Medical Forum / Diseases and Disorders / Alzheimer's / February 2006
Back to the Original Topic: Flurizan Trial
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Alan Holbrook - 22 Feb 2006 11:34 GMT I've been corresponding with the doctor who wants my wife to join the Flurizan Phase III trials and I'd like an opinion on something he's told me. I originally mentioned to this group that one of the biggest concerns we had was that my wife would have to come off of Aricept in order to participate. And I've heard that patients who come off of Aricept are likely to go into a decline from which they never fully recover, even when they go back on the Aricept. This doctor, who is associated with the Alzheimer's Clinic at Boston University, says
"The drop off in aricept is variable and not seen in everyone but can happen... there is a clinical impression that some things lost in the drop off may not be regained, but no data on this... and in my experience that tends to be more relevant to more severely impaired folks."
Any opinions?
TIA, ARH...
Mary_Gordon@tvo.org - 22 Feb 2006 15:12 GMT Alan's researcher stated: "The drop off in aricept is variable and not seen in everyone but can > happen... there is a clinical impression that some things lost in the drop
> off may not be regained, but no data on this... and in my experience that > tends to be more relevant to more severely impaired folks." Mary responds: Alan, having watched AD dismantle my MIL neuron by neuron, and corresponded with hundreds of families going down the same road as part of my volunteer work with allexperts.com (I answer AD questions), I'd say...this guy is...minimizing bigtime. He's not living with her. He hasn't been married to her, doesn't rely on her, love her, need her, want her.
No matter how rational a man you are, no matter how educated, no matter how carefully you research, you cannot fully prepare yourself for what is ahead. AD cuts to the heart of our most deeply held assumptions and beliefs about human personality, emotions, motivation, abilities. There are few of us who don't have our fundamental assumptions about the way the world works rocked by AD - the idea that people have control of themselves, are accountable for their actions, can see how their behaviour impacts others, have insight into their own situations and problems. We also make huge assumptions about abilities based on our own intact brains - we reason, okay Task A is much less complex and demanding than Task B, so if they can do B, they should be able to do A - and then we are totally at sea when we discover we're wrong. We don't "get" that being able to do what seems like even a simple thing like taking a bath requires an intact web of interlocked abilities. If one piece is missing, the whole thing falls apart.
Right now, I know you see a wife who is still herself in terms of personality, and other than some forgetfulness, your working assumptions about her are unchanged. That is a kind of heaven you are about to lose - and don't think I exaggerate. You will shortly have to continually question and reassess every aspect of her abilities, her actions, your relationship - what needs supervision and what does not, what you can allow and what you have to forbid, what you let yourself to relax about and what you have to worry and think about - that you never thought about or questioned before. AD is also very unpredictable and fluctuates - so as things move along in the illness, you will never know from one day to the next what to expect or rely on.
>From my gut level perspective, anything that puts off the evil day that your spouse is no longer herself and the ground goes out from under you (as it will) is something worth doing. I'd be very hesitant to stop a drug that is preserving function, even if you can't SEE that its helping.
What the doctor thinks are minor things in his impersonal big picture view of Alzheimer's decline may seem huge losses to you - like her ability to read a calendar, tell time, make change, make a grocery list, bake a cake, work appliances. He thinks in terms of chunks - like being able to dress herself or not, toilet or not, feed herself or not - not in terms of the tiny everyday things of life that make the difference in your quality of life together, and that will take the role of spouse/partner from you.
My 2 cents, anyway.
M
Evelyn Ruut - 23 Feb 2006 12:09 GMT I would like to add my 100% agreement to Mary's comments below. She is telling it like it is.
 Signature Best Regards,
Evelyn (to reply to me personally, remove 'sox')
> Alan's researcher stated: "The drop off in aricept is variable and not > seen in everyone but can > happen... there is a clinical impression [quoted text clipped - 56 lines] > > M Tumbleweed - 22 Feb 2006 17:29 GMT > I've been corresponding with the doctor who wants my wife to join the > Flurizan Phase III trials and I'd like an opinion on something he's told [quoted text clipped - 11 lines] > > Any opinions? There is a 33% chance (from the data they publish) that your wife will get a medically relevant dose of Flurizan. You'll have to trade that against the odds she'll lose a year, or two, or three, of abilities, eg she'll fast-forward to where she would be in that many years time. (This is if the trial is as before, eg placebo, 400mg and 800mg)
That has to be traded against whatever benefit Flourizan will provide, which I'm sure you can assess for yourself from the literature. Its a tough call, if it was me I wouldnt do *now* but might hope to be able to get on it in say a years time, but I can see why someone might also think its worth taking the risk.
I'd also consider instead of the trial, if its possible, adding memantine , from what I read and what people say here, memantine and aricept together work pretty well.
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Alan Holbrook - 23 Feb 2006 10:56 GMT > There is a 33% chance (from the data they publish) that your wife will > get a medically relevant dose of Flurizan. You'll have to trade that [quoted text clipped - 11 lines] > memantine , from what I read and what people say here, memantine and > aricept together work pretty well. Once again, thanks to those who answered. Not to minimize any risks but just for due diligence and for anyone else maybe considering the test, the BU version of the study is using placebo and 800mg dose only, no 400mg. And also for what it's worth, the doctor says that if there is any statistical evidence of effectivity, everyone in the study group goes on the real thing.
It's still not an easy call. As someone said earlier, one of the ways to look at such studies is you're helping future sufferers. I don't know if I'm ready for pure unalloyed altruism quite yet.
