Clinical Trial Progress

Rush Medical Center Professional Building

For those of you who may be in suspense, worrying about how my immunotherapy treatment clinical trial is going (Yeah, unlikely, I know, but just in case)  Here's the news:

(or, if you missed my previous blog about PSP and this experimental treatment, you can catch up there: Previous "Progress" blog)

October 2nd, I had my first ABBVie Arise clinical trial immunotherapy infusion.

Last Wednesday, Halloween, I had my third infusion.  I thought about a zombie costume for the occasion, but thought maybe they'd take it seriously. This was the end of having to go in bi-weekly.  From now on, the rest of the infusions will be at monthly intervals.

So far, pretty uneventful.  No noticeable adverse effects, other than lots and lots of needle sticks.

Nothing like the drama of the spinal tap they did to screen me into the trial before I started getting treatments

I get the treatments in the building above, on the Rush Medical Center campus, on Harrison Blvd, about 2-1/4 miles west of the downtown Chicago "Loop."

Each infusion lasts 3 hours, followed by a 20 minute "flush" infusion, so I sit there for about 3-1/2 hours with an IV needle in my arm.

Unlike chemotherapy for cancer, it doesn't hurt (other than the needle stick). No burning, really no feeling at all.

The tests they do with each infusion vary a bit:

• Last week, they only took one blood sample.  
• The previous time,  they took blood samples THREE TIMES, once before the infusion, one after, and another an hour later. I came out with three bandaids:, two on one arm; and one on the other covering two needle sticks, total 4 sticks including the infusion (shoulda got a photo of my arms).
• This time they did an EKG (no extra charge for the chest hair spot removal)
• The first infusion required a urine sample.
• In December, I get a repeat Brain MRI, to see if my brain is shrinking.
• Every time, they do a neurological exam (eyes, reflexes etc)  and cognitive, psych and memory tests (you know, remembering three words). (* See note below) 

I get the infusions in a 10' X  10' windowless exam room, where we spend most of the day.  People come in and out to do the various tests and exams, and check on us.  The staff are all very nice, friendly and helpful.  And, I see my doctor each time, which is helpful, as I can ask about other issues at the same time.

We have to leave our house about 6:30 in the morning to get to Rush through Chicago rush hour traffic by 8:00, so Lyn packs something for me to eat for breakfast after I get there, to save time getting ready to leave in the morning.  We usually have lunch while I'm getting the infusion.

So far, I haven't noticed any changes, but really I'm not supposed to.  If the treatment is working it will slow the progress of the disease, which, in the month since the first treatment, would not be perceptible anyway.  So, it's impossible for me to tell if it's having any effect.  Over the next year, in comparison to other patients, they'll see. Oddly, I guess, the best, most hoped for, outcome of the treatment would be if there was no change at all.

It was also nice to hear Sunday that my friend Mary from our little church in Kouts, IN, who also by coincidence has PSP, got into the same clinical trial, in Houston, nearer where she recently moved. What are the odds of actually knowing someone else who has the same, very rare, disorder?

Rush also just happens to be 3 miles west of a Trader Joe's, on Roosevelt, where we usually go afterwards on the way home, to get our fix of old familiar Southern California food.

Trader Joe's has not yet made it across the border to Northwest Indiana, so it's otherwise a very long drive.  Ice cream does not last well on the drive home in the summer.  But 3-buck Chuck (it's a tad more expensive than in California) transports legally across the state line.  It's pretty convenient to stop by on the way home, and makes for a scenic drive along Lakeshore Drive afterwards, going home.

Rush to Trader Joe's for Pasadena Salad

You may just be able to see that the CTA Pink Line goes right next to the building at Rush, from the Loop.  In theory, we could take the South Shore Line commuter train from Dune Acres to Millenium Park (you can see Millenium Park, and the RR tracks, at the right in the photo above) in Chicago, wheelchair two blocks to the Wabash CTA station, and take the pink line to Rush, where the station is a block south of my building.  We could, if we wanted to leave the house at 5:30 to catch the 5:53 train, to get to Rush by 8:00.

So far, Lyn has been willing to drive, and that way, she has the car to take to Trader Joe's.  We dropped Matt and Jenni off at Rush two weeks ago at the end of their visit, before their Eagle's concert in Chicago, and they got to experience the commute with us.

So, that's our "Trial" so far.  Not too grueling.  A bit of an adventure, and hopefully, most of all, progress in the science of treating degenerative brain disorders.

* Note about those cognitive, psych, and memory tests:  So far, I'm probably no more demented than most of you.  Maybe less, in some of your cases.  I just get tested more frequently.

Here are the links to learn more:

About Progressive Supranuclear Palsy:  About PSP

Clinical Trials website:  ABBVie Arise Clinical Trial

ABBVie's website:  ABBVie

If you would like to donate to brain disorder research: Cure PSP