METASTATIC TNBC

Hi 2Belts,

Sorry all this is happening to you. It's a bit of a whirlwind at the beginning.

I checked your previous post and you said that you were ER positive. Has this changed with further biopsies? What site were the original receptor checks done on, and which site for any new biopsies?

The treatments are different for the different types. If you have ER+ disease, there are all the therapies that target the hormone receptors. If it is TNBC, then Chemotherapy tends to be quite effective.

Did you get your HER2 result? There is a promising drug for HER2low disease, though not yet available for this indication on the NHS.

As you say PDL-1 results could also offer an immunotherapy option.

My wife was initially diagnosed in 2019, stage 4 in 2020, and is currently chatting to a friend on the phone. It's not curable...yet. New treatments are coming out all the time, and in the meanwhile there are lots of drugs to help keep it at bay.

Best of luck to you.

Cheers,

Andy

Hi BoobyCancer

Thank you for your reply.

My first biopsy's in the axillary confirmed ER+ but only slight at 3, PR- & HER-

I then went onto have scans etc and then two additional biopsies in the breast and supraclavicular area and they confirmed TNBC there are no hormone receptor values at all. So the oncologist is going with the TNBC type.

I hope your wife is doing well and its great news to hear :) she's running up that phone bill :) x

All I hope for is some more time with my family as they are really struggling it hasn't hit me yet...I think it will once treatment starts. I am a stubborn species and will fight this for as long as I can.

Thank you again for your response x

Once treatment starts, and you hopefully start seeing positive results on scans, hopefully you and your family will feel a little more settled. It's treatable, it's just a bit of a weird new life.

Worth mentioning that receptor status isn't set in stone. My wife was ER+ HER2-, then TNBC, then ER+ HERlow as the years have passed. I guess that's just the cancer continuing to mutate, for better or for worse.

Stay stubborn; it's probably your best friend facing this challenge!

Hi 2Belts - sorry to hear your mTNBC news. I'm in a similar boat to you - original was ERpositive but my secondary (9 years later) is TNBC - already spread to spine, ribs, skull, liver, pleura and some lymph nodes. My full history is in my profile (click on my username).
I was diagnosed at the end of April 2024 and have just completed my second cycle of Gemcitabine + Carboplatin intravenous chemotherapy. I'm hoping that this is starting to work as my back pain seems to be decreasing, and the pleural fluid that was around my lung is decreasing too.
There are a few of us mTNBCs that have been posting on another thread :

community.macmillan.org.uk/.../what-tests-and-scans-used-to-diagnose-breast-cancer-mets

Ochno and I have the same diagnosis and treatment (both Gem-Carbo, but no PDL-1 receptors).
Coddfish and Flamingo_flyer are on different types of chemo.
You're lucky to get a port rather than a PICC as they sound like a lot less hassle - I tried to get one but don't think the NHS will approve it.
Hope you get a treatment plan soon and that it works well for you.

I'm very sorry to hear this. Are you in pain ? How you feeling? I'm not having chemo tabs or hormone tabs lm frightened of the side effects.   Mets  spine ( very painful ( ribs and sternum. How did you know it was in your skull ? I wish you well. 

Xxxxx️

Hi 2Belts 

Sorry you find yourself here. My TNBC is PD-L1 positive and I was treated with Pembrolizumab plus NAB-Paclitaxel when I was found to be metastatic (liver mets). Although I had to stop treatment after a few months because of a major immunotherapy related adverse event, it did enough, with the help of an ablation procedure, to put me in remission. 

Hi, I was diagnosed in January 2024 after countless appointments and being told it was an abscess Once I had scans and biopsies I was told I had TNBC which were in lymph nodes and 12 mm deposit in the liver. I had four cycles ofl immunotherapy Pembrolizumab combined with NAB-Paclitaxel, at my 3 month scan the liver had shrank to 5mm. However my breast was not responding as quickly. I was then took off treatment as I had a infection. It was decided then to give me a mastectomy with full nodes removed, I had this on 27th of June. I am back on treatment starting this Tuesday pluss a CT and Mri scan this week. So they can decide what happens next. I have my good days and bad, scans I hate and the waiting scanxity I call it. I'm 49 with two daughters and a husband who has been absolutely brilliant. 

Hi 2belts, so sorry you have found yourself in this position,  I found my lump the week before Christmas last year and have been on the roller coaster since,  this is my 3rd diagnosis but before it was curable,  now it is in my internal mammary lymph nodes and pericardial lymph nodes,  I am PDL1 positive so having pembrolizumab immunotherapy 6 weekly and nab paclitaxel weekly with a week off after 3 weeks,  I'm not going to say I'm accepting this new way of life because I still feel angry , upset,  in despair sometimes but I am very lucky I've still been able to look after my grandchildren on Monday and Tuesdays, work Wed morning,  treatment in afternoon then work all day Thursday and Friday so I'm trying to carry on as normally as possible,  I have the Brca 1 gene and mine is triple negative which as I understand is the worst to treat but from what I've read there are people still doing well with all the new treatments out there,  it's very very hard but try your best to keep positive,  you have a husband and 3 daughters that need you xx

Thank you all for your replies and apologies not being on here for a while x

I am very sorry to hear you all have this cruel disease.

My results that I was waiting on confirmed I am PDl1- Positive and I started treatment last Friday.

Cycle is 3 weeks on 1 week off for 12 weeks , then they will scan gain. I am on combined treatment of Atezolizumab (Immuno) with Nab-Paclitazel (chemo).  I really hope it can slow down this aggressive form of breast cancer , just to enjoy some more time with the family.

Sending my love to you all x