I skipped the blog yesterday because nothing is really happening…although I did twitch briefly before I fell asleep last night and woke up with a growing like pain in my right femur this morning and now a twinge in my upper left femur. I’m used to side effects with ibrutinib but they tend to be painful joints and random bruises so this is different and very minor but have been reported in trials as Cytokines rise which gives me hope my living drug is expanding as it should. I’m not sure when the reengineered T-Cells might start showing in my blood but I had a test on Monday and I hope I’ll get the results when I see Michael Dickinson on Friday morning. I was expecting heavy fatigue by now but I feel completely normal and would go back to work if I was allowed – instead I’m forcing myself to rest even though I don’t feel I need it.
The key date for me will be 20th October which is day +28 and I’ll have a bone marrow biopsy then to look for any traces of CLL. The results will be given two days later and I’m hoping they will show there is no detectable disease.
If things continue as they are, so boringly uneventful I’ll just update this every couple of days – next update will be after my appointment on Friday on Day +11. If something does happen that puts me back in hospital this will be updated by my sister so please don’t think no news is bad news.
Meanwhile I’m feeling better than I have in ages, not having the worry of preparing myself mentally for CAR-T has made a big difference and I’m so relieved. This is an interview I did with Director of Nursing Donna Gairns last week for Lymphoma Australia while I was in the Peter Mac which really explains how difficult the mental and emotional side of things has been so if you are heading down this path make sure you have someone on your medical team taking care of this side of things too.
Ooh just had lunch and noticed my jaw is now starting to hurt – I’m imagining those t-cells travelling around my bone marrow wiping out cancer cells throughout my body – how exciting!
I’m boringly well, really well. Sorry there’s not a bit of drama – although I should be careful what I wish for.
I had a blood test, ECG and saw Con Tam today. He’s very happy with how things are going. Only had the temperature issue to report. He says if I’m going to get side effects it will be in the next 14 days but they’ve seen patients do well with no side effects too so I’m not to worry if I stay as well as I am. Next appointment not until Friday on Day 11 when I get to see Dr Michael Dickinson whose trial this is.
Just caught up with my friend Charlie in London again who recorded this for me if you want to see if I’m still able to string a sentence together or can even pronounce schaudenfreude correctly!
Almost feel Bridget Jones like documenting that it’s Day 6, I’ve lost 4 kilos (not telling you my starting weight though!) and have had a very healthy day of eating. Not a gin and tonic in sight – and it’s been a while on the alcohol front too. The temperature deregulation of yesterday has disappeared and I got to spend a few hours with my children today and it was quality time playing board games and baking bread (iso continues)
I also showed them the cognitive tests I’m doing 3 times a day. Cameron (16) and I shared the same baseline but Marlowe (13) shocked us both by hitting it out of the park – my baseline for the biogen app is 65 – I’ve managed to get up to 73 symbols numbered correctly in a 2 minute period but Marlowe did 95 on his first attempt having only seen his brother doing it once. I asked him how on earth he had done that and he said “it was easy Mummy I just memorised the key” (that’s 9 numbers and their relevant 9 symbols – I had no idea he could do this).
I hadn’t noticed it until this afternoon but now I look at the photo from yesterday I must have been feeling it on my walk yesterday as I only wear gloves in the depths of winter or up at Mt Buller when the children and I go skiing but I’m running cold. Very cold and that’s not normal for me. I normally can’t wear anything to bed and sleep with just a sheet, I have been known to have the window open even on the coldest of nights (something I attribute to growing up in the north of England). But now I’m cold and I’m so cold that my right hand feels like I’ve got frostbite so I’m wearing my leather gloves inside (thanks to my 13 year old son Marlowe who bought these for me with his own money). I also put a photo above of a key ring Natasha asked my 16 year old Cameron to order for her from England for my birthday from Etsy. I’m wearing thermals, a fleeced sweatshirt and ski fleece on top – I am seriously cold but not shivering and my toe on my left foot decided to start tingling an hour ago but that’s now stopped thankfully. My temperature is still 36.3 so there’s no need to head back to hospital just yet.
