Wednesday, January 21, 2009

Chicken bib

So I've been taking brivanib (pronounced with a short vowel: bri-VAN-ib) for almost two weeks now but I haven't said much about it. I'll try to rectify that soon, but first a few quick hits on my experience of the trial so far:
  • T. and B. found the name of the drug ridiculous. I guess I never ran "deforolimus" by them. T. started calling it "chicken bib," which I like quite a lot, and B. came up with something along the lines of "brivablaster," which I also like, not least because the drug actually does inhibit fibroblasts. I don't actually know what fibroblasts are, but they sound like things that need inhibiting.
  • The trial, even more so than the deforolimus trial I participated in, requires a huge investment of time and money, especially if you don't live close to a trial center. I have been to New York three times already for pre-screening and to begin the drug, and we have several more trips coming up weekly until we move to an "easy" once-every-three-weeks timetable. The good news is that hotels are dirt cheap by NY standards, and I am developing an appreciation of the whole boutique hotel concept. (The downside of that is that I'm going to be ruined for when rates jump through the sky in spring.)
  • Side effects are little hard to judge so far. My blood pressure redlined immediately (like within an hour) of taking the drug for the first time, and managing it required a fair amount of tinkering with drugs that have serious side effects of their own. Like many folks, I have a short period of dizziness/wooziness shortly after taking the medicine that fades quickly. I feel more short of breath and equilibrium-challenged generally, but the blood pressure medicine plays a role in that also. No gastrointestinal effects to speak of. I have had a couple days where I was almost laid out by fatigue, but I'm not sure what's going on with that. Although my general level of tiredness has definitely increased, the periods of intense tiredness lasting from a few hours up to a whole day have been somewhat sporadic and unpredictable.
  • You take brivanib every day, which is kind of nice in terms of routines. Deforolimus was five days on, two days off, and every weekend I would panic at some point that I forgot to take the medicine before remembering that I didn't need to take anything.
  • There was some commotion over whether I would need a biopsy (paid for by the drug company) to gather tumor samples. Fortunately, I had enough left over from past procedures to satisfy them. Despite some earlier grousing about the folks at Sloan, they've ended up being pretty solid in terms of taking care of things and getting me started on the study on the earliest possible timetable. Oddly, they are way more relaxed about trial procedure and protocol than the folks at my home hospital; they didn't even mention the BLACK PEPPER PROBLEM until I happened to see it on a sheet I had to ask for.
  • Yes, the BLACK PEPPER PROBLEM. I can't eat freakin' black pepper. Nasty white pepper, OK; limited-versatility red pepper, fine. But black pepper -- my cooking touchstone -- is a no-go. Apparently pepper works on some of the same receptors and could compromise the effectiveness of the drug; it's not going to kill you or anything. But I had to become one of "those people," and ask a waitress at a hip restaurant to ask the kitchen not to add any additional pepper to my lobster roll. I tried to explain that it wasn't that I didn't like pepper, it was that I was taking a new medicine that didn't get along with it. Nonetheless, she was bemused and said something along the lines of, "You're allergic to pepper?" No!
  • OJ and grapefruit juice are also not happening, though at this point I am mystified by anyone who drinks grapefruit juice, as it seems to be about as dangerous as battery acid for those taking any kind of prescription medicine.
  • But hey, even with the new dietary restrictions, at least I'm not one of these people.

1 comment:

Kathy said...

I'm on the Brivanib trial too. No one told me I couldn't eat pepper. Not that I eat a lot anyway.
I too have a little flash of dizziness and fatigue. I also get thirsty and have to have water 2 hours after taking the drug.