Diagnosed with TNBC in April, had a very small 12mm tumour removed successfully with no lymph node involved. Started EC chemo (3 sessions down) to have 4 in total then 4 sessions of Pacletaxal then radiotherapy. So far I’m coping well with the EC, apart from hair loss and fatigue and I’m very grateful for that. My concern is that although they’ve told me what the regime is I keep wondering if they’ll add in anything else, ie immunotherapy as I see a lot of people have had that. Anyone have similar experience/advice to share.
Thabk you
Hi Christina
I am sorry you are going through treatment for tnbc. You are on what I understand to be the standard regime for smaller tnbc tumours with no lymph node involvement.
The immunotherapy you will have seen referenced is pembrolizumab. It’s a PD-1 blocker and it works on cancers that express PD-L1. Something like 40% of tnbc does (not all tnbc is the same). Because the drug blocks PD-1 throughout the body, it’s a drug that can also cause major issues and is therefore only used where the benefits might be greater than the risks. If you are wondering why I am mentioning PD-1 and PD-L1, it’s because PD-1 on immune system cells binds to cells that express PD-L1. The body’s normal use of this is to put an immune privileged zone around critical organs, but this variant of tnbc uses the mechanism to hide from the immune system. It acts like an invisibility cloak around the tumour. So breaking the bind allows the immune system to work on the cancer but also exposes critical organs that would otherwise have been protected to collateral damage.
I understand the NICE approval is for two groups of people who must also have sufficient levels of PD-L1: People with high risk early stage tnbc, which is a grade 3 tumour greater than 2cms and/or lymph node involvement. In this scenario it’s given before surgery with 4 cycles of paclitaxel and carboplatin and 4 cycles of EC, then for 6 months after surgery. This is probably what you have seen mentioned. The second group are people with recurrent or metastatic tnbc. In this scenario it’s given for up to 2 years initially with chemo.
So you are in the great position of having a lower risk tnbc. You might want to ask if they have tested your tumour for PD-L1 and if it’s something you could be offered later, if needed.
I had pembro when they realised I had secondary tnbc deposits on my liver. I was going through the chemo regime you have been offered when this happened. Pembro put my cancer into remission, and I have been stable for some years despite remaining classed as incurable. But I had significant kidney, thyroid and lung damage as my price.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
I am a Macmillan volunteer.
I have metastatic Triple Negative Breast Cancer, in remission
Thank you for the comprehensive reply, think I might need to read it a few times 
Sorry!
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
I am a Macmillan volunteer.
I have metastatic Triple Negative Breast Cancer, in remission
