This morning, I felt better than I have in a long time. I started my Solymedrol drip and got the metallic tasting mouth pretty much right away, then moved on to the trial drug.
Notable things for today: they had more trouble drawing blood, still from the right arm, seem to be developing scar tissue on the "best" vein. The IV catheter is still holding open though. They increased the drip rate, so I was there from 9 to about 1:30.
I developed a rash around the time I went home. I documented it with the research staff and took a benadryl. It was like little welts or mosquito bites, on my arms, upper legs, chest and stomach. It is common and only causes concern if it turns into an allergic reaction--throat closing, unable to breathe. It went away now but I'm still a little itchy (that's how it started actually). The one benadryl I've been taking in the morning hasn't made me sleepy, but that second one did seem to hit me more. They will decrease my drip time tomorrow.
Today, I was given my care packet. It includes 2009 and 2010 calendars that are marked with all my follow up blood tests, doctor visits, and survey dates for ongoing monitoring. In addition, there was a patient guide discussing all of the potential side effects and resources and a family guide. We scanned in the family guide in case anyone wants to review it. There are some yucky photos on one side.
The research staff said I am not a guinea pig; they don't use that word--I am a participant. I have all kinds of holes and bruises, so I'm going with guinea pig. Is lab rat any better?!