Day +21 – Monday
Excuse the Top Gun reference but that’s the music running through my head as I leave the Peter Mac today having seen Professor Constantine Tam, the doctor who I’ve spent the past 9 years on this quite extraordinary journey. He told me at Day +21 I’m out of the Danger Zone – I had just enough Cytokine Release Syndrome for the CAR-T to be now hard at work and he laughed about my lack of neurotoxicity because he said he could tell I was the patient who actually had her baseline improve over the past 3 weeks. Maybe the blog has helped stave that off but, given other than dying, neurotoxicity was my biggest fear it’s good to hear that I’m out of the woods.
I also managed to get Carly, my trials nurse, to agree to a photo with Con and I – she’s been amazing. As I always tell patients considering trials the level of care and attention you get is second to none and Carly is one of my favourites (along with Sam and Martina at Barts!). This is actually my first photo with Con as my doctor rather than an interviewee. I’m looking forward to us returning to the latter in the not too distant future.
Speaking of music – Natasha was singing along to the words from Frozen over the weekend and said after she sang “a Kingdom of isolation” – wow that’s our reality isn’t it Mum? We’re still in lockdown here in Melbourne – it’s like everyone’s a cancer patient now, we have fines for non mask compliance and nothing other than essential retail open. The overnight curfew has been lifted but we’re still restricted to our 5km bubbles with no guests allowed at home. So the kids and I marked Light the Night on our own on Saturday, 2 years after we had the honour of being ambassadors for the Leukaemia Federation at Melbourne’s Federation Square.
We found the whole experience of Light the Night very humbling. Seeing all these families holding Gold Lanterns marking those they’ve lost really choked us all up. Flash forward two years and my kids are really happy – their Dad Robert is doing an amazing job under difficult circumstances and their school has been very supportive too. I’ve only been able to spend 2 and a half days with them in the past 3 weeks and as much as I loved the weekend I’ve just had, it really took it out of me. I’m still neutropenic (at 0.9) and my lymphocytes are back in their normal range of 1.0.
Con said he would be very surprised if they find anything in my bone marrow next week and told me to relax and enjoy the ride! I can’t get my hopes up. I’ve been dealing with CLL and its trickiness for almost 9 years so I won’t count my chickens before they hatch (actually wrote won’t count my horses and realised that didn’t sound right – maybe the old brain isn’t that good after all).
Oh and speaking of which check out my new CAR-T bracelet – from medic alert – makes me feel a lot safer should I have a fall or be on my own and paramedics are needed.
Meanwhile on the day that I checked out of 5A for hopefully the last time last Monday (Day 14) I did another interview with Lymphoma Australia which Donna Gairns, their Director of Nursing, has just shared with me. I look quite bright eyed given what I’d been through, make-up is a wonderful thing – I think you can also see how excited I was to be going home.
9 thoughts on “Through the Danger Zone”
This is terrific to read, Deb. I’m so happy for you and your medical team. I don’t doubt for a minute how scary this trial was for you to undergo. It looks like the finishing line is very much in sight! xxx
Thanks Sam – fingers crossed! It will have all been worth it if I get a clean bone marrow biopsy next week – thanks for supporting me through this from the other side of the world x
Extraordinary stuff! Every best wish to you all. Thanks for the inspiration and clarity and hope re the future (and a ringside seat in the spaceship)!! Go well & keep in touch (occasionally 🙂)- all the very best!
Thanks Mick and thanks for all your support – may you not need treatment for many years and when/if you do know that there are so many options available now (your other half is pretty much stuck with you! 😜). I’ll keep updating over the next few weeks – particularly my tips for bone marrows on Oct 19th and results day on Oct 22nd
I receive my car-t injection tomorrow. I hope my journey is as good as yours. Best wishes
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How are you going Philip? Must be around day 5 by now. Thinking of you x
You look great on the video
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So happy for you! This is great news! I learned something new: I didn’t know that CRS can come in waves, I thought it was one and done. Fingers crossed that you are done with the difficult part and its smooth sailing from here.
As for me, we made the decision that I’m staying on Ven and not doing the CAR-T trial at this time, but I know CAR-T is in my future so this blog is so helpful for me. Thanks again for documenting your journey!
My pleasure Jennifer and I’m sure there will be plenty of options for you in future too. Venetoclax is such a good drug and I got 4 years out of it and I’m sure you will too (at least!).