Triple negative secondaries/ recurrences

[Moomin]

Hi Ladies,

Diagnosed March 2017 with TNBC.

Had FEC-T Chemo but on 4th cycle had local spread so Carbo was added in.

Had Mastectomy Sept 2017.

15 rads November 2017.

Risk Reducing mastectomy Feb 2018.

Routine oncology appointment resulted in a CT, MRI's to my brain, neck, spine, liver.

April 2018 diagnosed stage 4 with mets to liver, spine and lungs.

Done 3 cycles of Capecitabine.

CT scan last week shows lungs and spine stabiliased but a new lesion has appeared in my liver.

Tomorrow i start Halaven/Eribulen.

Looking for positive reports on this chemo drug, especially for the liver.

Thank you x   

[Moijan]

Hi hellyhead....what was the outcome? Have heard good things about pembrollyzumab, but not tn myself.very best wishes for you.

moijan🙏Xx

[Moijan]

Hi Jilly, Just wanted to mention that each time a chemo has failed me....it’s been after a break, the bc changes it’s dna and then becomes resistant to the drug, I was doing fine on Cape until I took two weeks off to address my cellulitis.....honestly I’d try not to take breaks......canceracts like a virus and becomes resistant.

’’’best wishes for you tho, love and hugs.  

I know others have taken breaks and will disagree with me...but it has happened three times to me so far...,so something to think about....I wanted a weeks break this time on Paclitaxel but onc was reluctant...said he’d rather lower the dose if need be,

ps your private messaging hasn’t been activated yet....speak to the moderators xx

Moijanx

[withasmile]

hi everyone

I thought I'd come and join you all...I'm back on Eribulin next week after a 14 month chemo 'holiday'.

I have triple neg secondary BC which has chosen para-aortic lymph nodes this time round.

Yes, our treatments are quite different to the oe pos ladies.

My cancer has changed back and forth over the years from oe neg to pos and then back to neg, so I've pretty much tried most drugs, and now I'm hoping Erib will work again.

Its nice to have support here,

kindest wishes

x

[marleypop]

I’ve dropped you a PM Lainy xxx

[Lainy]

I am so sorry to hear this, I have just finished treatment for triple negative breast cancer and I am so scared!

I feel like I am alone now and just have to get on with it while others get to take Tomoxifen or Herceptine to cover them

How did you find out that you had cancer cells in your chest bone?

xx

[marleypop]

Hello ladies, never thought I’d be here again.. I had TNBC grade 3 in 2013...thought I’d cracked it. Just been told that cancer cells have been found to my chest bone. The nurse told me that this was treatable and I would have to take bone strengthening tablets. Have my appointment today to find out all the details.
I’ve had a read through of the messages, not all mind as there is ‘loads’ but it’s been real helpful as to what to expect and given me ideas as to what I need to ask. Amazing how you can read at 2am onwards. Nerves are definitely getting the better of me x will compare my treatment notes once I know...be grateful for any advice 💕xx Teresa xx

[marleypop]

Hello ladies, never thought I’d be here again.. I had TNBC grade 3 in 2013...thought I’d cracked it. Just been told that cancer cells have been found to my chest bone. The nurse told me that this was treatable and I would have to take bone strengthening tablets. Have my appointment today to find out all the details.
I’ve had a read through of the messages, not all mind as there is ‘loads’ but it’s been real helpful as to what to expect and given me ideas as to what I need to ask. Amazing how you can read at 2am onwards. Nerves are definitely getting the better of me x will compare my treatment notes once I know...be grateful for any advice 💕xx

[JillyJames]

Thanks Annie, it's nice to get a reply, do you have triple negative bc too and if so how long have you had secondaries. Hope you don't mind me asking it's just that there doesn't seem to be that much activity on this board for triple neg ladies. I picked up my cape this morning so back on it tonight, just hope it works again. What treatment are you on for lung mets? Thanks for the hug - much appreciated. 

