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Old 12th February 2012, 11:52 PM   #1
Skeptic Ginger
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Glenn Campbell, Alzheimer's and the Grammy's

So this could have been in the science, music, or current events forum and if any mods should choose to move it, that will be fine with me.

I'm watching the Grammys and they've put on a tribute to Glenn Campbell including Campbell singing Rhinestone Cowboy. And in the tribute they announce he has Alzheimer's. It amazes me that people are being diagnosed when they still have enough thought capacity to discuss their fate.

Being rich, I hope he gets to try the new treatment recently successfully used on mice. I would. It's a drug currently approved for chemotherapy in humans. This will be remarkable if it pans out.

Cancer drug reverses Alzheimer's in mice: study

So why did I post this and make it about Glenn Campbell instead of just about the science?

I don't know. It just struck me hearing the announcement Campbell had Alzheimer's at the same time he was still well enough to appear on stage at the Grammy's. It's weird. And the discovery of a treatment that is a drug already approved for use in humans should make a bit different of a pathway for research.

If you were wealthy or simply had access to the drug, and had Alzheimer's would you use it immediately instead of waiting for conclusive studies?

I had this discussion with Linda (fls) in the past and I really wish she hadn't left the forum because i'd like to use this example to revisit the discussion. I can't speak for her but I got the impression she would wait for the research to be more conclusive.

I use the criteria: if it is not harmful and there is some evidence it might work, and if there is no better alternative, I think it is worth trying.

In this case it is the potential benefit and lack of any alternative treatment and the fact Alzheimer's is such a devastating terminal disease that it outweighs the fact the research is premature.

What say the rest of you?
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Old 13th February 2012, 12:24 AM   #2
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I'll only address the part about mentioning while he still has his marbles. Why not? If someone has cancer, we don't hesitate to talk about it before they die. Ditto other diseases. It's not something to be ashamed about and, my opinion about Campbell aside, it is nice to get a round of applause while he can still appreciate it.
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Old 13th February 2012, 12:44 AM   #3
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Also it might help the fund-raisers get more money for research?

My mother had Alzheimers for the last 8 years of her life, so my best wishes go out to Glenn and his family. I have some idea what's in store for them.

Let's hope that this new treatment works!
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Old 13th February 2012, 06:56 AM   #4
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Originally Posted by Skeptic Ginger View Post
...
I use the criteria: if it is not harmful and there is some evidence it might work, and if there is no better alternative, I think it is worth trying.

In this case it is the potential benefit and lack of any alternative treatment and the fact Alzheimer's is such a devastating terminal disease that it outweighs the fact the research is premature.

What say the rest of you?

The problem comes in how do we determine the "harm" as mentioned in your logical criteria ?

If via the normal process and using the normal protocols, why would it matter if the person was rich ? The person would still need to wait until the drug is available to the public.

If not via the normal process and not using the normal protocols, does it become a matter of choice of the individual willing to accept the risks involved ? His cash might come in handy here.
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Old 13th February 2012, 07:14 AM   #5
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Originally Posted by Libra View Post
The person would still need to wait until the drug is available to the public.
Money and/or power can open otherwise locked drug cabinets - or even pay for the custom synthesis of a drug (within reason).

I wonder if Terry Pratchett is getting involved in this one...
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Old 13th February 2012, 07:42 AM   #6
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It's a tier 5 treatment and damned expensive. There are no recommended dosages for Alzheimer's because it hasn't been tested - but for cancer it's recommended 300 mg for every M2 of body? I'm not sure how that's calculated. But at US$ 21.50 for 75 mg, that's a whole lot more money than I have available.

I have a mother-in-law with onset of Alzheimer's - and she's only about 55 years old. I look forward to the tests - they say they'll be out this year. I would imagine since you're only concentrating on the brain, you wouldn't need similar dosage as the cancer treatment, which targets all the body's cells. Maybe it'll turn out that micro-dosing works. (Remember doctors dropping ten regular size aspirin a day, only to learn that 10 mg will do the same thing vis-a-vis circulation?)
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Old 13th February 2012, 09:01 AM   #7
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My mother had Alzheimer's for the last six years of her life. She deteriorated very fast. Within a year after she was diagnosed, she could no longer carry on a conversation. She didn't say a single word over the last two years of her life.

My uncle, however, has had Alzheimer's for 10 years and you'd hardly know it. He can still carry on a conversation. He has trouble remembering specifics, but he still knows who everybody is.

