Diagnosed at 38 a few days before Christmas 2011 with my then 2 year old daughter on my lap, I was told I had Chronic Lymphocytic Leukaemia (CLL), an incurable disease where the average patient with my prognostic markers could expect to live for 5 years. The average patient, however, was a 70 year old man. A year later I became so sick I required treatment and had 3 cycles of a chemotherapy known as FCR. My remission only lasted 6 months and it looked very much as if I was going to have to have an allogeneic transplant using stem cells from a donor to save my life. This is a difficult treatment and, while, if it works the benefits are long term control of the disease, the risks are high and mortality rates and quality of life issues made this something I wasn’t ready for. I began a global search for an experimental treatment after realising that my options in Australia were limited. In November 2015 I began a clinical trial at Barts Hospital in London of two drugs which have not been used in combination before – one of these is ABT-199, now known as Venetoclax, which was ironically invented in my adopted hometown of Melbourne. I feel very privileged and grateful to be on this trial and this blog is designed to help other patients who may choose this path down the track. It will be a bit technical for my non amateur haematologist friends but the CLLers it’s aimed at will understand.
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.
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).
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.
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 VJhemonc.com – 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).
The 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.
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
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…
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.
I had my monthly pilgrimage to England for cycle 9 this week – my 5th return trip from Melbourne since the end of February. London was sparkling in the sunshine, like a lady in her Sunday best giving a glimpse of the show she’d put on for Her Majesty’s birthday just a couple of days earlier.
It was the first time I had seen Prof Gribben for a couple of months and I realised there isn’t a photo of us together on my blog so we took this for posterity.
John’s tan beats mine (every time). I still can’t believe how far we’ve come since that fateful meeting in San Diego last April and I’ll be forever indebted to him for helping me get on this trial and saving my life.
I was so looking forward to catching up with him because, amongst other things he had my latest CT results to show me. So here they are…this is a dissection looking down my body as if my head has been removed. You can see my spine, breasts and I got my sister Emily to colour in the enlarged lymph nodes in my neck from my trial screening scan last October to make the “spot the difference” exercise easier.
Bear in mind there are more than 600 lymph nodes in the neck and head alone and mine were all infiltrated with proliferating cancer throughout my entire body. The exciting thing is that last month’s scan shows no detectable disease – all the cancer has completely gone (to the level a CT scan can detect) and that is big news for a lumpy jabba the hut wannabe like me as it was the lymphoma which was going to kill me much quicker than my leukaemia. At my worst, pre chemo in 2013 my neck lymph nodes were larger than 5cms and were starting to strangle me. They were also enlarged under my arms below my diaphragm and throughout my abdomen. The fact that Venetoclax has cleaned out the lymph nodes is fantastic news for me and offers hope for other patients, not only those suffering from chronic lymphocytic leukaemia, but also other non hodgkin lymphomas too.
After seeing what my sister had done with my scan I asked her if she could colour code it red to make the cancer look more menacing – she’s a funny girl – this is what she sent back to me…
I’d arrived at Heathrow on Weds at 7am and had rushed straight to the hospital for my blood test. I met up with Berta and she did my bloods and gently broke the news to me that Prof Gribben wanted a bone marrow biopsy performed that day to look for Minimum Residual Disease – this is the test to see if my bone marrow has also been totally cleared out by Venetoclax – remember I have never had no detectable disease there so, if I can get to that stage, I should get a very long remission indeed and can stop worrying about Richters transformations and transplants. It might also allow me to come off the drug down the track and stop this insane travelling. If I don’t get complete clearance then there will be no chance of me getting off it and I’m much more liable to relapse early. Depending on the level of detectable disease if it’s not cleared completely then I may still have to have a stem cell transplant but that does feel like it’s gone on the back burner.
Barts has a policy of no sedation for Bone Marrows – I thought they were joking when they told me that in screening and it was by far the most painful thing I’ve had done in my 5 years of living with this disease so you can imagine how much I was dreading it. It was probably just as well I didn’t know about it in advance for that reason. In Australia sedation is routine but it does take extra resources, and reduces the number of procedures which can be performed in a day, so I do understand why the NHS isn’t quite so kind to us poor blood cancer patients.
There were two Doctors performing this one and I had to ask why there were two as I was worried one of them might have been training! As it was he nailed the local anaesthetic and, other than some minor discomfort and an inordinate amount of time it took to get good samples, 30 minutes later it was all done and I was very happy. It was my 10th and best bone marrow so far.
I caught up with the team at Cancer Research UK who organised the TV ad campaign and told me my ad is now running for an additional 4 weeks throughout June – Natasha’s hug has been getting great feedback and the “right now” campaign has been nominated for an advertising award at Cannes. I hinted if they needed a patient to accompany them to the ceremony I’d be happy to oblige. It was also a privilege to be able to show the hard working media team my scans and share my good news. The difficulty with filming patients on clinical trials is many of them are very ill and sadly not all have survived since the campaign started which is a hard thing for these wonderful women to deal with when they’re working so closely with patients day to day.
