Member
Posts: 642
Registered: ‎03-09-2014

Re: Triple negative secondaries/ recurrences

Hi Sarah, sorry cant really help with your query....no one ever mentioned size when they told me i had pleural and bone mets and to be honest, i darent ask.

EJ...i know how you feel. I have been through the same treatments of you except vinorelbine and i have had weekly taxol which i dont think you mentioned, so that may be an option. Like you, i will try anything.

Please let me know how you get on and shout up[ if yo hear of any new treatements. xx

Member
Posts: 281
Registered: ‎01-05-2012

Re: Triple negative secondaries/ recurrences

hi , was recently told in May that I was stable after my ct scan . I recently went to GP about increased pain around lung area, had pleurodesis via vats last November, I asked if he had last ct report which he printed out for me. Reading the report I was shocked to see that it said there was an increase in size and number of pleural and lung mets largest being 10mm ( this was 6mm in feb 2016) also state I have a dominant metastasis in the left lung which I had never been told about.

I have contaced my oncologists secretary and asked for copies of previous scans. Also just had a ct scan and get the results on 5th sept.

Is is there a certain growth that is considered stable ? What size of met is considered large?
my GP felt that it was likely I would need chemo again. I finished gem/carbo in feb 2016.

any advice welcome
thanks x

Member
Posts: 524
Registered: ‎16-06-2014

Re: Triple negative secondaries/ recurrences

I am not responding well to anything right now!! Hoping to ask about non-chemo options like RFA and radiotherapy etc as have only had chemo so far. I started on EC (no joy), moved to abraxane and avastin which worked for a while until port problems forced a break, the had Gemcitabine and carboplatin (no joy), then eribulin (no joy), then Cape, which I thought was working as pain had gone but no joy and now keeping everything crossed for Vinorelbine!! Would be interested to know if any other tnbc people have had anything different that I might be able to ask for?! Hope the rest of you are having more luck on your treatments. Xxx
Member
Posts: 642
Registered: ‎03-09-2014

Re: Triple negative secondaries/ recurrences

Diane, we all understand your anxieties and are here for you. Please let us know how you get on.

Would be lovely to hear from all my TN friends...please let me know how you all are and any news on treatments, etc. Love to all. x

Member
Posts: 524
Registered: ‎16-06-2014

Re: Triple negative secondaries/ recurrences

hi Diane,
Sorry you have all these worries. I do find chemo brain is a big like baby brain! I forget stuff easily and struggle to find the right words even if I knew what I wax saying when I started talking!! Explain yourfears and family history to the bcn and push to see z consultant if you're not happy. Good luck xxx
Community Champion
Posts: 8,536
Registered: ‎26-10-2015

Re: Triple negative secondaries/ recurrences

Hiya Diane
Hello ..try not to worry too much but mention your fears to your breast care nurse and hopefully push for a mri scan just to put your mind at ease.
Every niggle we get ..always puts us into panic mode ...sometimes its nothing .
Xxx
Member
Posts: 5
Registered: ‎16-10-2015

Re: Triple negative secondaries/ recurrences

Had grade 3 triple neg invasive ductal cancer diagnosed Aug 2015. Lumpectomy & sentinel node biopsy, Tfec chemotherapy and bilateral mastectomy in April 2016.
First 3monthly follow up next week on 10th August and getting nervous. My mother died aged 33yrs from metastic breast cancer (breast, brain tumour, lung cancer)
My mum got the brain tumour with no warning just started with headaches... I am already on Topiramate for headaches which have been worse since chemo finished... How will I know if it's anything sinister? I've got word finding difficulties, clumsiness but I now learn they are side effects from my topiramate.
My follow up is with a breast care nurse, not surgeon or oncologist, what tests do people have done?
Petrified I will have a repeat of my mum reoccurrence
Member
Posts: 11
Registered: ‎16-09-2013

Re: Triple negative secondaries/ recurrences

I know what you mean Blanna, if only they could just do that xx I e always found if you need to rant there's someone on forum to give support and be a sounding board too xx

Member
Posts: 69
Registered: ‎15-04-2016

Re: Triple negative secondaries/ recurrences

Hi ladies,

I'm very much in the same situation as you all, I'm still coming to terms with it coming back and so fast. I sometimes just want them to open me up, sod the risk and just get them out. But I know that won't happen. 

XBlannaX 

Member
Posts: 11
Registered: ‎16-09-2013

Re: Triple negative secondaries/ recurrences

Thank you ladies, I've been fairly ok up to now, I think it's waiting for the scan and with one lot of treatment coming to a end, you sort of start thinking what's next.....perhaps that's just going to be enjoying life for a bit with some luck xx thank you your support means a lot xx

Member
Posts: 524
Registered: ‎16-06-2014

Re: Triple negative secondaries/ recurrences

Hi Jill,

Welcome aboard. I know tnbc feels like an extra kick to the shins to go along with an already devastating diagnosis but there are still a lot of treatments out there and I think we are sometimes more likely to get drugs fund drugs - I seem to have had a fair number! ! You'll find lots of support on here however you are feeling.

