EP0057-201 Phase 2A Trial - Cycle 4, Day 28, transfusion day - 16 February 2022

 Another (anticipated by me) glitch.

I've spent the last fortnight being a mix of purposeful, anxious, impatient, cross and knackered. I was anxious that my long and stodgy but purposeful email was a bit over the top and that may have been the case as I didn't get an answer until I chased up a week later. Impatient because I would so like to be able to plan something - a trip to Devon or to meet a friend for a walk. Cross, because I didn't get a reply to the email and so wasn't able to even consider a plan, and because even home-based things are becoming too much - there's so much that needs doing but had to have a sofa day in the wake of treatment - is this the treatment or the general weariness? Knackered because Hb dropping further - 10 minutes gentle bread kneading needed recovery time, never mind trying to spend some time at the allotment. Seed potatoes and onion setts have arrived, spring is beckoning and I don't have the brain or body energy to respond. 💤

I did get an non-committal email reply after I'd chased the trial practitioners - along the lines of not arranging transfusions in advance, and having to talk to the doctors next clinic day about the tumour progress. My attempt at some control thrown back in my face, it felt like, so I petulantly didn't reply. 😠

Yesterday was clinic day again and as anticipated, Hb was down - to 79 again - below normal, below trial threshold. Appointment for a one unit transfusion  squeezed in for today - bit of a kerfuffle about the Covid test but the lab came good around elevenses time - and here I am, back in Supportive Care on the 4th floor. As long as the 'after' blood count comes back good enough, I'll still get the EP0057 infusion tomorrow. While I'm not keen on further bone marrow abuse, I would like to see if keeping to the fortnightly schedule will avoid the problems that followed the last break in treatment. Because this is the second time I've had to have a transfusion, the trial protocol says that my EP0057 dose has to drop from 12mg/kg to 9mg/kg. If anaemia recurs the dose can drop once more but after that I'd be off the trial.

Slightly more positively, after the last treatment, the bowel symptoms were again slightly improved - still a thoroughly abnormal lifestyle but a trifle calmer. Whether it was the tweaking of the anti-nausea meds, or a cumulatively punitive effect of EP0057 on the tumour, or my guts are reaching a modus vivendi with the treatment again, or the daily peppermint tea I've taken up, or increasing day length, or the sun being in Aquarius, it's impossible to know.

Much more pleasantly, yesterday was daughter's optician day so she came to work at ours. When she'd logged off for the day, we picked chard at a muddy allotment and walked the dog round.At home again, we made and filled buckwheat pancakes with chard and cream cheese and doused them with tomato sauce before eating them wit allotment Charlottes in butter and parsley. 😋

Then it was after-dinner together Bananagrams which, predictably, she won. I blame the lack of oxygen to the brain.

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