Triple negative breast cancer

Hi, are you waiting for results before your oncologist will decided a treatment plan?  You have to wait for the PDL1 results which should take about 1 week because that'll determine if you can have immunotherapy or not, but that's different from the genetic testing which takes a couple of months to come back.

I've got secondary TNBC - I was diagnosed de novo and I've got the main tumour in my breast plus lung nodules.  I had 6 cycles of carboplatin + taxol and I'm currently off treatment until it spreads again.  The main tumour has shrunk significantly and the lung nodules are too small to be measured now.  I'll get scanned again in mid Sep.  I'm enjoying the break from chemo at the moment though and I feel well within myself - going back in the office rather than working from home, and taken up some gentle running again.

Hi Flamingo friend,I found out yesterday,oncologist very negative,they havnt got enough tissue to do the genome test and there's no plan as yet.My biggest fear is being put back on carbo and paxi,I couldn't tolerate it 1st time around.I just pray they can find a treatment that stabal8zes me and gives me quality of life.I wish you all the lhealing and all the strength you need.Sorry for late reply,I'm still working out how to be in a forum.lolXxx

Hi Pugchops  

It’s scary to find out your cancer has spread but it will seem better once you have a treatment  plan. Hopefully you have a new appointment with them where they can take that forward. I have metastatic TNBC, it had spread to my liver. I found out by accident when I had a scan for something else, when they were treating me for supposed early stage TNBC. It had travelled via blood - no lymph node involvement. 

My tumours were tested for PD-L1 and were positive, so I went on Pembrolizumab immunotherapy. Unfortunately it has to be served up with Paclitaxel or NAB-Paclitaxel, at least for the first few rounds. It worked well for me, but also led to a lot of immune system over-activity causing organ damage, so I had to stop treatment. However, with the remnants ablated, I achieved remission. I just hope it lasts!  

So yes, hope and positivity definitely! 

Bless you for your encouraging message,May healing and strength surround you.

Hi Codfish

Did you get told that your thyroid was up and down? ... I had issues with an overactive thyroid the year previous to being diagnosed with TNBC.

I was on medication to stabilize it, which worked but not without side effects.

Now I'm told it's slightly overactive again due to the chemo and immunotherapy, but I have requested to just monitor it and delay any medication until treatment for breast cancer has finished.

I'm having my second half of treatment and am on EC now, for 4 cycles, I had my first cycle last week and the nausea and fatigue were not so good.

Strange thing about it, if I had not had chronic hives for 2 months, that antihistamine did not clear up, I would never have known my thyroid was up anyway.

So, rightly or wrongly I asked to put meds for an overactive thyroid on hold .

Allison x

Not at all. Everything had gone smoothly, I had had 5 cycles of Pembrolizumab and had my routine blood test ahead of a week that would just have been chemo. A few hours later I was called into hospital because my creatinine was through the roof. At that point I was asymptomatic so very lucky my blood test had taken place that day. In hospital with an acute kidney injury they then screened for anything else my immune system might have hit and found the thyroid had also failed (previous test of TSH / free T4 before the 5th Pembrolizumab had been normal). Fortunately my pituitary, liver etc were all ok. Later on it was apparent my lungs had also been affected. I also have some ongoing bowel issues and inflammation in my spine causing neuropathy. The kidneys improved significantly but am on levothyroxine for life. 

• Hi, I too have metastatic triple negative,  this is my 3rd diagnosis  just after Christmas and mine is in my internal mammary lymph nodes and pericardial lymph nodes,  I too felt like I was getting very negative vibes from my oncologist and breast care nurses which didn't help me mentally at all,  it's a very tough journey but hopefully they will get a treatment plan in place for you soon and you will find things will eventually calm down and you can try and find a new routine.   I was lucky to test positive for the PDL1 so I'm on nab paclitaxel weekly with a break every 3rd week and pembrolizumab immunotherapy every 6 weeks,  I'm brca 1 also.  My 1st scan in June was very good and I'm due my 2nd scan this week (Friday the 13th) I'm just hoping and praying things are still going in the right direction,  sending you positive thoughts and prayers xx