Liver mets - new thread

[Bevlaar]

Congratulations hilsy and gillg!! Hope you both have a wonderful wedding day pain free and lots of celebrating! Hope you get the problems sorted out with the liver but in the meantime just enjoy the big day!
Lots of love and hugz to you both 💖💖
Love bev xxxx

[pam01]

OMG 2 new brides this week...how exciting for you both!!!......Im really sorry that you both have liver worries though....Just to let you know you are both in my thoughts.....I really hope that you both have pain free days and are able to celebrate properly ............I know you both must be worried about things but how wonderful to celebrate your love in marriage. with love Pamxxx...we will want full details!!!!

[Hilsy]

Thank you both and hope your son is doing ok Jo x

[Mitch23]

hi hilsy

im a newbie and thought i would jump in on this subject. so sorry youre having these problems! with regard to the liver issue my son has primary schlerosing colangitis(hes 16) which basically means his bile ducts get blocked. when this happens the whites of his eyes yellow up and he has to have blood tests. i would suggest that you have this done just to check the function of your liver. peace of mind if nothing else.

best wishes

jo x

[bertie1]

Hi Gillg78 hope you have a fantastic day for your wedding and hope you won't be in too much pain.
Love
Kaye xx

[Hilsy]

Oh wow you're getting married Friday! So sorry about your liver and I do so hope your big day is lovely and you're not in too on pain or poorly, big hugs back miss....to be Mrs xxx

[Gillg78]

Hilsy, did your nurse not ask you to go for blood test. I get married on Friday and also have been having a lot of liver pain over the past couple of days and one of my glands has swollen into a lump. I have a very large tumour in my liver I can't offer advice but just wanted to send you a hug and like me I hope things settle before your big day. Xx

[Hilsy]

Hi all I have a long story but a basic question today. I know one place I have mets is my liver (plus lungs and quick return to brain after surgery and radiation) no symptoms re liver but this last week my eyes have quickly yellowed and my Macmillan nurse reckons tunour blocking bile duct. Though it could maybe due to the tykerb/lapatanib I started last week (and on 3rd cycle now of capecitebine). Any info on blocked bile duct? How emergency/like is it etc. I'm getting married in 3 days im so scared. And it prob means I can't have a glass of wine! Least of my worries I know. Any infor would've great please im devastated x

[Downbutnotout]

I've just posted this on the bone mets thread but thought it would be useful to mention it here as it's a great news story.

I had my chemo today and while I was there I got chatting to a lady who was there with her husband, who's having treatment for Pancreatic cancer. The lady herself had bowel cancer about 18 years ago and was given a 30% chance of survival at that time. 3 years later she found out it had spread to her liver. They removed part of her liver, her chemo was really tough back then, but she's still here - 15 years later and now in her 80s! Miracles do happen. Keep the faith.

I got a 2nd opinion after feeling my onc had written me off. Their advice was opposite to his and I've started treatment today and feel much better about things after months of worry. I'd say it's worth getting a second opinion, even if only to put your mind at rest that you're getting the most appropriate treatment.

Flo

X

[Gillg78]

Excellent positive post and just what I need to hear.. I need to stay focused and not fall into despair for everyone around me. I just don't want to fall at the first hurdle which given lack of positives and lets get started with fighting treatment I think was difficult at first. Today has been good, a bit more normal and little doom and gloom. Tomorrow I will start the day the same. Baby steps..fighting face on x all comments and invaluable advice always appreciated.

[busyanne]

Hi Gill, I have been following your progress as I am very concerned about the level of support you seem to be getting from medics particularly the very grim prognosis.  When I was initially diagnosed I was petrified of the outcome as I had lost my young sister and close childhood friend only eighteen months previously to breast cancer on the same day.  The whole BC team who supported me were very good at lifting my spirits.  Firstly no one can say for sure when anyone will die not even your oncologists.  What you do need is to know what your course of treatment is what drugs are available to you and how to access them.  There are a lot of very good targeted drugs available which although may not cure will keep you alive for a very long time and with a good quality of life.  How do I know this, well I met many woman during my treatment who had secondary diagnosis at the beginning over ten years  now and they are still living and bringing up their family.  Some are even working and have young family.  So there is light at the end of the tunnel. 

