We decided to take a short break whilst I await my appointment for a liver MRI. The ongoing slew of consequences from my immunotherapy related adverse event have been taking their toll on me physically and mentally, and I felt a change of scenery might help me brighten up a bit. We spent a few days with family who live in Sheffield, and then had a week in a holiday let in Bakewell in the Peak District. Beautiful scenery and lovely walking country.
Oncology wanted me to reduce my steroids again, from 7.5mg per day to 5mg. I got them to agree that I didn’t need yet another blood test and appointment, as I was going to be away for 10 days or so. Instead, I could decide based on how I felt. This step down would be 2 weeks after the previous one, if all was well. It’s worth saying that it’s been rare for me to only stay on a step for 2 weeks - usually the impact on my kidneys, as seen on the blood test doesn’t support it. Or I develop yet another ‘itis’ and have to go back up.
The day before the intended reduction, I remember getting the prednisolone out, and I remember throwing away an empty drug packet. I don’t remember consciously taking the tablets. Later that day, I noticed my left foot felt odd and tingly. Peripheral neuropathy writ large. Worth mentioning I had problems with stingers down my left arm after a previous step down and have only just worked through those with the help of physiotherapy. At this point, I put the foot feeling down to doing a lot of walking. By the time I went to bed, it felt like my lower leg was encased in a compression sock. Next morning was day 1 of the intended reduction, and I proceeded to plan. As the day went on, the issue with my leg escalated until it was feeling odd - almost numb - most of the way from the foot upwards. I had full motion control and could still feel contact, but in an odd way. By the next morning, the issue was affecting my bottom, genitals etc. I could tell when I needed to go to the toilet, but only tell if I was being successful by whether I could hear anything reaching the toilet pan. By this point I was fairly sure I had gone ‘cold turkey’ the day before the reduction. I decided to stay on the lower dose for another day to see if the symptoms stabilised. Needless to say they didn’t, the second leg started to feel numb too.
So I reverted to 7.5mg, and the symptoms gradually improved. This is obviously going to continue to be a long and difficult journey. The kidneys aren’t really a problem, but the breathlessness is not great. And of course I can’t allow the inflammation in my spine to cause more permanent nerve damage.
Suffice to say I am pretty fed up with this, if grateful the cancer is as far as I know reasonably under control. Pembro is definitely the gift that keeps on giving.
