Guinea Pig

Today is day 4 of my first, and hopefully last, clinical trial. It's the first day I haven't had an appointment at the Sarah Cannon Colorado Blood Cancer Institute. I think it might be good luck that the institute and I share the same first name. CBCI is attached to Presbyterian St. Luke's, just a stone's throw from Denver's city park, where you would find the zoo and the museum of nature and science. Brent and I keep saying we'll go to the planetarium one of these days before or after one of my appointments, but it hasn't happened yet.

The first day of the trial was long, over 12 hours. It started with an icy drive in, followed by a few unsuccessful attempts to draw my blood before resorting to another picc line. I then met with Dr. Maris, who gave me news I should have been expecting. The results of my testing from the previous week were in, and they didn't look awesome. My bone marrow biopsy showed that the leukemia was back up to 30%. Since my last biopsy was about a month earlier, and I was at about 5% then, I was somewhat alarmed by the rate of growth. I also had 7% blasts in my peripheral blood, which means the leukemia had already grown so fast there wasn't enough room for it in my bone marrow. Another piece of news came from my echocardiogram. Apparently my heart isn't pumping blood as well as it used to. I think they called it the ejection ratio? It should be somewhere around 55%, but I was at 40%. Then came the blood counts. My hemoglobin was down to 6.6. A blood transfusion is generally indicated below 7. So one or all of these pieces of news explained why, for at least a week prior, I'd been feeling like absolute shit. No perk whatsoever. I'd been spending my time slowly shuffling between my bed, my toilet, and my couch.

So anyway, once I had the picc line in, they were finally able to give me the infusion of the study drug, MEDI7247. I don't know how drugs get their names, and I assume if this one is approved it will get some new shiny name, but drug names generally suck. They should call it something like CancerBlast if they want to attract some attention. The 90 minute infusion went just fine, and my parents came to catch some of the action. The room I was in was very small, but they both brought tiny camping chairs so they could squeeze in and watch the drugs flow.

According to the study guidelines, I had to sit and wait for 6 hours after the infusion for a third set of labs. It's a good thing I needed a blood transfusion, because that sucked up a good chunk of waiting time. Though, getting a blood transfusion is really just another form of waiting. While I sat in the infusion clinic, Brent watched some basketball, I read about amazing Colorado adventures that other people get to have, and we both got to sample some hospital food. My favorite thing at this hospital so far is the chicken tenders. The fries are pretty terrible.

I've had quite a few blood transfusions so far, and I don't always stop to think about how this unit of blood came from another human being. But when I do, I wonder what kind of person they are, and particularly how healthy they are. Sometimes I don't feel any better after a transfusion, and sometimes I feel a little perkier. This particular unit must have come from an unusually big, strong man, because I felt pretty great afterward (I only say man because men have a higher hemoglobin range from what I've read). My hemoglobin jumped from 6.6 to 8.1, which meant I didn't need the second unit like they thought I would. If you're a big, strong man with lots of red blood cells, you should really consider donating some of them. You might just make someone's day.

I went back to CBCI on Tuesday and Wednesday for more lab draws and follow up exams. Everyone, myself included, wants to know if the drug is working for me. I won't know that for a while. I've been asking a lot of questions about how well the drug has worked for other people, but from everything I've gathered, it's really too early to say anything at all. The clinical trial (experiment) I'm in is a phase 1 trial. They're really mostly concerned with the safety of the drug at this point, and they're testing it on a very small number of people. What I have been told is that each cohort has 3 people, and there have been 3 cohorts before mine. So...including my cohort that's only 12 people in the world, and the universe, who have received this drug. That doesn't seem like a whole lot. With each cohort they raise the dose, and once they see people having bad side effects, they will know how much of the drug is safe to give to people.

The only hopeful news about this drug is anecdotal. There is another patient at CBCI in the previous cohort who has AML. And her AML is even shittier than mine, and she's had a lot of chemo and multiple stem cell transplants already, and nothing has worked for her. But I guess she's responding to this drug. So who knows, maybe it will work for me too. I am slightly encouraged by the lab work; my peripheral blast count dropped from 7% to 3% between Monday and Wednesday. But to know any real results I have to wait at least until the next bone marrow biopsy, which will be on day 15.

What low-energy activities would you do while you were waiting for your next bone marrow biopsy?

Me, blogging, right now. Check out that hair growth.