When I talk of my sister and friend what I ommitted to say was that they had been diagnosed as young woman and therefore lived a good life before recurrence.  Also when I reflect on their situation they had other medical issues which impacted on their treatment plan etc. We are all individuals and we all react differently to our treatment plans etc.

Please, please ensure that you have an advocate whether it be family or breast care nurse to support you at treatment and consultations.  Push for what you need to stay alive for your very young family.

I am thinking of you and hope for the very best outcome and I am sure it will be once your medical team get your treatment plan up and running and the medication starts to kick in.

Take care. Anne.

[belinda]

For Gill my favourite quote on stats from Musa Mayer's Secondary Breast Cancer book, hope you might find it helpful.
Many doctors are reluctant to quote mortality rates or statistics on survival time to patients, referring to tell them, rightly, that no one can know for sure how long a particular patient will live, and that mortality statistics are based on large groups, and are to be used to weigh decisions about treatment, not as predictors of individual life expectancy. They will explain that since you are an individual, there is simply no way to predict, with any certainty, whether you will be in the larger group that will succumb to breast cancer within the predicted period of time, or the smaller group that lives for many years with it as a chronic disease, or even survives to die of other causes. While initially frustrated, many patients are ultimately able to transform this uncertainty into an opportunity for hope.

[EJ81]

Thanks Jo

[Jo_BCC]

Hi Ladies,

I have put for you below the links to a couple of BCC's publications you might find helpful.

http://www2.breastcancercare.org.uk/publications/about-breast-cancer-care/support-people-living-seco...

http://www2.breastcancercare.org.uk/publications/secondary-breast-cancer/secondary-resource-pack-bcc...

Take care,

Jo, Moderator

[Louised75]

Hi Gill, we sound in a similar place. I got diagnosed with BC when 8m preg with my third back in Feb at age 38. 1st Sept liver mets confirmed and then today some areas of concern in spine and hips, the consultant said he only recommends bone strenghteners and not to change my current treatment (Avastin & Taxol). I transferred care to the Marsden after liver met diagnosis as I felt my old Onc was out of his depth. I had my first ever bone scan yesterday & my consultant told me about bone today, he was keen to explain that it doesn't mean that the treatment isn't working as it could have been there for a while. Like you I am more concerned about the liver. My head is still trying to process it all. Hope Tax works for you. Xx

[Gillg78]

Again thank you. I have liver, lung, spine, ribs, pelvis and a broken shoulder. All areas seem badly effected with the main tumour on my liver being over 7 cm and the areas in my back and shoulder being over 10 cm, my primary tumour in breast is 4.5cm and hasn't been detected even after 6 appointments with my midwives over concerns on breast feeding during 2 recent pregnancies..grrr my reading and advice from others seems to adhere to don't care about the size treatment can do wonders, I seem to be in little pain after radiotherpy which I can only take as a positve. I must say since this diagnosis I really don't feel like any health care experts know how to handle us. I seem to have visits from district nurses and BCN who seem to not really well Informed about living with secondaries instead of dying from them! I must say in my area I have found the care and support lacking of positive get up and go and more about oh poor you not long left that makes any sense! Awareness on this illness from all areas is severely lacking and terrifying during the first months of dx. A bit of a book apologies. Full steroids today after chemo yesterday and head is racing...

[EJ81]

I've just been catching up on this thread as I flit on and off the forum. Gill I think what your Onc has told you is awful - you have so many treatments still open to you! I know its really hard but try and stay positive. I had double whammy diagnosis too - only delayed enough that I'd had MX by the time the blip on my liver was confirmed as a secondary, which meant I had to wait before I could start chemo. I have a 2 year old too and believe it or not I envy you your baby as we had been trying and failing to get pregnant for a year when I got cancer instead!! 

It is so easy to let all the what ifs weigh you down but try and enjoy everything you can do, and keep yourself busy, the quiet times are when everything seems too much. Although that shouldn't be too hard with two small children and a wedding to organise! Thinking of you and sending you lots of positive thoughts xxx

[Gillg78]

Thank you ladies, I received the same feedback from a Facebook page which has helped immensely. I have asked both my onc and gp for a second referral letter as I can't bear to be treated by someone who I feel has written me off already before 3 cycles of chemo! A most distressing time, I feel like I have landed in an alien world and am just trying to learn everything that I can about this horrible infliction in a bid to keep hope and live my life in some sort of normality! Albeit a different one. Strong face back on after a wobbly period....

