It’s been a bit of an up and down journey over the last couple of weeks.
Kidney function is slowly and steadily improving and there’s now an expectation it will return to something very close to my previous baseline. Quite how I managed to swerve more significant permanent damage, I don’t know, but I am very grateful. I am now down into the tail end of the steroid wean, currently on 15mg prednisolone per day, which has got me to the point where I sleep normally, at last. Each step down in steroids is followed by a few days of muscular pain and cramps. I have been on high dose steroids for long enough that my body has shut down production of cortisol and is struggling to restart this. So this last bit of weaning could take longer than I would ideally like.
At the same time, it’s difficult to get my levothyroxine dosage right. I started out making things worse for myself by misunderstanding the hospital prescription information when I was first discharged from hospital. I was supposed to be taking 125mg a day, issued as a pack of 100mg tablets and a pack of 25mg tablets. Thinking I only had 1 tablet to take, and that I had two identical packs, I took 25mg a day for the best part of 2 weeks before noticing my mistake. Then followed a period of chopping and changing from higher doses back to lower doses as side effects emerged. All confused with steroid side effects. So almost 2 months into this, we are still working through what is the right dose, with my bloods showing hypothyroidism. Currently (since last Wednesday) back on 125mg per day, with the new side effect of breathlessness on exertion. Getting somewhat frustrated with all of this as I suspect I may have yet more bits of immune damage to my endocrine system that are starting to reveal themselves as the steroid dose reduces. And I would on the whole rather manage the breathlessness (which just means taking my time) rather than have them insist on increasing steroids again and putting me back into sleepless nights. So at the moment oncology aren’t aware of this new development as I will see how it settles between now and my next appointment.
The other bit of disappointing news is that my oncology team haven’t let me rechallenge the cancer with Pembrolizumab. The argument being it is highly likely to cause a repeat issue on my kidneys, which could be even worse than last time, as we are talking about using the actual drug that caused the issue on kidneys that aren’t yet fully recovered and are still being supported by steroids. Initially I was very concerned they were coming from a place of risk aversion due to lack of prior experience with this. I got an informal second opinion out of the team in Sheffield where my niece’s friend works as a specialist registrar in their melanoma team, as they had been very helpful in helping me understand the risks and benefits of Pembrolizumab in the first place. The view of her supervising consultant was exactly the same as my own consultant’s view. I have also sent off my medical data into the Royal Marsden’s private second opinion service, with a series of open questions for them to answer. In view of the alignment between Sheffield and my own hospital, I would be surprised if they support taking more pembro right now. But we will see.
So what’s next? The plan is a CT with contrast once my creatinine is below 90, then put me back into another period of watch and wait, whilst hoping the pembro already in me can work on the cancer for a bit longer. But realistically I feel it will be deja-vu by the Spring with the cancer regrowing, and the best offer being another line of chemo.
