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):

https://www.dementiacarecentral.com/alzheimers-online-test/#mini-cog

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:

https://www.pennmedicine.org/news/news-releases/2020/september/penn-researchers-discover-potential-cause-of-immunotherapy-related-neurotoxicity?fbclid=IwAR2Mnel4_HjeBNWM2HUHxElnO6GC2wMLfiDnkrlFOJjETLXE-skHdRlmuoU

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.

https://ashpublications.org/blood/article/129/25/3362/107594/Clinicopathological-features-and-outcomes-of

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!).

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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

https://ashpublications.org/blood/article/135/25/2266/454282/BTK-inhibitor-therapy-is-effective-in-patients

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)

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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.

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

https://www.novartis.com/our-focus/cell-and-gene-therapy/car-t/car-t-healthcare-professionals/pioneers-car-t-cell-and-gene-therapy#the-future-of-car-t

https://www.petermac.org/car-t

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.

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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.

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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!

https://www.leukaemia.org.au/how-we-can-help/advocacy-and-policy/blood-cancer-taskforce/about-the-blood-cancer-taskforce/Taskforce 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.

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.

Wait, what? How? Why is there a mountain lion in your fridge? NO TIME TO EXPLAIN. RUN! THE MOUNTAIN LION WILL KILL YOU! UNLESS YOU FIND SOMETHING EVEN MORE FEROCIOUS TO KILL IT FIRST!

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.”

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.

 

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).

https://ipa.org.au/podcast/young-ipa-podcast-episode-33-dr-bella-dabrera-deborah-sims

 

 

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

https://ipa.org.au/publications-ipa/ipa-review-articles/right-try-revolutionary-legislation-america-returns-sick-people-fundamental-right-save-life

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!