Steve S
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Old 13th February 2012, 11:48 AM   #8
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Originally Posted by SezMe View Post
I'll only address the part about mentioning while he still has his marbles. Why not? If someone has cancer, we don't hesitate to talk about it before they die. Ditto other diseases. It's not something to be ashamed about and, my opinion about Campbell aside, it is nice to get a round of applause while he can still appreciate it.
I was merely commenting on the changing times, not on any 'should' or 'shouldn't' aspect.
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Old 13th February 2012, 11:52 AM   #9
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Originally Posted by Libra View Post
The problem comes in how do we determine the "harm" as mentioned in your logical criteria ?

If via the normal process and using the normal protocols, why would it matter if the person was rich ? The person would still need to wait until the drug is available to the public.

If not via the normal process and not using the normal protocols, does it become a matter of choice of the individual willing to accept the risks involved ? His cash might come in handy here.
Harm vs benefit is typically considered in all medical decisions. It is not hard in this case. The outcome is tragic and fatal. There are no other options. There is some evidence of potential benefit.

The reason it matters if someone is rich has to do with access to health care in this country. A rich person can always find a physician to order this treatment (because the drug is already approved we can prescribe "off label") and it is likely an insurance company would not cover it since it would be considered experimental. It's a fact of life here, the rich have access to medical care the poor do not have access to.
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Old 13th February 2012, 11:57 AM   #10
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Originally Posted by steve s View Post
My mother had Alzheimer's for the last six years of her life. She deteriorated very fast. Within a year after she was diagnosed, she could no longer carry on a conversation. She didn't say a single word over the last two years of her life.

My uncle, however, has had Alzheimer's for 10 years and you'd hardly know it. He can still carry on a conversation. He has trouble remembering specifics, but he still knows who everybody is.

Steve S
There are many different kinds of dementia including multiple causes in a single individual. Early diagnosis is a newly growing field. Variable progression is not well understood. It could be an issue when it comes to starting treatment that research is lacking but ongoing.
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Old 13th February 2012, 11:59 AM   #11
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He announced his Alzheimer's last June and has been going on a farewell tour. I liked his music when I was a kid.
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Old 13th February 2012, 11:27 PM   #12
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Originally Posted by Skeptic Ginger View Post
Harm vs benefit is typically considered in all medical decisions. It is not hard in this case. The outcome is tragic and fatal. There are no other options. There is some evidence of potential benefit.

The reason it matters if someone is rich has to do with access to health care in this country. A rich person can always find a physician to order this treatment (because the drug is already approved we can prescribe "off label") and it is likely an insurance company would not cover it since it would be considered experimental. It's a fact of life here, the rich have access to medical care the poor do not have access to.
The drug is said to lead to reduce amyloid plaque and improved mental functioning in a small sample of mice engineered to exhibit Alzheimer's symptoms.

So presumably the mice did not actually suffer from Alz, but was genetically manipulated to mimick some of the Alz characteristics. This is probably very different from the work they did with Cancer where the mice actually had Cancer ?

The authors of the research article cautioned, "We've fixed Alzheimer's in mice lots of times, so we need to move forward expeditiously but cautiously," and hoped to start human trials soon. (From Wikipedia)


I don't know if the results after they "fixed" it so easy "lots" of times in the past lead to the previous possible Alz drugs like Flurizan and Eli Lilly, but I do hope this one don't worsen the dementia like some of the others did.

"Flurizan worked by inhibiting enzymes that produce one form of amyloid, the sticky substance in the brain that many scientists believe is responsible for the disease. But there isnít clear data to show that removing amyloid improves cognitive functioning; the hope was that Flurizan would provide the best human evidence to date. Its failure to deliver prolongs uncertainty about the wisdom of targeting amyloid to treat or even prevent Alzheimerís. "

Bexarotene's MSDS shows an odd +/-100% variance in toxicity between rat (>1500mg/kg) and dog (>720mg/kg) and the Registry of Toxic Effects of Chemical Substances (RTECS) number is not available.

If a previous human study(1684 patients), hinged around the whole amyloid assumption, was deemed a failure, why would yet another one targeting amyloid plaque reduction tested on mice that did not actually have the disease be any better ?
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Old 14th February 2012, 12:21 AM   #13
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Originally Posted by Libra View Post
The drug is said to lead to reduce amyloid plaque and improved mental functioning in a small sample of mice engineered to exhibit Alzheimer's symptoms.

So presumably the mice did not actually suffer from Alz, but was genetically manipulated to mimick some of the Alz characteristics. This is probably very different from the work they did with Cancer where the mice actually had Cancer ?

