In June, I received the wonderful news that following immunotherapy, a near death and life changing immunotherapy related adverse event, and a microwave ablation of the liver where the probe exploded and remained in situ, my cancer was in remission. I understood this to mean that there was no visible evidence of cancer, not that there is no cancer. People keep asking me if this means I have the “all clear” and if I have been “signed off”. The answer of course is no. It’s excellent news of course, and it does offer hope. It also means at least for now that I will have 3-monthly surveillance.
It’s quite hard to get my head around it and I still find it difficult to believe. After the phone call in June I found my highlights reel of all the horrors I had experienced kept resurfacing. I found myself rereading my previous blog entries. I found myself searching for academic papers on the durability of checkpoint inhibitor induced remission. It occurred to me that as an early adopter of pembrolizumab in the metastatic TNBC setting, I couldn’t expect to find much outside the clinical trial data. I don’t know how large the population of people with metastatic PD-L1 positive TNBC is anyway, never mind knowing others who tread before me with my specific condition.
As well as being a slightly odd 3 months mentally, I am also somewhat burdened by the consequences of my treatment and IRAE. My peripheral neuropathy continues to escalate to the point where I feel like I am walking on ball bearings and can have difficulty gripping things with my hands. My joints are stiff to the point where both my shoulders are giving me issues as is one of my hips (the other is artificial). I have low level colitis which seems to flare up if I eat too many white carbs. My H1Bac is slightly raised but I have not become diabetic. I think my lungs are still compromised but I can’t go fast enough to tell because of the ball bearings problem. I am on levothyroxine for life. Fortunately my kidneys have recovered to an eGRF of 70, so that’s good (it was down in the low 30s when it all kicked off).
Net net, my mobility is somewhat compromised, which has some impact on my quality of life.
Last February’s ablation caused a lot of burning on my peritoneum and possibly also my ribs. I am still slightly sore to the touch in the area where the larger of the 2 liver mets had been.
And so I went into my next scan cycle with some trepidation. There’s always a bit of worry that the various neuropathy issues and the rib issues are actually being generated by bone mets. For a couple of days before the actual scan, I noticed I was getting ratty with my family. Ridiculous when I know it’s going to be another couple of weeks before I get the results.
Today was results day. I have had another couple of days of anxiety leading up to it. Today’s was a face to face, and I wanted to go to it alone as I wanted time to process it before talking to anyone. My husband wasn’t too happy, as he wants to support me.
Anyway, none of us need have been concerned. The scan, thankfully, remained clear. The ablation sites are also continuing to heal well. My appointment was with my consultant’s specialist registrar but my consultant popped into the office whilst I was there. Very effusive about my situation. I asked if she was surprised - she had once told me metastatic TNBC doesn’t stay in remission - and she admitted that immunotherapy was a whole new learning curve for her.
Unfortunately there’s little that can be done about my other issues. I could go back on steroids but none of us want this. I could take a mild antidepressant to block the nerves a bit but don’t want the other side effects of this. So I have to carry on being grateful that my cancer is in remission and that at the moment there is no immediate threat to my life.
Onwards into the next 3 month cycle.
