On the days we have labs beforehand, the appointments start around 6:30 in the morning. So we have to leave before 6 to get there on time - maybe even earlier depending on traffic. Which means sometimes we have to get up around 5. And we've gotten use to staying up late this past week. So Karen was having a bit of trouble staying awake to talk to the doctors. Which I was worried might concern them, however, her blood work shows an increase in both white blood cell and platelet counts. They're lower than they should be, but they've gone up since her last lab work two weeks ago, and are high enough to start the next cycle. So Karen was OK'ed to start the next cycle of the clinical trial. She's mostly slept through it so far, which I think makes it easier on her.
For the most part, I have been rather impressed with the care we've been getting with Mayo Clinic and their attention to detail. But there's something about this clinical trial that just feels a bit off. I'm not sure if the research coordinators are only working for Mayo, and exactly how they're connected to the outside research. But sometimes it doesn't seem to be on the same level of professionalism that we've gotten use to at Mayo Clinic.
Today they had a calendar they asked Karen to help fill out, listing which side effects she had when. It was a bit odd to do, not only after our week off, but without having asked us to make notes or even suggesting we mentally note what happened which times. I probably could have pulled up the blog but the researcher seemed to be in quite a hurry and didn't seem all that interested in specifics. Afterwards, even without looking anything up, Karen was remembering things that had happened at different times, but what were we to do then? Perhaps they aren't as interested in side effects at this stage of the trial, but it felt unprofessional. Also, everyone is brushing off this unusual sensitivity to air that Karen often gets with the injection. It reminds me a little of the cold sensitivity she would get while on FOLFOX. I wonder if this will become a bigger issue if this trial stretches into the winter months.
Another thing that concerns me is the eye exams they administer at the start of the cycle. They have had to call us back after our appointment both times, as they had forgotten the eye exam. The excuse is that it's not a usually part of a clinical trial's testing. But that makes me a little nervous as to why someone thinks it's necessary here. At the very beginning, before we even signed any consent forms, I asked the research team why it's part of the trial and if there was any risk of blindness. They said they had no reason for concern, and that the only reason it was being done is because the sponsor wanted it done. The other thing is no one seems confident when they're doing the eye exam. The first time around I believe we had a visit scheduled with an ophthalmologist, but it was canceled and a researcher ended up taking a quick look at Karen's eyes. Today they asked the oncologist to look and he said he was unfamiliar with the particular type of ophthalmoscope that was available, but took a look anyway. Perhaps they are trying to save us some time or money, but I think I would have prefered the ophthalmologist visits.
Looking at the schedule, it appears there are no 7 hour observation periods this cycle. All injections have 2 hour appointments. They give her the acetaminophen (Tylenol) 30 minutes before the injection, and then observe her for an hour after the shots. That leaves some room for preparing the injection or unexpected delays, which seem to happen quite regularly. In theory we should be able to get in and out in 1.5 hours, but 2 hours is fairly typical. The other thing I noticed about the schedule is that we have Labor Day off. I realize the entire cancer clinic is closed on this day, but something about it still rubs me the wrong way. We had asked if Karen had to come in for 7 hours on her birthday, but were told we had to follow the clinical trial's schedule. This is a potential life extending or life saving drug, so the explanation seemed quite reasonable, but now with Labor Day off... I have to wonder if it was really necessary to have her in on her birthday, and if so, if the 7 hour day couldn't have been swapped with a different 2 hour day.
