My husband has one infusion left and then an MRI and a 'follow-up" visit. Two weeks following that visit he will be eligible for the open label. So, I guess we have 2 1/2 to three months to go. Sue
No, I haven't seen any improvement, only decline. Of course, we don't know if he is receiving the drug or not. Still not sure whether or not to do the open label.
Did Sunshyne's DH see any improvement or stay the same? Even that would be good news!
We are in the same place. DH had his final infusion in Nov. He has his final assessment this week. We plan to continue in the open label phase. It is something to do. I have seen no improvement. I assume he has had the placebo. I do see some loss and if there is not any change in open label after a period of time, will opt out.
My husband has already received his first open label infusion. He is still doing well. Last week he replaced a broken roof skylight and did a good job.
I believe the drug is suppose to stop or slow down the progression. You may try the open label for awhile and see how he does.
My DH has been in this trial since fall of '06, and on the open label for at least the past year. We also found out that he was getting the real drug the entire time. It doesn't seem to have helped him at all----but the doctors and I will keep him in the trial as long as I can get him to infusions and he cooperates, although the latter is getting harder each time. And since the doctors aren't really sure whether he has EOAD or FTD, it is beneficial to have him in trial from their academic point of view. And, the hospital is five minutes from our house, so other than the stress and taking a day off of work, it is really pretty easy for me.
My husband has had his last BAP infusion and has one MRI, one PET scan and the followup visit left, then open label. How do you feel the study went for your husband Ann? I have noticed a slow steady decline over the year and a half but the MDs tell me that the testing has remained steady and there have been no changes on the MRI's. Whose to say? Sue
My husband has had one infusion in the open label study. There appears to be no reaction. He may have been on the real drug all along. His mini-mental exam has stayed at 21 for the last year. He does have the apoE4 gene. We will see if there are any changes in the next year.
My husband has had his second open label infusion. His MMSE has improved since entering the trial. I have seen a very slight decline in one area and slight improvements in others. We just got back from a week at the beach and there were times I "forgot" he had AD.
Just a short note for now, but we have decided to go ahead with the open label infusion. The first one will be on April 23rd.
It is obvious that IF he has been receiving the drug, it isn't working, but I guess I can't leave any stone unturned........If you know what I mean. HE wants to do it and I do know that he will receive the best medical care.
Problem being........he has to remain at home during this time. Since I haven't had any luck/support finding a nursing home, it doesn't really matter....Yes, you may sense a bit of bittterness there!----However, I have said that we will TRY this, but if an opening does come up and the infusion doesn't seem to be working, we'll stop.---Right now the doctor is suggesting 3 infusions to see if there is any difference.
I haven't been able to find out any of his cognitive scores. Any suggestions?
Sue----My husband has declined during the past 18 months to the point of needing nursing home placement. However, we don't know if he is receiving the drug or not. Because of his medical background, he is at "home" doing ANYTHING for SCIENCE! LOL---Trying to tell him that putting pants on is for SCIENCE!
Maryd and Trish---Thanks for your posts. Maybe there IS some hope?
MY hb is not interested in doing any of the studies - he can't handle the testing to see if he has declined.
You can find the MMSE online and there is another one I found out about Self-administered Gerocognitive Examination (SAGE), http://www.ncbi.nlm.nih.gov/pubmed/20220323
My husband has done the extended study (3 infusions with the known drug), but today I have decided to stop. I'd be curious to know if anyone here has continued with the study.
Ann: My husband had at least 3 infusions during the open label phase, but we also found out he had been getting the real drug since he started, which was the fall of '06. We finally had to drop out of the trial @ 9 months ago when he became too hard to handle during the infusion. FYI, no improvement as far as we could see. He has young-onset dementia, not familial, and possibly FTD, although the petscan indicated AD.
Ann, My husband has been in study for about 2 years. He has had 4 infusions since it has been open label. He is due for another in February. He has declined in the last 6 months. I am not too sure how long we will continue in this study. The advantages are the attention he gets from the staff, possible contributions to medical knowledge and close monitoring of the disease. I am really tired of the visits and I know this is not going to help him in the end.
My husband is still in the study since June 2008. He has been in the open label for over a year and we're not sure if he was on the real drug during the blinded portion of the trial. Aside from short term memory loss he does fairly well and is not a burden to me at this time. I would say he is in late stage 3- we will continue with the infusions.