Triple neg secondaries liver & lung

HHi was dx with my primary lm march 2012, had fec-t, mx and rads. Finished rads nov12 thought great get on with life. Then in march 2013 almost a year to the day find out I have liver and lung mets, I have had carboplatin and gemzar which didn’t really shrink anything, now I’m on paxitaxtol and Avastin.
just would like to hear from anyone in a similar position who has had a few years under their belt of living with secondary triple neg. I read a lot of inspirational posts from ladies who are doing really well and far few years down the line, but most seem to be on herception, which obviously I won’t be having.

Hi Chattykatty

Whilst you wait for the other users to reply with there experiences do give the BCC helpline a call and talk things through with a trained member of staff. Here you can share your concnerns with someone who will offer you a listening ear as well as emotional support and practical information. The number to call is 0808 800 6000 and the lines are open Monday to Friday 9 to 5pm and Saturday 10 to 2pm.

Best wishes Sam, BCC Facilitator

Hi Chatty Katty,
Like you i was dx july 2012 fec t mx rads all finished end of march 2013. Almost a year later after a irrating cough which both the doc and onc dudnt think was anything to worry about i had a lung xray which shiwed several nodes hanging around bottom of right lung, same side as bc. Now waitng for bone scan ct scan n blood results, get results on friday. Im petrified as the fec t didnt have any effect on my tumour it just stayed the same size. Since finding the nodes my cough seems to have got worse and my legs ache. Lollie54

I haven’t posted on here before so not sure it’s the right place! Initial diagnosis in April 2007, triple neg, just had lumpectomy and radiation. 3 yrs later diagnosed with bone mets started on Zometa and calcium & vit D. then April 2012 diagnosed with small lung mets and tiny liver met. Treated with tax and fec. finished chemo in dec 12. CT scan in January showed reduction in lung mets and no liver mets, scan in April 13 was even more positive. However scan last week showed although bone and lung mets stable, 2 liver mets had grown to nearly 2cm each one. So shocked as I feel better than ever. Devastated Even though oncologist was not overly concerned! he has decided to start Xeloda oral tablets. Due to start on aug 12th. So sad and scared . Just looking for a bit of positive support really And any advice. Have just increasemy work to 4 days a week so unsure what to do now? many thanks x

Ruthy im not in your situation but just wanted to send you a hug.

with respect to your why not wait and see how you get on with new chemo… I know some folk are totally fine but some are wiped out.

there used to be a tnbc secondaries thread which was very active but after a few problems on this site a lot of ladies moved away from bcc to facebook… If any secondaries ladies want to join our facebook group please let mr know… Although i am not a genuine secondaries lady as my regional recurrence was to nodes and muscle in chest wall and was operable.

ill maybe try and find our old thread and bump it for the new ladies x

Hi ladies here is a link to the thread i mentioned in my last post…

Thanks for your kind words much appreciated. I’ll let you know how it goes x do you know how you find ladies on here from your area? This is all new to me! X also how do you join your fb page? Is it confidential as not all my family know about my secondary diagnosis,my choice, right or wrong I don’t know?!! X

Hi chatty cathy I have posted below with my history. Sending lots of love to you. I’m really struggling with my latest diagnosis. Such a horrid unpredictable illness. Finding it hard tobe positive at the moment x let me know how you are getting on x

I have posted below with my history. Sending lots of love to you. I’m really struggling with my latest diagnosis. Such a horrid unpredictable illness. Finding it hard tobe positive at the moment x let me know how you are getting on x

Hi ruthy

the fb group is secret and by invite only for ladies with mets… All type of BC and all types of mets on all types of treatments at all stages from diagnosis.

only people in the group can read or post messages and nothing appears on your wall.

<<<<<<<<<<< there is sections called ‘secondaries: meet ups’ in the menu at the side… Edited to insert link… Search Results | Breast Cancer Now

you try posting in that to see if theres a group in your area… Also there is a secindaries group chat which is facilitated by one of the bcc nurses… Think its tues and/or thurs… Unforunately doesnt work on ipads and not sure about other tablets… But you can access it from a pc or laptop… Ill check times and post. Bcc also have secondaries groups in varying places in the uk every couple of months… Think theres one in Edin, and one in Glw so probably others across the country.

also you can phone the helpline free of charge from bt landline 0808 800 6000.

take care x

Thanks lulu
can I join ur face book page please, how do I go about it? I just didn’t want it advertised on my fb page etc. it’s so good to get support from people who uunderstand
thanks again,much love x x

Hi ruthy

sorry thought id already replied…
if you click on my profile you can see the link for my fb page… If you add me as a friend i can add you to the group.

after iv added you to the group if youd rather not have any bc ladies on your friends list please feel free to delete me xxx

I’d like to join the Facebook group