(yes...I changed the thread title to make it more dynamic. ; ) ) Jeff has been a participant in the Merck vaccine study, phase 2, at Georgetown University. Though we still don't know whether he received the real thing or a placebo, it turned out that his entire dosing group failed to achieve an immune response, hence they enter a new phase, at a higher dosage, with a new group of volunteers. Due the the fact that Jeff's MRIs have disclosed 3 or more "microbleeds," over the course of the study, he is ineligible for further participation in vaccine studies, including the "open label" phase where they'll offer the vaccine to any former participants once they've achieved the desired response.
At today's neuro app't, where we saw the NP who's seen us through the drug study, the NP proposed the possibility that Jeff would qualify for a new clinical trial: This one involving a surgical procedure similar to the deep brain stimulation they do for Parkinson's patients, only--rather than dbs--they'd be implanting a genetic substance which could ostensibly stimulate neurons to increase their acetylcholine production. But here's the astounding thing: 50% of the participants would be placebo. They would get burr-holes in their craniums, shaved heads, surgery, the whole works--but not have anything done.
And the 50% who get the actual procedure are still having surgery, undergoing general anaesthesia, an overnight in the ICU, for an idea that has not been tested or yet shown any efficacy.
The only reason I could entertain for putting an AD person through this would be if he were aware enough, and rebellious enough about his AD, that he wanted to try ANYTHING--even grasping at thin and tenous threads such as this. But I really don't think that's us. Jeff does not think about his AD all that much. He thinks he's ok, he rarely broods or stews, or thinks "I've gotta DO SOMETHING about this!" I guess he's either past that point, or has never really had the insight to feel that way. As such, it would hardly seem appropriate for ME to encourage him to undergo such an invasive, yet completely untested, procedure.
He is an "attractive candidate" for the study, because he is young (62) and healthy physically, but still, I don't see the point. It is known and acknowledged that general anaesthesia, in and of itself, can cause setbacks in AD people, but I guess someone with the "I'll try ANYTHING" attitude could voluntarily accept that risk. For a guy who is muddling through what remains of his life, reasonably obtuse and content, I'm afraid I may just vote no.
emily, I wouldn't put my DH through that either. In fact i have never even talked to him about any of these trials. He is 81 so chances are he would be too old anyway but his general health is good so I think we will just let the disease run it's course.
I completely agree with you. There is a study being conducted now that is testing a liquid food supplement. Because of Sid's previous micro bleeds, it is the only one he MAY be eligible for. It is innocuous enough that I may let him do it, but any of the other invasive brain trials - no thanks. I don't see any of this stuff working to cure AD in our spouses' future, and they may do more harm than good. Just my opinion.
When I asked the neurologist about the BAP, liquid food supplements, and other trials she was part of at OHSU, she did not recommend any. IMO - from her lack of reaction I am assuming she sees little hope in any of them. As for the food supplements, Art has been taking them for a couple years. I don't know the doses they are using - it may be higher.