EP0057-201 Phase 2A Trial - Cycle 4, Day 15, eighth infusion day - 3 February 2022

 The Enhanced Supportive Care Team call came - from a temporary member who is also a community palliative care nurse. We had a good chat - although the last two weeks have not been great, they have been slightly better than the previous two weeks, so I was in better heart, hopeful that a more predictable symptom pattern might emerge that I could live with. She's going to ring again in a couple of weeks to see whether there is any settling down.

At Tuesday clinic, haemoglobin (Hb) was down again (97), below normal, although still acceptable for treatment today. Well - that explains the increasing breathlessness and slight palpitations. 

Dr M and I had a good talk about where things stand. The scan results from 26 January are in: the 'pararectal deposit' measures up at the same size, although again my perception is that it might have got bigger during the anaemia/transfusion treatment gap then reduced in size after resuming treatment. But it's not bigger, although only two measurements of it are taken, front to back and side to side - the cross section that would show if a stage magician  had been allowed to cut through at the tumour's widest point. It's positioned between rectum and sacrum which further helps explain the current undignified daily regime, but makes it difficult to manage the symptoms. Surgery and radiotherapy are not ruled out although not (yet) indicated from the oncology point of view - but the one would require an irreversible stoma and the other might lead to worse bowel symptoms.

We also talked about the pattern of recent symptoms - unclear but looks like post-infusion constipation followed by spike in loo visits - and whether  tweaking the anti-nausea meds might help. After discussion, and as a first step, the infusion-day ondansetron (constipating) will be dropped and replaced by domperidone, which Dr M would expect to be more likely to increase gut activity. Cross fingers that nausea control is maintained and that it has the intended effect of flattening the spike that's an emerging pattern over the week or so after treatment. Psychologically, this feels like regaining a bit of control. 

Cogitated hard on the cycle ride home from clinic. This resulted in:
1. another raid on the squared paper and a new 'graph' - x axis is time of day, y axis is date - number of loo visits in each hour gets written into the appropriate square. This is aimed at boosting my confidence about when it's safe to venture out - not often;
2. an email to the trial practitioners with stodgy detail about why it might be a good idea to plan ahead for Hb dropping below the trial protocol limits for treatment again, so that there's more chance of maintaining continuity of treatment, which might (just might) prevent the relapse that I perceive to have happened during the last treatment gap. I've also asked whether it's possible to guage the third dimension size of the tumour and whether there has been any change in lymph node involvement, which I forgot to ask about at clinic.

Today's lunch: