Secondary breast cancer that has mestastied to my liver and I am ER positive

[2catlady]

Hi,FMJ,I'm on letrozole and I haven't had side effects from it. I felt dreadful on tamoxifen,sickness,roaming rib pains,terrible hot flushes .But nothing on L. I have hot flushes and night sweats but that could be the zolodex injections putting me into menopause .
Helen xxxx

[FMJT60]

Thank you mrs blue, I've had six doses of tax and now letrozole. I've been having a melt down as I've convinced my self it's not working. I think it's because I felt so dreadful on tax and don't have any side effects with this. The mind is all powerful x

[mrsblue]

Quick answer, yes it can!  Letrozole was my first treatment, worked for me for almost 2 years, then tumour markers started creeping up... eventually those liver mets were found after a CT scan.  I won't give a list of all my treatments but I did very well on capecitabine, 2 years of this(2011 and 2012) then I asked to stop because of side effects.  I had eribulin chemo June-Oct 2013, then letrozole again.

[FMJT60]

A quick question mrs blue, I have secondaries in my liver,lungs and 3 vertebrae and this is my eighth week on letrozole. You said letrozole again in your post, can it be used more than once then ..

Jane

[elliedog]

Hi all. Not sure my input is much more help but I was also double whammy with liver mets (Feb 2013) so still a new comer to all this. I also had a similar conversation with my research nurse that if they get the right treatment liver mets can be knocked back or well controlled. I have been lucky enough so far to have knocked back mine with chemo, Herceptin and Pertizumab and my last scan showed NED in the liver and the research nurse said that they commented on how well the liver looked. So I am hoping I have found the right treatment from the beginning if not as everyone has said there is a whole collection of treatments to try yet. Take care everyone x

[2catlady]

Hi,mrs blue,so sorry about your ribs,VERY painful. I'm sending you a very gentle cyber hug xxxxx
Yes,I'd like it if it was private too a bit like the American ones where you have to be a member and have a button to click if you don't want your post shared to with the public.
Our own categories seemed to have died a death and nothing seems to be being done about that!! Surely the IT people can sort that in a day never mind nearly a month.
Take care and huge (gentle) hugs,Helen xxxx

[mrsblue]

Hi again all, glad I was able to help a bit... we "old hands" (I'm 64 btw) often stay on these forums to support if we can.

I don't post much about my own situation on BCC as it's a bit too public for me (anyone else think a private area for those of us with mets is a good idea?)  But I'm happy to accept those virtual hugs on here 🙂 I recently fractured some ribs, the oncs aren't too worried but it's really bad if I cough... and as for hugs... hubby is very patient with me, but he hears too many yelps and ouches at the moment!

I don't fancy the idea of a liver (or bone) biopsy, but it's an interesting point about receptor status changing.

[Anne4C]

Thanks to all of you who have responded and for the information - it is so helpful. We have both learned many things on this forum since this all started and this latest adds to that at a time when we really need it. Thanks for the info on cancer status - my partner is ER and PR+ but HER- and from what others had said on here, we were aware that HER status could change though how that works is a mystery to me. My partner has had several rounds of chemo now - two in the primary and two in since the mets were diagnosed, preceded by exemestane and then followed by e/e, who worked for more than a year, initially removing all signs of bone mets - another reason that this latest scan was a particular shock. Any more information would be good - particularly anyone who's in a similar category and has had this kind of range of chemos etc. But really any information is great - a big thank you again. 

[2catlady]

Hi,mrs blue,thank you, your post gives hope to the ones like me who have been on hear for a while too.
Huge hug,Helen xxxxx

[roxy12]

Thanks Mrs Blue, your message goes a long way to help me. I have just finished chemo for my liver/lung Mets and hope to be able to be treated with Arimidex soon. We will see, but sometimes as you say you have to try different treatments before you find the right one. Hope you remain stable for a very long time.

Love Sheila xx

[mrsblue]

Hi all.  I had the double whammy, primary bc + bone mets dx in 2006, ER+ PR+ Her-neg.  When I was dx with multiple liver mets in 2009 I was devastated... but my CNS ( = bcn) gave me hope, she said "we can get good control of liver secondaries IF we find the right treatment".  So here I am in 2014, having had 8 different treatments (some hormonal and some chemo, not all of them worked for me) and currently I am on letrozole again! since Oct last year, with stable disease. 

So I hope this encourages some of you who've had a more recent diagnosis.

