So let’s do a quick flashback of the past 3 years. I left you with all going well at the 24 month review on the trial but with the growing awareness that resistance was being seen with venetoclax and I wasn’t sure how long it would keep working for me – this was probably the point that I decided to get on with living my life and stop oversharing on this blog – I knew I’d be back here at some point and I stayed helping patients who reached out to me in the background.
Actually rereading those last couple of posts was quite foretelling of what is happening now and it’s such a blessing that my wonder drug venetoclax has brought me to a potential curative treatment which isn’t an allogeneic transplant (if this doesn’t work then I’m pretty sure that’s where I will head, and knowing my luck, it will go well and I’ll wonder why on earth I didn’t do it 8 years ago when it was first recommended!).
So over the past 3 years a lot has been happening and if you google me you’d find a lot of the patient advocacy work I’ve been doing with Lymphoma Australia and the Leukaemia Foundation and my foray into medical journalism with Brandcast Health and VJ Hemonc. This has seen me cover medical conferences in Norway, Sweden and the US.
I had my last trip to London in April 2018 before my clinical trial closed and I caught up with John Gribben and my nurses Martina and Sam before bringing a 3 months supply of the drug home on the new marathon non stop 17 hour Dreamliner flight from London to Perth. I was so proud of us all for managing to keep me on trial all the way through giving the scientists the data they needed, and me the drug that was saving my life, despite the huge distance.
I was also very grateful to be given compassionate access to venetoclax here which meant that, after 2 and a half years of commuting, I had the very emotional experience of Con Tam writing a script and me picking my drug up from the Peter Mac pharmacy in my lunch hour from work.
But, just in case I wanted to relax at this point, life had other plans and ironically it was the blood test at that appointment which showed my disease was returning after almost 2 years of no detectable disease. So, as I has long feared, resistance began developing and I stayed on therapy with bimonthly monitoring to see how quickly I was relapsing.
In February 2019 Venetoclax was listed on the PBS and made available to approximately 450 relapsed patients who found themselves in the situation I was in in 2015. I did a press conference at the Walter and Eliza Hall Institute with the Federal Minister for Health Greg Hunt MP – it was one of the few times I had the children join me as we were all so grateful for the work he and the government had done to make this treatment available…in fact over the past 18 months alone 4 drugs have been listed on the PBS for CLL patients in Australia and the Peter Mac was also given the funding to become the country’s first CAR-T centres, without that I wouldn’t be on my trial.
Sadly at that point there was just too much of my leukaemia rearing its head and my doctor Con Tam suggested we do 4 cycles of the immunotherapy drug rituximab to try to help venetoclax regain control. I did this one day a week for a month and it did buy me a few extra months of my disease being knocked back but by the September my MRD (minimal residual disease) started rising again and it was time to start making other plans.
I was suppose to be going to Edinburgh for the CLL Advocates Network meeting and cancelled that, as I had also had to cancel Prague the year before, but was desperate to go to Orlando for the American Society of Haematology Conference in December and combine this with a trip to New York with my middle son who was turning 13 (his older brother, if you remember, had a trip to Rome for his 13th so I’d established rather an expensive precedent). I came off venetoclax and headed to the US with the plan being that on my return we would put me on ibrutinib and bridge me to CAR-T – more on that in the next post!
At the same time I was given the honour of being asked to join the National Blood Cancer Taskforce as the only patient on the panel.
In the time I’ve been on the taskforce, I’ve relapsed on my clinical trial drug for which I had to travel overseas before it was listed on the PBS, have been bridged on another drug which didn’t exist when I was diagnosed and was only listed on the PBS last year and am about to become one of the first patients in Australia to have CAR-T for CLL in a phase 1 clinical trial of a brand new version of the drug at my home hospital. I’ve certainly lived the work the taskforce is doing over the past 12 months!
Quite the news update and that’s before I talk about all the personal stuff, I bought my first house, started a new business and the children are thriving – they’re now 16, 13 and 10 and life is good despite being subjected to world’s longest Covid lockdown here in Melbourne. We’ve had lots of great times, that I wouldn’t have had had my 5 year survival prognosis had come true and I have a wonderful partner in my life who is having to step into a full time carer role and the kids father has taken on full time parenting again so it’s really challenging for everyone. I’m blessed to have good friends in my life to help at this time too.
But now back to sitting here at the Peter Mac – it’s day 3 of chemo and day minus 4 in the countdown to my CAR-T infusion. I have to say this has not been a picnic, maybe it’s being 7 years older than when I last had chemo, or maybe it’s the fact that the “bear” is having to flatten me when I’m actually pretty well – another novel therapy “ibrutinib“ has done a fantastic job bridging me to this, but I will be very very pleased when today is done and I get the weekend to recover at home. And it’s the little things that make a difference – the canula put in on Wednesday by the nurse was so good that I managed to look after it and keep it for 3 days so was only stuck once – hurray for Sunny.
Tomorrow I shall tell you about the miracle that is CAR-T and why I’m optimistic this could be my cure and is worth what I am currently going through, and will go through over the next few weeks.