I’m excited because at least it means something is happening – I am feeling better than I have in a long time – the chemo last week must have done a hell of a job on whatever little disease I had left in my bone marrow and now hopefully I’m getting a little bit of manageable Cytokine Release Syndrome – a little bit wouldn’t be too bad – here are a couple of papers on what would happen if I get too much:
I don’t think I need to call in to the hospital just yet but it means I need to keep an eye on things – and perhaps the 7km walk I did today around the gardens after the 5km one yesterday was pushing things a bit – I just feel so well it’s invigorating. My patient friend Lynn who has kept a watchful eye on me from her home in Hawaii has warned me to slow down and rest and she’s right – this isn’t the time to do too much. With that in mind I’m going to start getting these posts proofed before I post just in case I’m not aware I’m speaking gibberish (once again some might say I often do).
My hospital bag is packed and by the front door and I’m organised if we need to go quickly. I’ve done all my neuro tests and I’m still fine and Nicholas thinks it’s funny to include questions such as who was the lead guitarist in Led Zeppelin. In the meantime I’m going to have a rest and watch the rest of my Octopus Teacher on Netflix which is simply stunning.
I’m feeling the best I have in ages today – no muddle headedness at all but I’ve just checked my chart and it seems that today is day +4, Monday is day +7 which means there was no day zero – infusion day was day 1 so somehow I’ve lost a day (I had this a lot on my last trial but that was because I was travelling backwards and forwards from Australia to the UK, not because I can’t count!). I’ve also just calculated that day 101 will be New Year’s eve so, all going well, there will be a massive party for however many of my friends I’m allowed to have at home at that stage under the Covid restrictions – you know who you are!
The last meal of the condemned woman on Monday night, which now appears to be day zero or day -1 (depending which way you count this), was a high quality Australian wagyu beef burger while watching that age old tradition of seeing my Australian Football League team Collingwood lose a game it needed to win to do well in the finals series.
And today is going home day +72 hour bloods for the trials unit, see the doctor, another ECG and a visit from the neurologist and I’m out of here. I have to say it’s felt like a bit of a holiday after 8 months in lockdown and I highly recommend it to others – the food is superb, the care is second to none (I’m being looked after by 13 specialist teams) and check out the architecture
I also love that the Peter MacCallum Cancer Centre is a teaching hospital – Lucas was taking bloods for the first time today and did mine. He’s about to graduate with a Masters in Nursing – a 2 year course from the University of Melbourne. All the students I saw over the past few days were so professional and a credit to their teachers and I had no problem including them in my care. It was wonderful to see them learning and the culture at the Peter Mac is superb – so positive.
I had a great experience with so many different nurses looking after me including Aideen this morning who is one of the many Irish nurses who have been sponsored to work here – just so warm and caring. Nurses like Rebecca also pictured here made the experience really pleasant. If they’d just stop stabbing me I’d give this place a 5 star rating on Wotif! Everyone wanted to be on the blog which was nice – they appreciate that this is all part of the learning experience for post CAR-T treatment and I’m still surprised that I’m well enough to write (I may have to come back and tidy this up at a later date!).
I also caught up with the kids who are equally relieved – I’ve enjoyed my 10 year old’s music list she put together for me on Spotify to listen to.
I am excited about going home but Nicholas is concerned I’ll get sick on his watch. We have this card if we have to come back with a fever or frankly if anything changes. My details and the trial number and pharma company are on the reverse.
They’ve asked if I do need to go to an Emergency Department I go to the Royal Melbourne which is next to them and still only 20 minutes from my home as they know about CAR-T and will proceed correctly. The main thing is that unless I am actually dying I mustn’t be given steroids as they would kill the T-cells and it also mentions the drug that they can give me if I start showing signs of neurotoxicity. All very sobering but I’m at risk of this until about day 28 and most at risk around day 11.
I’ve also just bought a medical alert bracelet with those details -and signed up to www.medicalalert.org.au
Update – Dr Roberts Akhter is happy with my cognitive test (actually got my best score yet – baseline was taken on Monday when I was still recovering from chemo). Monette the pharmacist came and talked me through all my meds – I stay on a morning dose of allopurinol, Bactrim (antibiotic), valtrex (shingles) and now an antifungal med and take my ibrutinib at lunchtime – that has now been reduced from 3 tablets a day to 2 because the anti fungal medication interacts with it and makes it more potent. I’ve bought a range of pill boxes in the past but this one is by far my favourite and I definitely need to it to manage all this.
