Goodness, I really am bad about remembering to keep my poor blog up to date.
So, as seems to be the way at the moment, the unblinding to discover which drug I’d been on took a little longer than I’d hoped. I finally got the call from my nurse a few hours before my consultation. To my utter astonishment, and that of the doctors and nurses, it turned out that I hadn’t, as I’d always assumed, been on Nivolumab (nivo) alone, I had actually been on the combination and so had also had Ipilimumab (ipi) . I was extremely surprised as I haven’t come across anyone else who had that drug combination who didn’t suffer really quite serious side effects after a couple of infusions of the drugs. Other patients had ended up being admitted to hospital with dreadful and serious side-effects and for some very strange reason – I had sailed through for nearly 15 months without anything at all. In fact, within a few weeks of starting the drug trial I’d begun to feel better and that feeling simply increased as the weeks and months progressed.
I was incredibly unnerved to discovered that I had essentially been given the best possible Melanoma treatment currently available. It’s the one that has gained the most headlines in the world of health, cancer treatment and immunotherapy. Whilst I’m hugely grateful for the amazing amount of really quality time it’s provided I have to admit to being disappointed that it couldn’t have lasted longer. No one yet knows how long a positive Nivolumab response might offer a stage 4 patient but there are a few Ipilimumab responders who have survived years (one particular hero has made it to 10 years) post-treatment and so I cannot help but be saddened that I wasn’t one of the miraculously lucky ones. However, there is a possibility that either I didn’t quite have enough of the treatment, as I had to stop because of side-effects, or that the steroids that I had to take to control the side-effects interfered with the success of the drugs and either of these two facts might have caused my current progression.
So, in a perfect world, my preference would be to try having the drugs combination again and if I’m really lucky it’ll be exactly what my immune system needs to start fighting the damn cancer cells. It’s probably not the safest plan of action as the combination is notoriously toxic but I just have to hope that either I’ll get as lucky as I did last time and avoid the worst of the side-effects or that I can get enough doses in to make a difference before the side effects kick in. Unfortunately, it’s not currently available on the NHS so I’m currently going through the agonizing wait to see if it’ll be covered by Andy’s magical work family health insurance. It’d been hoped that this decision would take a day or two but it seems it’ll be more like a week or so… so more waiting…. I also really need to hope that if I do manage to get it – it’ll work. There’s a possibility that the reason the cancer is growing again is that my body has got wise to the drugs and therefore having more will do nothing but I just have to hope that that’s not the case.
It’s not the only option and it wasn’t even the first plan that my Consultant and his team came up with or the first plan that other oncologists have suggested. I’m inclined to think that it wasn’t the obvious choice because it comes with significant risks. All the work I’ve done with the Melanoma Patients Network Europe has taught me that in general, patients are willing to take far greater risks with their health than their clinicians and carers so I’m not surprised that my preference wasn’t the safest option. In my mind, if I can do this then I’d like to exhaust the potential of these drugs that have already given me a pretty amazing two plus years and that way I can keep the other options in the magic drugs cupboard of future options.
I’m not totally sure how clear this post has been. I am quite the most un-science-y person I know but whilst I’m still incapable of explaining how the drugs work the medical names and terms have become familiar to me and so they trip off the tongue and no longer bamboozle me. I don’t expect that to be the same for people who haven’t had to live and breath stage 4 melanoma for over two years and so I’m very well aware that it’s confusing and that I’m not very good at explaining. Sorry! I guess the main point is that I know what I had before, I’d like it again and I’m finding all the waiting very tough….