Day Zero

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.

9 thoughts on “Day Zero

  1. Deb, I’m sending you light and love and strength. You are one of the strongest women I’ve ever met, you’ve got this!


  2. Deborah, I’m old enough to remember the Apollo 11 liftoff and feel like I’m watching a similar event from afar with my heart in my mouth. I “met” you recently via the Lymphoma Webinar on Aug 18 and have caught up on your blog after you reactivated it recently – I trust that doesn’t qualify as stalking!!. Wishing you well and saying “thank you” for taking us along for the ride. I’m a late adopter, probably heading for FCR in Feb or so – I don’t have all the “nasties” (dg). You are some test pilot, a truly brave person. Happy landings – full of admiration and thanks again!!


    1. Thanks Mick – believe it or not I’m a consummate late adopter too! I didn’t go under the English Channel until I was 100 percent sure that tunnel wasn’t going to leak. All this really is against my better nature but I’m rational and I’m convinced that not doing this was the worst of the two options. It is freaking me out how often they’re getting me to say words like pen and raise my hands up though – this stuff is obviously very serious…I did just find out that I have developed two further lesions on my last FISH test – not just del6q unmutated anymore so despite the fact I’m in an amazingly deep remission with ibrutinib given where I ended up on venetoclax I couldn’t risk becoming resistant to ibrutinib too and then only having an allogeneic transplant as a salvage option. But if this CAR-T trial had have been available down the track and I’d had a crystal ball I probably would have waited. Too late now! Still feeling ok at the moment. Thanks for your kind wishes – FCR with the right markers is still a great (and possibly curative option!). I’m sure you’ve had the right prognostic testing but just make sure you have had the IGHV test to make sure you are not unmutated x


      1. My wife might be tempted to say that I am a touch unmutated in a number of ways, but thankfully from an IGHV perspective I am fortunately mutated! People like you have contributed to a huge amount to the info mortals like me can distill from the internet about my condition- and , again, I’m pretty lucky, even if I have some rocky roads ahead! Get some sleep!


    1. Yes and my CAR-T is a new one so instead of being 10 days old they’re only 3 days old so they think side effects should also be delayed by 7 days! Thanks Brian – you’ve paved the way for all of us xxx


  3. Hi Deb, I also saw you on the webinar in August, and then found you were writing about your CAR-T experience on your blog. I wanted to wish you well and hope this treatment is super-successful. Thank you for all you’ve done for CLL patients in Australia (and elsewhere), in terms of sharing your story and advocacy for access to newer therapies. I’m on W&W, and expect to need treatment sometime, and reading about your treatment journey has been so helpful. Hope the next few days are not too eventful and you continue to recognise that pen :-). Bye for now.


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