[Anniej]

Hi Jilly, sending a big hug. You must be feeling a bit low, but if the medics can hold it at bay once then I'm sure there are more tricks in their goody bags to help you. I've got lung mets and my Onco said just that. Science is moving so rapidly that us secondary girls have got good fighting chances now. Thinking of you. X 🍀💐🍷

[JillyJames]

Hello, this is my first posting on the sbc forum so hope I'm doing it right. I'm feeling a big low today after my trip to see onc. I was diagnosed with metastatic tnbc in Feb 2016, with extensive spinal mets.  I've been on capecitabane since Dec 2016 and have seen my tumour markers steadily falling. However just had a 7 week chemo break to go on holiday and cea marker has gone back up from 9 to 37. Got to have a ct scan to see what's going on. Feeling rather deflated.

[Marie14]

Hi hellyhead,

Just wanted to see how you are?

Xx

[hellyhead]

Well, have been browsing this thread and realised that it has only recently been resurrected from last year and there have only been 4 posts this year  so not very busy but here goes anyway...

Movetothecountry, hello, I wonder what you decided to do? 

I am meeting a trial researcher in Glasgow on Thurs to discuss entry to a trial as my first line of treatment for TN recurrence in a chest lymph node and lung. Exactly the same as you, it is delaying start of standard chemo which would be carboplatin and I could have been on it already.The trlal is for Pembrolizumab, which hasn't been approved for breast cancer yet but is used for lung cancer and melanoma. My tumour has been compressing my main vein to the heart, and I had a stent put in on Weds last week to protect the vein to give me time for any drug treatment to start working. I had 5 shots of radiotherapy to the tumour in June which helped for a few weeks but then the vein obstruction symptoms recurred hence the stent insertion. I'm pretty alarmed that I had this tumour diagnosed in June (although it's been there a lot longer!) and am still waiting to start any chemo/drug treatment - and worried by the length of time a trial drug might take to give me any tumour shrinkage - if it does at all! But of course there is no guarantee that the carboplatin or anything else will work either and the oncologist's feeling is that if I run through several chemos first then I might well be too ill or my disease too advanced for the trial, so they are recommending I give the trial a shot first. 

It's a really tricky one tho isn't it. The questions I want the answers to are whether the trial drug will give me longer survival and better quality of life than normal chemo.... but no one can answer that I guess and statistics are dangerous things! I hadn't heard of your trial drug Olaparib. I haven't as far as know been tested for the BRCA mutation. 

Be interesting to hear from anyone else in trials for TNBC or facing these choices.

All the best, Helen 

[Movetothecountry]

Am i standing looking a gift horse in the mouth?

I'm having to choose between a trial Olaparib with AZD6738 or treatment with Eribulin

It's the wait to join the trial that again leaves me in limbo, one you can start nearly straight away the other you must wait ....

Oh what to do and why can't we ask a Dr "what would you do if it were you?"

[Arnie]

Hi all, jumping into this thread as I think it seems quite active. I have been diagnosed with TNBC again. 2014, 2016 now 4 months after gem/carbo and Mascetomy. It is localised they think and I am having that long wait for surgery appointment. They want to remove my chest skin and replace with stomach skin. Whilst waiting I fee l it growing. Not sure what will happen next as they have to do a histology report. I am in a mess. Trying to hold it together but often can't. I am angry as I eat healthy, don't drink and do lots of walking. 

Anyone had this surgery? Not sure if it will work as lots of discussions about what should come first treatment or surgery but at moment in discomfort, scared and feel lonely when daughter is at school and husband at work. He holds onto hope still but mine sadly is fading! 

Anyone had this surgery and can talk me through it? 

Arnie x

[Tech-teach]

Hi Tracy! I'm on that trial too. If you fancy having a partner in crime through this I'm here! Xxx

[Tracyar67]

Gosh that's a lot of treatments with no response. I started on chemo (nab paclitaxel), along side either atezolizumab (Immunotherapy) or placebo in February on a clinical trial called the impassion study and the early scan looked very promising reducing all mets by at least 50% and 1 lung met completely disappearing. I wish you the best of luck in finding a treatment for you that starts working and quickly
Hugs
Tracy

[CatherineJ]

Hi Downbutnotout, we spoke earlier in the year and unfortunately I'm back on here - can you tell me how to PM you please?

[stresshead]

Hi Spudgirl, sorry to hear your news...always seems to be that they give good news with one hand and take it away with the other!!

