

Re: Liver mets - new thread

Hi all hope you don't mind me jumping on this thread I check it and read through everyday as my mum has been diagnosed with breast cancer having spread to liver on Friday. This is primary diagnosis too so all the bad news all in one go. She has been told she will be starting chemo as an urgent request and have 12 months of herceptin but I think we are all in shock and scared. I don't know what chemo she will be having as don't want to stress her with too many questions. Just wanted to say hi to you all wish none had to go through this and say how helpful your comments to each other are even for people just reading them. Any positive stories for bc with mens in liver greatly received and also any info of experience with herceptin, chemo and anything I can do to help mum through this journey

Thanks
Bevlaar
Member

Re: Liver mets - new thread

Morning ladies. Ooooh waking up in my own bed this morning was lovely!
Did some internet shopping at 7am. Hubby bought me my xmas pressie.....a fab cream Jasper Conran wool coat which was in the sale from £200 to £99!! I also had a voucher for 10% off so was £89!
Cant wait for it to arrive this week!

Nice crisp day outside but will stay in the warm today. Last night i made some lovely Spicy Butternut Squash soup ready for lunch today..mmm!
Hope everyones ok and coping well.
The other "Big C" will soon be upon us....Christmas!
Keep smiling....keep strong....as Paul McCarney sang in the Frog Chorus "We all stand together!"
Love and hugz xxxxxxx
lizH
Member

Re: Liver mets - new thread

Hi ladies,

Thanks for the tips on drinks Nicky, will try fizzy water/soda with cordial. I thought my husband was joking with me when he said ' this is sooo lovely' when he ate my shepherds pie!!

EJ , I am having weekly taxol so the thought of every week with the cold cap was even worse !

First frost here on the south coast too.

Have a good day

Liz xx

EJ81
Member

Re: Liver mets - new thread

Liz, I was comparing notes with a lady next to me who had done cold cap for all 6 of her FEC - T cycles and we had the same level of hair loss! It doesn't work for everyone and, personally, I would rather be comfortable.

Also, I have been apologising for the bland, poorly-seasoned food I've been dishing up lately. It only dawned on me this weekend that it's my sense of taste that has gone rather than my cooking!!

I hope everyone is keeping warm this morning. We've got our first frost here in the west country. Xxx
nicky08
Community Champion

Re: Liver mets - new thread

Hi ladies on IV chemo. I sympathise with all that we are going through 😞
Helen, keep strong and I hope the second dose this week is OK and anything you've learnt from the first round helps. Yes, the hair loss seems very sudden doesn't it? At least its a bit cooler/colder now so wearing wigs and covers isn't as bad as the summer, I couldn't have coped at all.
Bev, what a horror story you've had but I hope you are on the mend now and get a get put of jail free card soon 😉 My 1st dose caused so many aches, pains, mouth ulcers, tooth abscesses, tiredness etc that I really didn't think I'd cope at all but I can report back that none of the others have been anywhere near as bad. I've now just had No5 so I'm hoping that it continues. Aches are pretty non existent but I really needed pain relief for the 1st one. Having said that for some reason my immune system is in really good shape, both neuts and wbc, so I've not needed the bone boosting injections.
Liz, my taste buds disappear during the first week or so and gradually come back - luckily for me as some ladies seem to have problems for the whole time. I eat very boring food as I can't taste anything other than cardboard for this time and can usually enjoy food, and different drinks better as the time leads up to the next dose. Water does taste yuk as Bev said on another post but I've found soda or fizzy water (which I normally can't stand) better with cordial in than just plain water or still water and cordial.
Good luck Katherine with results on Weds, I'll be thinking of you.
Nicky x

lizH
Member

Re: Liver mets - new thread

Good luck Bev and Helen this week.

I cooked a lovely shepherds pie tonight and could not taste a thing 😞 My taste has gone really quick!!

I have also packed the cold cap in ..... Just couldn't take it, I think I shall go and have a funky short cut and wait to see what happens.

Love to all

Liz xx

EJ81
Member

Re: Liver mets - new thread

Gillg, good luck for Weds waiting is so hard.
Fergal, welcome but for some reason I can't see your first two posts?! I'll try logging in again later.
Liz, glad you're feeling OK, long may it continue. I'm on my 3rd cycle now and still feeling pretty good most of the time.
Bev, sorry to hear you had a bumpy start. I had an allergic reaction to my first batch but they managed to find an alternative. Hope it all goes well this week.
Helen, I'm sure you're rocking the bald look brilliantly.
Hugs to you all,
Xxx
Bevlaar
Member

Re: Liver mets - new thread

Good luck for wed helen. I'm dreading my second one on 5 dec...because of my ordeal this week after the first.
Let us know how it goes..whether the side effects are worse than the first.
Nicky...do you find the side effects worsen with each dose?? xxx
helen44
Member

Re: Liver mets - new thread

Evening everyone from a wet & chilly Isle of Wight.

