So, whether I like it or not 2019 is underway and with it comes a new treatment plan from the Marsden. I had my appointment this morning and now have my first month’s supply of Encorafenib and Binimetinib (Enco+Bini). My new drugs caused a rush of excitement with the hospital pharmacy as apparently I’m their first patient to receive them – until now they’ve only been used as part of a trial and so the whole protocol proved new and exciting. Even my doctor described me a ‘trail blazer’. I did point out that I’d really like to be at the other end of things one day and for there to be mountains of data and reassuring information but to be fair I do know that with the equivalent drugs (made by other drug companies) the data does exist it’s just that I opted for the newest ones! Anyway, it was fun seeing the slight buzz of excitement amongst the really lovely pharmacists!
As always I had to fill in a consent form essentially saying I’m happy with every side effect under the sun as the drugs themselves will prolong my life. The side effects in some ways are more similar to those from chemo than the ones I’ve been exposed to with immunotherapy in that you won’t end up with the same kinds of potential autoimmune disorders – diabetes, hepatitis, colitis, pneumonitis and endocrine problems but there’s potential for more fatigue, nausea, rashes, aches and pains as well as more serious issues which thankfully are rare including heart and eye issues. As I’ve done in the past I’m going to assume it’ll be fine until proven otherwise. However, Prof Larkin did point out that I’m not simply taking two drugs but will still be very full of Pembrolizumab, so essentially I’m being exposed to 3 drugs and there are high levels of associated toxicity. On the plus side there’s also a slim possibility that it’ll make everything work better as I’m getting all the drugs! So I ought to be very vigilant over the next couple of weeks and in fact will be back at the Marsden in 2 week to get my bloods checked as a precaution. After that it’ll be 4 weekly visits to get my bloods done, see the doctor and pick up my pills plus a scan in 8 weeks to see whether it’s all working!
This move from immunotherapy to targeted treatment, from infusions to pills, from a treatment that might conceivably be a cure to one that always stops working at some point has been a lot to get my head around over the last few weeks. Thankfully, as I often say, time is a magical thing. Once the shock of the last scan had settled I’ve had time to get my head around all the changes and to think through the specifics of what it is that’s worrying me and to some extent deal with those concerns. Fortuitously (as this was arranged a couple of months ago prior to the shit scan) I’m off to Barnet tomorrow for one of my magical days where I see my counsellor, have a reflexology session (from a reflexologist not my counsellor) and then buy the world’s best doughnut so I’m sure the counselling will help me sort through some more of the current head-fuck.
I realised that one of my concerns was related specifically to the move from infusions via cannula to daily pills. Despite my rubbish veins, I don’t really mind being cannulated. In the end I get to just be a patient and it’s the nurse who’s responsible for getting the damn thing and they literally hold your hand throughout the process. Plus, it’s only 3 weekly and whilst I never forget about melanoma I don’t have to physically deal with it every day. The pill thing is different. It’s my responsibility to take them every day and it’s highly unlikely that anyone will hold my hand whilst I do. Although perhaps I ought to train the boys to do exactly that! Equally, no one will accompany me every time, provide me with lunch and then eat chocolate once it’s all underway. The element of ritual will be gone and it’ll just be me and the pills. Plus, it’s lots of pills – my doctor described it as 3 a day – what he hadn’t factored in is that you actually have to take several to make up the dose so in fact it’ll be 12 a day – 9 in the morning and another 3 in the evening. It’ll be fine. My veins will be happy to left alone and the slight nerve damage I sustained a few months ago from a cannulation fail will have time to mend but it is a big change and i’m not a big fan of change!
So this is the new normal – pills daily, new side effects to watch out for, 4 weekly hospital visits and I’m plunged even further back into the realms of uncertainty which to be fair I never really felt like I left. Last year it was liberating to take back some control having got to grips with immunotherapy and book our summer holiday months in advance and to generally not totally freak out at adding things to my diary more than a week ahead of an event and I’m sad to see that go.
Hopefully, if the drugs work and if they don’t make me too ill – we’ll regain some confidence about looking forward but for now life is very much for living in the present – which is much better than not living at all!
So, new year, new drugs and it’s full steam ahead. I shall be keeping my fingers very firmly crossed that I get lucky again and that my accidental trail-blazing ways will keep me here for a lot longer.