Member
Posts: 23
Registered: ‎05-03-2017

Re: Triple negative secondaries/ recurrences

[ Edited ]

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?"

Member
Posts: 28
Registered: ‎14-05-2016

Re: Triple negative secondaries/ recurrences

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

 

Member
Posts: 2
Registered: ‎12-07-2015

Re: Triple negative secondaries/ recurrences

Hi Tracy! I'm on that trial too. If you fancy having a partner in crime through this I'm here! Xxx
Member
Posts: 2
Registered: ‎01-05-2017

Re: Triple negative secondaries/ recurrences

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
Member
Posts: 47
Registered: ‎20-01-2016

Re: Triple negative secondaries/ recurrences

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

Member
Posts: 642
Registered: ‎03-09-2014

Re: Triple negative secondaries/ recurrences

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

Member
Posts: 167
Registered: ‎01-05-2012

Re: Triple negative secondaries/ recurrences

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

Community Champion
Posts: 3,294
Registered: ‎04-02-2016

Re: Triple negative secondaries/ recurrences

Bumping up for the new ladies!

 

also SaraMummy, how are things now?

 

Moijanxx

Community Champion
Posts: 3,294
Registered: ‎04-02-2016

Re: Triple negative secondaries/ recurrences

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

 

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

Member
Posts: 642
Registered: ‎03-09-2014

Re: Triple negative secondaries/ recurrences

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

Member
Posts: 47
Registered: ‎05-12-2013

Re: Triple negative secondaries/ recurrences

Just trying to find treatment and medical issue !
Member
Posts: 47
Registered: ‎05-12-2013

Re: Triple negative secondaries/ recurrences

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. 

Member
Posts: 642
Registered: ‎03-09-2014

Re: Triple negative secondaries/ recurrences

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

Member
Posts: 47
Registered: ‎05-12-2013

Re: Triple negative secondaries/ recurrences

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 

Member
Posts: 642
Registered: ‎03-09-2014

Re: Triple negative secondaries/ recurrences

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

Member
Posts: 524
Registered: ‎16-06-2014

Re: Triple negative secondaries/ recurrences

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

Member
Posts: 447
Registered: ‎01-05-2012

Re: Triple negative secondaries/ recurrences

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

 

 

Member
Posts: 167
Registered: ‎01-05-2012

Re: Triple negative secondaries/ recurrences

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

Member
Posts: 44
Registered: ‎01-05-2012

Re: Triple negative secondaries/ recurrences

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

Member
Posts: 524
Registered: ‎16-06-2014

Re: Triple negative secondaries/ recurrences

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