Friday, 28 October 2011

And so it goes on … and on ...

So guess what? Not only was Adam's retinoic acid not ready to collect yesterday, but today I get a text message from Alison informing me that they've lowered his dose to 70mg twice a day. I called the hospital. Who was responsible? Don't know, nothing on his notes. Why? Don't know, nothing on his notes. This will be the sixth round of retinoic acid, and for the other five he's been on 75mg without any problems other than some dry skin. Greifswald actually calculate the dose at 80mg, based on his weight; but we're happy to stick with 75mg; at that level in the pharmacokenetic testing we achieved well in excess of what's considered to be a therapeutic dose. We suspect somebody at the Marsden used his weight from six weeks ago when he was still recovering from pneumonia, and the after-effects of the first cycle of antibodies. But even then he's had another course of retinoic acid - at 75mg, since that weight was taken!

I do try not to shoot the messenger, it's not the fault of the poor nurse that happens to be the one to pick up the telephone. But I do get frustrated at times when even the most seemingly straightforward of things can't get done without any hassle. Just as well Alison was at the hospital and not me, she's far more laid back about these things than I am.

In other news, there's been no further communication between the Marsden and Greifswald regarding handling of blood/serum samples, so we'll not be taking Adam back in for any more blood work over the next fortnight. A lot of it comes down to money I'm sure - there is no budget to be sending Adam's samples over to Germany, and there's no agreement for the hospital in Germany to reimburse them for it either. I'm keeping well out of it; the samples are for the study and in no way related to Adam's treatment schedule, or dosing. Right now, the fewer trips we have to make to the Marsden the better as far as I'm concerned. At this point in time, as I shall be reminding the doctors in future, they are our shared care centre. It's Germany that are calling the shots; they are primarily responsible for Adam's current treatment. Continuing in that vain, the next time we need retinoic acid I'm going to take them our discharge letter from Germany and ask for it to be dispensed based upon their written instructions (not recommendations, but instructions). We'll see if that works better. Probably not ...

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