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Liver mets - please join in

83 REPLIES 83
Jo_BCC
Member

Re: Liver mets - please join in

Hi Hilsy

 

Sorry to hear of your problem, I'm sure the staff on the helpline will be only too happy to talk to you about this if you would like to give them a call.  Lines are open weekdays 9-5 and Saturdays 10-2.  Calls are free 0808 800 6000

 

I hope you have a very happy wedding day.

 

Best wishes and take care,

Jo, Moderator

Hilsy
Member

Re: Liver mets - please join in

Hi all im starting this group now new. It's a long story but basic question. I know One place I have mets is liver, no symptoms but this week my eyes have quickly gone yellow. My Macmillan nurse said will be jaundice prop a tunour blocking the bile duct. Very silly question but I get married in 3 days....can I not touch alcohol now? Any other info re blocked bile duct gratefully received please hope you're all coping ok x
Ramsfan55
Member

Re: Liver mets - please join in

Thanks nikky , I will speak to my onc about it x

nicky08
Community Champion

Re: Liver mets - please join in

Hi Suzanne
The reason I had the biopsy done was that my bone mets had progressed on hormone treatment, as well as the liver mets appearing. Lemongrove, on here, had repeated said that up to 30% of breast cancers can change receptor status and as I had been HER negative since day one I thought I would get it done, mainly as I now had a soft tissue tumour that is easier to biopsy than the bones. It's not a pleasant experience I must admit and can only be done if the tumour/s location in the liver is accessible however it did show that hormone treatment alone would not be good enough as a follow on from the Capecitabine I'd already started. I am still strongly hormone positive as well by the way but the chemo at least is treating all these receptors. Also I have learnt that if you are HER+ initially you will not change to HER- Obviously none of this has helped me, other than scare me about not having Herceptin at the moment, but I hope to eventually have it included in my treatment.
Nicky x

Ramsfan55
Member

Re: Liver mets - please join in

Thank you both of you. I hope you both continue to do well with you're treatments. Do you think I should ask for a biopsy?

nicky08
Community Champion

Re: Liver mets - please join in

Hi Belinda, the only improvement with the forum is the fact you can put a cat emoticon in the posts! But I can't be bothered! Thanks for checking on me and, yes, I was very pleased with my results, had expected Capecitabine to have stopped working as I had a few niggles in the abdomen over the past two cycles. I am aware that vinorelbine is in tablet form and I've already told my onc to check that one out lol. It was good to read that you know of someone who had it for quite a while with good results. I have been getting on much better with capecitabine so the side effects arent too bad. I am having an extra week of this week since the heart procedure. Please do PM me if you want.
Suzanne, my liver mets were dx after I'd requested a CT scan for some bone/nerve pain in my leg towards the end of last year. My onc was very surprised to see the liver mets show up and I certainly hadn't had any symptoms. I (think!) have 3 mets and the largest has shrunk by nearly half since treatment began in Feb. I can't go onto anything stronger, treatment wise, at the moment due to problems with my heart - brought on by FEC 5 years ago but we are working towards this. To be honest I haven't asked that much about them but do know I'm responding to a treatment that is not the optimum for me. When I was dx I asked for a biopsy and this showed I had changed receptor status to HER+ but my heart doesn't allow me to have Herceptin therefore I am lucky that Capecitabine is working at present to keep everything responding until I hopefully one day do get Herceptin added to the mix.
Nicky x

belinda
Member

Re: Liver mets - please join in

Hello Suzanne, I'm sorry to read your news. I've always been told, by one of my Onc's lovely team, the liver is very treatable and very adaptable. Wishing you all the best with your treatment.

Hello Nicky, I don't like these new forums, Cat Mad  hope Cap's not causing too many troublesome side effects. Good to hear of your CT results! I expect you may know this already but just in case Vinorelbine is available in tablet form.

Ramsfan55
Member

Re: Liver mets - please join in

Thanks Nicky. May I ask you long you have had liver mets and how were they described to you? X

nicky08
Community Champion

Re: Liver mets - please join in

Hi Suzanne
Sorry to hear you've now joined the bone and liver mets gang 😞 I had 5 years of 'just' bone mets which were treated with hormones after initial chemo and my life was fairly ordinary. I've now gone back on the chemo treadmill albeit on the oral Capecitabine. Getting used to going back to hospital every 3 weeks though is quite tough however we all do what we have to I suppose. It sounds like your liver mets were caught fairly early so I hope you get a good result from the chemo. Because of other health problems I can't have any of the hard hitting IV drugs so am continuing on Capecitabine until it is shown not to be working when I shall have to go onto something else. Having said that a CT scan this week has shown it is still effective and shrinking the liver tumours plus my bones are healing so that was a huge relief. Good luck with your treatment. There was a Liver and Bone Mets thread on the previous forum but I don't think it was used as much as the Bone Mets thread so it may have disappeared!
Nicky x