[2catlady]

Omg!gill ,I'm in shock with your onc!! How dare he say that ,he can't know!
God,I've got two large tumours in liver and multiple lung mets and nearly whole spine,pelvis and ribs and my onc has not told me I've got six months!! I've still got chemos I can try as only treatments I can have now ,but I plan to get to my 50th as I want a strictly come dancing party lol.
Knickers to your onc,you stay strong,huge hugs,Helen xxxxxx

[elliedog]

I'm in total agreement with SDP. Your onc can't possibly know how long you have.I was dx with liver mets from the start and I don't plan on going any where for a long time.My onc said the size of the cancer doesn't matter its how well you respond to treatment and there is no reason why you won't respond well. Good luck xx

[SDP]

Good grief - nobody can possibly tell you what your prognosis is.  Find the right treatment for you and we can go on for years and years on the one option. And then by then, hopefully there will be something else out there that will also work for you! It upsets me so much to think they aren't offering any hope. There is always hope. There are ladies that have gone 10 years just on the one treatment! xxx

[nicky08]

Hi Gill

I'm sorry to hear what your oncologist has said but there are so many cases of them being proved wrong I really hope you are one of them.  Sometimes a figure seems to be plcked out of the air and then just causes so many upsets for everyone.  When I was at my appointment this week the doctor said that there was a lady on the same treatment as we both are on that hadn't been very well at all but was now doing really well with a very good response, so there is hope you.  Also many ladies on here have had large tumours in their liver which have responded well to treatment so it's not always down to the size of the tumour that counts.  Wishing you good luck and apologies if this comes across a bit disjointed I'm on my 'coming off steroids zoned out day' which means I'm a bit befuddled!

Nicky x

[Gillg78]

Thank you Nicky, I have good days and bad days at the moment. A meeting with my onc advised that my organs where in fact more involved than they had previously had been telling me. I have a extremely large tumour in my liver which is over 7cm..horrific news.. They gave me a prognosis of 6 months which has just floored my whole family a i trying to stay positive and hope that my chemo can keep it at bay for longer than that. Advice from other ladies is don't believe in statistics and keep living. The wait until 3rd cycle is making me crazy but I am trying to get up, get dressed and do something every day. On a positive note the radiotherpy has helped my spine issues so mobility is improved. Just need chemo to prove my up positive onc wrong!

[nicky08]

Hi gill
Just wondering how you coping? Do get back in touch with us if you need support or any questions answered. Must be a very busy time right now as I think your wedding is very soon. Good luck with everything.
Nicky xx

[nicky08]

Hi Helen
Sorry to hear about your progression. I know what you must feel like as I had that same diagnosis last year after 5 years of 'just' bone mets. I'd say enjoy your holiday first 🙂 it will do you the power of good. I will send you a PM later and add in my contact details, although they are on the list that Jacqui sent us. Feel free to get in touch with any questions, as you say it's all a bit overwhelming. But I have learnt a few things that help with the Taxotere which I can pass on, I've just had number 3, so understand a bit more than I did.
Take care, will be in touch.
Nicky xx

[helen44]

Hi,
Just been looking at this thread as I have now got liver mets to add to the bone ones. Told on Wednesday. Good news is that the bone mets are stable so at least something appears to be working! Start on taxotere 4 Nov after holiday in Portugal. I am currently looking at wigs and finding it all rather overwhelming with the list of side effects. Thanks Nicky for your tip about the steroids before 2pm & hope you're doing ok at the moment - it was so nice to meet you back in August. Any other handy hints gratefully received as I am pretty worried.
Good luck to you all with your treatment.
Helen x

[pam01]

Hi Gillig...Ive been following this thread but havent posted because I have not had the same chemo as you...neither do I have liver mets(as far as I konw!) or such a  young family......however I have had experience with vertebral mets which i thought id share......

I was in my 40s when diagnosed with primary BC in 2005. er+ve, her-ve.

