You are the Data

Day +1

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.

Day Zero

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.

The magic of CAR-T

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

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.

3 years in 3 minutes on day 3

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! here

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.

Chased by a Mountain Lion

Putting this one here because a friend shared it on one of my cancer sites the other day and I loved it – with thanks to Caitlin Freeley, a young lady who went through her own cancer journey and anyone who has an illness of any kind would be able to relate – thought of so many friends when I read this 💚

“What’s it like to go through cancer treatment? 

It’s something like this:

One day, you’re minding your own business, you open the fridge to get some breakfast, and OH MY GOD THERE’S A MOUNTAIN LION IN YOUR FRIDGE.


So you take off running, and the mountain lion is right behind you. You know the only thing that can kill a mountain lion is a bear, and the only bear is on top of the mountain, so you better find that bear. You start running up the mountain in hopes of finding the bear. Your friends desperately want to help, but they are powerless against mountain lions, as mountain lions are godless killing machines. But they really want to help, so they’re cheering you on and bringing you paper cups of water and orange slices as you run up the mountain and yelling at the mountain lion – “GET LOST, MOUNTAIN LION, NO ONE LIKES YOU” – and you really appreciate the support, but the mountain lion is still coming.

Also, for some reason, there’s someone in the crowd who’s yelling “that’s not really a mountain lion, it’s a puma” and another person yelling “I read that mountain lions are allergic to kale, have you tried rubbing kale on it?”

As you’re running up the mountain, you see other people fleeing their own mountain lions. Some of the mountain lions seem comparatively wimpy – they’re half grown and only have three legs or whatever, and you think to yourself – why couldn’t I have gotten one of those mountain lions? But then you look over at the people who are fleeing mountain lions the size of a monster truck with huge prehistoric saber fangs, and you feel like an asshole for even thinking that – and besides, who in their right mind would want to fight a mountain lion, even a three-legged one?

Finally, the person closest to you, whose job it is to take care of you – maybe a parent or sibling or best friend or, in my case, my partner – comes barging out of the woods and jumps on the mountain lion, whaling on it and screaming “GODDAMMIT MOUNTAIN LION, STOP TRYING TO EAT MY GIRLFRIEND,” and the mountain lion punches your partner right in the face. Now your boyfriend (or whatever) is rolling around on the ground clutching his nose, and he’s bought you some time, but you still need to get to the top of the mountain.

Eventually you reach the top, finally, and the bear is there. Waiting. For both of you. You rush right up to the bear, and the bear rushes the mountain lion, but the bear has to go through you to get to the mountain lion, and in doing so, the bear TOTALLY KICKS YOUR ASS, but not before it also punches your boyfriend in the face. And your partner is now staggering around with a black eye and bloody nose, and saying “can I get some help, I’ve been punched in the face by two apex predators and I think my nose is broken,” and all you can say is “I’M KIND OF BUSY IN CASE YOU HADN’T NOTICED I’M FIGHTING A MOUNTAIN LION.”

Then, IF YOU ARE LUCKY, the bear leaps on the mountain lion and they are locked in epic battle until finally the two of them roll off a cliff edge together, and the mountain lion is dead.

Maybe. You’re not sure – it fell off the cliff, but mountain lions are crafty. It could come back at any moment.

And all your friends come running up to you and say “that was amazing! You’re so brave, we’re so proud of you! You didn’t die! That must be a huge relief!”

Meanwhile, you blew out both your knees, you’re having an asthma attack, you twisted your ankle, and also you have been mauled by a bear. And everyone says “boy, you must be excited to walk down the mountain!” And all you can think as you stagger to your feet is “f*ck this mountain, I never wanted to climb it in the first place.”

Mutant Mum

So it’s been a while and so much has happened but before I bring you up to date let me fill you in with where I am right this minute.   It’s day minus 6 of my CAR-T clinical trial at the Peter Mac Hospital in Melbourne and it’s day one of my lymphodepleting chemotherapy regimen which will lower my immune system in preparation for my reengineered t-cells to be infused on day zero which is next Tuesday.   This procedure will officially make me a genetically modified human (there’s even a register I have to go on in the US and my kids are very excited by the idea of me becoming mutant Mum – we had a great conversation about what superpowers, other than a cure for my incurable cancer, this might give me but more on that later).    