Ellie xxx

Member
Posts: 642
Registered: ‎03-09-2014

Re: Triple negative secondaries/ recurrences

Hi jill,

not sure i can be of much help but at least i can understand exactly how you feel about being triple negative. I started out in 2011 with ER+, PR+ HER2- invasive lobular cancer and after having evrything going, was diagnosed with sbc in 2014 (evetually after 5 months misdiagnosis). It ppaently then mutateed to tn (without me being told) which really shook me as i realised it wiped a lot of treatments of my plan. Since then i have pulmonary embolism, 2 pleural effusions and now also have mets in pleura/bones. I am currently on carboplatin (Onc said to try a single agent as both this and gem very toxic) but no one seems to be willing to talk about the next step. I know there are few options left for me but i just feel like its all so matter-of -fact...

I have been trying to get on to trials but no one will consider you if there are still treatments to try and i just worry that when that time comes i'll be too ill to go on it or there wont be a suitable trial.

As i said, i'm not much help in the positivity stakes but i'm alsways here for you to rant and rave at, have a cry or just offer a cyber -hug.

Best wishes.xx

Member
Posts: 11
Registered: ‎16-09-2013

Re: Triple negative secondaries/ recurrences

Hi Everyone,

I'm new to this thread! I was diagnosed with tnbc in July 2013, had 8 months of back to back treatments then and was fine for a further two years! In February of this year, I started feeling stitch type pain on my left side which was continuous ( had felt that intermittently in the same place a few weeks before diagnosis in 2013) a chest x-Ray showed a shadow in the bottom of the lung and CT showed it to be a 21mm mass! A PET scan showed that to be 28mm x 16mm and a further 4 areas ( 2 more in the same lung, one just outside and a node on the ligament between the liver and stomach). To cut a long story short I've been on Gem/Carbo since then and finished a few weeks ago. Mid point PET showed good response and now waiting for end of treatment scan then a break. Most of what I've read on tnbc with secondaries is quite bleak and in April my friend died who had the same disease as me! I really feel like I need to here some positive stories of people who have had the secondaries for quite some time and they're being controlled please. Don't get me wrong I'm not naive and I know what a horrible disease this can be, but just feel I need to here some positivity xx nice to find a thread of similar people xxx

Community Champion
Posts: 8,536
Registered: ‎26-10-2015

Re: Triple negative secondaries/ recurrences

I'm not tn but my oncologist said that priority is to tn patients now for any possible clinical trials as obviously not so many choices but more research being done than ever for you all .
Hopefully a magic bullet is out there very soon.
Xxxxx
Member
Posts: 642
Registered: ‎03-09-2014

Re: Triple negative secondaries/ recurrences

Thanks for that info Carolyn...thats the scariest thing for me going from er+ to TN and having several treatments wiped off the list, that there are very few options left. Lets hope they get going on this new thing very quickly.x

Community Champion
Posts: 8,536
Registered: ‎26-10-2015

Re: Triple negative secondaries/ recurrences

Hiya .just reading the daily mail today.page 20.scientists have made a break though in better treatments for triple negative bc it's called JQ1.
Obviously just dangling a carrot above noses at monent but something maybe in pipeline as soon as it can be verified .
Member
Posts: 44
Registered: ‎01-05-2012

Re: Triple negative secondaries/ recurrences

Hi sorry I haven't been on here for a while. Having a lot of building work done at home!  Yes it seems like we have been on a similar path!  I am still on Eribulin (since December) and it's working...fingers crossed it continues for a while. It makes me feel like I have no energy and feel out of sorts but I have recently had my dose decreased by 30% so it's a bit better. I don't know anything about immunotherapy so would be interested to hear if you find anything out. I have been referred for genetic testing, not sure if that is the same test you have had? Take care xx

Community Champion
Posts: 8,536
Registered: ‎26-10-2015

Re: Triple negative secondaries/ recurrences

Hiya Michelle and welcome
Scary time but until u get the scan etc you are in limbo really.
Please keep visiting here as you will find a wealth of experience, kindness and support.
U might like to join the private forum as we have lots going on there with gardening club and games etc.
It's all a focus away from the real world.
Hugs xx
Member
Posts: 1
Registered: ‎07-06-2016

Re: Triple negative secondaries/ recurrences

I'm new to this group. Diagnosed in 2013 with TNBC. Survivor now. I do have a concern because a mamo showed a non specific lymph node and I am waiting on insurance to approve an MRI. It's taking a while and it's very nerve racking. I don't know what a non specific lymph node means and I also have had a bump on the back of my neck for a while. I'm just starting to freak it and become a head case when I have always had a very positive attitude and I don't worry about things until it's confirmed. I just can't shake this horrible feeling esp since I'm still within 5 years of diagnosis. Help!! lol!
Member
Posts: 642
Registered: ‎03-09-2014

Re: Triple negative secondaries/ recurrences

Spudgirl, just wanted to reiterate everything everyone has said. We are sorry you have had to join us but hope you will find this forum helpful...even if its to have a rant and a scream. We are all with you on the daughter front....we would all do anything not to put our children through this. Dont be hard an yourself and try to rest p whenever possible.Good luck with the move and let us know when you are settled and have atreatment plan. xx