In dec 2010 I developed back pain when doing zumba....It only settled a little over a couple of months and so I had a bone scan followed by MRI and CT. It showed severe collapse of T4.(it only appears a couple of millimetres thick).....and displacement of spinal cord.

I had emergency radiotherapy for 5 days, started on a bone strengthener, and changed hormone treatments.

There were concerns as to whether my back was stable (but as my onc said no ones going to test it out for you!). I never had any problems with numbness or weakness in my legs, although some altered sensation in my back.

I swapped treatments to capecitabine after a year and have been on it since feb 2012.

My back is still stable and essentally pain free.......although I do have to be a bit careful with it and try not to lift or carry heavy weights...especially through my shoulders.

I really feel for you with the demmands of young children...but wanted to reassure you that there is hope that radiotherapy, chemo, can hold things stable.........best wishes Pamx

[Gillg78]

Thank you for all your priceless information! I must add that after only a couple of days on this site reading your messages had helped me through the night. Your knowledge and experience is so personal and I appreciate gravely you sharing your information in this manner..and mostly of all showing that you are continuing to lead lives with family...
Today I ordered my scarves and hats, tomorrow I have my wig fitting, I painted my nails black at advice from chemo nurse, I booked an appointment with my McMillan nurse to come with a physio and show me ways where I can lift and care for my monster 5 month old baby ( who wears 1 year old clothes!) that hopefully will do no more damage to my spine.. Today has been positive.

Thank you
X

[Lucy_BCC]

Hi Gillg78 amd welcome to the BCC forums where I am sure the support you have found here will be a big help to you

In addition, our helpliners are on hand with practical and emotional support so please feel free to call, lines are open during the week 9-5 and Sat 10-2 on 0808 800 6000

Here's a link to secondary information and further support ideas from BCC which I hope will be helpful to you:

https://www.breastcancercare.org.uk/secondaries

Take care
Lucy BCC

[nicky08]

Hi Gill

As you have been diagnosed with the 'double whammy' of primary and secondary BC at the same time I would imagine that your biopsy from the primary will be what your treatment is based on, therefore a second, liver biopsy wouldn't be needed.  Receptor status can, and does, change but usually over a period of time.  I have gone from HER2- 11 years ago with my primary, through 6 years ago with a local recurrence and bone mets to a change to HER+ last year when liver mets were diagnosed.  I am still ER and PR+ but I am glad that I asked for the liver biospy as if I had just received hormone treatment my liver mets would not have all responded.  I hope that when you start Taxotere you can cope OK, I have just had my second cycle (with added Herceptin and Perjeta) and am happy to answer any questions you may have.  You must be all over the place at the moment with young children, a recent diagnosis and a wedding!  Do ask us anything you want, someone will usually have experience of it.  As to liver surgery I expect they would like to see how the cancer responds to chemotherapy first, which can give very good results, and then consider either surgery or RFA (radio frequency ablation) rather than opt for a surgical treatment first.  Good luck with everything.

Nicky x

btw I have just re-read your post and see you started Tax yesterday. As a warning make sure you take your second dose of daily steroids before 2pm as you will be wide awake at all hours!  A tip I learnt when I had FEC 6 years ago.  Also, once the biopsy results are back they can add in Herceptin if you are HER+ and Tax is a very powerful chemo regime in its own right so I hope you get a very good response x

[Gillg78]

I should have said that I have great family support. I am the youngest of 4 girls. My sisters are excellent. 2 of them nurses. And with my wedding date only 4 weeks away we are trying to keep busy! All go in this household. Xxx

[Gillg78]

Good evening all, I started today on taxotere. And I got an I've of bone strengtheners also. The tumour in my breast is 4.4 cm which drove me insane as it's actually the third measurement that they have given me over the past two weeks. My bone scan results showed bad damage in my spine, some in my shoulder and pelvis. But my blood work was apparently good and my liver function fine. What I can't get my head around is why I am not having a liver biopsy? They opinion seems to be let's wait until three sessions of chemo and then we will see. I also don't have a result back and am awaiting to see if herceptin will be added to next chemo in 3 weeks time. Does this all seem standard treatment? Feel ok, tired and slightly emotional tonight but hopefully get some sleep tonight. X

[mrsblue]

Good advice from Helen's post below... yes the liver is amazing, it can recover surprisingly well when we have an effective treatment.