So here I am just starting full dose Fludarabine and Cyclophosphamide (hold the rituximab).   I’ve held off sharing this part of the story until the chemo started because I didn’t want to jinx it – but it’s well and truly happening now.   And I don’t mind telling you that I’m freaking out but I do seem to be the only one in my team who is so hopefully this is all just part of processing worst case scenarios and all will be well. My doctor Professor Con Tam even looked slightly bemused as I got him to witness my advance care directive and my will this morning.   It’s very much like the build up to taking ABT-199 for the first time – that’s now an established approved drug (venetoclax) and has even now got FDA approval for frontline treatment but when I took it in 2015 not many humans had.  I’m pinching myself that I’m doing yet another first in human clinical trial – this time amongst the first 24 in the world so I am pretty scared.   

I’m hoping I have made the right choice having CAR-T now and I’ll fill you in with how I’ve reached this point over the next few days. I’ll forever be grateful to venetoclax for giving me the almost 5 years to get to this stage, but for now, it’s time to rest and let that potent chemotherapy do its job knocking back my immune system which is pretty much as good as it’s ever been.   If you could see my bloods you would not know I have leukaemia – everything is in the normal range and ibrutinib, the drug they’ve used to get me to this stage, is doing such a brilliant job that they had trouble finding CLL in my bone marrow – hence the mental struggle I’ve had reaching this decision which I will share with you as I bring you up to speed with the past 3 years.

Right to Try


All quiet on the health front.  I had my 24 month check up on the trial and I’m still MRD negative and bloods are all good – it’s very nice being a boring patient.  Two years ago next week I tentatively took venetoclax for the first time and I still take 400mgs daily with no apparent side effects.   I feel very very lucky to be on this miraculous drug which is approved here but not yet funded.  Ibrutinib goes on the PBS in December and approximately 900 patients in Australia will now be able to access it which is fantastic news.  Hopefully venetoclax won’t be far behind.  In the meantime I’m continuing the campaign to try to get these drugs made more readily available for patients who need them.   This week that campaign took me onto Sky News where I was interviewed by Andrew Bolt on the Bolt Report…a real highlight for me as I’m such a fan of his.   Those who know my story may note the timeline is a bit truncated in this interview but I didn’t want to correct him when he said I was diagnosed two years ago so went with the flow – it also meant I shaved 4 years off my life and it’s nice to be 40 again!   A couple of friends pointed out that I looked like I was paying homage to Hugh Heffner with my choice of outfit – oh well it was inadvertent but nothing like putting the sex into venclexta and Andrew actually mentions viagra briefly in the interview because I was interviewed on the young IPA podcast by his son James and pointed out that one of the benefits of patients trying new drugs can be unexpected positive side effects (such as a cure for male pattern baldness with ibrutinib and erectile dysfunction with viagra which was originally designed to be a heart medication).



This followed an Op Ed in the Herald Sun and my latest article in the Institute of Public Affairs IPA Review magazine.

Herald Sun Right To Try article

I’m feeling so well, working full time now and the children are thriving.  I’m helping the Walter and Eliza Hall with their fundraising and had the honour of speaking to scientists there last month – it was great to see Professors David Vaux and Andrew Roberts in the audience – if not a little intimidating.

170525-Guide to Giving ad June 2017

Life is good and I don’t need to fly to London now until the first week in January so will be making the most of the warmer days here down under.  Thanks for being with me on the journey!



Cosmoclax – go hard then go home

Cosmoclax – go hard then go home

I’ve just returned home to Australia after a quick dash on my first ever round the world ticket and I did it all in a week.

It was my cycle 18 appointment in London and I followed this one day stopover with a visit to New York for IwCLL 2017 – the international conference held every two years where I was reporting for – the online portal for doctors.   The last conference of this type was in Sydney in 2015, but I was already living in London by then.

I arrived at Barts, suitcases in tow to see my clinical trials nurse Martina who is now looking after me (this is actually an old photo but I realised I haven’t put Martina on here and she should have the same treatment as Sam and Berta, my previous nurses).

IMG_3813The usual bloods were taken to be sent to Ohio and Livingstone in Scotland (everything locally came back completely in the normal range) and then I went off to clinic to see Professor Gribben.   The hospital was in the middle of an IT crisis thanks to the hacking of their systems by some imbecile which was affecting their ability to order treatment for patients.   I would imagine it has almost certainly cost lives, thankfully John had ordered mine the day before.  He introduced me to another patient on the trial, Corin, who is also doing really well and is younger like me but more heavily pretreated and has been living with the disease for ten years, having been diagnosed at 38 with young children.  It’s the first time I’ve met someone in such a similar situation and we managed to squeeze in a coffee before I left for New York the following day.


