A weekend at home

Day +18 – Friday

Just a quick update to let you know all is well. I had a check up at the Peter Mac yesterday and they’re happy with my progress. Didn’t get any fresh blood results but they took more and are monitoring those lymphocyte changes. Hoping when I see Professor Con Tam on Monday afternoon for my next check up on Day +21 I’ll have more information about that. Then it’s just a week until we’ll know for sure when I have my bone marrow biopsy and CT scan on Day +28. It’s amazing to think I might be in Complete Remission from a one off infusion and find that out just 4 weeks later. I’ve had constant treatment for 6 of the past 9 years so a chance for an end to that would be a gift.

CLL was the first disease which CAR-T was experimented on in trials and some of the patients from the early trials are now 9 years out with no detectable disease. But the early trials showed only a 25% response rate and the CAR-T scientists moved onto concentrating on childhood ALL and Diffuse Large BCell Lymphoma where it had better response rates. The theory being that CLL patients are often heavily pretreated before they get to CAR-T and the disease itself does a job on our T-Cells so even when they’re reengineered they are so exhausted by the time they’re infused there is only a 50/50 chance of it working even with today’s newer CAR-T products. My CAR-T is yet an even newer generation – the T-Cells are younger, trial patients don’t have to have failed a stem cell transplant and we’re not so heavily pretreated. One day soon once it gets FDA approval this CAR-T may even be manufactured in Australia thanks to Federal Government Funding and our Health Minister Greg Hunt who has done so much for blood cancer patients. It means that those with aggressive blood cancers won’t have to wait for the cells to be sent to the US and back which takes time many don’t have. Bridging chemo often has to be used while that happens and that affects outcomes too.

More on the history of CAR-T can be found here

https://content.sciendo.com/configurable/contentpage/journals$002fahp$002f51$002f1$002farticle-p2.xml

For the past 10 months I’ve been on a drug called ibrutinib which I’ll continue on for the foreseeable future. As you’ll see from the paper below (which I think I may have already shared). Ibrutinib which has bought so many people time appears to have a synergistic effect with CAR-T therapy and one trial reported an overall response rate above 80% and the frequency of complete bone-marrow response with undetectable disease exceeding 90%. This is incredibly exciting and potentially curative. The deeper response, the longer the remission and if those CAR-T cells causing all sorts of weird pains all over my body at the moment kill the very last cell I’ll be cured, but we’re years from being able to say that and I’ll just be beside myself with happiness if I find out I have no detectable disease in 2 weeks time.

https://jitc.biomedcentral.com/articles/10.1186/s40425-019-0686-x

It’s my hope that my participation in this trial helps expedite this CAR-T’s FDA and MSAC approval for other CLL patients. It’s always better to be the 200th patient than in the first 20 but, hopefully I might just get lucky. I certainly won’t take it for granted and last week really scared me. I’ve likened it to the trauma of labour – you do forget (until you get pregnant again!) and it all happened to quickly and it was out of my control. I still have bone pain but it seems to be remitting and I’m not having to take so much paracetamol – it does impact my mood somewhat but being at home this weekend with the kids will help with that.

6 thoughts on “A weekend at home

  1. You are bloody amazing! I had what I call a long week wit the grandkids and I’m on the lounge with a class of red (& the footy!) while you give a history of CAR-T complete with references 😊!!! Love your work, example, guts and foresight!! No footy in Melb?? Wishing good news for you (and us!) -go well!

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    1. About to start watching St Kilda and Richmond – barracking for Richmond tonight and my own team Collingwood tomorrow night. Just nice to be home and kids all pretty much doing their own thing, apart from my daughter who is demanding lots of attention to make up for what she’s missed out on this week! Mummy needs a rest already. Trying to balance being fun with not wearing myself out further otherwise you’re right it will be a very long weekend!

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    1. Thanks Mel. Kids are in the pool. I don’t know how they’re doing it – it’s freezing! I’m on the sofa watching them but did spend an hour cleaning it which was exhausting. Fitness levels have definitely taken a beating – not that they were that good to start off with 🤪 hope you’re having a lovely weekend x

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