I was fine on the carboplatin and it did seem to help with the lung fluid. It sounds s if yours isnt bad enough to warrant chest drain and pleurodesis??? As i had these i dont know whether my lungs got better throough this or the chemo. I do still have some fluid but it isnt causing me problems ...i hope it stays that way. I do get a little breatlkess at times and some pain when i am in bed. I was told thiogh that my lung capacity would always be reduced. I was tired of course with the carbo but no real side effects. I hae been ok dring the chemo break...so far i have had no progression or so i'm told. I have been having neck/skull pain so that was included in my last ct scan and it did show some deposits but not whether they were new or had always been there. A recent mri showed i have collapsed discs in my neck but apparently not cancer related???

I have certainly had more stamina and energy since being off chemo. I'm sure you'll be fine on carbo and that it will do the trick. Please keep in touch. xx

Sarahmummy....please post and let us know how things are going. xx

[Spudgirl]

Stresshead - I saw my Onc on Monday and my latest CT scan shows some of my mets have shrunk but my lung ones are progressive.  He has therefore stopped Docetaxel and I am moving on to Carboplatin.  One of the complications is that I have had fluid on my lung since about July and it seems it contributed to my  problems after every chemo which landed me in hospital every time.

What was your experience of Carboplatin?   I'm hoping it will help with the fluid as well as reduce my lung mets!  Were side effects similar to Docetaxel?

How are you getting on now you're having a chemo break ? 

xx

[Moijan]

Bumping up for the new ladies!

also SaraMummy, how are things now?

Moijanxx

[Moijan]

Hi Saramummy, as promised, I have pmd you about sonething entirely different.

however, I hope you find all you are looking for, zmoijanxx

[stresshead]

Sarahmummy, did you find the treatments thread?

I forgot to mention that my skin mets are extensive..breast, abdomen, back and i had electrochemotherapy in march which seems to have helped. Marierose has also had it. Look back on previos posts or if that takes to long and you ae interested send me a private message and i'll tell you what i can, rather than repeating it all agin on the forum. XX

[Sarahmummy]

Just trying to find treatment and medical issue !

[Sarahmummy]

Thank you stress head X it makes me feel less of a weirdo as skin is widespread and I pray it doesn't fungate. Good to hear you had no progression, which chemo worked for you? Will look at skin meds. Keen to know if there is anything I can put on it to help xx great to hear from you thsnkyou. 

[stresshead]

Sarahmummy..please 'dip' in anytime, yo are very welcome. You sound like you are in a very similar sitation to me. My SBC came back as skin mets which then spread to the pleura in my lungs and spine and pelvis. On top of this i have had a pulmonary embolism and 2 pleural effusions/pleurodeses. I had docetaxol/capecitibine, eribulin, weekly taxol and carboplatin. My last scan showed no progression. Am now on a chemo break and just having denosumab for bones. I coped pretty well with weekly taxol..no hair loss, little nausea. Was very tired but as you said after having all those chemo's its not surprising. I'm sure you will be fine with it. We have a good thread under Treatments and Medical Issues especially for skin mets..feel free to have a look and/or post on there. Please try not to worry too much about the taxol..it could be the one that works for you. We will be 'holding your hand' all the way. Please ley us know how you get on, xx

[Sarahmummy]

Hello ladies, I hope you don't mind me dipping in on your thread. I have tn secondary in thyroid, lung ,chest,armpits and skin. I have had through two ops everything removed last sept but it came back in scar skin and now secondary. I have tried gem carbo, capecitabone, carboplatin, eribulin ..,no joy. Just found out last week eribulin not worked so I have had had since Feb at Royal marsden two lots of gruelling chemo that hadn't worked. Largest tumour is over 6 cm. Lots visible in skin. I am devastated....nothing is working. They gave offered me now weekly taxol.....just not sure I feel strong enough ....any experience in the group of it weekly and side effect? I need to go back to work soon and have little kids so I am not saying I don't want to fight, very down and I am due taxol Friday....dreading it . Any advice/views very very welcome as I do feel after 3 years now that maybe my time is up xxxx 

[stresshead]

Spudgirl, EJ, Helen...oh how we suffer. I think our children are our reason for living and thats why its so hard for us to deal with this god awful disease, not for us but because of them. My daughter isnt so young but its no easier. When i was first diagnosed she was 19 and when i told her the first thing she said was 'are you going to die?'  i replied 'not if i can help it'. i have never told her a lie and i wasnt about to start. Of course, we are all experts in 'softening the truth' !!  Four and a half years down the line its talk about weddings and baies and it breaks my heart to know that i'm not likely to be around. i dont know if she truly doesnt get it or she is trying to forget it and 'gee' me along...i feel its the latter.

