Onwards and upwards

So the last few days since my crappy scan I’ve been pretty up and down. Despite expecting the news it still takes a bit of getting used to. It’s a stark reminder of the realities of living with Stage IV melanoma. I’ve been truly grateful that my months have turned into years but I’m greedy enough to want more years and better still some kind of miracle that keeps the bastard at bay for good and so the news that the cancer is once again progressing was very unsettling. I’d very much like my melanoma to stop lurking around my organs and get the message that I’m really not a fan but so far, despite bombarding it with the very best of treatments, my immune system can’t seem to quite grasp a way of keeping it permanently at bay.

So, since last Wednesday, Andy and I have been weighing up the various options and calling in help from my very knowledgeable friends about what I should do next. In a perfect (albeit cancer-y) world I’d be given a menu of treatments and would be able to pick my way through them as and when I need them. Sadly this is so far from the truth – there are trials and treatments and research into sequencing and what might work best for who but it’s simply not ready yet. My choices are actually pretty limited and so this morning’s decision came down to whether to push for the tiny possibility that my health insurance company will pay for another round of ipi/nivo despite the total lack of precedent, or data, or fact that they’ve already paid for it once – or to opt for an anti-pd1 monotheraphy – either Nivolumab or Pembroliziumab.

In the end, with some input from my doctor, I’ve opted to go for Pembro. The advantage of it over Nivo for me is that it still leaves a tiny chance of getting ipi/nivo at some point in the future. Also it’s 3 weekly infusions rather than fortnightly so it’ll require a little less hospital time.

I’m relieved to have a plan. If BUPA approve it in time I’m due to start next Monday and it’ll then be ongoing if it works and if I don’t get severe side effects. In theory,  in that I did suffer from grade 3 side effects when on nivolumab in 2015, there is a risk of recurrence but then all of the drugs come with risks so am not unduly concerned about that.

According to my doctor there’s a good chance it’ll work and the drugs I’ve had previously shouldn’t have a negative impact. Hopefully it’ll buy me more time and time, as well as being very wonderful, also allows for more research and more information and hopefully will make the next decision I have to make slightly less fraught with uncertainty.

Last week my boys asked about my scan results and I was able to tell them that the results weren’t perfect but not a disaster and that the last treatment had kept the cancer at bay and so to stop it progressing again I need more treatment. When I collect them later I can tell them that this is the plan. I’ll start treatment next Monday and will keep on going every 3 weeks and that ought to keep everything in check. This is enough information for them. It’s true – but there are implications that I don’t need to elaborate on to them. The treatment may not work, it may make me ill, it’s likely to make me tired and from my last experience it just just takes the edge off how much I want to do but I’m still very lucky to have options and for now I’m just going to hope for the best!

So for now, onwards and upwards. It’s going to be 3 weekly trips to The Marsden and I’ll have to start building up my supplies of chocolate to accompany my infusions. Treats are an absolute necessity.

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Onwards and upwards

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