Day + 11 – Friday Fun
Well that has to be one of my most miserable nights for a long time despite being given exceptional care by the Royal Melbourne with hourly obs and cultures of everything they could as standard of care for treating a CAR-T cell patient with a high fever, excruciating bone pain and falling blood pressure.
I was pumped full of penicillin and a haematologist visited me in the ward at 1am to check on me. The verdict when the consultant Dr Mary Ann Anderson came over from the Peter Mac this morning was CRS, and Dr Lew tells me it was grade 1.5 – I didn’t need the “toci” but might still if it returns. My hair was crazy (I know you’re saying and this is what you’re worrying about?!) – I would totally have given Amy Winehouse a run for her money – and you can see how happy I was! Just to make this experience a little bit more real (as if you needed that). Thanks for all the messages – sorry that I have taken so long to update but I’m sure you’ll forgive me. You can tell they’re worried about you when you’re on 30 minute obs. At least tonight they’re 2 hourly.
This all kicked off on Wednesday with bone pain which radiated out from the large bones in my legs to my lower back, shins and even, at one stage my jaw. I spent most of Thursday in bed/or on the sofa but it was during a crucial footy game that my temperature hit 39 (please note I was watching not playing!) and Nicholas took me to Emergency while speaking to the registrar at the Peter Mac. Peter Mac doesn’t have ED and it’s also a “covid free” hospital so they don’t admit anyone without negative results – I was always going to spend a night at the Royal Melbourne while waiting for those to come back. And it was eye opening. Those poor nurses working in full PPE, putting layers of plastic on top of plastic. I had my own room in the ward but it was a different world over there.
Tonight I came across the questions I had for Con Tam on Monday:
When will we be able to find out if the t-cells are multiplying? Do they ever not multiply – is there a way to kick them into life? Do they still have some of my cells in America? When should I start worrying – I’m worried now that I’m too well.
I’d said the same to Dr Michael Dickinson, whose trial this is, when he checked in on me earlier in the week and he had assured me that they’d seen activity with this particular CAR-T product even with no side effects. Well I certainly know it’s working now and there are a couple of theories why I am experiencing it (probably more but I’m groggy from no sleep for 36 hours and just wanted to update you all). This is early days so my data will help establish it but in my head (obviously with only an amateur haematologist badge) I want to believe that I actually had more CLL in my bone marrow than they were finding in the biopsies they took from my lower back. It can accumulate in different spots, find a home it’s comfortable with and hang out there. My early disease was more lymphoma like and liked to party in my lymph nodes (hence my neck getting bigger than my head) but it’s also very active in my bone marrow now. So I’m now thinking that it was proliferating in my thigh bones so the fact I’m getting CRS is because the reengineered T-Cells are going to town on my disease there. Another option could be that I had so little disease that the cells are causing inflammation because they’re expanding with not much to do – hey that works for me too. I’m sure we’ll know one day.
In the meantime my temperature is back under control. I haven’t had paracetamol since lunchtime and the bone pain has almost completely subsided. Word has got out about my blog so there’s a bit of a roll call going on.
There was a hilarious handover this morning where a nurse from the Royal Melbourne pushed me out of the ward in a wheelchair to a waiting orderly from the Peter Mac in a different wheelchair to bring me home to 5A. I felt like I was part of a hostage handover. But it does feel like home back here on 5A and I feel safe.
Dr Michael Dickinson popped in to see me tonight and we did our first photo shoot
You can see how literally hot I am! I’ll forever be grateful to him for getting me on this trial – just no more CRS please (apparently it can come in waves so they’d be surprised if what I experienced overnight is it and I’m here at least for the rest of the weekend). I do however have the room with the best view. I’m leaving the blinds up and fantasising that I’m in Manhattan – a city that also doesn’t get to sleep.