It’s Day Zero and the very professional Aaron looked after me in apheresis and infused my re-engineered t-cells, which had been defrosted by pathology. It was crazy to see them there in a 30 ml syringe which he simply injected into my canula after I received a couple of premeds. I did wake up this morning after a restless night really not wanting to come into hospital today. It seemed such a crazy thing to be doing when I’m so well and I’m not up to going into that decision making process now but if you have CLL and want to understand the reasoning for jumping now you might like to see this webinar I took part in last month (spot the journalist using an IPad who hadn’t quite worked out how to look at the camera!!)
I was monitored every 15 minutes for the first hour and am now getting hourly obs done including cognitive function tests (maybe they should read my blog – you may well see it here first!). Feel fine – I thought it might be a bit anticlimactic but it was still exciting and fascinating.
There are a couple of major side effects which affect as many as 60 percent of CAR-T patients – the major one being cytokine release syndrome and neurotoxicity. They’re both scary and cause brain inflammation. An early sign is cognitive impairment. They know how to treat these side effects a lot better than they used to but early detection is the key so every hour I am being asked my name, where I live, what an item such as a pen is and to write a sentence. Because of this at this point I thought I’d introduce you to my sister Nicola who will put updates on here over the next few days if I suddenly become unable to – I have followed others stories and have started worrying when they went silent but it was simply that they were going through a process many patients go through and which the neurologist I saw yesterday to assess my baseline assured me doesn’t last long term. Nicola lives in Queensland with her 3 beautiful children (very biased Aunty here) and this photo was taken of us at Christmas after they travelled to Melbourne to be with us. Thank goodness they did as we have been in lockdown and unable to travel since March. Hopefully you’ll keep hearing from me but if I start talking gibberish (more than usual that is) you’ll understand why! Now in my hepa filtered room on the 5th floor of the Peter Mac and destined to be here until at least Friday as the trial protocol requires 72 hour post infusion admission….time for a well deserved nap to allow those mutant cells to start multiplying and try to relax after the stress of reaching this point.