Update – a couple of weeks on

So I’m coming to the end of my second week on Venetoclax, which means I’m now taking 50mg/day and heading for 100mg/day on Wednesday. So far so good, no side effects other than many more trips to the toilet because of the extra fluids I’m drinking to ward off Tumour Lysis Syndrome (look it up, it’s not nice).

 

I took part in the annual Lighwater Village Quiz on Friday with my usual team. I haven’t been able to take part for the last 3 or 4 years, though my team did win without me one year. As usual we won the very demanding 100 question table quiz, and I was able to hear most of the questions as they were read out. We then lost in the semi-final up on stage in the ‘fastest finger first’ buzzer round. Was I restricted by my hearing in answering the questions quickly? Yes, I think so. Would we have beaten the team that defeated us if I was 100%? I doubt it, they were very good and went on to win the title.

New month, new meds

I’m due to start on Venetoclax next week and escalating the dose up to the full 400mg/day will take 5 weeks. Venetoclax is new, so new that I’m the first patient at Frimley Park to take it. So they’re being ultra cautious, and I have to be admitted to be monitored for the first doses and the early escalations. Tumour Lysis Syndrome is one of the major side-effects and that is nasty. Hopefully when I’m stabilised on a suitable dose the other side effects will be tolerable because I’ve got used to feeling good in the past 7 weeks since I stopped Ibrutinib. I’ve been propped up by daily injections of a synthetic bone marrow stimulant which is effective but can’t be used long-term.

So I apologise if I disappear for a month or so while I’m getting used to this new stuff. I hope to reappear in March and get to Eastercon and maybe a Southampton match or two (though given their current form I’m not sure I want to see them).

The current work-in-progress is trundling along and I hope to have a finished first draft this year.