The End of the Trial

The drug clinical trial I've been in since October ended suddenly and unexpectedly.  I haven't gotten much detail, but Wednesday of last week, the coordinator called us to tell us the drug company was ending the study early because the results so far don't justify continuing.

This was very disappointing.  It was the best hope for a treatment.  Without that, there is little in the near term for any treatment that might slow the progress of the disease.

So, it seems the drug was a bust.  I had tried to stay realistic about the chances of a miracle cure.  My own conclusion so far was that it didn't seem to be doing anything for me.  I held out hope that maybe I was in the placebo group, and might see real benefit in the second, open label phase, when I could get the real drug, but I don't yet know which group I was in, and the second phase is not going to happen.

We went in one last time this Wednesday for final wrapup tests and evaluations, but no infusion treatment.  They did a final neuro exam, took final blood and urine samples.  For some reason, despite the blood thinner I am on for blood clots in my leg, it was hard to get blood out of me this time.  I ended up with three needle sticks, one of which made a small bruise, but minor.  At least they didn't ask for another MRI, or spinal tap.

Sarah drove us this time, as she is on summer break.  First, and last, time.

So that's it.  No more clinical trial.  I saw an article in the news that a similar trial for Alzheimers was also terminated recently.  Apparently, the Tau protein approach to treatment is not working out. Not a miracle cure.

So, the best hope for a treatment is not working.  Disheartening.  But, that is why they do the tests - to see what works and what doesn't.

I asked if there are any other clinical trials, but they didn't know of any. 

I think I'm saddest about just not going in to Rush every month. That was the high point of most months:  Something to look forward to.  I don't have a lot of other things I look forward to.  Eating has become a chore.  Social activities are not fun when I can't talk.  I can't do much around the house. Travel by air is not fun.  It seems pretty sad that one of the few things I enjoyed was getting jabbed with needles, but, everyone at Rush is so nice to me, and makes the effort to understand my slurred speech, and I felt like I was actually doing something worthwhile, advancing science, helping research into PSP and other neurological disorders.

That, and fewer side trips to Trader Joe's.