I Reenlist for the Clinical Trial
May 5, 2001
Well, this past Thursday, May 3, my 16 weeks on the clinical trial was done and I reenlisted,
meaning I signed up to do it again and got another shot.
What amazes me is that I haven't written anything for my journal since I started it, back on January 11. A month or so ago, I started a section at Phoenix5 about the trial with the intent to put my experiences on line so others could become acquainted with the procedures at one clinical trial, but I haven't kept up with it. There's been just too many other things happening. So I figured I might as well put something in the journal.
First, I'm delighted with the trial. Yeah, it can be a bit of a hassle going in so many times for my nearly-weekly blood draw but it has been worth it. Because it is a clinical trial, they monitor me closely and more often than I could possibly get at the VA.
Like the time they thought my red blood count had dropped too far, a sign that I might be losing blood somewhere. I was called and told to bring in a stool sample and get retested immediately. It proved to be nothing, possibly just a lab error, but I liked it that they jumped on it.
And with the new shot on Thursday, I'm back on the couch for two weeks. That's one of the safety precautions, not sleeping with anyone for two weeks. There is a whole list of things I am not supposed to do, some of them dropping away after a few days or a week, but the sleep-alone is the longest one.
As I understand it, this wouldn't be a requirement if I were getting Quadramet in a normal setting. The precautions in a clinical are more rigorous. Also there is the possibility that I am getting the double-dose.
Also on Thursday, as part of the blood draw, they are going to measure my PSA again. I will be interested to see what it is since it dropped to something like 33 in the middle of the trial. Whether this is due to the Quadramet (if I am getting it) or merely a drop (as I did have one drop earlier, before starting the trial), I don't know. All I really know is that I continue to feel well and am still off the pain-killers. Oh, yeah, when I walk or move about too much, there are some aches and I have to down a couple or a few Advil but that doesn't happen more than twice a week. The Tylenol II (with codeine) continues to sit, unused, which is nice.
Gayle (at clinical) said there is still only one other man on the trial here in Cincinnati and apparently only 24 men nationally. That surprises me, the national figure. I told her that it could be promoted on various Internet lists and groups and she said there are some problems with that, based on restrictions set by the oversight people. They really aren't allowed to go directly to patients. So I might take to the airwaves myself to see if I can drum up some more for this trial. I don't want it to close down for lack of interest.
What I can't figure out is why there would be only 24 men. She did say the requirements are pretty strict. One has to be hormone refractory and pretty pain-free. I still think there is more promo that can be done. I think what I'll do is get that section of my site into better shape and then get onto some lists and newsgroups and promote it. They may not be able to drum up recruits but there is no restriction on me.
Anyway, I thought the second shot would be pretty simple, having done it before. But it wasn't. There was a slight "spill" on the injection (some of the fluid being fed into the IV leaked out) so radiation safety had to come in and do a cleanup and then I was told they figured they lost 20% of the fluid (it really is a small syringe) so I got another shot, to make up for it.
There was also some humor, as when I was standing over a toilet, with a saline bag in my teeth, trying to take a piss. I'll write about that for the site.
One more thing worth noting for the record: For months, I relied on writing my feelings to stay sane. I used the keyboard to pour out my anger, grief, fear and pain. But somewhere that need began to fade and I spent more time working on the site and less time writing about my situation because I was simply feeling better.
I know there was a major change in October, with the Van Gogh and Attitude essay when I began to really look to the future but I can't put my finger on any other point. I have felt good emotionally and have been pretty much pain free and I can't tell which came first. Maybe I shouldn't worry about it but it is a puzzle because I am still terminal. I'm just having more fun.
I think that's enough for today. I have some more work to do.