Finally celebrated with friends over cocktails at the Waldorf before I returned to Heathrow to fly home. Prof Gribben is going to Skype me with my Bone Marrow results in a couple of weeks and you’ll get them here first.
The end is in sight…on the plane home and thinking how I thought this trial would be an intense 6 months of my life but it will be over a year by the time I’m through the worst of it but I couldn’t be happier.
Venetoclax now has FDA approval which means patients with the 17P deletion (the most dangerous form of CLL) will be able to access it if they need it in a normal clinical environment in the US. I believe prescriptions will cost between $12,000 and $14,000 Aud per month which far exceeds the cost of my monthly trip to London where I get the drug for free as part of my clinical trial. Next week I get to meet its inventors at the Walter and Eliza Hall Institute in Melbourne (along with a camera crew) – I cannot wait!
A little update to this – my bone marrow biopsy results came back in June with my MRD at 0.01 – -almost negative but there were still some detectable cells. It was a good result for this stage in the trial but I was anxious to get a negative result!
It’s been a while and I must apologise once again for letting normality get in the way of a good story. Since my last update here I have returned to London for cycle 7. This involved a blood test, ECG and Echo to check the old ticker is still working and the collection of my month’s supply of venetoclax. I did that trip with 50 hours of travelling and 28 hours on the ground and I’m now sitting in the first class lounge at Melbourne Airport about to return for the start of cycle 8. I’m going for a new record of 20 hours in London before I reboard one of Qantas’s ten A380s home to Melbourne. Australia’s flag carrier has been very kind to me once again, and I’m at the front of first class on a points upgrade so travelling in style for the fourth month running which definitely makes it easier. I reach Platinum 1, their highest frequent flyer status after this flight (and it’s only taken me 4 months of flying to get there)…funny that I spent 9 years not leaving Australia and I’m now living this crazy jetset lifestyle.
So what have I been up to over the past 2 months? Well I’ve stepped up the hours I’m working in my new job, moved house, I now have fixed days to pick my children up from school for the first time in their little lives, my Mum has moved in with me (thanks Mum for everything) and I have definitely started living as if cancer is a distant memory and it really is. Aside from the morning drug call with breakfast, life is completely normal. I’m sitting typing this with a beautiful glass of malbec in front of me and I’ve just had a massage in the spa and feel totally floaty – another glass of red and I won’t need that herbal sleeping tablet the Professor has said I can take to try to alleviate the jetlag. I’ve actually nailed the whole flying thing (touch wood) – last month I arrived back in Melbourne as fresh as a daisy and didn’t have any jetlag whatsoever. The next morning I drove my 9 year old to soccer – the month before I was so delirious I couldn’t drive for 3 days. Maybe it’s because I’m not actually in London long enough to adjust to the timezone there. Whatever it is long may it continue.
This week I have a work conference on Hayman Island in the Whitsundays off the Queensland coast so it’s a very quick turnaround. I arrive lunchtime on Tuesday in London, head straight to Barts for a blood test, ECG and a CT scan, then go off to Covent Garden to have drinks and dinner and drinks with friends then crash the night at one of my besties, Mike’s house. I’ll be collected by Qantas first thing the next day and fly out of Heathrow. I’ll reach Hayman on Friday morning, spend the weekend working before heading back to Melbourne to my babies. I have to say one of my Australian specialists wasn’t too thrilled about the idea of me working but, anyone who knows me well enough knows that it’s better for me to work than to be idle, and I think it’s all helping me to put the health stuff behind me – plus I’m only doing around 20 hours a week so am definitely pacing myself.
There’s been a little publicity this month. The Cancer Research UK ad campaign “Right Now” has been featuring my story in their TV campaign. It made me emotional to watch the filming they did of me again but I have to say, the care with which they have treated me and the children has been astonishing. That was truly one of the scariest days of my life…they filmed the moment with the children just before I took venetoclax for the first time and, even though I’m reassuring them, you can see I’m quietly terrified. They were very careful to make sure we were all happy with the ad and the communication has been fantastic. I’m pleased I agreed to help – they have certainly helped me.
The Leukaemia Foundation in Australia also featured me in their CLL/SLL newsletter – for those interested in the subject this newsletter is an excellent read and well worth signing up for as Nikki Shrimpton does a fantastic job of keeping on top of the latest research and I love her writing.
Patient Power also put some of the interviews they did with Professor Gribben and myself on you tube – if you’re not totally fed up of the sight of me – there’s lots of useful information in those for people considering clinical trials (moreso from him than me!). There’s a whole series of clips you’ll find if you watch this one.
Even though I didn’t really want to have another CT scan (and actually refused to have it last month) I’m pleased I’ve been persuaded to have it tomorrow. It will hopefully confirm the Bone Marrow Biopsy result that I am in a Complete Remission – oh that’s something else I found out over the past two months (talk about burying the lead story!). At my sickest 81% of my lymphocytes in my bone marrow biopsy were CLL – the bone marrow biopsy undertaken in Melbourne immediately after cycle 6 showed only 0.0345% are now which is a very good CR (you might remember the CT scan after cycle 4 still showed some enlarged lymph nodes and that I had had a Partial Response rather than a CR). I also have a friend on one of my forums who may very well have reached a no detectable disease status after 3 years on venetoclax – it doesn’t matter how long it takes to get there but oh wouldn’t it be great to get there?! Fingers crossed for you Sue.
