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Medical Forum / Diseases and Disorders / Alzheimer's / February 2006

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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.

Signature

Tumbleweed

email replies not necessary but to contact use;
tumbleweednews at hotmail dot com

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.

Signature

Tumbleweed

email replies not necessary but to contact use;
tumbleweednews at hotmail dot com

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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