Today I had a consult with a lovely clinical trials oncologist, Dr Bhave. I learnt a lot of things, like exactly how experimental phase 1 trials really are (animal testing has been done, these are at the first stage of human testing to determine side effect profile and efficacy) The one proposed for me is an antibody-chemo complex, designed to bind to a specific antibody receptor on the tumour cell and then 👊"BAM!" chemo gets delivered directly to the cancer cell. Voila! Suffer in your jocks you prick of a thing.
Except, not so fast...my tumour is so rare no one knows if it even has the right antibody receptor to target. All they can say is that the receptor in question is common in solid gastrointestinal tract tumours...It's a long shot, but what choice do I have? I would be like the 27th person on the planet to get this drug. Ah, what we do for our 5 minutes of Fame.
The protocol is quite demanding, blood tests every few hours initially (pharmacokinetic studies) then every couple days and ECG and CT at commencement and 6 weekly. Repeat every 6 weeks. Doing my bit for science.
But here's the frustrating part - in order to qualify for the drug trial, I have to have stable angina, otherwise they cant tell if the drug makes it worse. Given how inconsistent and atypical my chest pains are, this needs sorting. I was relieved to learn there is a lesion in my T5 vertebra on the last scan, which might explain it (the radiologists don't think its metastasis, but given they didn't think I had a tumour in the first place, forgive me for not putting a whole lot of credence on that opinion) Well, calling it relief is relative, at least I have an alternative explanation (referred pain) for what I am feeling, rather than angina being the only candidate.
So, I am now waiting for another angiogram, hopefully soon, and we'll see what happens...If that's clear, then maybe I can go on the drug trial, if a spot remains open (yeah, that's a thing, apparently there's only small windows of time during which they recruit suckers, I mean volunteers, for the drug trials)
But wait, there's more...you would think that drug trials would be co-ordinated, like in a general database of all available trials, no matter who is running them.
Nope. Nope. Nope.
Each hospital runs its own show, with their own set of trials and collaborations. I was advised to make appointments at Alfred, Peter Mac, Monash, maybe Austin to get onto any of their clinical trials. Individually.
Each has their own set of testing criteria. I laugh because this suddenly escalated into a full time job. Well, something to keep me occupied and out of trouble! But seriously, they dont talk to each other? What is this? 1974? I would get onto a drug that is good for me only by pure fluke alone, by "guessing" the correct hospital. Seriously? With my luck?
Surely it can't be that hard to centralise and merge databases. Can it?
(update 22 Apr
turns out there is a database, thanks Alfred Hospital for sending it to me
curious why I was led to believe otherwise, misinformation by omission I suspect. I may have to prepare some respectful comments to make at my next consult)