I think that’s pretty much me up to date. I’ve booked my flights for June and July’s trips but I’m really hoping the sponsor will bring forward the three monthly appointments to then so I don’t have to do the trips in August and September and only have to return to London in October. As much as I love catching up with my London friends, we are heading for the Australian flu season and I’m not looking forward to being on a plane during that. Keep your fingers crossed for me.
Couldn’t resist blogging from the front of my Emirates plane tonight. Wifi mid air, how inspired. I’m in the final 2 hours of my 26 hour journey home and, even in the most amazing first class in the sky, it’s still hard going. I’ve also realised tonight, with horror, that this is not a monthly trip for me – I will have to be back on the plane to the UK, in order to make my first monthly follow up appointment in 3 weeks and 2 days. That’s flying every 3 weeks for the next 7 months in order to stay on the trial. I know I campaigned to get onto a trial on the other side of the world but the implication of this ongoing commute for my family, bank balance and my sanity is only just beginning to dawn on me. But enough of being a whingeing pomme, as fellow Aussies would say. Let me give you a glimpse into my journey.
I was collected from my friend’s house by Qantas in a bullet proof BMW M7 sport and, whisked to Heathrow, well whisked is not exactly the right phrase given we were stuck in Easter weekend traffic for 3 hours, but at least I was stuck in style. My driver told me how he takes the likes of Angelina Jolie and Brad Pitt and they have a fleet of bullet proof cars for transferring high security clients – not sure how I got one but was nice to feel well taken care of especially as I was feeling pretty rough.
Cycle 6 had not gone well the day before. I had another allergic reaction to the obinutuzimab and, no matter how hard we tried using steroids and anti-histimenes we could’t get more than 6mls an hour into me without me getting the itching sensation. More worryingly when the rate was increased to 25mls an hour my reaction was becoming anaphylactic so we had to stop. It meant I only got 25mls of the 1,000mls of cycle 6 into me. Was disappointing but it was the right call to stop and as you can see in this picture with my friend Camilla I look tired but pretty relieved that it was all over.
After 6 months of combination therapy this was my final day in hospital. Now I just take my 4 venetoclax daily and hope to get into complete remission and to a level of no detectable disease. It was such a relief for it all to be over and I book ended it with a photo of myself with my new trials nurse Berta, matched with one with Sam taken on the first day of treatment – what special people in my life.
I woke up the next morning at 6, my throat and chest still sore from the obinutuzimab reaction. I’m amazed I got any sleep at all given I’d had 80mgs of Dex you can see how wide eyed and scary I look in the photo above. I was quite groggy and made myself breakfast and put my box of venetoclax on the table ready to take after it (I forgot my trusty pill boxes this trip). Somehow I managed to get distracted (could blame anything from copious amounts of drugs to jet lag) but I ended up taking my dose twice. At first I couldn’t work out if I had but when I looked in the container I could see there weren’t enough tablets so panicking I quickly rang Barts as 800mgs of venetoclax is quite a jump from my usual 400. I was told to drink lots of water, take a piriton and come in if I started getting any major symptoms. This was all around 8am. By 2pm I was bright red. Kept in touch with the hospital and the advise remained the same. Of all the days to do this it had to be when I was desperate to be on that flight to get home for Easter.
The venetoclax would have had its peak effect around the time I first started becoming flushed so I was given permission to board the flight but had to alert the Qantas staff to keep an eye on me. I kept drinking water and taking piriton and paracetamol and had to forsake the champagne. Barts told me to skip the next day’s dose which meant I wouldn’t be taking anything while I was flying. There are clinical trials for Lymphoma patients on 800mgs so I wasn’t too concerned, particularly given I have very little detectable cancer left so TLS is no longer an issue, it just wasn’t the time to have this additional worry.
The difference in the ticket price was definitely warranted on this journey particularly given it’s Easter school holidays and even business class is packed with beautiful snotty nosed faces. I cannot afford to pick up bugs on this journey as that Spanish flu virus showed my immune system is not strong enough to shake them off and I don’t want to be permanently sick.
A friend of mine said I’ve just got to consider this period in my life my job – it’s my job to get well, to be there to be a mother to my children and, if my job means a massive ongoing commute to the other side of the world, then I just have to join the ranks of the Deutsche bank executive in the seat behind me.
So here I am a couple of hours out from home, tired but pleased this week is over. I’ve just had my on board shower – check out the bathroom – it even has underfloor heating! How am I ever going to turn right on a plane again?
And for the makers of venetoclax, Abbvie, here’s a little picture of their life saving drugs travelling in style with my apologies to the trial sponsors Genentech for the overdose and my body deciding it had had quite enough of cycle 6. Landing in Melbourne now and I’ll get home in time to get on with my other job of making my children pancakes for their breakfast. Happy Easter everyone.