It turns out although I’ve struggled with many things (and my apoe status qualifies me for this cohort we wouldn’t sign up to be a member of
) and am justifiably concerned: **I did not have enough amyloid show up in the PET scan to continue with the trial.** This surprised me.
But of course I’m grateful.
Weeks ago:
While waiting for my PET scan I was given a private room with a humorously giant reclining barcalounger, like you’d see in a new movie theater. The guy saw me setting up my book and my phone to scroll through, etc. I was surprised later to read online that in preparation for this type of PET scan the images are better if we’re not even reading (ie having a lot of brain activity) while we’re waiting for the radioactive tracer to do its thing (about 50 minutes).
The biomarker (protein?) showed up in my bloodwork long before the PET scan appt, which was what qualified me to get as far as I did in this study. I guess it’s possible to have the protein in the blood and still have plaque, just not enough to be considered an intermediate or elevated level for this trial.
to anyone reading this who is learning about and considering the study: I’m SO glad I did this & got this information. It’s very motivating. I was treated well.
The whole process unfolded over many weeks - 3 + months for me - so if I were to advise anybody who might be sitting on the fence: things can move quite slowly and it doesn’t hurt just to get one’s self in the system. I actually found it all fascinating.
While I did not have enough amyloid to continue with the study,
they still tested my memory for about 45 minutes
(shopping list, visual memory, versions of previous tests)
& quickly took 8 small vials of blood in the earlier part of the appointment before the disclosure to me at the end.
So maybe they’ll use it or store it for other research, who knows. They said something about using it to look for other bio markers. I asked about Klotho but they hadn’t been told about it being a part of the research.
The range of strong feelings I had (and still have to a much lesser degree) are not necessarily going anywhere. They’re just not overwhelming now, not rendering me quite as scared. More motivated, I’d guess. Knowledge is power. I don’t think I have a pass on all of this, and I’m very open to other studies/clinical trials.
And it turns out my study partner, a good friend, has decided to participate. So if she makes it past the blood test, I may have more to contribute to this subject as I experience this with her.
I saw a black coat with this saying written in white on the back:
Get busy living, or get busy dying.
Jennifer
