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.
abtandmedotcom 
I read your previous update just after it came through around midnight Melbourne time. And I think I wrote and deleted and wrote and deleted until about 3am. I couldn’t find the right words and didn’t want to send some greeting card platitude – so I didn’t reply. And tonight I’ve just read your recent post – and still feel unable to communicate what I want to – and if I finally found the ‘key’ my response would probably be book length.
So I’m just going to respond from this very moment – as would a small child – and say that you look stunningly gorgeous in your off -the – shoulder elegant hospital gown.
💕🦋
LikeLike
Thanks loitering! I’ll take whatever I can get at this point – I have been without sleep now for 48 hours and last night I was very much in the mindset that this isn’t fun anymore, stop the bus I want to get off! Hopefully without pain tonight I’ll be able to get some sleep between the checks – very grateful to be having them – was scary how quickly I deteriorated when the fever came. Was very much like very bad flu symptoms with someone doing bone marrow biopsies on every part of my body with no anaesthetic – yes I think that describes it best!
LikeLike
Loiteringblog can I just endorse these comments please. It is something else to simply be able to read about this brave and breathtaking journey
LikeLike
You’re too kind Mick – another friend (Mike) who saw the photos wrote to me saying “mormally I do my very best to compliment ladies on their appearance but your photo left a bit to be desired with respect to my endeavours in this regard. I’d go as far as to say that you wouldn’t make a great deal in the Marrakesh Slave Market looking like that” – I love this too! I’m pleased the additional drama made this blog a bit more noteworthy but I’d be very happy if that’s as much as you get!
LikeLike
May sleep visit you tonight
LikeLike
Hi my name is Phil I am English but live in France. I have had mcl for 6 years and been through the ringer with treatments all of which failed at some point. I was offered car-t a few weeks ago and though it scared the daylights out of me I feel it is my final option so bring it on. It is hard to believe what you are going through and still write a blog that is informational but has great humour. When I am going through my treatment I will keep your inspirational words in my head. Keep on going you give us all hope.
LikeLike
Hi Philip – what a small world we live in when I find myself talking about CAR-T for MCL on the other side of the world with my specialist. Michael Dickinson is very excited about this and it’s wonderful you’ve got the opportunity. That 24 hours of CRS from Weds through to lunch time yesterday was not fun but, even going through that, it’s good to know it’s working. Thanks for the comment, I’m pleased you’re finding the blog helpful – it’s giving me something to do and will be a good record for the children when they’re old enough to read it. Just needed a bit of drama and Wednesday certainly gave it that. Feeling much better this morning having had lots of sleep in one and a half hourly increments. Yesterday my doctor said my bloods were looking better than I was! Waiting for the consultants to do their rounds this morning and hoping for a uneventful weekend. Good luck with the preparations – I found the anxiety eased completely after the infusion (frankly there was no going back at that stage so couldn’t worry about it any more!). Exciting to think this could be curative. Let me know how you go!
LikeLike
Very brave , keep your spirit up , thank you for sharing! Good Luck !
LikeLike
Thanks Bram – doing my best! Feeling 100% better today but closest I’m going to get to the outside on this beautiful Spring weekend in Melbourne is the view from my window. In here until at least Monday (and then only if I’m good!).
LikeLike
I remember blogging: Wish me ill. Well we both got our wishes. The CRS is a good sign that the killing spree was begun. The higher the T cells rise, the deeper and more durable the remission in general.
LikeLike
I have gone back to your CAR-T blog so many times over the past few days Brian – was great to read what Paddy wrote on Day 15 – 18 and helped me understand that this is pretty standard – has been comforting!
LikeLike
Praying in America for you…having followed some of your history over the last two years on venetoclax.
LikeLike
Thanks Olivia – all prayers much appreciated! Hope you’re well x
LikeLike
Hi Deborah, I just wanted to thank you for doing your blog despite how this treatment must be all encompassing for you. It has opened a door in my mind and hopefully in more ways as I’m almost at the point of requiring an Allogenic Stem Cell transplant. I’ve had a similar CLL journey, probably a bit behind you so to speak! I kept reading about Car T before I found your blog and I couldn’t stop reading about it and thinking why weren’t they using this instead of or at least before STC. I live in WA and unfortunately there are no trials here for CLL, however my Specialist was open to the idea of “scouting” interstate hospitals to see if there were any suitable trials. I just want to thank you as reading your blog gave me the courage to speak up and actually ask my specialist rather than be told what is happening with my treatment options. All the best, I will continue to follow your journey and keep my fingers crossed that it is extremely successful for you. All the best Billie 🙂
Sent from my iPhone
>
LikeLike
This is the only trial for CLL in Australia and I believe there are still a couple of spots left – you have to have poor prognostic markers and be stable on ibrutinib for 6 months before they’ll screen you – I actually went onto ibrutinib to get onto this trial. Definitely ask about it. There is always the option of transplant afterwards which is definitely a harder road. Hoping I’m through the worst now and if it ends up with just being 36 miserable hours then this will be by far the easiest treatment I’ve had (and it’s potentially curative!). Thanks for your message Belinda – good luck with your treatment decisions.
LikeLike