Six weeks into my immunotherapy related adverse event, I can see a path to dry land.
Kidney function is gradually improving. My creatinine is down to less than 1.5 x my baseline and the medical team still think I have further recovery potential. Steroids are now down to 20mg a day (so a third of what I had at peak), which is helping enormously with sleep. The thirst has gone, and I feel largely normal other than for the remaining side effects of the steroids. Breathlessness under effort, particularly earlier in the day when they are more active in my system, remains a problem. Sense of taste still an issue but has improved a bit. Oncology believe I will be able to ladder down to 10mg a day next week.
Thyroid balance is also improving as they adjust based on blood test results. Unfortunately one consequence of my thyroid issue has been stiffness in one of my rotator cuffs but my favourite physio has been engaged to sort that out. I have some rather painful exercises to do, with another physio review in 3 weeks time.
When I saw the write up of my MRI, it confirmed what I thought I had heard over the phone last week. The bigger liver lesion has almost halved in diameter. The smaller one slightly less than half. The satellites have disappeared and the biliary dilation has gone. There is no ascites and no sign of other metastatic disease. Of course lesions aren’t flat circles on a screen, they are 3 dimensional. So I ran the maths on the volume of spheres versus their diameter, to get a sense of the likely scale of change in tumour volume. The reduction in volume is of course greater than the change in flat diameter. I prepared for today’s oncology review with that volume data combined with the results from Keynote-355, the trial that led to the approval of Pembrolizumab for metastatic PD-L1 positive TNBC. The trial results demonstrated that almost no patients who achieved a complete response, or even a significant partial response of the sort I have already had, relapsed within the 53 months of study follow up. Whilst there’s no guarantee that that will be my story, it does look like a durable remission is a plausible outcome from further treatment with pembro. At this point, the oncology team started to understand why I have been pressing for them to not write off the idea of rechallenging with pembro. Helpfully, the registrar was familiar with one case where this had been done successfully. They have agreed to a face to face with me next week in which a firm decision can be reached. At that point I will have 1 week to run on the NICE timeline for remaining within 12 weeks of my last infusion.
Obvious risks involved, but I have said many times I prefer that to the decline / try more lines of chemo with awful side effects / maybe extend quantity but not quality of life scenario that seems to be the alternative offer.
