Alzheimer’s Study Number 14

Well now here’s a pickle. Christine, my case manager, called the day before Thanksgiving. Sadly, this was not to wish me a happy holiday.

She told me that there was a conference in Barcelona. One of the goals of the conference was to allow researchers to share information. Two researchers shared their failures and why they stopped their clinical trials. In this case participants showed a small decline in memory and cognition in the first six months of taking the drug. 

Bear in mind, reporting failure is important because scientists can use the information to find out what works and doesn’t work. They can make alterations accordingly.

The problem for me is this; Those two failed trials involved the same family of drugs that is in my clinical trial. Whoops.

This class of drug is called a BACE 2 inhibitor. BACE is shorthand for beta-secretase which is an amyloid precursor protein. I’m iffy on this next part but I think it snips amyloid into pieces so that it can be cleared away more easily. In ALZ those pieces that don’t get cleared, clump together forming plaques.

So now what? In our clinical trial, they have not noticed cognitive decline in me or any other study participants. I have taken the mystery pill longer than six months, so am I out of the danger zone? Is there a danger zone for this particular drug? Am I even taking the drug or am I taking placebo?

It is my understanding that, even though the University of Texas system is conducting the actual trial in this part of the world, the drug company’s ethics review board was the actual entity that took all this information and decided it was OK to continue.

Of course, they had to tell me because I am the ultimate arbiter as to the extent of my participation, if any, into this study. But the company has invested millions into this drug. I don’t know their priorities. I do know that I am still doing fine cognitively and that my health is excellent.

This is why you have to be your own health care advocate. The company wants to get the drug to market. The study people want to continue the study. I am pretty sure that they are practical and ethical people but I am in control of my body. Although they are doing all sorts of medical checking on me, I have my own doctor as backup. Dr. H is in my corner.

I sent her an email. When did I reach the age where the doctor is young enough to be my daughter? I sent this email on Thanksgiving and she responded within 24 hours. I worry about this girl. Is she working too hard? I hope she was just taking a break from the holiday and is not lonely. Still, I am grateful that she got back to me so quickly. I told her that I am of the mind to cautiously continue but wanted her input. Then I asked her what she would advise her mother in this situation.

She sent me a well-reasoned and thoughtful response in which she concluded that, for the time being, she would advise her mother to stay the course. I’m assuming here that she actually likes her mother.

So, for the time being I am going to continue. It’s a leap of faith that a trial medicine will save me. It’s a leap of faith that this medicine will not hurt me. They are ethically bound to tell me if I start to lag in the cognitive tests. Then I will have to decide if I would have lagged more without the drug.

Sigh. It’s never as easy as we hope.