Wednesday I got my seventh infusion of fourteen in this ABBVie Arise clinical trial. It was a light day for other tests: No blood draws or ECG. Just neuro and psych exams. It has gotten pretty routine. Took a couple tries with the needle to get the infusion started in my arm, but not a big deal. Then just waiting three hours for whatever is in that black IV bag to infuse into me.
I started getting screening tests to qualify for this study in August; got the first infusion in October; with infusions and tests continuing until this coming October. Seven infusions done. Seven more to go. Halfway to somewhere.
Thankfully with the light schedule today, we didn't have to leave home in the dark of night and were able to get up at a halfway decent time (5:30 alarm this morning). The weather wasn't great: Not as cold as it has been (only 31F), but freezing rain forecast for this morning. Lyn was apprehensive about driving in the freezing rain. As it turned out, the roads were icy until we got on the expressway, but after that, the worst part for Lyn was being sandwiched between two semi's on both sides of us, both throwing out spray that coated our Mini's windshield.
Google Maps suggested an alternate route in Chicago to avoid traffic on I-90, but then changed its hive-mind and said just stay on the expressway, which was a relief to stay with familiar routes. Having Google tell Lyn what to do instead of me is great, as it is hard for me to speak loud and clear enough for Lyn to understand. I just crank up the phone volume, and let Lyn get impatient with Google instead of with me. If I could just get Google to answer Lyn's questions, that would be great, as I often can't get words out fast enough to answer her.
I also got six Botox injections in my jaw during the morning when I saw my doctor. No, not for cosmetic purposes: Looking younger was never a big goal for me. This is to try to control excess saliva that, among other inconveniences, increases difficulty speaking. The excess salivation (Sialorrhea) is a symptom or side effect of the PSP, which causes loss of control of the oral muscles that normally control salivation. This was my second such Botox treatment. The first didn't do much, so they tried a stronger dose this time. Three little shots on each side of my jaw with a tiny needle. Surprisingly, to the outside of the jaw. Slight burning sensation, but not really painful. I'm hoping the stronger dose has more effect. Takes a few weeks to take effect.
Getting back to the clinical trial, I have no idea whether it's working. I also don't know whether I am getting the drug, or the placebo. I think I will find out at the end of the trial, sometime, hopefully. The doctor said she had heard that the trial overall is going well, but I haven't seen any announcements. I continue to be optimistic.
My condition is just a little worse overall than it was a year ago. I think my speaking and walking skills may have declined a little, but it's hard to measure. On the other hand, the double vision problem I was having a year ago seems to have mostly gone away. So, I'm not dying imminently, as far as I can tell. Sooner or later it happens to everyone, but we're still buying green bananas.
At the next infusion, in March, I get another MRI, to see if my brain is shrinking. That will be a longer day.
Of course, assuming this trial shows the drug works, I would hope to continue getting infusions in the two-year "open label" extension study. So, I actually hope the infusions are nowhere near half done, and will continue. We'll have to wait and see.
When we were done at Rush, after 3 pm, the weather had warmed up just a bit, to about 37F, and the light rain was no longer in danger of freezing. We made our usual side trip to Trader Joe's on Roosevelt at Michigan Ave in Chicago. Tried a different route, taking surface streets instead of I-290. Seemed good, but always an adventure trying different routes in an unfamiliar big city. For some reason, Ms. Google seemed not to realize the entrance to Trader Joe's is on Wabash, and was recommending making a U-Turn on Roosevelt at Michigan Ave., which we humans thought unwise, so we improvised. Just like in California, Trader Joe's always has tiny congested parking lots. Hard to imagine they succeeded in Southern California with that formula, but in the Chicago Loop it seems normal.
On the way home, Ms. Google recommended avoiding a traffic jam on I-90 by getting off for two miles and taking the parallel surface street. Not sure that was worth all the lane-changing stress that caused Lyn, but she did it.
Home a little after six in the evening, to a great salmon dinner (the cats' favorite) that Sarah had ready.
Speaking of Sarah, she is also now making frequent trips to Rush, to get injections in her knee, to hopefully keep her running on it. Rush seems to be the place to go for cutting edge treatment.