And Gill... I can't begin to imagine how you are coping with your very young children - I just hope that you have enough support in place, from family(?), friends, hospital, BCC (there is a helpline but it's not specifically for metastatic bc - though there are BCC resources for younger women and I'm sure you are in that category).  And Macmillan c support, maybe your GP if you have a good relationship with him/her already... there are also counselling options, sometimes free of charge, by people who are trained to support cancer patients.

Which chemo are they giving you?

[2catlady]

Hi,gill,your liver is huge and can continue working normal with mets. My blood results are great at the moment and liver working fine. Think even onc was surprised I'd had progression to liver and lungs as no symptoms!
Please don't look on internet ,you will scare yourself silly. You do go on a huge learning curve with C. Remember there are ladies on here that have a lot of advice to give and you will always get support and hugs.
Good luck with your chemo and go and kick Cs butt. Sending you massive hugs,Helen xxxxxxxx

[Gillg78]

Thank you ladies! It has been a crazy three weeks. After attending hospital for a sore back and shoulder I now have had a week of radiotherapy and start chemo tomorrow. I have two impossibly young babies, 5 months and 2 years old. I have spent the last 2 weeks terrifying myself with google searches and decided when I joined your group that this has to stop. The liver mets are terrifying me the most although I am unsure why as my spine bones mets are a serious fracture! I know little to nothing at the moment but plan to learn everything I can in regards to this and am glad I stumbled on your group. Thank you for your kind words and sharing your experience with mexxXx Gill

[mrsblue]

Hi all, I agree it's good to have a separate liver mets thread - I had "only" bone mets for 3 years then liver mets were found (that was in 2009 and I'm still around).  I don't follow the "bone mets" thread because I think we liver/bone ladies (some have lung mets too) have different issues from those who have "only" bone mets.  Not meaning to be exclusive but that's the reality as I see it.

I'm on capecitabine too - 2nd time around!  It was my wonder drug for 2 years, brought tumour markers well down, and I had a good quality of life except for hand/foot syndrome which is why I asked for a break, during which I've had another IV chemo (eribulin) and two hormonals.  Just finished cycle 3 of cape - tomorrow to oncs for scan results/bloods.

[2catlady]

Hi,gill,so sorry about your diagnosis . You will get lots of support from the lovely ladies on here. As Nicky has said we hang out on bone mets thread,so please jump in and ask us anything there's always someone to give you advice ,support or just hugs. I've got bone mets and recently had progression to liver and lungs. I'm on Cap chem the oral kind. I'm waiting to see if it's working,if not it will be IV chemo.
Huge hugs,Helen xxxxxx

[bertie1]

Hi gillg 78sorry to hear of your recent diagnosis but you will get a lot of support from the ladies on here.I too have mets to spine ,ribs and some nodes in chest and also more recently some small mets in spine.I am now on Capecitibine chemo and just about to finish my second cycle and haven't found it too bad apart from sore hands and feet.My cancer was oestrogen positive and I was on letrozole for just over two years and when that stopped working I was put on a clinical trial for exemestane and saracatinib but on the 12 week scan these mets in my liver showed up hence the chemo and also denosumab monthly for bones.Once you have a treatment plan in place you might start to feel a bit better and as isaid you will get plenty of support on here.

Take care
Kaye xx

[nicky08]

Hi
I will bump up the old Liver Mets thread as there has been some recent activity on it giving some updates on how various treatments are going which should help you get some idea of what is available. Although it is a very long, and quite old thread, it may be easier to read from the latest pages backwards. As is mentioned on the Bone Mets thread quite a few mets ladies post regularly on there as many of us have multiple mets whether they are bones, liver or lungs.
Please feel free to ask any questions about treatments, we all have a wealth of experiences (unfortunately) that may help as well as being able to offer support. Having a diagnosis of secondary BC is a very scary and lonely time, most of us have been able to find a coping mechanism once we have a treatment plan in place and the support on here definitely helps.
Good luck with your treatment and keep in touch.
Nicky x

[Gillg78]

A newly diagnosed secondary breast cancer mother with mets to spine, lungs and liver. I am trying to read through the old thread but information seems old and outdated. Perhaps some of you could update this new thread with experience....thanks