Ramsfan55
Member

Re: Liver mets - please join in

Hi everyone, I have the news today that I now have liver mets to add to my bone mets. I had a clear CT scan in July, but as my tumour markers were still up my onc ordered another one. Ironically I feel really well! Apparently the mets are small but across the liver. My onc is putting me on taxotare in a couple of weeks and told me that because I am fit and well it puts me in a better position to fight the cancer. I would love hear your experiences of taxotare and liver mets please. I was Dx with primary and secondary 3 years ago and have had EC chemo and lumpectomy/ radiotherapy. I am ER+ her2 neg. I am 58 and wanted to remain a bone mets lady but wasn't to be 😞
I know that many of you are doing well and that there are many good treatments out there. But would love to hear from you xxxxx
Suzanne x

Julesie
Member

Re: Liver mets - please join in

Hi Angela

I'm feeling well thanks (apart from the occasional gastric problem and tender hands/feet) I'm pleased that my tumour markers dropped again when I went for blood tests on Monday so will happily put up with the symptoms if the treatment is having a positive effect. I'm plucking up courage to have more scans probably next month. Hope your results are good when you get them. Hope all the other liver ladies are doing well!
J xx
elliedog
Member

Re: Liver mets - please join in

Hi geordiex. Great news about the sub Herceptin sounds like you have a great onc (which makes all the difference). Long may Herceptin continue.
Thanks Julesie hope you are well.
Angela x
geordiex
Member

Re: Liver mets - please join in

thats great news Elliedog I bet your so pleased ,I will be getting the subctanious herceptin on my next visit Newcastle is the first to use it for both primary and secondaries so I'm very pleased glad your feeling well and normal xx

Julesie
Member

Re: Liver mets - please join in

Hi Elliedog

Great to hear your positive news and sincerely hope that you are able to stay o P/H for a very long time.

Xx
elliedog
Member

Re: Liver mets - please join in

Hi everyone. Had my scan to see if the chemo has done its job but apparently the results can take up to 3 weeks (although I know the onc can pull it up on the computer instantly, even without the scan report). On the up side I went for my review before  my herceptin and Pertuzuamab infusion and was told by my lovely trials nurse (who had spoken to my onc) that I wasnt to worry to much about the scan (small less than 1cm met found in liver). Plus she only wants to see me every 3 months in her herceptin clinic and they will do my bloods every 3 months on the same day as the clinic and will scan me every 6 months. So that means after I finish my rads I wont feel like im living at the hospital just have to go every 3 weeks for my infusion. So far so good on just the P/H no horrible side effects, hair growing lovely and apart from catching a cold and cough from my eldest son I am feeling nearly normal (although have pulled a muscle in the rib area from to much coughing but that should ease now the coughing has eased). First time since  dx in Feb this year that I feel like I have a future and have some normality. Just hope I am lucky enough to stay long term on P/H. Its good to feel well!x

mrsblue
Member

Re: Liver mets - please join in

geordiex
Member

Re: Liver mets - please join in

cirrhosis is a scarring of the liver ,basically damage caused by chemo ,I meant to ask onc if it would stop now chemo has stopped ,I know it won't get better but so long as it doesn't get worse x

kjb67
Member

Re: Liver mets - please join in

Hi Geordiex, I am on the TDM1 trial and my onc told me my gamma gt was high and this usually goes up if you drink alcohol but as I don't drink he says it was the chemo as this is one of the side effects. They delayed my chemo for a week and it went back down. I have just had my next chemo and it has stayed down now....higher than when I first started but nothing to cause concern. Not sure if this is cirrhosis though!! xx

powerjen
Member

Re: Liver mets - please join in

So sorry to hear the sad news about Gail ,

geordiex
Member

Re: Liver mets - please join in

hi has anyone else had cirrhosis show up on thier ct scans last 2 (not sure about first) have shown cirrhosis ,no mets now ,when I asked what would cause it she said usually alcohol ,I like a drink but not to that extent ,so she said it could be the cocktail of chemo that Iv'e had ,anyone else heard of this ? xx

nicky08
Community Champion

Re: Liver mets - please join in

So sorry to read about Gail, what a sad day but thank you Val for giving us an update about her family and the funeral. She seemed to have such a tough time with all the treatments so the only consolation is that she is now at peace. My thoughts are with her family and friends.
Nicky x

scottishlass
Member

Re: Liver mets - please join in

As if this is complicated enough Pam. BCC changing your name to Pam01 from herbgarden. No wonder I get confused. Think you will keep having to add AKA until I get used to your new name. Good to see you posting here again. Love Val

pam01
Member

Re: Liver mets - please join in

I am AKA herbgarden.

