EP0057-201 Phase 2A Trial - Cycle 6, Day 1, eleventh infusion day - 17 March 2022

 Clinic and treatment days are at the better end of the fortnightly round, but the past fortnight has been a bit grim. The trial started fairly gently back in September/October and I was hopeful it wouldn't be too destructive of everyday life, but things have been going downhill - badly enough for the chat to have started being about leaving the trial or at least having a fortnight break. It's a mix of increasingly active guts and an increasing level of 'chemo' type effects. Perhaps not so much the plummetting haemoglobin just now. The gut situation has become ridiculous: I'm housebound and tethered to the loo for far too many days in the fortnight now and anxious about going out on other days - it's still possible that there's an element of unfortunately-located cancer to it, but feel it must be partly the treatment. I still don't feel as straight nauseous as on the previous chemotherapies, so there doesn't seem to be much risk of actually throwing up, and I don't have to take as many anti-nausea meds as on other regimes...but...there were three days that were pretty much sofa days after the last treatment with one that felt like a day for groaning on the sofa feeling sorry for myself and not much else. The best way I can describe it is that it feels like every cell has been poisoned and doesn't want to carry on. Being on a two-weekly schedule means that there's not much time to recover before the next treatment, so it's relentless.

On the plus side, Tuesday's haemoglobin was the same as last week's - 79. This tallies with my Highgate North Hill cycling experience this week - slow and breathless but not feeling absolutely terrible. 79 is well below the bottom of normal range (115) but above the trial threshold and it probably means that, on the reduced dose of EP0057 (9mg/kg now), my bone marrow is just keeping up - making red blood cells at the same rate that they are dying. And it feels like a small triumph to be making some of my own. I did make a case to Dr M on clinic day that I should have a transfusion to get me nearer normal range on quality of life grounds, but this did not elicit a positive reaction. She is normally completely convincing in her responses but I didn't quite buy this one. I'd get it if the risks of transfusion were still significant, or the costs too great, or the opportunity costs of other people not getting it were too high. But none of those reasons were put forward. Apparently, it was more to do with anaemia being expected with chemo and expected to get worse the more chemo is given, or the more appropriate response to anaemia being to leave the trial if the effects aren't liveable with. This doesn't line up with the approach to e.g. sickness or my gut problems, where they try to do something about it.  I may revisit this one again in two weeks time, if Hb is still  plateauing. 

On another plus side, I made it to our allotment committee meeting on Sunday, where I picked up the task of writing a policy on trampolines. We've been umming and aahing over them for a while. Trampolines use space  that should be used for growing things in accordance with our Lease, and they might create liabilities for the Association if a user got hurt even if the main responsibility should lie with the owner or parent. But more pressingly, the February storms blew at least three trampolines around the site, despite our warnings to owners to secure them. And mysteriously, one is  still unclaimed - I can't work out whose it would have been. It seems impossible, and rather terrifying, but maybe it flew over one of our boundary fences???!!! Anyway, in a stern committee moment we voted to phase them out.

No lift home after treatment today as my very reliable lift provider has been lured away by a very important football game, which had a very favourable outcome for the home team. I found a very understanding cab driver not put off by having to take a bike. He must have been slightly discombobulated though, as he forgot to turn on his meter until I reminded him as we headed into Camden Town.