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?

vjhemonc.com

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…

http://www.leukaemia.org.au/news/breakthrough-drug-approved-in-australia-but-pbs-listing-still-needed

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.

http://ipa.org.au/publications/2623/how-red-tape-almost-killed-me

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.

 

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.