EP0057-201 Phase 2A Trial - Cycle 2, Day 27, clinic day - 7 December 2021

 Cycled in and out: ever-increasing effort and self-belief required. Steam engine huffing and puffing continues with ever-reduced transmission to legs. Still, did it. Was hoping B12 injection (red and given yesterday by GP's nurse) would give miraculous rebound of energy and millions of new red blood cells, but no.

Huge queue for phlebotomy, moving very slowly. When I texted the trial team, the research nurse said to come up and she would take my bloods herself. That done, I could pass on the good news that the last fortnight has been better - perkier, more energetic and able to motivate self and get some things done, don't remember any low-level olaparib nausea episodes. Guts still unreliable and anti-social but less grumbling and discomfort. I don't know if the change to Lactofree milk is paying off or if it's just the body getting used to the new regime. I guess I'll have to try slowly reintroducing real milk and seeing what happens - maybe after Christmas. I've also eaten more Marmite, fish and eggs over the last couple of weeks, partly by chance, partly by the fishmonger doing his usual thing and overselling fish, and partly consciously in an effort to increase dietary B12.  Whether that's helped with perkiness will probably remain a mystery.

Dr L for scan results etc. I have  been a bit fearful - I thought there was decreased rushing-to-loo at the start of this regime but feel of late that rushing-to-loo has increased somewhat. It is difficult to tease out from the general gut effects which are probably a side effect of the EP0057.

So, was hoping the scan would give a clear view, but it hasn't:

Perirectal tumour was 5.5cm at last scan and now 5.3cm. Interpretation uncertain - taken at face value could mean tumour has slowly got smaller over the two months of treatment, with the 2mm translating to a more significant-sounding 3-D volume loss over the surface of the tumour. Or it could be an artefact of measuring a slightly different diameter of an irregular solid shape and actually there hasn't been much change. On either of these interpretations, it hasn't got significantly bigger. But - it could have got significantly smaller at first and now be growing again, which would match my tentative perceptions.

On the more positive side, a 9mm lymph node is no longer detectable; a 6mm one is now 4mm; and a 13mm one is now 9mm. Also the Ca125 has come down a bit  although it remains a blunt instrument, it's not analysed frequently enough to provide a  nice time line and the one from today's sample will not be back from the lab for another day or two. 

So, on this it will be a matter of waiting for the next scan in two month's time and continuing to record in my poo diary.

Blood counts aren't great - Hb has come down to 93 from 111 last time - now definitely below normal range and entirely explains the need for much huffing and puffing on stairs and hills, but still within trial protocol (has to be above 90); WBCs 2.3 which is low  normal but also within protocol, so it looks as if treatment will go ahead on Thursday, pending further results coming back more slowly.

*A stick (see 1 December 2021)

PS - 8 December - call from research nurse - neutrophils below 1.5 so too low for trial protocol. Will have to go in early tomorrow to have more bloods taken in hope that neutrophils will have bucked up enough to have another treatment. Bleurgh.