Continued remission

2 minute read time.

The scores on the doors are 38 months since my mammogram recall, 30 months since being diagnosed as an ‘incurable’ with liver mets, 18 months since my last systemic treatment (when I had to stop immunotherapy), 1 year since my last invasive procedure (liver ablation), and 9 months since stopping the recovery course of steroids following my immunotherapy adverse event. I have now had my 4th 3-monthly scan in a row with no evidence of new disease and stable ablation sites. Every scan cycle brings the usual mix of hope and fear. Suddenly I feel liver twinges out of nowhere, that disappear the instant I am told the scan is good. My consultant has agreed to reduce the frequency of scans. A promotion to six monthly scans seems a real breakthrough.

It’s not been an easy ride and I am somewhat damaged compared to how I was before this all started. I am grateful for the careful management of my immunotherapy related adverse event and that my kidneys were saved. Astonishingly, 18 months on, my kidney function is back to normal. I am still plagued by occasional bouts of gout as the crystals that formed at the time continue to work their way out. An occasional and uncomfortable reminder of what my kidneys went through. The steroids have left me with worsened arthritis. I have now been approved for a second hip replacement (the first was done 6 months before my original cancer diagnosis), and I hope to have surgery in May.  My shoulders are being ‘managed’ through physiotherapy but I still can’t get either arm behind my back, which complicates life somewhat. Other steroid impacts are being left marginally pre-diabetic - hoping my return to fitness after hip surgery will allow the full resolution of that - and the start of a cataract in my left eye. My thyroid function is stable on levothyroxine, and my blood pressure stable on amlodipine. Bowel issues are gradually abating. Chemo induced neuropathy in my fingers and toes will never go away but is manageable. Lungs are not yet right.

Overall, I have so much gratitude for how this has all been managed. I know anecdotally of people who have achieved long term remission with other PD-L1 positive cancers through Pembrolizumab. Each successful quarter takes me closer to this. 

A footnote on the continuing blockbuster nature of Keytruda (the brand name for Pembrolizumab) for its manufacturer, Merck. Per their 2024 financial report, revenue from sales was almost $29.5 billion, representing just short of 50% of their income. Unfortunately for them, the US patent expires in 2029 (2031 in Europe), after which it might be a bit more affordable. 

I have a place on a medical conference called “Make Seconds Matter” in June  It’s all about the latest developments in treatment for secondary breast cancer. There are lots of interesting clinical trials going on, always assuming the orange toddler and his chainsaw wielding sidekick don’t cut off the funding.

Anonymous
  • Great news on the promotion to 6 monthly check ups x

  • This is such positive news. I follow your blog and find it so helpful. Finished tnbc treatment may 24 inc a year of pembro but spread to lung by Dec 24, just one nodule and they were able to remove. Now on capecitabine and scanned every 3 months. Your story gives me hope. Hope the hip replacement goes well x

  • Thanks. I am looking forward to a new hip. I know the first couple of weeks are unpleasant (I had the first one replaced in 2021) but on the scale of some of the things I have endured, it’s a breeze. Hoping your situation remains stable.