My husband is 54 and the doctor suggested getting into a trial for ACC-001 has anyone heard of this - it is a huge commitment - I don't know if it is worth it - let me know thanks
That's the Wyeth/Elan vaccine. We are nearing the end of our participation in the comparable vaccine being tested by Merck. We were in Phase 2, and apparently no one in my husband's dosing group showed an immune response to the concentration of vaccine given. Thus, they'll be doing another round at a higher dose before opening up what they call the "open label" trial to any interested participants. (Open label means you know you're getting the stuff, not a placebo.)
I think the value of participation has to do with several things. Would you have to travel far to the study site? It can be valuable to be getting the ongoing medical attention provided by the research team. Over the course of it (2 years so far) a couple of the required MRIs have turned up microbleeds that we otherwise would not have known about. Is this worthwhile? I don't know, but personally I'm interested in having ongoing reports. I've watched his MMSE teeter and totter a bit over time and whatnot. Mostly, it's given us an excuse to go somewhere, get something different for lunch, and feel like we're at least trying to contribute.
My DH is almost 60 and is in a placebo controlled phase 3 trial of Bapineuzumab (AAB-001). This through Elan Co. and for non-carriers of APOLIPOPTOTEIN E4. He just started last June and has received half dose of med. In Sept he will receive full dose. He is in perfect health except for his brain. We want to do what we can for research and for him. The study is a year and 1/2 and we have to drive 2 1/2 hours for treatments. I am glad that they do so many medical tests on him 6 weeks after his infusion. We also go in 2 days before his infusion for mental evaluations to see if medication is working. It is a big commitment and I will be using all my sick days for him to be in this clinical trial. I hope I don't get sick! If you can do this, I think you will feel worthwhile. We may be helping others with this disease.
I will have to take sick time from my job as well - He is not happy about it at all - his sister is the one encouraging this - Will it help him I don't know - will it make him more upset to have to go to doctors and have tests this could be really hard - I don't know what to do
I think that is why my hb is not interested in doing any studies - the mental testing they do. It is just too hard emotionally at this point. But, he says whatever I want to do he will do it. But, I want him to want to too.
I totally agree - he is going fo the first MRI today with his sister - he is not happy - but I told him he can stop anytime = his sister is really pushing this
My DH has been on a drug trial through GSK for several months. We drive about 45 minutes from Georgetown, TX to Austin to meet with the research doc. The medical follow-up has been excellent. However, I don't think the drug trial is doing much. (He is either on placebo, half dose, or full dose of drug). It is phase 2 and double blind. The trial ends in late September with an option to renew for 6 months. I don't think we will renew but I am glad that we have been involved. Somehow, someday, better meds or even a cure would be such a blessing. We can only hope that the future generations won't have to go through the grief that we are experiencing.