It’s been an if and when fortnight really. An “if” time me thinking “if I beat this”, and a “when” time is when I beat this. The latter being wholly optimistic, by this I really mean survive two years from diagnosis, which would be significantly longer than if there was no treatment. By this point as things are being developed at a ridiculous rate there will be more an offer and I’ll be able to take the next thing. The “when” time began on the release of data about a combination therapy (ipilimumab and nivolumab) showed great promise and in fact one of my consultants Dr James Larkin was the first author on the paper and also interviewed by BBC news. Highlighting that I’m definitely in the right place.
The “if” started on Monday the 8th I rang my cancer nurse specialist and got my results for my latest CT scan. The overallconclusion of the scan was it was stable disease, I.e the beast is stunned. No more shrinkage. Although she also mentioned an “ill defined area” in my liver. This is what scared me, what if it was ill defined, because it was growing. That was my first conclusion. However being in clinic on Thursday, it is clear this is more likely to represent an area which perhaps got more shrinkage than others, therefore is no longer spherical, and is a normal thing to find on a scan of someone treated with a BRAF inhibitor. This correlated with normal blood tests, which I didn’t have the reassurance of on the Monday afternoon when I found out.
Most of my family came to the appointment and we gave the Specialist Registrar, who saw me, quite the onslaught, however a few interesting management things became clearer. As it stands the treatment course will be dabrafenib until it shows definite signs it’s not working (although there are cases where BRAF inhibitors have been used for years). The next in line will be ipilumumab, which about 15% of people respond very well too, then pembrolizumab as this is the only drug which has NHS – early access to medicines scheme funding. The latter somewhere around. 50-70% respond too with some doing exceptionally well. So what about the combination I hear you ask well it’s too premature unfortunately. Nivolumab is not currently funded by the NICE, it most likely will be but guidelines don’t necessarily keep up with the rate of change*.
So I think I’ve learnt the hard way of having Chinese whispers. I wanted the result early because I was a best man on Friday, for an old school Friend. I also think for probably the first time in this saga being a doctor made me more anxious than if I wasn’t medical. But I leave you on a when, an old Leicester medical student contacted me who works for another oncologist, she shared with him my CT scan and my history as they are trialing another treatment (SCIB1), he felt that currently in the hands of the best care and suggested I should carry on.
*please by no means think this is an attack on NICE, an organisation probably more worthy of your taxes than any other. I’m fully aware that this is an opinion unqualified by references or even an tangible comment. But get over it.
Hmm I fear that may not convince people. I’m sad enough to admit I even have my favourite NICE guideline CG174 fluid management in Adults. Medics read it, learn it, tell your colleagues and most of all tell your consultants… That they’re doing it all wrong. Apart from guidelines, NICE have a major role in new drug/technology appraisal by working out it’s cost effectiveness it does this in part by calculating QALYs (quality adjusted life years) for each new medication. Once NICE approves a drug the CCGs (clinical commissioning groups) then have to fund it. It now has quite a high value limit it goes to for treatments, but it only funds what it deems effective. The drug companies have to run trials to prove their effectiveness like the combination trial above, which takes time. The things it rejects are those that are either too expensive, or too ineffective or both. The big advantage of having NICE is it actually forces the drugs companies to bring the prices down as the UK is such a large market. So for many new drugs the price you’ll see in the press or the medicines bible BNF may not actually what the NHS pays, as NICE have negotiated an undisclosed discount. As NICE recommendations and guidelines are used internationally it means drugs companies are desperate to get their approval. It is why we pay a lot less money here for drugs here than in the United States. It could be the only argument for not breaking up the NHS, apart from there’s loads of other great reasons for that too.