New York so good they named it twice – the whole city is a filmset and what better setting for the IWCLL conference this year than in Times Square and it started with a cocktail party where I was reunited with Professor Kipps.  It has been two years since I saw him for a second opinion in San Diego and I also met Professor John Seymour from the Peter Mac here in Melbourne who is one of the few CLL specialists I haven’t seen!  While we caught up the conference organisers had put advertising up on the big screen in Times Square in view of the party.   As a Brit and an Aussie it seems odd to me to see drugs being promoted in such a way as “Make Imbruvica your first step” and “Aim High with Vencelxta” – goodness only knows what the pedestrians gazing up at these films thought of them as they sat along adverts for lingerie and new blockbuster movies.


It was an intense weekend at this medical conference where doctors and scientists were presenting their latest research and clinical trials reporting to their peers.  It was tough going for a patient to hear a lot of it  – this was not designed for us mere mortals. Life is good but precious and fragile and I’ve been reminded of that fragility here.  Doctor after superstar doctor and scientist discussed just how difficult it is to treat relapsed and refractory CLL, particularly in younger patients – there are many compounds out there now and Venetoclax is dynamite to quote one but the disease seems to have a canny knack of finding a way around most drugs and resistance is being seen even in the best of them.  So for me it means this is not over, although to be honest I never thought it was.

Those clever scientists are trying to find a way to predict resistance before it develops and it may be that those who have the potential to develop it will receive an additional combination of drugs before it even starts but we’re not there yet.   Professor Gribben told me transplant may still be in my future – this is a hard pill to take given everything I’ve done over the past two years to avoid that scenario, I just have to hope Venetoclax can hold the line long enough to enable something better and safer than an allogeneic transplant to become standard treatment or at least be in clinical trial stage and preferably in my home country if that’s not too much to ask.  And that has been my problem – I just missed out on using the novel therapies in the front line setting by a couple of years and had to have chemo – I will be particularly frustrated if I just miss out on a potentially curative option and have to have an allo because I relapse a few months too early.  But it’s just too soon to know – what I’ve had could be curative – we just won’t know until much more data is in.

I’m clinging to the knowledge that 16 patients on one of the early trials of Rituximab and Venetoclax have been off all treatment for 24 months and have yet to relapse – keep your fingers crossed for me that I have the same level of deep remission and get at least the same amount of time.   I’m hoping staying on drug might buy me more.     I spent the weekend interviewing Drs such as my own from Melbourne Constantine Tam who is pictured here with Dr Matthew Davids from Dana Faber and below Professor Michael Hallek from Cologne – how lucky am I?



And of course there was a bit of downtime – a walk along the High Line – a peace of calm above the hectic city on Mother’s Day and dinners out recreating the scene from Sex and the City at Soho House and even a night with my favourite doctor John Gribben at Koi.


And a real highlight was meeting Professor Kanti Rai after whom the Staging system in CLL is named.   I felt like I was at the Oscars taking all these selfies of my heroes!


Funnily enough I find these days I exhaust myself living as if my life might not be quite the full 3 score years and 10 promised to others and this past week has more than amplified that.  I have asked myself whether I need to slow down and stop carrying on as if I might die but have decided that’s nonsense.   I’ve lived an intense 5 and a half years – with a heightened sense of my own mortality which comes with the knowledge that this incurable and oh too clever cancer could turn nasty at any time and, with the best will in the world my now global team of doctors could do nothing to save me.   In many ways the compunction to experience life at its fullest has been a gift.  My lot is not to merely function but to live this extraordinary journey and there really is no end in sight but I wouldn’t want it any other way.  I couldn’t change having cancer – I don’t think I did anything to cause it and, even if I did, no one deserves what I’ve been through but oh the intensity has been almost blissful.  I’ve said it before – if it weren’t for the impact on my children and friends I would wish a little bit of cancer on everyone to remind us all that life is too short not to be happy and live it – we’re all a long time dead – we need to make the time here matter.