I have also had several chemo's so EJ if you dont want to list them on here i would love it if you could pm me so we can compare. I was er+ and thoughtni had loads of treatments to go at but i then changed to TN and had them wiped away. I dont know whats worse, being TN from the start so knowing where you stand or changing and having the wrench of lots of treatments being taken from you.

It does seem that there are fewer options for us but srely this should put research into TN treatments to the fore??

Lets just keep hoping that our treatments keep s going til more come along....and we'll keep trying to help each other get there. xx

[EJ81]

Oh Spudgirl and Helen it is so hard isn't it?!

My boy is my greatest joy but thinking of leaving him is the thing that tears me apart the most. He is too young to really understand anything right now. My biggest concern is that if I go too soon he won't remember all the fun things we've done as he is only 4. We take loads of photos. Even if I look awful for them as I want him to know I was there!

Spudgirl I am triple negative and on my sixth chemo. One or two previous ones were from the drugs fund so it's always worth asking. I can pm you the list if you like!

I hope the current one kicks a*s!

Xxx

[HelenAquarius]

Hi Spudgirl, I'm totally where you are in this. Also have a 12 year old daughter and we have conversations that are similar.. Will you be at my wedding..? Will we know when you are about to die? I don't want you to die.. And tears of course.

It's the most heartbreaking thing and I can barely endure it... I want to be there to help her when she starts her periods, has boyfriend troubles, etc etc.  I'm trying to set her up with some nice and funny thoughts about me, like how when I'm gone, she'll hear me sniggering when she drops stuff, as we are both really clumsy, and looking at the stars and I've said one day I'll be a star up there for you to look at and talk to and she's chosen which one it will be... 

I think it is really good to let them cry and to cry with them too... Nothing to be ashamed of.. Tears of sadness are healthy, and then to try and do something funny and lighten it up again. We are able to joke about it too at the right times.

It's the hardest thing in the world.

xxxxx

[Spudgirl]

Hi there,

 I found out I have TN secondaries at the end of May.  There have been lots of complications with starting treatment, but I had my second chemo yesterday.  

 I had a bit of a rough night last night.  My 12 year old daughter asked if I would die of old age or die of cancer.  I told her that I would get more poorly with cancer but I would try to stay alive as long as possible,

  She said she wants me to stay alive through her teens and got really upset, it was just awful, and all I could think of saying was that we just need to be happy and do lots of great things as a family for as long as we can.

If I go  with Onc's prognosis, it is unlikely I'll see the end of her teens which is heartbreaking for me too.

He told me there are 3 or 4 treatment options for me, which seems very low.  Is that really all there is for TN Mets?

 I am having Docetaxel at the mo, 6 rounds.  I am guessing if it works I'll have a break from chemo until the mets start to appear again.  Could that be weeks / months / years?  

I'm just not dealing with this well today.  No child should have to be worrying about these things. 

Thanks for listening . 

xxx

[kittycat40]

Hi Mariposa how are you getting on?  The Eribulin has stopped working for me now but I was on it for 10 months. I am having vinorelbine & carboplatin now xx

[EJ81]

Hi Sarah,
I'm sorry I'm afraid I can't help as I don't have copies of any of my reports and I don't get told about size of mets either. It might be worth popping this question on another thread that gets more traffic?.
Stresshead I had Paclitaxol with avastin. Abraxane is the same thing in a different solution as I had a bad reaction to the original. I couldn't start back on it due to progression after a couple of months break. It hadn't worked as well as they hoped and even then it made me very poorly. Thank you for thinking of me though xxx

[stresshead]

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

[sarah66]

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

[EJ81]

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

[stresshead]

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

[EJ81]

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

[Carolyn52]

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

[diane123]

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

[Jill1969]

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

[Blanna]

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 

[Jill1969]

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

[EJ81]

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

[stresshead]

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

[Jill1969]

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

[Carolyn52]

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

[stresshead]

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

[Carolyn52]

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 .

[kittycat40]

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