Aug
12
So about this 20% business.
Today I am in hospital today for Cycle 2, Day 1 of the clinical trial, and I had a word about the whole 20%-growth-and-you’re-out thing with Naz, my incredibly competent, compassionate and sensible nurse.
She sat down on the bed and looked me in the eye, and asked in a way that I hope I remember to employ when reasoning with my future teenager: “Well, what would you want to do if the CT scan were to show that these lumps are growing? Would you want to continue with a drug that isn’t working for you?”
No, I admitted, I would not. I would however like the drug and I to be given a fighting chance of working together toward the common goal of cancer obliteration (apoptosis!) before we are ripped asunder. I’ve tried chemo and radiation, and now I’d like a fair shot at the wonderful world of HDAC-inhibitors. Perhaps they could just adjust the dose?
Negative. This clinical trial, as Naz explained, is at a stage where the dose has been firmly established based on things like toxicity tolerances and disease response, and they’re just not going to give me more than I’m getting right now, period. But they do want to give the drug a chance to do its thing, which is why they’ll wait a full two cycles to see if it’s working.
A full two cycles. That may sound generous but it boils down to just four doses total, next Wednesday’s being the last. The CT scan is already booked for the following week, August 26th. Clearly Panobinostat and I are on the clock.
Take heart: I actually think we can do this. I’m going to go with the idea that this is the beginning of a long and mutually satisfying relationship between me and Panobinostat, rather than a whirlwind summer fling. Bonnie & Clyde, Batman & Robin, Leanne & Panobinostat. I do the tough talking — Shrink, damn you. You’ve got 2 weeks to make like a couple of raisins and shrivel – and Panobinostat is the muscle.
Cancer, you’ve been warned.
Aug
06
My neck lumps are growing. Or at least the one on the side is. There are two, one deep in the neck right around the scar where they biopsied the original lump, and another one poking out at the side. They used to be lymph nodes and are now tumours, and frankly they scare the hell out of me so I touch them all the time to see what they’re up to. Evidently they’re up to no good.
Problem is, yesterday I found out that if my tumours grow by more than 20% I’m off the clinical trial. Finis. Apparently 20% growth means that my body is not responding to the study drug and in a clinical trial if your body isn’t responding, it’s sayonara study subject, next please.
When I found out about the 20% growth cap, the internal panic-valve immediately opened and the inner freak-out commenced. Off the study? No more tumour-targeted miracle drugs to precipitate cellular suicide? No more sci-fi magic potion?? It would be too overwhelming a disappointment to contemplate, or even to be able to call a “disappointment” without grossly understating what it would do to me psychologically.
I know there are other options, like chemo, radiation and possibly even surgery – all of which I have previously had, and in spite of which my cancer metastasized. The bottom line is that I’ve put so much faith in this study and been so excited to be a test subject for this new generation of cancer drugs, that going back to more conventional treatments might feel a little like trading smart bombs for mustard gas. Whether that’s a warped perception (wouldn’t be my first) borne of mistrust and frustration that the cancer metastasized is a question for another day. Today I’m about 20% more concerned with just staying on this study because, whatever the treatment is, I just don’t want to be declared “unresponsive” again. It terrifies me.
So these bumps have got to stop growing — or, preferably, start shrinking. They just have to. Any suggestions? I’ll do anything. Rub voodoo salves on them, drink yak urine, hold crystals up to my neck, whatever, I’m all ears. And neck bumps.
