Peter’s Hospital Diary

Yesterday was supposed to be the first check up after starting the Ibrutinib – scheduled for last week! However it went ahead anyway so that the overall state of my blood could be monitored.

The consultation was with the Clinic Nurse Specialist, Mairead, and very though it was too! Long chats about how I was feeling physically and emotionally, and perhaps one outcome is that although I feel well in myself, I am actually quite unwell (Yes, I know that sounds like a statement of the blindingly obvious, but sometimes the blindingly obvious needs stating!). We talked about the efficacy of the Ibrutinib in my circumstances, and the reassurance is that if it wasn’t thought to be worth doing, it wouldn’t be being done! The reason for the delay was explained (it does come direct from the manufacturer on a compassionate basis, but the NHS Trust needed assurance that this would continue for as long as the drug is effective – which was confirmed last Saturday. The current forecast is sometime on Wednesday – we shall see!

The blood test results came through in stages while I was there. The blood counts were good, but the blood chemistry was less good. Calcium is still stable, but there was evidence that kidney function was less good, and also an impairment in liver function, and an increase in one of the cancer markers, LDH. (Lactose Dehydrogenase). Creatinine levels hadn’t been reported when I left, but as an interim measure, my steroid dose was increased for two days and another blood test scheduled for Thursday, by which time the Ibrutinib should have arrived. Apart from that, I had also lost a bit of weight, so I need to increase my food intake (regular meals!) and also pay more attention to my hydration to help my kidneys and liver.

So a very useful consultation, lots to think about, but overall still very positive.

(I also noticed that the drugs listed on my discharge note on January 25th have not been added to my GP repeat prescription list, so I spent an hour or so getting my fax machine working (no e mail address!!!) so I could fax a copy to them.)

So Onwards and Upwards!