It’s been a while since I have updated my blog, largely because I have been stable so have not had any developments to add. But I am conscious I engage on the forum with people new to metastatic TNBC, or new to TNBC, and often point them towards my blog. This is a blog that despite charting difficult times has, at least so far, a happy ending. So I hope my story can bring hope to people in the depths of disease and treatment.
I am now over 4 years from initial diagnosis, 3.5 years from learning I had reached stage 4 (and probably had done so at initial diagnosis), 2.5 years from having to stop immunotherapy due to a very serious reaction, and 2.5 years since I have had any sort of treatment other than the clean up ablation done just over 2 years ago. It’s 21 months since I got off the steroids used to save my kidneys after the immunotherapy event. It’s 10 months since I had my second hip replaced (unrelated to the cancer). And I remain in a good place. Scans continue to show no evidence of disease in my breast or in the ablation sites in my liver, nor any new evidence of metastatic disease. So I am still classed as incurable but have had no evidence of disease nor any treatment for some time.
Oncologists term this long tail survival. Before the more recent treatments such as the immunotherapy I benefited from, it wouldn’t have been usual to survive mTNBC for this long. Median survival was 12-15 months and less than 10% made it to 5 years. TNBC wasn’t one of the early targets for clinical trial of PD-1 blockers like Pembrolizumab because it typically doesn’t respond well to the immune system. Clinical trials did however show some advantage for patients with good levels of PD-L1 when Pembro was combined with a taxane. The clinical trial demonstrated a small improvement in median survival, but importantly showed that somewhere between 5% and 15% had a really good response and were mostly still alive at the end of the trial, 4 years later. I had always hoped I could be one of those and was hugely disappointed when I had to stop treatment 5 months in due to the kidney damage. But of course I got the kidney damage because the drug had got a really good response out of my immune system. So here I am celebrating being in the long tail after yet another clear scan.
Life has largely gone back to normal for me. It took a long time to get over the effects of the immunotherapy event and the long term use of steroids. It’s left me pre-diabetic and with the start of a cataract. But my kidneys returned to normal, my thyroid function is replaced by drugs, and I gradually overcame the colitis and ongoing issues with aches and tiredness. I still have a slight restriction in my lung capacity and the taxane induced nerve damage to my hands and feet is permanent.
I look forward to making it to 5 year survival next January. I have no doubt that will happen. If only everyone could have an outcome like this. Meanwhile, NICE has changed the guidance on who can be tested for genetic defects, so my blood has gone off for testing for defects on BRCA1, BRCA2 and a few other things. If it comes back positive I will have decisions to make about whether to have surgery to remove my breasts and ovaries, but also access to another treatment line, should I need it. I hope it’s negative for the sake of my children and grandchildren.
Update: The gene defect tests were negative. Phew!
