I am, as my consultant said last week, ‘stuck’. The creatinine level is stubbornly stable at around 1.75 x my previous baseline. Whilst there might be some further small improvement, it looks like that may be my permanent new normal. I am told it won’t have much impact on me, lots of people live quite normally with that level of kidney impairment.
Meanwhile, they seem afraid to progress the steroid wean down, “buying more time”. But they are not looking at me holistically when making this choice. The high dose steroids (still 40 micrograms of prednisolone a day) are taking their toll. I have the odd night when I sleep reasonably well but it’s mostly difficult. In combination with the effects of the levothyroxine (which I also think I am having too much of), I live with too much jitteriness, too high a heart rate, too much frustration when things don’t go my way. I keep monitoring blood pressure, blood sugar, thankfully these remain ok, managing my diet - I do not want to emerge from this diabetic.
Mostly, I feel a lot better underneath the drug effects. The raging thirst has gone. I can do more, although I am impacted by the heart rate and how that can turn into breathlessness. I managed to complete parkrun yesterday (as a walker), for the first time since my IRAE. Tough, but I did it. Sadly my sense of taste remains hugely compromised and I hope this is drug induced, not another effect of the IRAE damage. Time will tell, doctors not being clear and trying to blame the chemo - which hasn’t been in my system now for 6 weeks. Hair nicely growing again post chemo, but unfortunately the peripheral neuropathy continues to coast.
I went for my liver MRI a few days ago. I was pleased to find they had cleared me to have it with contrast dye as my kidney function was much better than when it had been booked. As the last appointment of the day, they were more than happy to accommodate the longer scan involved. So I await the result report. A CT has also been requested and I await an appointment letter.
Consultant firm on no more pembro. I may come back to this when we see what’s what on the MRI. I have a telephone review tomorrow (not expecting MRI to be back) and my single priority is to try to get the drug load reduced down. Both sets.
