Today’s situation. Largely housebound having attempted to reduce my steroids from 2micrograms to 1 a day. Ok it’s a 50% reduction but a minuscule amount compared with the blockbuster steroid dosage I was on when this all started. Every step reduction requires two things to happen. Firstly my adrenal response has to kick in to compensate. Thankfully, this hasn’t been an issue. We tread carefully through each step, and I usually have a couple of days or so of being emotional or grumpy to deal with, then it’s all ok. The second is to avoid the return of symptoms, or the appearance of new symptoms, from my immunotherapy related adverse event. This seems to be the tricky one. I failed the first time I went from 15 to 10 due to the appearance of pneumonitis. I failed the first time I went from 7.5 to 5 due to the appearance of pressure on my sciatic nerve, left side. This time, it’s pain and swelling in the right foot at the lower joint of the big toe. It makes it difficult to walk as I can’t push through my toe. It makes it difficult to wear a shoe as my foot is sore and swollen. Why? Inflammation. The answer is always inflammation. The steroids reduce inflammation so stop the symptoms being apparent. Why the inflammation? Back in September, after 4 months of being on a PD-1 checkpoint inhibitor, my immune system went off on a major damage spree. 7 months later, I am still finding new consequences.
So it’s revert to the higher dose of steroids, wait for the symptoms to abate, and try the reduction again in a couple of weeks. My consultant wants me off these steroids, as amongst other things (assuming my kidneys remain recovered) it keeps open options for further systemic treatment. Maybe my body is rebelling at this idea as I am not at all sure that the mooted option of Trodelvy (a immunotherapy/ chemo conjugate) is where I want to go. I certainly don’t fancy a third summer in a row on chemo, especially as I don’t know how many more summers I will be able to enjoy. I will be scanned in May to see if the second liver ablation has bought me remission. I could do with feeling better to enjoy the weeks prior to that. Hey ho.