Will be going in for my 2nd docetaxol on Wed and I wanted to say a big thanks to you all & to Nicky in particular for the advice - writing a diary of side effects, sucking ice cubes whilst having the chemo etc. My hair began to fall out last week which was a bit sooner than I envisaged but I am now rocking the bald look & going out in my new wig. I was very apprehensive about this chemo, it is the first I have had in 2 years since diagnosis of primary plus bone mets, and I am hoping the 2 liver lesions have been caught early & will be blasted.

The forums are very comforting & informative but I do wish that all of us didn't have to be on here & were healthy instead.

Good luck to everyone with treatments & scans.

Helen x

2catlady
Member

Re: Liver mets - new thread

Good luck,gill for Tuesdays results xxxxxx
Huge hugs Helen xxxxxx
lizH
Member

Re: Liver mets - new thread

Good luck gill,

I have started my taxol , weekly , and not feeling too bad.

All the best for Tuesday

Liz x

fergal_jay
Member

Re: Liver mets - new thread

Good luck gill x
Gillg78
Member

Re: Liver mets - new thread

Fergal jay, I have apparent intensive liver tumours and involvement. I have just finished 3 sessions of chemo and will receive my scan results on Tuesday. I am terrified also but will keep you upto date with my results. X
fergal_jay
Member

Re: Liver mets - new thread

 
fergal_jay
Member

Re: Liver mets - new thread

 
lizH
Member

Re: Liver mets - new thread

Great advice about mouth ulcers, I will try that too.

Thanks ladies send sending my best wishes to everyone.

Liz xx

quality_street
Member

Re: Liver mets - new thread

Hi, not been mentioned by onc but as hormonal tablets stopped working(letrazole, Arimidex etc) I was taken off them and was basically flying in the wind for 6 months! Apart from zometa for bone mets

Bevlaar
Member

Re: Liver mets - new thread

They've asked me to try the new Paxman scalp cooling system. Says its more successful at saving hair than old style coldcap. Might as well try it xx
EJ81
Member

Re: Liver mets - new thread

P.S. don't think my hair loss has been as bad as they thought on Taxol although hard to tell as I'm still pretty bald from EC! (I've gone straight from one to the next as it wasn't working) thought I would stay that way on the new chemo but think I have a bit more fuzz than before. I'll be thinking of you both on Friday. Xxx
EJ81
Member

Re: Liver mets - new thread

Liz I'm on the same Taxol cycle as you with Avastin on weeks 1 and 3. I hope you and Bev both find it manageable. I've found it much easier than EC. Nicky's right about the mouth ulcers though - didn't get them on EC but they're quite sore now. Going to be taking ice poles in a Thermos next time! xxx
Desi-2
Member

Re: Liver mets - new thread

Hi Quality Street could I ask are you triple negative as you mentioned you had a 6minth treatment break? Xx
Bevlaar
Member

Re: Liver mets - new thread

Thanks for the advice nicky. Will make some up tonight ready for Friday. Been having a burning pain in centre of chest this last week and very sore to touch also in between ribs under right breast..but this is the area where the 2 mets are. Onc says theyve grown and almost merging into one.
Im so worried now with this pain too...things just seem to be getting worse 😢
Hope things work for me this time xxxx
nicky08
Community Champion

Re: Liver mets - new thread

Good luck Liz and Bev starting your IV chemo on Friday, hope it kicks e little uggers into touch. I think taxol is the taxane beginning with P (that I can't spell!) so I don't have any advice about the side effects etc but, Bev , if you want any advice about Tax (docetaxol) just ask as I've now had 4 and due my 5th next Friday. One thing that did help me was sucking ice cubes whilst the chemo is being given ( and hour) to prevent mouth ulcers. I didn't understand this at first as to why it would help but someone on here explained its like the cold cap and protects your mouth. I take in a flask with flavoured ice cubes in and sit there sucking them with everyone probably wondering what I'm doing. I'm sure it's working though as I've only had one small ulcer since the first dose when I had so many I was taking painkillers to numb my mouth. Didn't have them at all on FEC so it really caught me out with Tax.
Nicky x