EP0057-201 Phase 2A Trial - Last clinic before the trial - 12 October 2021

 Dear me, another long day! 09:44-15:00 for a 10:45 appointment. 

It's taken a last-minute Covid glitch to break a paralysis of the blogging neurones. There have been previous Covid glitches affecting the smooth running of the chemo machine I recall and maybe it's almost compulsory now. 

Christopher went walking in several days of Lake District rain a week ago. On Sunday night he started doing a little cough, then another , then another. And it was the same on Monday morning. It was definitely new, but was it continual, or persistent? Lateral flow test was negative, but instructions said PCR was needed, so off he drove to a drive-in centre that he had to walk into. In the meantime, I did a lateral flow, also negative. All this was immediately problematic and highly stressful as I was supposed to be going into the Macmillan Centre at 10am for my pre-chemo Covid swab and bloods.

I did nearly have a melt down over it beause the symptoms have been getting less manageable and I really didn't relish the idea of putting everything off for another couple of weeks, or of getting Covid.  But we were able to reassess over coffee and hot chocolate.  Calm restored, there followed a conversation with the trial practitioner, who consulted with the team, who concluded that I too should get a PCR done at a public centre. Hoping that Christopher's result would be through, we would review Tuesday (this)  morning. Testing has clearly come on since our last PCRs - Christopher's reported before bedtime (negative) and mine around 7am (negative) even though I'd had to cycle hard to get to the last appointment of the day at Brent Cross and they were packing up as I arrived.

In retrospect, it's tempting to think it was all an over reaction - are other people as careful about a cough? But the alternative is potentially to take Covid into a building full of people with leukaemia and chemo-induced immune deficiencies. Not conscionable. 

So there I was at 9:44 on Tuesday having the bloods taken that should have been done on Monday. The trial practitioners persuaded the Centre manager that the self-administered car park Covid test would cover me for Wednesday's chemo session instead of a trained person one. Good to go. 

After that the day goes like this: wait for trial practitioner, time with trial practitioner (weight, temperature, O2 saturation, BP, PP, interview on how I'm feeling and reminders of what the trial involves - more later*, questionnaire to wind up the ICON9 trial), wait for doctor, see doctor (physical exam - stethoscope, breathing, gentle prodding, not so gentle prodding, limb function and strength; result of 4 October scan - no new nodules, existing nodules up a few mm each, main mass up from 4.6cm to 5.5cm diameter. To digress, that doesn't sound too bad but applying the formula for the volume of a sphere to these  measurements - V=4/3 x r cubed, gives an increase of 51 cubic cm to 87 or 70% 😞. To continue, run through the anti-sickness meds I'm going to be on, then sign the Trust's consent form), down to the kiosk to get a hot chocolate, knock it back with a banana while waiting to see the pharmacist, wait a bit longer for the pharmacist, then a bit longer.... see the pharmacist for maybe an hour? an hour and a half? (two sides of tightly packed text on her screen detail the drugs, foods and drinks to be avoided during the trial e.g. amlodipine which I haven't taken for a month now, grapefruit/pomelo - a recent disappointment - when I stopped the amlodipine I actually bought myself a pomelo but was then told I couldn't have it in advance of the trial or during it - had to watch the vultures devour it in front of me. Apparently it and a bundle of other things inhibit the CYP3A4 metabolic pathway - me neither, really - which could mean the olaparib and maybe the chemo not being metabolised adequately and thus building up in the body.) 

Out at 3ish, on my bike into a squall of fine rain - brrr.

*I was already prepared for quite a lot of hospital attendance and complexity for this trial with two infusions per 4-week cycle and associated monitoring, but it's gone up another notch - I'm just at the beginning of Week 1 and I think it should go like this:

Monday - Covid swab/bloods
Tuesday - clinic, physical exam, vitals
Wednesday - Day 1 of Cycle 1 - vitals, hydration, pre meds, EP0057 infusion plus several 12-lead ECGs and several blood lettings during the process, start 5-day anti-nausea drugs regime
Thursday - get started on sofa time?
Friday - Bloods and physical exam, start taking olaparib

Week 2:
Tuesday - bloods, physical exam, vitals
Sunday - covid booster and flu jab

Week 3:
Monday - Covid swab, bloods, stop taking olaparib
Tuesday - clinic, physical exam, vitals
Wednesday - Day 15 of Cycle 1 - vitals, hydration, pre meds, EP0057 infusion plus the 12-lead ECGs and more blood lettings, start 5-day anti-nausea drugs regime
Thursday - more sofa I expect
Friday - bloods and physical exam, restart olaparib

Week 4:
Tuesday - bloods, physical exam, vitals

Then I think it settles into a somewhat less demanding schedule...

Week 5:
Monday -  stop taking olaparib
Tuesday - Covid swab, bloods, clinic, physical exam, vitals
Thursday - Day 1 of Cycle 2 - vitals, hydration, pre meds, EP0057 infusion plus the ECGs and blood lettings
Saturday - restart olaparib

Week 6:
Week off??!! Except for olaparib

Week 7:
Monday -  stop taking olaparib
Tuesday - Covid swab, bloods, clinic, physical exam, vitals
Thursday - Day 15 of Cycle 2 - vitals, hydration, pre meds, EP0057 infusion but no more ECGs or blood lettings
Saturday - restart olaparib

Week 8:
Week off except for olaparib.

Repeat weeks 5-8 ad infinitum or until I'm off the trial for whatever reason.

So - I think that in my last post I referred to a wish to get more workaday about things.  This is going to be like having a part-time job with very complicated flexi.









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