Thank you horsie, that makes me feel a little better. My ONC is going to arrange a PET/CT at the end of treatment to make sure they have stablised me then put me on another hormone treatment I think. This is the only scan they can compare previous ones with.
Many thanks.
Claire xx
I am just so sad hearing this as I remember my mom’s friend whom I visited last month. I can’t suggest anything for now but you will definitely have all my prayers. Don’t think those negative thoughts about your children. You will surpass this and witness their graduation until they get married and start their own family. We are all here to support you in spirit.
Dear all
I have extensive liver mets but respond well to chemotherapy have had 6 x FEC and 6 x Taxotere. The medical terminological term for the liver mets going to mush is called necrosis. I feel extremely lucky as it is over 2 years since my diagnosis of secondaries and have always felt well and never spent a day in bed, travelled extensively between chemos and worked until 5 months ago when I retired. I am oestrogen and progesterone positive so have taken hormonal tablets between chemos and have so far had Anastrazole, Letrozole and Exemestane but eventually have progression. I did have my mets biopsied on diagnosis and my positive hormonal status had reduced significantly since my initial diagnosis 5 years previously. Am awaiting recent scan results and have discussed Eribulin with my oncologist as my next option if as we expect there has been progression. My liver function tests are elevated which has usually been a good indication of progression. I often read the posts especially the liver mets thread and can only hope that everyone is as fortunate as I have been, pain free, with little or no side effects from chemotherapy. I know it is frightening and is certainly not a place anyone would choose to be but try to be positive and good luck with your treatment.
Love and hugs to you all.
Ann
Bumping for SCACO in the hope that some answers or at least questions to ask are contained within this thread.
I am seeing that radio frequency ablation, cyberknife, surgery and various chemo options are helping many.
Sending hugs and best wishes to all xx
Again for SCACO,
Do give the helpline here a ring if you wish, they’re here to support you.
Take care,
Jo, Facilitator
I have just been told I have liver mets. I already knew it had spread to axillary nodes and supraclavicular nodes and bones but this was the worst shock. I feel like the others. No idea what the future holds or how much there is of it.
I was diagnosed in August 2009 with lobular bc and had a WLE and SNB with clear nodes, then radiotherapy and Letrozole. Swollen nodes discovered November 2011 and so put on Tamoxifen and Pamidronate in January 2012. Recent CT scan showed axillary nodes stable but bone progression and new small areas in the liver, although liver function ok at present.
I am due to have weekly Epirubicin, not having had chemo before. Has anyone had this and what were the side effects like, compared to having it 3-weekly?
Any support and advice welcome.
Ann x
Hi all, I have justed found out that after 3 cycles of capcitabine there has been progression in my liver, I asked the docs how long and they have said 6-18 months which scared the living daylights out of me. Im going on GemCarbo and was wondering if anyone is having this treatment and give me an idea of what to expect
Debbie xx
Debcat,
I have just seen this and realise that no one has replied to you.
How are you?
I would have thought the prognosis was a bit harsh!! How are you getting on? Please do let us know/
Verity x
Hi all… I had been thinking, there are threads for bone mets, lung mets, should I start a new one for those of us with liver secondaries? (I have bone mets too) when I noticed this thread. I see it’s in the “Treatments and medical issues” section of the Secondaries forum, rather than “Living with secondary bc”, which could be why it gets forgotten about (by me anyway…)
Just wanted to say that when I was dx with liver mets, 3 years after my primary/bone mets dx, I knew there were further treatments that I could have, but I didn’t expect to be so “normal” 2-and-a-half years further on!
I hope this encourages some of you, and also don’t forget to look at the stories on the “A day in the life” page.
Hi Mrs Blue! We have met before. How are you doing?
I haven’t been on the forums for a while as I have been well and getting on with other stuff.
Hi to everyone else on this thread.
I was diagnosed with primary and secondary BC together, 5 years ago. i had chemo and have been on herceptin and tamoxifen ever since, and quite well. This year, though, I’ve had 2 recurrences in my liver. I’m just waiting to see if I can have RFA again. If not it’ll probably be a switch in regime to Capecitabine and Lapatinib.
