My DH has been accepted into a clinical study. He has been entered into a Phase III study with Bapineuzumab. We are hoping that he will not be receiving a Placebo. Bapineuzumab is a humanized monoclonal antibody, which binds to and clears beta amyloid peptide, and is designed to provide antibodies to beta amyloid directly to the patient. It is being funded by Elan. He will have first treatment on the 25th of June. Anyone else in this clinical trial?
I have brought to the top the drug trials/vaccine discussion for you. There are a lot of comments in there about that trial. My husband was on it, but was dropped from it by Elan. All of the information you need is most likely in that thread.
Beachgirl - my husband and I decided not to do the Bapineuzumab trial. The small incident of brain swelling and fluid on the brain kind of scared us. Plus, I don't think back in March we were ready for it - not real yet. Well, it is more real now and my thoughts are the "Phase III clinical trials of solanezumab, also known as as LY2062430". I am hoping they may have it here at OHSU too. This has show similar results without any swelling or other brain problems.
Beachgirl, My Dh has been in the Bap study for about 9 months. He has had three infusions with no side effects. Elan has removed the highest dose from the protocols due to side effect issues according to our neurologist. The other doses seem fine in that respect.
Hi Beachgirl, My husband is scheduled for his 4th infusion on July 2nd. Since he has a clinical background, he loves it! He hasn't really experienced any side effects from this, but we do know he is declining. Of course, we don't know if he is receiving the drug or a placebo. We feel that we are doing something constructive with this disease by participating in this trial. Hopefully it will help the next generation.
Best wishes to you and your husband.........They'll treat him like a king!
Here is a link to a new study starting at OHSU soon. It is Souvenaid, a nutrient-rich drink . We already take omega 3s. We are going to find out more. He may be more willing to participate in this one. Anyone heard of it? There is a another infusion study starting soon, so am waiting to hear from that person.
My DH is in the BAP trial. He started about a year ago and will have his 5th infusion next month. There have been no side affects, but we do not know if he is on the placebo or the drug. There are no improvements so far and I see him getting worse, but the tests indicated that his mini-mental is about the same as a year ago. We have been told that the trial will go public and we will find out if he is on the real drug or not next year. That also means he will be eligible for the actual drug at that time.
My husband is in the Bap trial and gets his last infusion next month. He has declined markedly in the last few months so he is either getting the placebo or the drug is not working for him. His MMSE score is now half of what it was when the trial started and even if he is eligible for the actual drug, what are the chances that he can regain anything of what has been lost? However, it was a good experience for him overall in that he got a lot of attention from the clinical staff and he never minded attending the sessions. It would be wonderful if something positive came out of this study even if it's too late for him.
My husband is a year into the BAP study as well. He has declined in the last few months, too.....He actually loves the attention, so we'll continue as long as possible. The doctor has mentioned that studies have shown that the drug does work as far as destroying the plaque. The question is though, why doesn't that make a difference? I'm sure this study will help future generations. Perhaps the answer is to use it for those at risk? Or, do we know which came first---plaque or tangles?
Inge and maryd---They are telling you the MMSE scores? I was told that we would be told at the end.......
Just noticed I posted a couple of months ago! Sorry if I'm repeating myself.
My understanding is that if it shows it does dissolve the plaque/tangles that it could be developed into a vaccine to give to those at risk before symptoms start appearing.
My husband recently got his last infusion on the BAP study. He will start on the open label in a few months. IMO he's been fairly stable so I can't complain. I believe the drug is suppose to stop or slow down the decline of the disease. Time will tell if it will work for enough people to get approved by the FDA.
Kudos to all of you that are taking the time to go through these studies. The only way we can beat this d#!# disease is through participation in AD trials.
AnnMW, They have sometimes told me the number on,MMSE, other times, they say the score is in the same range. My DH also likes the attention he gets from being in the study. I have seen decline, however. He has had his last infusion and may stay in the open label phase. The last time we were there they said we will not know if he had the drug or the placebo until all participants have completed the study.
Beachgirl---My DH was diagnosed in Jan. 2006 at age 53 and admitted into Phase II of this trial, in the fall of 2006. It was the only trial he was eligible for due to his age and he was so "proud" that he was doing something to help. About a year ago, he moved from Phase II into Phase III and has about a year left of infusions. When he moved into Phase III, we learned he had been getting the "real" vaccine, not the placedbo, the entire trial. He continues to decline steadily, possibly due to fact there is a chance he has a wierd form of FTD, not AD, and it is obvious to all, ie, the doctors and me, that the trial is not helping him. On the other hand, NO SIDE EFFECTS WHATSOEVER and he LOVES going for his infusion because he considers the doctors and nurses his friends. And, as I have said before on this site, I consider the biggest benefit to our family of this trial is that all the doctors and staff in the neurology department at this large medical school/center in town know us on a first name basis. At our last physician visit, I specifically asked if he should continue in the trial given his decline and the doctors said yes, because they have to know the ones it doesn't work for as well as the ones it works for, and of course, my continuing hope is that something found in this trial helps someone in the future (including me, since I'm only 52, and certainly my children!) Anyway, everyone has to make their own decision----but being in this study has been very important to us, even if it has not actually "helped" my husband's prognosis. Good luck!
Beachgirl, my DH is about to start the Phase III trial as well, so it's good to know that others have been participating without any side effects. Thanks to all of you whose spouses are in this trial. I was advised that if they can dissolve the plaques and tangles that the patient 's memory loss would not progress. Of course we won't know if he gets the "real thing" or placebo. I am hoping he gets the drug.
My DH has been in a 6 month clinical trial (phase 2) through Glaxo Smith Kline. Monday he will take his last pill and be offered a 6 month renewal. We plan on stopping immediately. He has declined to the point that I believe he is either 1) taking placebo, or 2) taking the real med but it does not work for him. On Tuesday, he will begin taking Namenda along with the 5 mg of Aricept that he has taken for 13 months. (Namenda was not allowed as long as he was on the trial drug). If I had it to do over, I am not sure that I would put him through this. On the other hand, perhaps in some way we have helped the effort to fight this horrible disease.
My DH has done better since going on the Namenda in March. The first neuro flatly refused to give him the Namenda. We didn't like him anyway and went to the new guy in March. He also put DH on Sertraline last month after DH had been ranting about the parking here at the condos. That also has helped.
I think he improved. He was worse at the end of last year and the begining of this year. He is much better than most of the LO's I read about, still able to do a lot for himself. The main thing is his memory which I can handle. In fact he is so "normal" I get irritated when he does something out of his norm!