So sorry bto heatr the news re Gail. My condolences to her family. RIP. Pamx

scottishlass
Member

Re: Liver mets - please join in

Sorry I didn't see the question about Gail until today as not been on the site much as had bus time since last week. I did attend Gail's funeral last Friday and it was done by a Humanist and truly the best funeral I have attended as she talked so well and told us so much about Gail's life, that I never knew. She had died peacefully the week before in her local hospice. I spoke to her Mum and family at the end of the funeral and explained I was representing lost of ladies who had received and given support to Gail. I called her Mum on Tuesday as I found out she lived on the west coast and I lived there  for a while and in the course of conversation found out that her Mum knew and worked with my brother-in-law and sister-in-law. She is retired now. Such a small world and have said I will pop in to see her next time I am over. I had met Gail a few times as we had treatment in the ward but often spoke to her late at night on chat on fb. To be honest she deteriorated very quickly and her Mum agreed. Such a shame that yet another lady has been taken from us. Keep as well as you can girls. Thinking about you. Val

 

elliedog
Member

Re: Liver mets - please join in

I am sorry to hear this news my thoughts
are with Gails family. Rest in Peacexx


geordiex
Member

Re: Liver mets - please join in

so very sad and sorry to hear this news my thoughts are with Gails family .Rest Well xx

belinda
Member

Re: Liver mets - please join in

I'm so sorry to read the sad news of Gail.

My sincere condolences to those who loved her.

Rest in Peace Gail..x

Julesie
Member

Re: Liver mets - please join in

So sorry to hear the sad news about Gail. Although I didn't know her personally, she took the time to respond with advice and support for me when she was clearly very poorly herself. Love and thoughts to her family and friends.
bertie
Member

Re: Liver mets - please join in

I am saddened to have to tell you that dear, sweet Gail lost her brave fight with this cruel disease, she died peacefully and her funeral was last Friday. One of our ladies Val (Scottish lass) attended the funeral representing all her breast cancer friends. Another beautiful woman taken far too early, RIP Gail , love to you all at this very sad time
Marina xxx

elliedog
Member

Re: Liver mets - please join in

Thanks Sarah. Hope your feeling well. I will take a look at the living with secondary thread. Angela x
SP0
Member

Re: Liver mets - please join in

Angela (elliedog), good luck with scans on Sat.  You're doing really well to feel fairly normal, make the most of it and enjoy your sons' birthdays.   Remember side effects are no indicator of treatment effectiveness!

 

See the other thread in 'living with secondary' I started recently on facebook groups.  I got good responses from a couple of others.

 

Sarah.x

elliedog
Member

Re: Liver mets - please join in

Hi . I have been wondering how Gail is to. xxx

geordiex
Member

Re: Liver mets - please join in

hi pleased your feeling well I don't know how to get onto the facebook page ,I was also wondering if anyone knows how Gail is ?xx

elliedog
Member

Re: Liver mets - please join in

Hi everyone. Just posting for a little rant. Was due to have scan after finishing chemo on Monday but it was cancelled because machine has broken. So now being scanned this Saturday. Got appointment with onc on the Monday so i hope the results get to him quickly in time for my appointment. On the up side feeling nearly normal even after 6 rounds of chemo, Herceptin and Pertuzumab although think I caught my sons cold yesterday but today I feel like it has almost gone (weird). Sometimes I wonder if I should be feeling worse in order for the drugs to be working on my liver but I know thats me just being silly and I should be grateful I feel well (and long may it continue for us all). Anyway today I am putting healthy eating on hold as it is my youngests sons birthday today (he hits double figures 10) but then tommorrow its my eldest sons birthday ( I could of planned that better).So lots of cake for the next 2 days. Hope your all keeping well. Angela xx P.S Does anyone know anything about this Facebook site for us mets girls.

geordiex
Member

Re: Liver mets - please join in

hi it was my alp that alerted my doctor and the fact I was feeling tired ,at its highest it was 2000 now its back in the normal range between 40 and 140 I still have bloods checked every 3 weeks for all I have herceptin which you would normally have bloods every 3 months ,just to keep a check on lft xx

SP0
Member

Re: Liver mets - please join in

geordiex,

I never asked the details of my liver function tests, got the general message from onc that it was all working ok.  To echo an earlier point on this thread, the liver is amazing at continuing to work efficiently, even after a large chunk has been cut away.  Mine was working normally even with multiple mets, the largest of which was tangerine sized...

