You would think if you want to be part of a clinical trial you could just sign up and get started. That couldn't be further from the truth! All of the trials have specific criteria that need to be met. The trial I am hoping to participate in is sponsored by Roche & Genentech. They are looking for candidates with 'mild' Alzheimer's disease(AD).
Day one was a preliminary test -- if I didn't pass this (meaning if I got too many answers right) I could not move forward in the trial. They only want people who's AD isn't too mild.....you might be asking yourself "what does that mean?". What it means is if your memory is ok and you can remember most things but not all, you aren't a candidate for the trial. I had a friend from my support group who wasn't 'sick' enough and did not qualify. Mind you, this guy can't drive due to his dementia, but I guess his short term memory wasn't severe enough for this study.
I, on the other hand, could not remember most of the words they asked me to remember. I also struggled with subtracting numbers by 3's without using pen and paper. The good news is I did do poorly enough on day one to proceed to day two of testing.
Day two was pretty rough. We had to get up at 6am to get to UCSF by 9am. Bob was with me the entire day and met with some of the doctors on his own. My time was spent going through many many tests. Memory tests, more math equations, trying to remember words they had shown me on flash cards. Drawing pictures, describing common day items such as a pencil, a bed, salad tongs, etc.....Then there was the blood work and a physical exam with an MD. I honestly don't remember what else happened. We did get a 20 minute break for lunch and finally around 3:30pm we were finished.
I will say that although it was grueling and exhausting, the staff is remarkable. They are all extremely nice and kind and really likable. All very smart as you can imagine, and that's what made it tolerable. That and knowing that if I do get selected for the trial I will be doing something to help others. And to help Genentech and other companies understand what stops the Amyloid plaques and what doesn't.
My next visit will be for an MRI and after that I will get a CT scan. If those go well I will be 'approved' and in their Phase 3 clinical trial for crenezumab. It's a two year trial and I will be getting an infusion monthly. I really hope this happens. Being part of something that will potentially slow down the progression of Alzheimer's would be so amazing!
But for now I am focusing on the beach and the waves and the sounds of Maui. We leave tomorrow and the timing is perfect. Bob and I both need a break from the doctors and the testing and the worrying.
Thanks as always for all your posts and prayers on Facebook!! I am blessed. Mahalo🙏
You are the bravest person I know. I am praying for you everyday and you are never far from thought. Thanks for taking the trial steps for you and possibly a cure for so many more!!ReplyDelete
Thanks Patty!! Love you ❤️Delete