It’s all pretty hard - although I’ve been living with the ‘what ifs’ and ‘whens’ all this time, it’s scary that the herceptin now seems to be failing me and I know the toolbox has a few more options, but not an infinite supply!
I hope my story gives some of you hope, though. I too never thought I’d see my youngest daughter go to secondary school (she’s now 14) or my son get married (Sept of this year).
Bless you
Jacquie
Hi all
I was diagnosed with secondaries in lungs and liver 5 years ago and they gave me a prognosis of 18 months - but here I am 5 years later, still going strong. Just goes to show that the progress of this disease and reaction to medication varies hugely from person to person, so don’t despair Debbie. I think 6 to 18 months is the standard prognosis for anyone with liver secondaries but it’s a purely mathematical construct based on average survival in the past - before some of the newer drugs and treatments became available. It isn’t necessarily true for you.
Despite the prognosis I have lived well and pain free for 5 years, seen my three children married, acquired 3 grandchildren, taken up my career again (until early retirement last year)
i’ve never had much luck with chemo - taxotere, taxol, capecitabine all had minimal effect but I had a really good response to aromatase inhibitors - 3 years on letrozole, 6 months on exemestane. I’ve had significant progression in my liver since I ran off the end of AI treatments but I’ve now started a brand new combo - everolimus + exemestane. The everolimus increases the effectiveness of the exemestane ( hopefully) so a second bite of the cherry for anyone who is a good subject for AI. It was only licenced about a month ago so I’ll start a new thread on this to keep people posted.
all the best
Barbara
Wow , I’m really pleased to here this Barbara , my sister has had recent progression in her liver. She is hopefully starting epirubicin. She is having a rough time at the moment and we can only pray that she will stabilise . It is great knowing there is another option. Have read all about it on the American site . I asked the oncologist and pharmacist at my hospital about everolumus but they said it is not available . Can I ask you what area you live . Please keep us posted and goodluck xxx
Hi Flo
i live nr Brighton but am being treated at the Marsden Where they have been running a trial on Everolimus and Exemestane. it is definitely generally available now though; it was licensed by NICE very recently - no more than 4 or 5 weeks ago so yr onc may have missed it unless he has a special interest. You may need to thump the table a bit! There are no guarantees of course but the encouraging thing about everolimus is that it seems to work even better on people who have already had endocrine therapy even if they later developed resistance.
Good luck! As I mentioned I am trying to post this as a new topic but I am having all sorts of trouble with this site
hi guys i would like to come and join you all i have secondaries in my liver from the start 5 yrs ago have been on herceptin for 4 years now and has re grown in the liver i was given three options more taxotere or the capecitabine tablets or a new drug trial thats not been licenced yet that gets added to the herceptin emtansine or T-DM1 HAS ANYONE ELSE HAD ANY EXPERIENCE WITH THIS NEW DRUG they say i deff wont get a placebo going for bone and brain scan next week
i really found comments especially about the capecitapine tablets helpful thankyou for sharing
pauline 44 yr old from edinburgh xx
Hi, I read about TDM1 in the breast cancer care magazine. I thought it sounded really exciting because it attaches chemo to herceptin and goes straight to the cancer cells. I have had three chemos out of seven deferred due to low white blood counts. It sounds like TDM1 might not cause this problem.
Hi Coldcapper
I have also recently started everolimus/exestemane and go to the RM at Sutton.I also live near Brighton.A few of us secondary ladies who live around Brighton meet up for lunch (when we can arrange it around treatments),there tends to be lots of food,moans and laughter…you are welcome to join us.I am back at the RM in 3 weeks time,when are you there…we may pass in the cooridor.
How are your se,s…mu ulcers are getting better,I have some some rashes and stared nose bleeds today.I do however generally feel well.My pain problem is arthritis at the moment.
L xx
Coldcapper, just want to underline what Lucinda has said about our little support group in west and east sussex, and hope you will join us. We meet up for the occasional lunch (which is usually a jolly affair), and more importantly we offer each other friendship and support at difficult times.
Lemongrove will pm you xxx
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me or the system gone mad !!