Waiting is the hardest part

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I had treatment for primary TNBC (surgery, chemo, radiotherapy) between March and November last year, and found out in October from a coincidental CT scan that I had a secondary deposit on my liver. I had a PET-CT and liver MRI in November and received the relatively good news that the liver met was isolated and I was otherwise clear of evidence of disease. I had the liver lesion burnt out through microwave ablation in December. My consultant has me on a 3-month watch and wait regime. It’s been fabulous to have a few months without treatment, and I have mostly been able to ‘park’ the worry of what might be going on inside me. I have just had my round of scans. Spending 30 minutes or so going through the noise and vibration of the 3 different MRI scans has started to bring the anxiety of last November back. Waiting for results is definitively the hardest part, especially knowing I could be on treatment for life if it’s started to spring back. I know the fact that I feel really good is irrelevant, I have never felt unwell (other than unwell from treatment side effects). They will probably do more ablation if the liver hasn’t been cleared and it’s nowhere else, otherwise it’s Pembrolizumab plus more chemo, as I am PD-1 positive. Does anyone have any experience of pembrolizumab (Keytruda)? 

  • Hi  

    I don't have any experience with pembrolizumab but as no one from the group has come forward to share their experiences with you yet, I've searched the group and found these posts for you. As there are only two others besides yourself, am I right in assuming that this is a new drug for secondary breast cancer? I'm also a member of the melanoma group where pembro has been used for a long time, for people whose melanoma isn't confined to the original lesion, with lots of success.

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  • Yes - it was approved last Spring I think for metastatic TNBC cases, where more than 10% of the cells in the patient’s sample have the PD-1 protein. It’s even more recently been approved to give neo-adjuvantly for early stage TNBC with the same PD-1 criteria. There are a couple of people on the TNBC forum who have started it neo-adjuvantly. It’s been used with other forms of cancer that express PD-1 for a while. It’s a checkpoint inhibitor drug. PD-1 is the body’s invisibility cloak that it uses to protect the endocrine system from being attracted by the immune system. The drug takes down the shielding on the cancer - but also on the endocrine system. So it’s fairly high stakes. I have been told it will be my next line of treatment but am unsure what to do if and when I get there. Plus it is served up with Paclitaxel, and I have already had a shed load of Paclitaxel and have some resulting peripheral neuropathy from it. Not awfully keen on having more.