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Joined: 12/3/2011
Posts: 8
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My DW in participating in the subject trials. I would be interested in discussion of observed results for other participants in these trials. We discovered that she is Apoe4 after enrolling. She is nearly finished with the regimen and has shown continual detioration. We realize that this may be due to her genotype, but she may also be on the placebo. So if there are other trial participants out there, we would be interested in their observations.
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Joined: 11/29/2011
Posts: 7027
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Hi, I am not a participant in any trial. I do have AD and have known several people in trials.
With those that are double blind, the participants can usually tell whether they are on the placebo or not after a short period, by how they feel.
Sometimes, if the trial is far enough along and the patient is on the placebo, you are given the opportunity to get the drug after the trial is complete.
A very few report that they were never told if they were on the drug or not.
If you see Lisa 428(?) posting anyplace, ask her. She is Early Onset, and bless her, she continues to participate in trials. She is currently on one where the patient is given a transfusion.
More power to those who are willing to participate in trials. It's the very best way to find the cure or help.
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Joined: 11/30/2011
Posts: 740
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Lisa is in a trial of a monoclonal antibody drug, but it's not bapi. Check her thread on this forum.
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Joined: 12/14/2011
Posts: 12
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I tried to get my husband in that clinical trial but they were full of the ones that had the gene. I did go to another place and got him in a phase II of ACC-001 but I can't tell if it's making any difference. Is anyone on that trial?
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Joined: 11/30/2011
Posts: 740
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Hi, SusieQ. ACC-001 is quite different from bapi, solanezumab, and the monoclonal antibody drug that Lisa is on. All three of these latter drugs are "passive" immunizations, that is, the antibody itself is the drug.
ACC-001 is an "active" immunization approach, in which the drug is designed to make the patient produce his/her own antibodies against Abeta.
Why don't you start a thread of your own on this forum to ask your question? People interested in ACC-001 may not read this thread.
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Joined: 12/21/2011
Posts: 2
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My wife has had two infusions of bapineuzumab and I have not seen any good results yet, in fact she has been getting worse, but she also is on aricept 23 mg and Namenda.
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Joined: 12/14/2011
Posts: 12
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JAB, thanks so much for the explanation.
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Joined: 11/30/2011
Posts: 740
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Hi, Frank. Do you know whether your wife carries the APOE4 allele?
How long is the double-blind, placebo-controlled phase? Will she be able to get into an open-label phase when it's over?
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Joined: 12/3/2011
Posts: 8
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My wife is in a 78 week trial. She receives her last infusion (six total) next week. She then returns for one more MRI after six weeks. At that point she is supposed to be eligible for open label use of the treatment. I'm anxious to find out if she has been on the drug or the placebo. If she has been receiving the real thing, I am dubious about continuing with the treatment. If it has been the placebo, I will probably continue the treatments to see if there is any effect. Anecdotal reports via the doctor's waiting room (obviously highly reliable :> ) would lead you to believe that there are benefits even in APOE4 patients. I'm not going to believe that until I see the final report.
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Joined: 11/30/2011
Posts: 740
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Are you sure they'll tell you what she's been on? We've been in two clinical trials, and have never been told, not even after the trial was completely finished and the paper published.
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Joined: 12/21/2011
Posts: 1
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my wife has been on this drug, at the alzheimer's disease research center at boston university medical center, for a long time. the director there is dr. robert stern. she was in the initial trial and we were told she received the real drug. she is APOe4 positive. she was in an extended study exactly the same procedure 6 IV's 6 MRI's. she is on another extended study that is 4 IV's per year and 1 MRI. do we see results ???maybe. she seems to be doing well but because alzheimers moves at different speeds in each person we don't know for sure. i only know that i would rather have some hope to hold on to than just watch her go. she is 66. she was forced to retire 5 years ago after being demoted twice from a property managers job at the local housing authority down to receptionist were she had started. it was not pretty. they were not kind and certainly not undestanding. she will be in these extended studies for four years. this drug is in phase III trials so the next step as i understand it is FDA approval. one problem they had was getting people to participate. so i would reccommend anyone interested find a trial near you and get more information.
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Joined: 11/30/2011
Posts: 740
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Carewornhubby, thank you so much for telling us about your experiences in this trial. It is particularly exciting that your wife seems to be doing well even though she is APOE4(+).
Please also join us on the Spouse/Partner Caregiver Forum, the second forum on the Message Boards list.
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