Sarah.x

geordiex
Member

Re: Liver mets - please join in

people with liver mets how are your LFT tests in particular alp do you ever ask the levels at all ? xx

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Re: Liver mets - please join in

powerjen hope your ct scan shows nothing
SPO I don't think I would qualify as my mets are mainly in the lung now
SP0
Member

Re: Liver mets - please join in

Hi gail5, sorry to hear taxol isn't working for you. Have you & your onc explored surgical options? It's rare for bc mets, as they tend to be numerous & spread throughout, but depending on the pattern there may be options. Another contact on here recently had RFA (radio frequency ablation) to stubborn liver mets that didn't respond to other treatments.
Good luck. Sarah
powerjen
Member

Re: Liver mets - please join in

Hi results are in ultrasound shows suspicious area for metastatic disease, now to get ct

lucinda
Member

Re: Liver mets - please join in

Chancer when I was dx with liver mets last December it came as a total shock, apart from the bone pain I had been feeling reasonably well. I felt tired but i have always suffered with fatigue. I think you should get it checked out but not send yourself mad imagining all sorts. I know that is easier to say than do. Do you have a bc nurse you can discuss it with ?
I really hope it turns out to be nothing more than a virus, but please do speak to someone in your team.

L xx

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Re: Liver mets - please join in

Hi Chancer I don't know how worried you should be but definitely get it checked.
My onc has been to see me and ct scan is showing increase in liver lesions. So looks like taxol isn't working. She doesn't think any chemo is going to work. She has suggested another hormonal called Megace. I think this on a nothing to lose basis.
Chancer
Member

Re: Liver mets - please join in

I'm new to this forum so firstly hello.
I've been experiencing consistent nausea, loss of appetite, tiredness and stomach bloating after eating for 10 days. I am two years exactly since initial diagnosis, chemo, lumpectomy, auxillary clearance in at least 4 nodes, radiotherapy and now 14 months on tamoxifen.
I saw a gp last week who said he thought it was a virus but as the symptoms aren't going away I'll have a blood test next week.
I am very worried given my symptoms! Plus I haven't seen my husband in over 5 weeks as he's working abroad, so I haven't told him yet how I've been feeling as he'll be panicking and I've been staying at my Mum's trying to hide how bad I feel as I don't want to worry her (my Dad died in April).
So any views on how worried I should or shouldn't be?
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Re: Liver mets - please join in

I have been admitted to hospital with shortness of breath. I've had a further 2 litres drained from the right lung. Apparently I had a bad reaction to the pain meds at the weekend and was having hallucinations. I've no memory of this happening but managed to seriously frighten my family. I had some sort of seizure and a scan looks like I may have scull mets. They've made a change to my pain meds to see if this will help.
geordiex
Member

Re: Liver mets - please join in

once my scalp is covered I wont wear anything on my head ,I had the equivalant to 11 weekly taxols but like you very weak ,L Glutamine is supposed to help neuropathy its an amino acid ,taken while having treatment seems to have helped some people ,my liver is where my mets are ,a couple of miniscule dots in lungs but he's not worried about them ,and taxol even though I didnt finish the regime gave me an iver 50% positive response which he was really pleased about .My ALP was 2000 at one point the highest it should be is 140 x

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Re: Liver mets - please join in

I was taken off it after treatment 5 in may legs also were extremely weak so much so I could not climb the stairs and suffered badly with lack of energy, really want my hands to return to normal and am worried its permenant now, are your secondaries in you liver only ? my hair also coming back with eyebrows and lashes fully in now, just waiting on some length on head before wig comes off. Xx
geordiex
Member

Re: Liver mets - please join in

on herceptin now my hands and feet not right yet ,my last taxol was 8 weeks ago,I fell over a few times had no control of my legs and nails arent good but on the plus side my hair is coming back x

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Re: Liver mets - please join in

You sound similar to me with both original and secondary diagnosis what treatment you on now?? Also I have neuropathy in my hands and feet and one of the main reasons I was taken off taxol as spilt tea down myself my glands are better but still not normal hate it. Xx
geordiex
Member

Re: Liver mets - please join in

march this year for secondaries x

geordiex
Member

Re: Liver mets - please join in

march for me too ,my primary was 2009 when I had FAC 3 weeks rads and 18 herceptin my nails are horrific and had really bad neuropathy kept falling over much better now ,although still not right by any means x