Dr Tom Lew has been to see me – my bloods are very good and have improved since these taken yesterday – now I’m not even neutropenic.
So now I’m home on what we’ll now call day 4 (3 days post infusion) when I thought I might be in intensive care – I wish I’d had a crystal ball to know I was going to feel so well, like better than normal and I wouldn’t have been so anxious or choked up when I spoke to my children and my mother for the last time before the infusion. This afternoon, before the rain came, I went for my regular 5km walk around Melbourne’s tan with Nicholas who took this photo.
I know things could still go downhill when the cells grow but at the moment I’m enjoying how well I feel. I’ll continue eating the 6 very small high protein style meals the Peter Mac was feeding me (think an egg on toast and rasher of bacon for breakfast, fruit for morning tea, tuna sandwich and small bowl of soup for lunch, fruit and yoghurt for afternoon tea and something like a minestrone soup, beef stew with lots of veg, jelly and ice cream for dinner). I was eating small portions but so much more than usual and this is apparently because my body has much higher calorie needs at the moment. Despite that I still managed to lose 3 kilos – thankfully iso means I have more than that to lose but they don’t want me to lose too much weight at the moment so I’ll keep eating well and exercising and see what happens. Weight loss is another sign of cytokine release syndrome and it’s common for CAR-T patients to lose up to 10 kilos after the procedure. I had a visit from the nutritionist which was really helpful and she said if I don’t eat enough I’ll just start losing muscle and they don’t want that so I’ll eat well, drink lots of water, exercise and take all my drugs at the right time of day – I’ll do my part and I just pray my mutant cells are doing theirs.
Can’t put my finger on it but just slightly off today – not sick and no fever but having to concentrate hard to do even simple tasks (like remembering how to switch my ipad on). It’s as if I’m hungover. I was woken 3 times in the night for obs, which makes me a bit sleep deprived so that could be it, but part of me is actually hoping that it’s the start of a little bit of CRS so we know the cells are working and that syringe wasn’t just filled with saline (this is a phase 1 test by the way which means I’m guaranteed that it wasn’t just in case you were worried but in phase 3 randomised trials sometimes a placebo is used but never anything less than standard of care in Australia – they won’t not treat cancer patients ever who actually need treatment in trials – standard/current treatment is randomised against novel therapies in the final phase before a drug is approved and needs to show additional benefit to current treatment to be funded).
Before my 3am blood pressure and oxygen saturation monitoring I said to the nurse I could smell smoke which seemed like a weird side effect and she took her mask off and could smell it too. She checked and reckoned someone must have had a sneaky cigarette somewhere on the ward and it had filtered into my room…part of me thinks good on them – I gave up smoking at 30 before I had children, and I was a pretty pathetic smoker too – only started in my 20s as a young reporter to be part of the cool kids, but things are pretty grim in here and if it’s making someone feel better I reckon go for it. I have, however, told my children smoking could be one of the many reasons for my leukaemia so I hope they never smoke (got to use it for something!).
With that in mind I’m seeing this as a bit of a detox for me (ironically given how many drugs are being processed by my liver) but, like so many of us, I was drinking too much in lockdown (and we have been in the world’s longest lockdown here in Melbourne, still are). This is a real circuit breaker, the food here at the Peter Mac is amazing – I believe they only have around 60 inpatients in total throughout the whole hospital so that does count for something but my compliments do go to the chef. I’m on a high protein diet and even the veggie dishes are great (my vegan friend Brian Koffman, who is getting a starring role in this blog for good reason would approve!). I’ve also just spotted that I received my CAR-T cells exactly to the day 30 months after he was one of the very first CLL patients to have this treatment. They’ve learnt a lot since then about managing CRS and neurotoxicity so like so many he has paved the way for others and my trial and the data they glean from this will help too. I’m hoping this trial might lead to a change in the treatment paradigm whereby patients receive this earlier in their disease when they’re well and more able to tolerate it rather than living with CLL on drugs and it becoming progressively harder to treat. I think one day it could even be frontline, you’re diagnosed with the aggressive form of this disease and your t-cells are harvested, genetically reengineered and then given back to you as a simple one of infusion that cures you a couple of months later – how good would that be?
