Thursday, 17 October 2013

Trials and (BUPA) tribulations

The lastest is... I'm on IVs. As if that's news. I never seem to be off them lately. That said, the sight of a gripper needle and the first lot being drawn up was pretty damn satisfying, after needing these ones for a few weeks, and having to wait.

I don't usually wait - my team are very quick on the ball. If you phone up feeling shit, they can usually get you a quick appointment with the dr that day (if its early) or within the next two. And if you really, really need to start IVs, and can't wait, they're happy to start them there and then, just so you don't have to wait even longer. The difference this time, is that I wanted to go on a medical trial. I don't know how much I'm allowed to say about it (I am allowed to say I'm on the trial and such, I think its more specific things such as whether or not I believe I'm taking the actual drug, the placebo, or if I think I feel good/crap because of it) so I will have to watch what I say, we can't be narking off the powers that be.

So. I'm on the Kalydeco/vx-809 drug trial, stage 3, for DDF508. It's a double blind trial, so neither me, the drs or any of the nurses in clinical research know whether I have the actual drug or the placebo. The trial is 6 months long (providing nothing stops it prematurely) and I think after that, the next steps are the big ones. Providing all goes smoothly and the drug is as successful as they hope, I think the next move is to get it approved through the NHS to become available to other patients. And that would be pretttttty damn cool. That said, it is a rather important drug and there's a couple of rules to follow which have been a big adjustment for me. Some might find it easy (especially those with big appetites or ones who don't suffer many losses of appetites and the like) but you have to have 20g of fat with the tablets. That's morning and night, 12 hours apart (well, I've put mine at 10am and 9pm. I can't eat loads at 10pm and then go to sleep soon after. That resulted in a fairly colourful chucking up situation). The tablets are pretty colours though, BONUS! Pink and blue :D I'm so bored of most of my tablets being boring white. Can't the pharmacy even try and make it fun?

The 20g of fat thing is a varied slope for me - when I first started, in massive need of IVs, I had no appetite and was really struggling. It wasn't helped that I had no energy at all and a bitch of a cough that sounded like it was shifting cement and was 24/7 making me feel constantly sick. I started IVs 4 days into starting the trial, so to be fair, I don't think I can even tell myself whether or not I have the real or placebo drugs. By the time I would expect the drugs to start kicking in, the IVs will start to kick in. But with the state of my chest in the first place, I couldn't have put the IVs off - I was told I had to be 'well' for 4 weeks. I thought that meant four weeks at any time. This actually meant staying well and staying off all IVs and orals that wouldn't be in your usual daily routine (say, Cipro) for four weeks right up until the start date of the trial. I'd needed IVs for a couple of weeks before actually, so the state my chest got in was awful, and my dr even said I could say sod the trial and just start IVs. I decided to wait (at that point it was less than another week till I could start them) as I'd already been through several tests (hardly intensive but I did have some fun with a potentially collapsed vein and incredibly painful blood test, which isn't normal for me) and the most fun of the lot had to be the eye test that made me semi blind for half a day, but it did mean I scored a free taxi home courtesy of the research dept. That taxi bill was a tad higher than it should be after the sat nav got the bloke lost and it took nearly double the time to get home.

Eating enough for the tablets can be a struggle - who wants to eat that much fat for breakfast? Yes, I do get up at 10am, so its my breakfast, not a morning snack. I'm lazy, but I don't really give a shit. At least its not later. I've managed to sort it with porridge (with jersey milk) and a pro cal shot, which is 100calories and 10g of fat in a 30ml shot. Its essentially a milkshake. Tastes a bit like scandishake I think, but you can down this in one (or two, its hardly water) but it also gives me half the fat intake I need, which has taken half the pressure off, and leaves me with my porridge in the morning, and various stuff in late evening, say a handful of biscuits, a stack of pringles, chocolate bars, home made smoothies and hot chocolates, etc. I do worry about when my appetite tanks again (its increased since IVs started, but I'm mostly thanking that to the antisickness I fluttered my eyelashes for, ha) but I'm hoping the cocktail of drugs I'm having will help keep me feeling better for longer. I have the same I had in hospital in august, minus one dose less a day of colo and ceftaz (so those are twice a day, and aztreonam is three times) but that's only cause stronger doses of ceftaz makes the polyps in my nose pop when I cough and the nose bleeds take the piss. The amount of times that happened in hospital and drs came in asking if I'd had any head injuries. Really. 

The trial isn't really anything exciting. I think they're doing the same one in various other parts of the country, but I don't know where and how many people are in it. Possibly America too. I know the company doing this is American cos the research dept were sent a fancy lung function machine. The values are different to what I get in my usual clinic lung function, probably cos its set with American values, and they seem to give lower numbers. I needed 40% minimum lung function to get onto the trial, and with the fancy machine, I got 40 on the dot. Even though it had been a fair bit higher in clinic. That said, my clinic numbers started to mirror those ones in my appointment before I started IVs. I'm trying not to worry about them, its just the exacerbation I clearly had in the summer did me in and took half of what I had, so its really hard to get it back. Going from  60% to just over 30% in a matter of weeks really hits hard and you feel it for a while. Annoyingly, it doesn't go back up that quickly. The days in the research departments are thankfully fairly sparse and far between - I've had two so far, but that included the first initial test day to see if I could qualify. The first dose day did take 9 hours though, I really wasn't impressed at having to get up at 7am in order to get ready and drive down to the hospital early enough to get a disabled space (therefore no paying, lucky really, I wasn't paying 9 hours worth of the bloody multistory!) luckily the other days won't be as long, as the pharmacy will actually have the drugs ready, rather than not having them until nearly 12 in the afternoon, several hours after we'd gotten there. I've got the date for day 15, and I think there's maybe 5 or 6 other visits over the next 6 months, and a couple of phone calls where I get to do those really fun peeing on a stick pregnancy tests; they'd really prefer you not to have a sprog during the trial.

All that aside, I've even had loads of fun with BUPA and their deliveries of my IVs. My first delivery wasn't even sent through - it never arrived, obviously, and I missed two doses. My second one came at 9.30 at night the next day, just as I was about to give up hope and start drawing up my own from the stuff I'd been given from the hospital that morning. And then I had another delivery today, of what I'm assuming is just over a weeks worth, and then I have ANOTHER BLOOD DELIVERY on the 23rd. I'm so sick of them. I don't usually use them, it's only cause my hospital pharmacy is having the yearly checks to make sure everything is working okay (or something, I didn't listen properly). I swear though, bad timing. It was only 2 weeks the pharmacy was going to be out of commission for IVs and certain other things. Of course I needed IVs then didn't I....

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