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.
6 thoughts on “Cosmoclax – go hard then go home”
Great to see you looking and feeling so well.
Let’s work together more to be sure all patients get the access that we have
We are all in this together
Deb you are starting to make this CLL thing look almost fun! Looks like you worked and played hard in NYC… looking forward to watching your interviews. Thanks for another thoughtful post. Wup
Hi Deborah, you sure do get around and you are looking really well and full of energy and life. Once again thanks to you putting info on healthunlocked we found out early about the trial at Peter Mac for ibrutinib and venetoclax. Graham started the ibrutinib last week and is looking forward to the intro of the venetoclax in 3 months. Yes it’s a long haul, but these trials are essential. He only has to fly Qld to Victoria – doesn’t envy you the long haul flights – but it’s worth it. We wish you well and a long remission. And fingers crossed Australia picks up the pace a bit with the US and UK for frontline treatment regimes. Cheers, that cocktail looks good!
Thank you for your inspiring posts! I am glad to hear you are doing so well. Your New York trip did look enjoyable and star studded! Stay well,
Thankfully still in watch and wait
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I am delighted by your incredible advocacy for ABT-199. I am presently part of Dana Farber’s Waldenstroms Macroglobulamenia trial with Vclax. Like most of the other patients I have heard about, I have enjoyed a more or less complete remission in the first 6 months of a 22 month trial. Very very remarkable indeed. I really hope that DFCI will take action to seek FDA breakthrough designation. 800 mgs/day is a serious dosage and I’d like to see it reduced. In fact, I wonder why a maintenance dose is even indicated. I have many questions answers to which I can’t get from AbbVie and DFCI. Is there an email address you can provide where we can dialogue privately? I live near New York City and will travel as necessary to meet you as you jet about the planet. Please – I want to be as effective an advocate as you are and may have time and funds to go part way towards this goal.
I live just south of Albany New York and have an email at email@example.com
Happy New Year Pete Skinner