I’ve given up coffee since chemo I haven’t been able to stomach it and I’m trying to walk around the ward as much as possible because I don’t want to be stabbed with that painful injection to stop clotting in the stomach again which they did here on my first night – seriously the worst thing I’ve had done to me this week and the bruise is horrible. Oh and I’ve just ordered a Bluetooth blood pressure monitoring cuff and oxygen sats device for my finger so I can play doctors and nurses at home (and my carer can be both!).
A bit shorter today – I may update later but wanted to get this in early in case this is the beginning of CRS and things start going south (I might of course feel much better after a nap). I still passed all the cognitive tests but I really had to concentrate, dropped my tablets and my left hand just feels a little bit slow…watch this space.
Update – 1112am – the ward doctor Thomas Lew has been on his rounds with a Consultant and thinks I’m doing well, my bloods are good, and I passed all the tests. He thinks it’s too early for neurotoxicity with my particular CAR-T (they’re expecting it more around day 11) and he let me go off the ward to get this:
Definitely not the time to do a coffee detox! Which reminds me of this a friend sent to me earlier this week which will make you laugh.
Aside from 3am obs I slept surprisingly well – fitful dreams but nothing like the chemo delirium earlier this week when I spent a whole night dreaming I was Kamala Harris’s chief of staff in the run up to the US election – as if I didn’t have enough to do at the moment!
The whirr of the aircon in my sealed room overlooking the Royal Melbourne Hospital reminds me of being on a plane and all those trips to London for my last clinical trial – have I said how immensely grateful I am to be having this here?
I’ve always loved a test and on Monday I saw the Neurologist Fellow Dr Roberts Akhtvar who put me through an hour of cognitive testing…think Mensa meets Countdown for my UK friends and pick a word for the Australian ones – “I’ll have a P please Bob”. Here’s a sample of the kind of test I was put through.
And more can be found here if you’re a glutton for punishment (with a note to my Mum not to try these herself):
The reason being there is very little data on the long term effects of neurotoxicity in CAR-T. This week data was published by the University Pennsylvania explaining why this neurotoxicity happens even in patients with very little disease. The CAR is programmed to target CD19 and there is a small population of cells expressing that antigen in the blood brain barrier. For science boffs here is that paper:
When the consultants did their rounds this morning I got to meet Mary Ann Anderson whose impressive body of published work I have read in full over the past few years but whom I have actually never met. She is one of the leading investigators into venetoclax resistance and I saw her initial data being presented at ASH in 2017 which is when I became aware that venetoclax might not be my cure. I’m pretty sure I’ve donated cells to her lab at the WEHI too.
Dr Anderson discussed the news to me that my latest testing showed that I have now developed 2 other chromosomal abnormalities which means my already poor prognosis disease is evolving which is possibly why it became resistant to venetoclax and may well become resistant to ibrutinib in the not too distant future (my words not hers). All that with the real risk of Richters hanging over me (a transformation to Diffuse Large B-Cell Lymphoma which is aggressive and very difficult to treat).
I really anguished over the decision to have CAR-T at this time. There is very little long term data as to what happens to patients who relapse on venetoclax and how long subsequent therapies will last. One of the most recent papers was actually published by the Peter Mac and again Dr Anderson is one of the lead authors along with the doctor looking after me on the ward this week Dr Thomas Lew – remember the name – the force is strong with this one…I took a photo of us but I’m sure this won’t be the last time I see him (hopefully this is my cure and the next time will be at a haematology conference rather than being his patient!).
Here is that paper which is also co-authored by my own doctor and one of Australia’s leading internationally recognised CLL specialists Professor Constantine Tam who called in to see me before he went off to clinic
See how seriously good my team is here in Melbourne?!
The fact is I had a very deep response to venetoclax and ibrutinib also gave me a deep response but I couldn’t run the risk of relapsing on drug again and not having another good option to jump to. The worst time to have an allogeneic stem cell transplant is as salvage treatment and I get bulky disease so getting that under control could be difficult. I know CAR-T is very new and cutting edge but I fancied my chances with this treatment much more than with transplant. And having it first doesn’t rule out that as an option in the future.
In an ideal world I would have been able to stay on ibrutinib for the next couple of years and the kids would be even older before I went for a curative, but more dangerous option. But there is little chance that there would be a CAR-T trial at my local hospital for CLL that will be open to me at just the right time and it’s unlikely it will be approved and funded for treatment by the time I need it so the only way I could get CAR-T was to act now – as Brian Koffman says we have to make decisions on the basis of imperfect information and this would never have been an easy decision to make.
