Clinical Trials: After Litany of Tests and If Accepted, It’s a Whole Other Experience.

The wait is over. For a while I thought it would never get here. Up until about a month ago, it was only talk, wait, wish, talk some more, wait some more and then . . . take a bunch of tests as part of the pre-screening phase in case I was accepted.

Accepted in a new clinical trial, that is. A clinical trial featuring the latest in FDA-approved cancer treatment for Leukemia.

Sure, I could have said to heck with all these tests because there was no guarantee I’d be accepted. However, I figured I had nothing to lose in taking them because it would mean having the most recent information on file relative to what’s going on inside me.

So, over the course of a few weeks, I was scanned, poked, prodded, weighed, examined . . . gave blood, had blood pressure taken, gave more blood (I felt like I was at a vampires’ convention), and, well, you get the idea.

The good news is I passed with flying colors.

Yet, I still had no idea of the pending clinical trial. Until late one Friday afternoon about two weeks ago.

I learned I had been accepted and needed to report to Methodist Hospital at my earliest convenience Monday to, you guessed it, give more blood. Evidently, a vampire felt left out.

The actual trial started the next day and I reported for duty at 9AM on that Tuesday. Happy Mardi Gras!

Since all this is being handled on an outpatient basis, at least this initial phase,  I was set up in a private room at the Methodist Hospital Clinical Research Institute, deep in the heart of the Med Center in Houston. This is also the first time I’ve done anything like this. Despite them explaining to me what will take place these next weeks, experiencing it is quite a different matter.

Although this initial day was supposed to last for an estimated ten hours, I ended up spending the night there . . . in the ER of all places. Nothing serious but they wanted to keep fluid IVs going and to monitor me all night.

Not what I was expecting or planned!! They hadn’t planned on it either.

Thus far, my body’s acceptance of the new drug . . . okay, take a breath . . . Obinutuzumab (breathe) was for the most part alright. There were moments during the afternoon where I got hot, then cold, then back to normal, then hot and cold again. Given the amount of drugs in my system, this was “normal and expected.” If you say so. It felt really strange to me and more than just a little uncomfortable.

On Wednesday, or for me an extension of Tuesday (did I tell you that one does not get any rest in the ER, let alone any sleep), the day went pretty uneventful, thank goodness. However, when the adrenalin wore off late Wednesday evening, I sort of crashed and burned. But I was home!

The next week (this past week), I went through Tuesday on a day’s full of fluid IVs, monitoring, pre-meds (as in heavy duty Tylenol and Benadryl) and a slow-drip IV application of Obinutuzumab. Everything went fine except for their calculation on how long I would be there.

Seems my estimated 3pm departure time went to a 6:30pm departure time. Both my pulse rate and anxiety levels were up at this point, not to mention my frustration on having to make my ride home wait (thank you, again, Denise).

The medicine seems to be doing what it’s designed to do; namely, to kill these cancer cells and reduce the size of various lymph nodes throughout my body. However, one side effect is fatigue, and, brother, that is taking its toll on me. I don’t know if anything can be done to offset that but it’s something I will ask Dr. Iyer when I see him this coming Tuesday.

If it were just me to worry about, I could sort of handle that alright. But, with my wife, Pam, at home recovering from her stroke, I also have those worries, too. Insurance finally kicked in for her yesterday, March 1, so we should start being able to get some things accomplished that simply would be too expensive to do without insurance.

Alas, the journey continues. Hope is still present, though wavering at times. I have my faith check every morning when I talk things over with Him. I’m blessed that I have wonderful friends (my extended family) and a very loving wife.


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