So it’s been a while and so much has happened but before I bring you up to date let me fill you in with where I am right this minute. It’s day minus 6 of my CAR-T clinical trial at the Peter Mac Hospital in Melbourne and it’s day one of my lymphodepleting chemotherapy regimen which will lower my immune system in preparation for my reengineered t-cells to be infused on day zero which is next Tuesday. This procedure will officially make me a genetically modified human (there’s even a register I have to go on in the US and my kids are very excited by the idea of me becoming mutant Mum – we had a great conversation about what superpowers, other than a cure for my incurable cancer, this might give me but more on that later).
So here I am just starting full dose Fludarabine and Cyclophosphamide (hold the rituximab). I’ve held off sharing this part of the story until the chemo started because I didn’t want to jinx it – but it’s well and truly happening now. And I don’t mind telling you that I’m freaking out but I do seem to be the only one in my team who is so hopefully this is all just part of processing worst case scenarios and all will be well. My doctor Professor Con Tam even looked slightly bemused as I got him to witness my advance care directive and my will this morning. It’s very much like the build up to taking ABT-199 for the first time – that’s now an established approved drug (venetoclax) and has even now got FDA approval for frontline treatment but when I took it in 2015 not many humans had. I’m pinching myself that I’m doing yet another first in human clinical trial – this time amongst the first 24 in the world so I am pretty scared.
I’m hoping I have made the right choice having CAR-T now and I’ll fill you in with how I’ve reached this point over the next few days. I’ll forever be grateful to venetoclax for giving me the almost 5 years to get to this stage, but for now, it’s time to rest and let that potent chemotherapy do its job knocking back my immune system which is pretty much as good as it’s ever been. If you could see my bloods you would not know I have leukaemia – everything is in the normal range and ibrutinib, the drug they’ve used to get me to this stage, is doing such a brilliant job that they had trouble finding CLL in my bone marrow – hence the mental struggle I’ve had reaching this decision which I will share with you as I bring you up to speed with the past 3 years.