The “luck” of the draw

I still remember quite vividly the unfolding nightmare that was my melanoma diagnosis in 2013. It was bad news after bad news after bad news. One kick in the teeth after another.  First it was “There’s something big on your chest X-ray that shouldn’t be there”. Later that day it was that “it’s also in your abdomen”. A couple of days later it was diagnosed as melanoma. A CT scan early the next week showed it was also in my brain, which ruled me out of pretty much all of the clinical trials of new melanoma treatments. A follow up MRI  a few days later showed it was even worse than the CT had suggested which meant stereotactic radiotherapy to the brain mets was no longer an option and I required urgent neurosurgery followed by whole-brain radiotherapy. There was one remaining hope in the form of a targeted therapy which had shown promise, namely dabrafenib, but again I was disappointed to discover that my melanoma didn’t have the mutation that this drug targeted so it wasn’t an option either.

This torrent of bad news was upsetting and frustrating for me and my family, and in amongst trying to wrap my head around each new piece of bad news, I was often left wondering where was God in all this? Did He really care? Why wasn’t He allowing me access to these treatment options? He seemed determined to just let me die, and quickly at that! Don’t get me wrong, there was lots of provision from God in other ways, such as the practical and spiritual support of my family and church, but I was still struggling with these darker questions as well, and wondering what was going on.

The upshot of all this bad news was that instead of trying any of these newer, very promising treatments, I was lined up to start the “standard” treatment available at the time after I had finished the course of radiotherapy. However, at the last moment, there was a double-edged glimmer of hope. My specialists thought it worth while taking another look at trial that they’d previously ruled out. It required some nerve wracking hoops to jump through before I could start it, but we thought it was worth the risk. So, on Christmas Eve 2013, the last day that patients could be recruited for this particular trial, I decided to delay the standard treatment available and gamble on this randomised, blinded trial of a new immunotherapy treatment which meant twiddling my thumbs for 8 weeks. Then if a repeat MRI was “ok”, I would have a 2-in-3 chance of getting the new immunotherapy drug.

Fast forward four years…

My bible study group have just started a new series on the Psalms, and this was the first one we studied last week:

Psalm 13

How long, Lord? Will you forget me forever?
    How long will you hide your face from me?
How long must I wrestle with my thoughts
    and day after day have sorrow in my heart?
    How long will my enemy triumph over me?

Look on me and answer, Lord my God.
    Give light to my eyes, or I will sleep in death,
and my enemy will say, “I have overcome him,”
    and my foes will rejoice when I fall.

But I trust in your unfailing love;
    my heart rejoices in your salvation.
I will sing the Lord’s praise,
    for he has been good to me.

Given my experience around the time of my diagnosis noted above, I could certainly relate to some of what David was feeling in this Psalm. And not just the first 4 verses either. Despite the questions I was asking of God and the dark times I was experiencing, there were also times of great joy and singing to the Lord, because I trusted “that in all things God works for the good of those who love him” Romans 8:28, even if  I had no idea what the “good” might look like. I certainly didn’t expect to see it in my lifetime.

Somewhat “coincidentally” the following post from the Melanoma Institute Australia (MIA) popped up on Facebook last week (click here for the study referenced in the article):

Researchers uncover treatment sequence for advanced melanoma patients – Melanoma Institute Australia

Researchers uncover treatment sequence for advanced melanoma patients – Melanoma Institute Australia


It’s a rather small study, and by no means will it be the final word on the topic, but it essentially says that the “best” treatment I could’ve had at the time I was diagnosed was pretty much exactly the treatment I received, even though no one knew it at the time! While my trial is ongoing, it has been unblinded, so I now know that I received both nivolumab and ipilimumab. This study suggests that that combination appears to be the “best” option for patients with asymptomatic brain mets like myself. And while I had been quite upset when I learnt that dabrafenib wasn’t an option for me , it turns out that I may well have had a worse outcome if I had received it!

For me, this hammered home two important truths. Firstly, the importance of good quality, well designed, clinical trials. You can have really good animal or laboratory data supporting particular treatment strategies that have reasonable logical and biological support, but time and time again we get surprised when we put these hypotheses to the test. And secondly, it is a reminder that I have a very limited view of reality, I’m quite bad at working out what is actually going on, and as a result I’m hopeless at predicting the future. This shouldn’t really be all that surprising, but it doesn’t stop me from sometimes thinking I know what God should do for me in certain circumstances. This experience is yet another data point for me in an ever growing data set showing that God is trustworthy. Him revealing this small part of how he is working in my life for “good”, gives me the confidence to trust Him at other times when his plan are hidden. There are of course many other questions I could be asking (eg Why did I get cancer in the first place? Why am I still alive when so many others aren’t?) but He has yet again showed that he can bring about good, not just in spite of, but even through suffering. He is indeed a God I should trust with my head, rejoice in with my heart, and sing the praises of with my voice. For He has been good to me.

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