Tumbleweed - 23 Feb 2006 12:13 GMT >> There is a 33% chance (from the data they publish) that your wife will >> get a medically relevant dose of Flurizan. You'll have to trade that [quoted text clipped - 22 lines] > look at such studies is you're helping future sufferers. I don't know if > I'm ready for pure unalloyed altruism quite yet. My father is just starting a similar trial, its placebo/drug but after 6 months everyone goes onto the drug. Its not a new drug, just that they are testing it on people with advanced Az whereas currently its only used in mild to moderate cases.
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Dennis P. Harris - 23 Feb 2006 07:31 GMT > "The drop off in aricept is variable and not seen in everyone but can > happen... there is a clinical impression that some things lost in the drop > off may not be regained, but no data on this... and in my experience that > tends to be more relevant to more severely impaired folks." > > Any opinions? once again: if it were my spouse i wouldn't take the chance by taking her off a drug well known to slow down AD's progress in order to have a 50% or less chance of her getting the new drug.
tvengineering - 24 Feb 2006 00:16 GMT God, what a tough question.
My mom is now in a nursing home due to AD. Aricept does not cure. no other way to put it. It may slow down the AD, but alzheimers will still win. I am trying my best to get her into the Flurizan trial, but they dont want anyone in a home for at least 6 months. Flurizan is being flaunted as attacking the cause.... not the symptom. As cruel as this may sound, but not meaning anything bad by it at all, I dont want my mother just to "last" - I want her well. I personally would take any risk(s) for myself to see to it that I dont whither away in a home where they really dont care about me other than making my final days comfortable. To hell with that! if it hurts to make me well, then knock me for a loop to get it done. And I know that my mother would have the same opinion as me. Who wants to be a vegetable and live forever?
good luck. I know it is so easy to be overun with opinions and emotions, but after you clear you head of emotions, do what you think is best. No other person cares about you or you wife near as much as you.
> I've been corresponding with the doctor who wants my wife to join the > Flurizan Phase III trials and I'd like an opinion on something he's told [quoted text clipped - 14 lines] > TIA, > ARH... Tumbleweed - 24 Feb 2006 00:36 GMT > God, what a tough question. > [quoted text clipped - 14 lines] > but after you clear you head of emotions, do what you think is best. No > other person cares about you or you wife near as much as you. From what I saw of the flourizan trial, the graph still went downward, just less slowly, so its not a cure, and it wont even stabilise. Given that its somewhere between practically and actually impossible to regenerate brain cells (AIUI) then there might never be a 'cure' for Az, just a preventative.
 Signature Tumbleweed
email replies not necessary but to contact use; tumbleweednews at hotmail dot com
Mary_Gordon@tvo.org - 24 Feb 2006 00:40 GMT Have a look at this http://www.seniorjournal.com/NEWS/Alzheimers/5-06-21Flurizan.htm
Results with flurizan thus far aren't exactly anything too fantastic.
We might be waiting for the miracle cure, but I don't think anyone is saying this is it.
M.
Evelyn Ruut - 24 Feb 2006 00:44 GMT > God, what a tough question. > [quoted text clipped - 14 lines] > but after you clear you head of emotions, do what you think is best. No > other person cares about you or you wife near as much as you. A deeply heartfelt reply that gives us much to think about.
I might want to add that once one already has the disease in a diagnosable way, it is pretty difficult to imagine that anything could ever restore what has been lost, since alzheimers actually damages the brain physically.
If a cure could be found (not something to slow it down, but something to actually stop the process itself) it would have to be applied very early on before the damage is too great, because once one has a certain amount of brain damage, if you ask me, to continue like that, is no way to live a quality life at all.
My mother in law spent several years in a semi cognitive state, that it was almost a mercy that something finally took her away. She ultimately died of pancreatic cancer after becoming so impaired she couldn't even walk ten feet on her own anymore, and kept falling down. We had to put her in a nursing home before we both killed ourselves with exhaustion. She was incontinent, confused, suffering from delusions and deeply depressed right from the beginning of the illness.
For us, Aricept was a noticeable help and there was no question about giving it or not. We were grateful for anything that made her a little more comfortable emotionally or cognitively. She was taking antidepressants, anti-psychotics and Aricept. They were not a cure, but they helped.
So thinking back to all of that, just supposing if some new medication was discovered that was able to stop the process in its tracks and she had to spend years and years in that twilight state of life, I would think long and seriously about giving it. She had been a very vital and full of life sort of a lady. Losing control, autonomy, being incontinent and helpless, was not a life she would have wanted to continue living.
Tough questions that caregivers face all the time, and new technologies and new medications make the decisions and the questions even harder.
 Signature Best Regards,
Evelyn (to reply to me personally, remove 'sox')
>> I've been corresponding with the doctor who wants my wife to join the >> Flurizan Phase III trials and I'd like an opinion on something he's told [quoted text clipped - 17 lines] >> TIA, >> ARH... Anthony Shipley - 24 Feb 2006 01:13 GMT > As cruel as this may sound, but >not meaning anything bad by it at all, I dont want my mother just to [quoted text clipped - 4 lines] >get it done. And I know that my mother would have the same opinion as me. >Who wants to be a vegetable and live forever? I have A.D and I agree entirely - bugger longevity!
Let me live while I'm alive. It's living what matters; not longevity, especially when life is so tenuous and there's so little of it left.
anthony shipley
Run away with me; I can make you unhappy.
Dennis P. Harris - 24 Feb 2006 04:19 GMT > Flurizan is being flaunted as > attacking the cause.... not the symptom. As cruel as this may sound, but > not meaning anything bad by it at all, I dont want my mother just to > "last" - I want her well. if it's advanced enough to put her into full time care, i doubt if flurizan could reverse the damage. it sounds like it's mostly useful in the early stages.
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