I’ve been feeling that for the first time in my life I have been truly brave but have also feared I was being somewhat reckless with my good health – getting the results today which showed my disease is quickly turning into something that will become untreatable (what a smart cancer it is) makes that decision the right one. Now let’s see if CAR-T can work its magic. I’ll know in as little as 28 days.
But back to the brain stuff – now as part of my program of routine observations I’m doing an ICE assessment (that stands for Immune effector Cell-associated Encephalopahy). Here’s the sheet for that – one of the first signs is deteriorating handwriting.
Dr Roberts Akhter from the Royal Melbourne Hospital also has me doing this iPad app test he uses to help track cognition in MS patients. You can find it on the AppStore by looking up Biogen CogEval – it only works on iPads (and not mini iPads for some reason)
What I like about it is it gives me some control and reassurance outside the obs periods – I truly do feel a bit like a ticking time bomb and when I get a score just by doing this 2 minute speed test which is in my normal range it comforts me. And I have a sheet of paper to note the time I did the score and my result so that data can be tracked. And there’s a lot to this – I am, if you hadn’t noticed, a bit of a type A control freak – I can’t help it, I’m the eldest of 5 girls and it’s just built into me. I’ve given up control in treatment before – we have to but it’s always been driven by the data (as the Victorian Premier would say, seriously Kamala Harris now quoting Daniel Andrews – what is happening to me?!). There is no data with this version of CAR-T though, as Mary Ann Anderson said to me this morning, minus the Darth Vader style heavy breathing, “you are the data”. I really have had to put my life into the hands of hundreds of brilliant scientists on the other side of the world and my excellent doctors here. As that syringe was gently squeezed into me yesterday I was just hoping no one was having an off day when my cells were made, that they’re perfect and my genetic modification lets me be Captain America instead of the Incredible Hulk.
Thanks Charlie!
And my friend Charlie Grieve from Brandcast Media just had a chat with me on Zoom from London which we recorded and he sent me this cartoon. I may start “vlogging” but let’s see how the next few days go but if anyone wants to see how little I’ve been impacted 24 hours apart from the bags under my eyes and Covid lockdown hair here’s that recording for posterity -I hope it gives some reassurance to others making this decision with the caveat that it’s early days and everyone’s disease is different but I know this would have helped me over the past two weeks as I counted down to Day Zero and I feel far better now than I did having the lymphodepleting chemo last week.
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.
I’m exhausted today still recovering from the aftermath of chemo’s carpet bombing but I wanted to tell you all about what is going to happen tomorrow and the best description I’ve come across is from the prestigious National Institute of Health’s website so please forgive me for plagiarising their words here (but at least you know it’s well sourced!). More, for those who want it, can be found at www.cancer.gov
For years, the foundations of cancer treatment were surgery, chemotherapy, and radiation therapy. Over the past two decades, targeted novel and often oral therapies, drugs that target cancer cells by homing in on specific molecular changes seen primarily in those cells—have also cemented themselves as standard treatments for many cancers. That was what led to venetoclax (targeting BCL2) and ibrutinib (targeting BTK) – the two drugs which have helped me to reach this point.
But over the past several years, immunotherapy—therapies which enlist and strengthen the power of a patient’s immune system to attack tumors—has emerged as what many in the cancer community now call the “fifth pillar” of cancer treatment. I’ve also had two of these treatments already both rituximab and obinutuzimab – two monoclonal antibodies which, as I describe to my children, put tails on the dodgy cancer cells and force my asleep-on-the job immune system to finally kick into gear to kill them.
However a new rapidly emerging immunotherapy approach is called adoptive cell transfer (ACT): collecting and using patients’ own immune cells to treat their cancer. There are several types of ACT but, thus far, the one that has advanced the furthest in clinical development is called CAR T-cell therapy.
