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 I am trying to read through the old thread but information seems old and outdated.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
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
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
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
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.
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?
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:
breastcancercare.org.uk/secondaries
Take care
Lucy BCC
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
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
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
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
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
Thank you both and hope your son is doing ok Jo x
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
Congratulations Hilsy and Gillg, hope you both have a wonderful day.
Hugs Janette x x
Hi everyone I just wanted to thank you all for your lovely messages, today’s wedding was the best! Still awake high on adrenaline snd yes…bloody steroids for brain lung and liver mets that i took too late so no sleep tonight! I also want to hear how you are Gillg? How was your wedding and how is the pain etc. I di so hope it was a great day and you weren’t too poorly. I can’t believe I got through the whole day but my lungs really aren’t happy now but worth it (as long as they’re better tomorrow)!
Aw so pleased! I was thinking about you. Yup my body is now done in, we need to sleep for a week at least. And eat chocolate…Congrats!!! X
Hi Gill as the second bride I wanna reassure…day after my wedding I was in bed all day shattered, poorliest ive been, massive migraine…next day a bit better but coming down with chest infection again then yesterday real zapped weak and awful chest infection and today exhausted. We both planned weddings on adrenaline and feeling poorly erg and now the come down., really hope you feel happier soon after it all. Me too it’s done me in massively but I’m gonna chill a while to get energy back. Hugs x
Hi liz… sorry to hear your news but we’re all here if you need us…just rant away if you feel like it!
Try and keep positive…it does help even though its hard at times. We all know what you’re going through and will help if we can.
Sending love and hugs. …bev xxx
Well a week of resting I feel much better, physically and emotionally. Changed my diet this week also eating smaller low fat meals and liver pain certainly has died down.
I have had pain return in my spine and broken shoulder after having rads about 10 weeks ago, I am trying not to jump to conclusions that it means further spread and hoping that it actually means healing as some people have suggested.
3rd dose of docetaxel on Tuesday and then scans to find out what is happening next. It feels like a forever waiting game. Not really suffered any serious side effects with first 2 so fingers crossed…
Hope your rested now hilsy! And enjoying being a Mrs…