Creating meaning

Creating meaning

I read the most beautiful book the other day – “When Breath Becomes Air” by Paul Kalanithi.  I couldn’t recommend it more highly.   Try not to google as I read it suspecting but not knowing how it would end (and on that note if you do buy it skip the foreword for the same reason).   Paul was a neurosurgeon who was diagnosed with lung cancer at 36 just as his career was taking off.   The book is not so much about the cancer struggle itself as a quest to find the meaning of life – we are all dying, just some of us quicker than others, and Paul’s book is all about finding and creating meaning in life no matter how short yours might be and it’s the most beautifully written thing I have ever read…his voice is almost poetic in its honesty.  Do buy it.


One of my favourite biographies is “One Crowded Hour” by Tim Bowden which tells the story of acclaimed Australian combat cameraman Neil Davis who began every diary with these words written by Thomas Osbert Mordant during the seven years war of 1756-1763:

Sound, sound the clarion, fill the fife,

Throughout the sensual world proclaim,

One crowded hour of glorious life

Is worth an age without a name. 

I have taken this much loved book with yellowing and dogeared pages all over the world with me since I read it at university.  Aside from the fears for my young children I have never really been scared of death itself, I’ve more feared not embracing life to its fullest.  My BBC management mentor said he was worried I would burn out at a young age adding that no one ever lay on their death bed regretting not spending more time at work.   I strongly believe it’s better to regret the things you do than the things you don’t and I could never be excused of not living as if I might die tomorrow and that was true even pre cancer!    Forgive me for the soapbox adages but life is just too short not to live it and, whatever happens, I know I have.   My good friend Vikki Leffman in London, who was by my bedside on so many occasions (beautiful woman thanks again for that), said at one point it was as if I didn’t seem to believe I could die despite how desperately sick I was.  My faith has sustained me and I do believe that what is meant to be will be, I just tried to cheat my odds a little and buy myself time enough to see my children grow.     Ultimately I was at my sickest with misdiagnosed pneumonia in 2010, a full  year prior to finding out I had CLL (and I was so sick because I probably already had it).   I was lying in bed, unable to lift my head off the pillow, watching my babies playing in the hallway, my daughter crawling and the boys rolling around like tiger cubs and I really thought I was going to die.  A Doctor had been out to see me and had said I had the flu and to pick myself up but I remember very clearly thinking “I’m dying and I’m so sorry that I’m not going to be able to see you all grow up but I am so sick and I just need to go to sleep”.   The sense of calm I had at that point has given me enormous comfort over the years since.  By the time I ended up in hospital I was really sick and I was probably only a few hours from death had I not had medical attention.

As I move on with my life the inconvenience of a three monthly appointment becomes a necessity that I can deal with.   Last week I saw Con Tam at the Peter Mac here in Melbourne.  I hadn’t seen him for 6 months and it constantly amazes me how much changes with the science involved with CLL every time I do catch up with him.   He has always been the most fervent of my doctors in favour of the novel therapies and clinical trails and against transplant and we discussed when I might be able to stop venetoclax now that I have no detectable disease.   He thinks, like my other specialists, that I have to stay on it until there is an option for me here in Australia.   He says, if I do come off the trial, I am almost certain to have at least a 2 year treatment free remission and after that the new CAR-T therapies should be more established and they could be a good option for me if I become resistant to venetoclax (there is no evidence that resistance happens when you reach my stage but there are still very few who have been on this drug for more than 3 years).   My bloods are all still completely normal and I don’t think I will have another bone marrow biopsy until May.

I also spoke recently at Abbvie’s national conference in Sydney and had the privilege of sitting on a panel next to Professor David Vaux AO from the Walter and Eliza Hall Institute here in Melbourne whose work identifying the function of BCL2 in 1988 led to ABT-199 being developed.     I gave him a hug when I met him (note to self I must stop hugging scientists it makes them uncomfortable!).   Venetoclax received TGA approval here in Australia last month and I was exuberant in my levels of excitement while being interviewed by the ABC but unfortunately I still won’t be able to access it here until it is listed on the Pharmaceutical Benefits Scheme.  It’s before the Pharmaceutical Benefits Advisory Committee next week and I’m hopeful that, despite NICE turning it down for the NHS this month, the PBAC will understand how desperately this drug is needed by patients such as me.   The Leukaemia Foundation is on the case…

Work wise I’m now working three and a half days at the Institute of Public Affairs – it’s such a dynamic and impressive place to be and I feel I am making a difference to help this very important think tank make its mark.  80 percent of the staff are under 30 and are set to change the world.   I’m buoyed by my days spent with these incredibly intelligent people as they begin their careers, the IPA is certainly an incubator for talent and ideas and I feel very privileged to be there.    They’ve also been so supportive of everything I’ve been through – they even let me have a few words in their last IPA Review which is the oldest Public Affairs journal in Australia.

