What's It Like to Participate in a Clinical Trial? Week 1

I started writing this post yesterday with the idea that I’d give the blow-by-blow from day one, complete with time stamp. But, if you want to know the truth, day one was long and boring, and a detailed post on the subject would be the same. 

So instead, some thoughts on day one and how I’m doing 3+ days after infusion. Spoiler alert: I ran 3.5 miles this morning and while it may have been about 15 seconds off my normal pace, I ran negative splits and, well, I’m doing fine. 

Underestimating

That’s about how I expected I would be. But as I always do, I probably underestimated the overall impact of starting treatment for the second time. Perhaps it’s a natural cognitive defense to minimize upcoming unpleasantries; perhaps it’s just me. 

Infusion day itself wasn’t that dramatic (there was a little drama, more on that later) but just long. I left my house around 5:45 am and got home around 10;15 pm. Stacy drove in once. Went home. Took a train back in with Noah, and then drove us all home. So it was lonnnnnnng. For me. For her.  For the nurses. (Okay, I know it’s cliche to sing the praises of infusion nurses, but really, they are incredible. We take for granted that they are professionals through and through, but their warmth and kindness over 9+ hours of infusion is invaluable.) 

At least 90 percent of the day’s length had nothing to do with the fact that it was a clinical trial and was due to a slow weaning on to the Rituxan meds. About an hour into it, I was starting to have some reaction  which led to pausing the infusion, administering some more Benadryl, and then continuing on our merry little infusion way. 

But here was the first of the underestimating.. Given that I had Rituxan in the past, I thought it’d be quicker this go round. Not so much. And I also figured, I’ll drive home. No big deal. Except for the fact that I was loaded up on Benadryl.

So we’ve got a better game plan for day two this week, both in the transportation front, and also, the snacking front. And my advice for anyone reading this who is or knows a cancer patient is: prepare for the worst, hope for the best. 

Side Effects

I’m not a cancer rookie. Yet still, my initial plan was, treatment in the morning, back in my office in the pm. Carry on. When that became untenable, my plan shifted to: treatment Thursday, back in the office on Friday.  When treatment didn’t end till 8:30 on Thursday, that shifted to: work from home on Friday.

And that plan has worked. The good news about this treatment vs. 2012 is that there is no Bendamustine, which has a nastier side effect profile. The best way to describe the side effects for this is that about 48 hours out from infusion, you feel like you have a mild hangover, less the fun of drinking the night before. So other than being a little foggy, a little tired, and a little achy on Saturday, no ill effects. By Sunday I was pretty much side effect free. 

Now I'm three days out and, well, see the note about the run this morning — always my barometer of health. And we now have a good plan for next three treatments which will have me working from home on Friday. 

So that’s where we are, mid-way through week one. Looking forward to being back in the office tomorrow, and hoping for a shorter day on Thursday.

Finally, just a quick shout of thanks to everyone for the well wishes via the blog or Facebook or via text or email or any other way. It was both a great distraction and buoyed my spirits on a long day.

—Michael