Rising optimism

Day +14 Monday

For the first time in 5 days my blood pressure returned to normal overnight and I awoke to all the doctors standing in my room having fallen asleep after my 0630 obs. I was slightly mortified as it was the only day I was still in pyjamas while they were doing their rounds and I really wanted to be dressed for them. But I’m tired, very very tired and boy did I need that extra sleep. I’ve spent more time in hospital during this stay than in my original admission two weeks ago.

Dr Andrew Roberts, Mr Venetoclax himself, who I’m on the Blood Cancer Taskforce with, was the consultant on duty with Dr Lew doing the examination. They discussed my CRS – all the cultures for infection had come back negative and they’re sure that CRS grade 1 is what it was. I asked for a copy of my latest bloods and again saw that my lymphocytes have risen higher than they have been in 5 years from the nadir point of 0.6 on T-Cell infusion day to 3.8 on Friday and Sunday.

As Dr Anderson said there’s reason to be optimistic that this is due to the expansion of the T-cells themselves which ties in with the CRS symptoms and I dug out this paper which is very exciting…if it is the T-cells then this bodes very well for me reaching CR in a retrospective study (albeit a small one and a different CAR-T) which was published at ASH 2019. Would more than make that nightmare 36 hours worthwhile if that ends up being the case but it’s still early days and I mustn’t get ahead of myself. All part of the rollercoaster.


I had yet another ECG – again normal and did the trials bloods. Con Tam came to visit me and I was good to go. Headed down to see my children and did more walking around just seeing them at home than I’d done in the past 5 days in total. It also perked me up. My neutrophils are the lowest I think they’ve ever been at 0.8 so have to be very careful not to come into contact with any bugs – it will be a real concern for me when they go back to school but I think they need to so will have to cross that bridge when we get to it in the next couple of weeks. As my eldest son Cameron would say – ‘that’s a problem for future Deb’.

For those considering CAR-T I also came across this pamphlet that Lymphoma Australia has put together.

Click to access LYA084_CARTT_FactSheet_FA(web).pdf

Back with Nicholas tonight, everything in the normal range – no sign of neurotoxicity and I’m hoping that the CRS might be the only thing that happens and it’s all about recovering and then seeing if I’m in remission from here. Bone Marrow Biopsy, two weeks today and results a couple of days later. Looking forward to a very long rest tonight – it’s 6 days since I’ve had uninterrupted sleep and I’m really feeling it (and you can probably tell by my writing!).

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