[nicky08]

Hi Anne Kane so sorry to hear of you and your partners distress at this latest progression. Unfortunately it does strike us down like this and the new progression can come as a complete shock, as it did me! I was dx with bone mets in 2008 nearly five years after my primary. I had FEC chemo which worked well and then went on to hormone therapy as I was strongly ER and PR positive and HER negative. I then had further progression in the bones and to the liver in 2013. I chose to have a biopsy of the liver to see if my receptor status has changed. My oncologist was a bit gob smacked to find I was now HER positive, as well as still being ER and PR positive. I knew there was a possibility of this happening only because I had read about it on this forum. Therefore hormone therapy wouldn't work solely on its own any more. I was already on Capecitabine by the time the biopsy was done and, as it has kept me stable so far, I have remained on it. Due to other health reasons I have not been able to have Herceptin yet but expect to as these health issues have now been sorted. I think that having a biopsy is definitely worth having done for this very reason and, if receptor status has changed, then Herceptin could possibly be a treatment that now would be beneficial to your partner. Hopefully will find out more once you both have the results of this and then be able to continue with a different treatment plan. There have been ladies on this site who have lived with bone and liver mets for many years, way before many of the newer treatments became available.
Wishing you both good luck.
Nicky x
Btw although I don't have experience of cyber knife it seems it is not readily used or even available for secondary BC as a rule however RFA is a possible treatment for liver mets but I don't know of the exact criteria that has to be met for them to be treated.

[Sam_BCC]

HI ann_kane

As well as the support you will receive here you and your partner may find it helpful to give the BCC helpline a call on 0808 800 6000.  Here you can share your thoughts and concerns with someone who will offer you a listening ear as well as emotional support and practical information.  Lines will be open again at 9am on Tuesday and are usually available week days 9 to 5pm and Saturday 10 to 2pm.

Best wishes Sam, BCC Facilitator

[Anne4C]

Hi - I hope its ok, I'm posting as the partner of someone with metastatic bc. Initially diagnosed early 2009, treated with surgery, chemo, radiotherapy. Clear but returned in the bone in 2012, initial responses to chemo (taxol), capecitibine and (for longer) to e/e, but cancer has changed and developed resistance. Latest scan has shown e/e has stopped working and 2 new mets in liver (nothing in liver previously). This development has come as a huge shock. A biopsy of the liver is planned, with treatment to be discussed after that. However in initial discussion the onc has leaned against cyberknife (one of the few questions we could think to ask amidst the shock of the diagnosis - just yesterday) and is leaning in favour of immunotherapy and/or further chemo, but this to be discussed further. I/we would really appreciate any advice, information etc, sharing.

[lucinda]

Kimmy stable is good! I was dx with bc and spread to bones at the same time 5 years ago. Since then I have been dx with liver mets in December 2012. I was on letrozole for 18 months and it had held everything stable until the progression was dx. Since then I have been on capecitabine/denusamab and my latest scan results show bone mets stable and some improvement in the bone mets. I suffer more from my arthritis to be honest than I do the bc, it affects my mobility and the pain makes me a grumpy old lady at times, but geneally I feel well and able to get on with life.

I hope you stay stable, or show improvement, for a long time.

Lxx

[Kimmy1]

Hi Jacque, thanks for the reply. I have multiple spots of the liver and also have it in 2 ribs. Is that what you mean by flavour? Have had a couple of scan which all have come back as stable xx

[swanie]

Sorry Kimmy see you have liver mets - durrrr chemo brain....There are a lot out there with the same hope they get in touch.

Jacquix

[swanie]

Hi Kimmy

Like you I was diagnosed with my primary Jan 2007 and now have secondaries in my bones and lungs these were picked up July 2012.  I was put back on tamoxifen and bone strengtheners and have now graduated onto denosumab for the bones and capecitabine oral chemo.

You don't say what flavour of mets you have but you will find a lot of ladies with various combos who have been treated for many years and manage to get on with their lives.  It is all very scary because in a way there are no hard and fast rules usually one treatment is tried and when that fails there are others to move onto.

I am sure there is a letrozole themed thread on the go under 'treatments etc...' where you will get more support.

Wishing you good luck with it all it can be a dark journey but believe it or not there are still good times to be had.

Cheers Jacquix

[Jo_BCC]

Hi Kimmy1

Welcome to the Breast Cancer Care discussion forums, you've come to the right place for some good, honest support from the many informed users of this site.

You might find one of our regular services helpful, our Secondary Live Chat which runs every Tuesday evening between 8.30pm and 9.30pm, the session is hosted by a nurse and facilitated by a moderator so there's always someone to talk to.  I have put you the link below for you to have a look at.

http://www.breastcancercare.org.uk/community/chat

Take care,

Jo, Moderator

[Kimmy1]

Hi, I was diagnosed with secondary breast cancer on the 7th December 2013' I then started 18 weeks of chemo which finished in the May 2013, I then went onto leteozole which is so far working very well for me. I would like to hear from any other ladies who are in the same position as me, and how long have you had it.
It is a very scary time. I was only 10 days off of my all clear from my fist diagnosed which was in 2007 where had I grade 2 ductal beast cancer and had my breast removed. Look forward to hearing from someone.