Until recently, the use of CAR T-cell therapy was restricted to small clinical trials, largely in patients with advanced blood cancers. But these treatments have nevertheless captured the attention of researchers and the public alike because of the remarkable responses they have produced in some patients—both children and adults—for whom all other treatments had stopped working. If you want to see something that will really make you cry watch this video featuring Emily Whitehead – the first child ALL patient ever to have CAR-T and featuring the doctors who transformed its use
In 2017, two CAR T-cell therapies were approved by the Food and Drug Administration (FDA), one for the treatment of children with acute lymphoblastic leukemia (ALL) and the other for adults with advanced lymphomas (DLBCL). Nevertheless, researchers caution that, in many respects, it’s still early days for CAR T cells and other forms of ACT, including questions about whether they will ever be effective against solid tumors like breast and colorectal cancer.
And in January this year one of those CAR-Ts was approved here for lymphoma patients
I just happened to be at the Peter Mac for the press conference for work and ended up featuring in the story on behalf of blood cancer patients – little did I know I would be having this treatment in a trial only 6 months later.
CAR T cells are the equivalent of “giving patients a living drug,” explains Renier J. Brentjens, M.D., Ph.D., of Memorial Sloan Kettering Cancer Center in New York, an early leader in the CAR T-cell field. As its name implies, the backbone of CAR T-cell therapy is T cells, which are often called the workhorses of the immune system because of their critical role in orchestrating the immune response and killing cells infected by pathogens.
The therapy requires drawing blood from patients and separating out the T cells which is why on a cold July day I was in the Peter Mac having my T-cells harvested in the apheresis unit after extensive screening for a brand new clinical trial of CAR-T for CLL, the only one in the world that I would currently be eligible for and one that was at my local hospital rather than on the other side of the planet with 10 places available for patients with a poor prognosis who have been on ibrutinib for 6 months with stable disease. As far as I’m concerned if ever there was a sign that I should be doing something it was this.
The harvesting itself was an incredible procedure where a large (don’t look) needle was put in a vein in one arm, the blood siphoned through a machine which looked like a washing machine and then returned to me minus the T-cells they needed. The Senior haematology nurse who performed this procedure was constantly adjusting the machine to get the right number of cells – it was fascinating. The whole thing took 3 hours, was uncomfortable and a little unpleasant but a rather small price to pay for what comes next.
I received a phone call from James in the lab that night telling me that they needed 1 million of one type of cell and got 1.95 million and 2 million of another type and got 3.26 million (I was still a bit groggy but that was as much as I understood!). Funny that of all these photos taken on the day my kids liked the esky best – they liked the Hazard label! So that was back in July and, in the middle of covid lockdown, my cells winged their way to the US to be genetically engineered using a disarmed virus to produce receptors on their surface called chimerical antigen receptors, or CARs. These special receptors are synthetic molecules, they don’t exist naturally, but they allow the T cells to recognize and attach to a specific protein, or antigen, on tumor cells. And in my case they will target an antigen found on B cells called CD19 . Once my collected T cells finished being engineered to express the antigen-specific CAR, they were “expanded” in the laboratory into the hundreds of millions and that is what took place on my manufacture date which was August the 14th in a lab thousands of miles away.
A vial of precious cells arrived back here last week (an approved version of CAR-T in the US costs upwards of $500k so I am incredibly grateful for this trial and the fact, in Australia there is no cost involved for me). The final step happens tomorrow – the infusion of the CAR T cells into me (after a “lymphodepleting” chemotherapy regimen has been completed – boy did I tick that one – I’d forgotten how grim chemo is!). If all goes as planned, the engineered cells will further multiply in my body and, with guidance from their engineered receptor, recognize and kill cancer cells that harbor the antigen on their surface – and if they get the very last cell my incurable cancer will once and for all be cured! And that’s what I’m focusing on tonight ahead of my infusion tomorrow.
There is substantial risk with this procedure – I’ve lost a good friend within hours of her infusion a couple of years ago, there are neurotoxic side effects and it’s not going to be a walk in the park but I don’t want to dwell. What I will do though is share a couple of interviews I’ve done on the subject. One with my good friend Dr Brian Koffman whom I interviewed in Stockholm only 10 weeks after he had his CAR-T procedure and made it to the European Haematology Association conference there. And one with leading CAR-T researcher Dr Tanya Siddiqi who is running a trial for CAR-T in CLL at the City of Hope hospital in California – it was the interviews with her over a couple of years which have driven me most to try to get this treatment at a stage in my disease when I am most likely to survive it and benefit from it but more on that in my next update.
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.
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