5 years on

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

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

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

ABC Link

The Project

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

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

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

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