So it turns out that May is melanoma awareness month so really I ought to start with a reminder to you all to be wary of the sun (if it every actually decides to stay) and to do all the obvious – cover up, seek shade, wear high factor sunscreen but I very much hope that anyone who knows me, and knows what I’ve been through, does all of that anyway. Surgeries, treatments and what amounts to a death sentence really aren’t worth it for a bit of colour on your skin.
As I’m sure I’ve said before I was never a sun worshipper and did take all the obvious precautions but sunscreen was not as effective when I was younger and a bit like my lovely Max the merest hint of sun made it clear that essentially I was flammable.
I love the sun, I love the heat and despite my diagnosis I continue to enjoy them but I do so carefully. I still go on holidays to hot countries I’m just far more sensible and incredibly grateful to the joys of high factor, waterproof sunscreen. The improvements in sunscreen mean that both my boys, even after several weeks in hot countries, remain delightfully pale and interesting.
May, as well as being melanoma awareness month, also contains two melanoma-related milestones. The first is that I started my Pembrolizumab on 15th May 2017 and so am about to hit my first year on that treatment and ironically – for an awareness month – it’s also the month that I was originally diagnosed so come the 24th May it’ll have been 7 years. With all the milestones that have littered my melanoma adventure neither of these actually feel massively significant. My diagnosis anniversary was absolutely trumped 2+ years later by the news that I’d progressed to stage IV and hitting a year on Pembro in theory only marks that I’m halfway through that particular course of treatment. Obviously this is a massive oversimplification but really it means that May, unlike September, doesn’t get me in a muddle of anxiety and misery.
However realising that I’m about to hit a year on Pembrolizumab has got me thinking a lot about how frustrating the issues with access to drugs and the lack of personalised medicine continue to be. I’ve had to have my last 3 years worth of treatment paid for by BUPA as the NHS wouldn’t cover it due to the lack of available data as to whether multiple immunotherapy challenges would work. I hate having to abandon the NHS and feel terribly guilty both about having my treatment paid for privately and knowing that so many other patients don’t have this option however I’m also very determined to stay alive as long as possible and so for me, that has had to take priority!
At a recent appointment with my Doctor we discussed how long, barring serious side effects or progression, (both highly possible and very scary) I should remain on Pembrolizumab. The data that exists tends to point to the idea that 2 years is optimum but really this is just based on random trial design and what has happened historically as again, the data is sparse. If I ever dare look ahead I like the idea of 2 years of treatment. I like the idea of completing the course and it would be the longest I’d ever managed on treatment so it felt like something to aim for. However, as time ticks along, I’ve become more and more conscious of how arbitrary it is and how, whilst it might be ideal for some patients – especially those who get a full rather than partial response to the drugs, it may not be right for me. (I’ve only ever had a partial response as my tumours although controlled refuse to go – some people are fortunate enough to see their tumours totally disappear leaving them with No Evidence of Disease – NED).
Every patient is unique. Their disease is unique. Their response to treatment is unique. My experience of this disease has absolutely highlighted how true this is. On the one hand my melanoma had a reasonably low risk of progression – it wasn’t massively thick and whilst it had spread to my lymph nodes it was only a micro-spread to one. However it did come back and when it did I was suddenly dealing with a very aggressive cancer with a pretty crappy prognosis. It was on my liver – which is bad and notoriously hard to treat. I had multiple tumours on and around my liver so it wasn’t operable and one of the cancer markers that can indicate a poor prognosis and a poor response to immunotherapy was, in my case, twice the upper limit. Regardless – I’m still here. I again defied the odds and responded well to drugs that are usually massively toxic and yet in my case I sailed through with only limited side effects. The major side effects I eventually did experience were caused by the less toxic of the two drugs I was originally on. I, like an awful lot of patients, am an anomaly.
Despite this, despite the fact that as patients we are all unique – the way the treatment is given is basically pretty uniform and doesn’t take our difference responses into account. So the fact that since September 2013 my treatments have worked well in terms of shrinking and stabilising my tumours with limited side effects but frustratingly don’t last is not really properly considered in relation to a long-term treatment plan.
On top of that, if I do reach the magic two years on Pembro I’m then faced with the reality that if I stop treatment I may not be able to access it again because guess what – there’s not a enough data! It’s possible that by next May this may be different but as things stand there are massive issues about people stopping immunotherapy and risking the possibility of no further access or even more ridiculously having to continue beyond the two year point in order to not permanently forfeit the life-extending treatment. This situation clearly makes no sense.
So whilst I’m pleased that Melanoma has it’s own awareness month and prevention is a massive issue, for me, actually in terms of awareness – the issues of access to treatment and the lack of properly personalised care are paramount. I continue to be astonished that when diagnosed with stage IV cancer it’s not as simple as throwing the best treatment at the disease as often as you need it’s all about protocol, existing data, faulty trial design and as a result again and again people continuing to die.