My next appointment is in London on the 10th May and then I’m flying to New York for the International World CLL conference – going to do some things with Patient Power and will hopefully get to catch up with Professor Thomas Kipps two years after my trip to San Diego to seek his opinion on what I should be doing next.     I spent my earlier life as a news reporter and producer in commercial radio and then the BBC telling other people’s stories so I still find it strange that I’ve ended up being part of one myself and I do feel I have a duty to share it and offer hope to those going through similar experiences.  In my 43 years surely the past two have been amongst the most extraordinary and I feel so very lucky to be here.


5 years on

5 years on

Today is the 5th anniversary of my diagnosis with CLL, a day that some describe as their canciversary, and this is really the point that I couldn’t have expected to still be here, and if it wasn’t for my clinical trial I seriously don’t think I would have been.  On the 20th December 2011 I walked into my haematologists office to be told there was a diagnosis – I had an incurable form of leukaemia and the average patient with my prognostic markers could expect to survive a mere 5 years.  My daughter was only 2, my boys 7 and 5 and that wasn’t long enough.   It was a few days from Christmas and this photo of me at the time was taken on Australia Day the month after.  By then I had started the steep learning curve to discover what was being done to get ahead of this disease and there was much science was working on.


So here I find myself apologising for the fact that cancer no longer dominates my life and I haven’t updated this blog for some time.  Having said that I have the best update ever for all those reading this, newly diagnosed or not, because last week, as my miracle drug Venetoclax, received marketing approval in Europe, I was given the results all patients dream of from my last bone marrow biopsy a fortnight ago in London – I am MRD negative which means I have no detectable cancer using the most sensitive testing now available.  It has taken 12 months to get to this point but what a 12 months and I celebrated the news in the American Bar at the Savoy with my elegantly dressed doctor Professor John Gribben and my best friend in London Eddie, who I only met as I waited to get onto this trial and was with me all the way through – he’s another blessing to me.


I’m still doing 3 monthly trips to London and am jet lagged as I type this.  The trips from Melbourne were monthly up until September, I’ve now started cycle 13, have no side effects and am back at work full time so, aside from all the travel, my life is completely normal.   Now that I have my own oxygen mask on I’m trying to help others access this drug and have been doing a little media…

ABC Link

The Project

On my September trip to the UK I added on a side trip to speak at the Oslo Cancer Cluster and the coverage made it into one of the Norwegian tabloids there

and last week I went to Abbvie’s Headquarters in a chilly Paris for the morning to meet staff  – many of whom are working on my drug so that was a real privilege tacked onto a second trip to Disneyland Paris with the family who accompanied me on this latest trip.


As we toured Notre Dame my 10 year old son, Marlowe, asked me if prayer had ever helped me – I said it had and asked had it helped him.  He said yes Mummy when you were sick in London I prayed at St Paul’s for you to get better and now you are MRD negative.  I was choked that he understood the significance of the result and that he has gained comfort from it.  It’s been a dreadfully long year for the children and he apparently has prayed that the travel will stop now I’m well.   And what happens now I have no detectable disease is the big question.   The consensus is that I need to stay on Venetoclax for the foreseeable future.  I have no side effects and there is just not enough data at this stage to know what will happen if I come off it and how quickly I might relapse, or if I will respond to it again if I am able to restart taking it.  And that’s the biggest fear.  I have gone to extraordinary lengths to access this drug and there is no guarantee if I come off trial that I will be able to access it again.  It still doesn’t have approval in Australia and, more worryingly, Imbruvica – one of the other, more established, novel therapies which has been available on the NHS, has just been rejected by the PBAC here for a third time so we are now years behind Europe and the US in access to these drugs.   To keep taking Venetoclax I have to stay on trial and that means the trips to the UK must continue and so does the financial burden.

It’s all worth it and I can’t complain even for a second, over the past 5 years I’ve learned to turn negatives into positives, to try and keep an even keel with both good and bad news and overall to take personal responsibility for what happens to me, I couldn’t wait for the answer to come to me, I had to go out and find it – I’m very grateful to be here and thanks to those of you who have followed my journey for all your support too.  I will try not to leave it so long to update you in future.   Wishing you a very Merry Christmas and a Happy and Healthy New Year.