The authors of the research article cautioned, "We've fixed Alzheimer's in mice lots of times, so we need to move forward expeditiously but cautiously," and hoped to start human trials soon. (From Wikipedia)


I don't know if the results after they "fixed" it so easy "lots" of times in the past lead to the previous possible Alz drugs like Flurizan and Eli Lilly, but I do hope this one don't worsen the dementia like some of the others did.

"Flurizan worked by inhibiting enzymes that produce one form of amyloid, the sticky substance in the brain that many scientists believe is responsible for the disease. But there isnít clear data to show that removing amyloid improves cognitive functioning; the hope was that Flurizan would provide the best human evidence to date. Its failure to deliver prolongs uncertainty about the wisdom of targeting amyloid to treat or even prevent Alzheimerís. "

Bexarotene's MSDS shows an odd +/-100% variance in toxicity between rat (>1500mg/kg) and dog (>720mg/kg) and the Registry of Toxic Effects of Chemical Substances (RTECS) number is not available.

If a previous human study(1684 patients), hinged around the whole amyloid assumption, was deemed a failure, why would yet another one targeting amyloid plaque reduction tested on mice that did not actually have the disease be any better ?
There is no question this represents only a potential benefit and in no way represents clear evidence of benefit. Thank you for pointing that out. It goes to the point I wanted to discuss in this thread.

When is it OK to act on less than ideal evidence?

If further research were a couple years away, the drug was already approved for use in humans (that is an important issue here), and as I noted, there is no other option, would you take this drug? Would you see to it your loved one got it?


As for worsening the dementia, would it matter if you were on a one way road to death anyway? The one person in this thread who had a relative with limited mental decline is an exception with Alzheimer's, not the norm.
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Old 14th February 2012, 12:29 AM   #14
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I'd do it in a heartbeat. Our brain is who we are, and without memories we are just animals. You risk almost nothing, to gain everything.
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Old 18th February 2012, 08:03 AM   #15
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Originally Posted by SezMe View Post
I'll only address the part about mentioning while he still has his marbles. Why not? If someone has cancer, we don't hesitate to talk about it before they die. Ditto other diseases. It's not something to be ashamed about and, my opinion about Campbell aside, it is nice to get a round of applause while he can still appreciate it.
Well, tribute before he dies is nice.

Still, the entertainment industry loves to shove out awards or tributes to people who are about to die, that they feel guilty over for not giving more awards to. Hence the "lifetime achievement" award.
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Old 19th February 2012, 06:41 AM   #16
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Originally Posted by steve s View Post
....My uncle, however, has had Alzheimer's for 10 years and you'd hardly know it.....
Doesn't that raise a question about definitions and diagnosis? If somebody continues to function well for a decade, does he really have Alzheimer's? Are there specific, indisputable diagnostic tests that yield a yes-or-no result? Or is this just a judgment call by a doctor who might -- or might not -- be right?
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Old 19th February 2012, 12:38 PM   #17
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Originally Posted by Bob001 View Post
Doesn't that raise a question about definitions and diagnosis? If somebody continues to function well for a decade, does he really have Alzheimer's? Are there specific, indisputable diagnostic tests that yield a yes-or-no result? Or is this just a judgment call by a doctor who might -- or might not -- be right?
Or it could just indicate diagnosis at a much earlier phase.
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Old 19th February 2012, 04:46 PM   #18
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It used to be Alzheimer's could not be diagnosed with precision in a living patient. A couple of years ago a neurologist said my mom had it (based on a questionnaire) and she takes Aricept. It doesn't seem to make any difference, but maybe without it she'd be worse. At this point I don't think she has Alzheimer's, I think it's been a series of TIAs. Her primary care doc said something about a PET scan being able to diagnose it now. There wasn't really a compelling reason to get the test as she was already employing a number of supportive measures appropriate for either Alzheimer's or TIA-related dementia.

I think in the past and perhaps in the present too it is over-diagnosed. Mom has never shown any bizarre behavior or tendency to wander, she just likes to sleep a lot and has little short-term memory. Still is quite social at times and at 87 lives alone about half the time in an apartment on an old folks' campus. I do sleepovers a lot, monitor her meds, groceries and alcohol consumption as she knocks back about 4 oz. of vodka a night. Sometimes it's more, then the next day she'll be complaining about her "Alzheimer's."

Can anyone answer the question about the current state of diagnostic arts re: Alzheimer's? And who decided that "dementia" was a better term than "senile" - or is there a difference, perhaps in degree?
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Old 19th February 2012, 04:47 PM   #19
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Originally Posted by Bob001 View Post
Are there specific, indisputable diagnostic tests that yield a yes-or-no result? Or is this just a judgment call by a doctor who might -- or might not -- be right?
^THIS, does anyone know?
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Old 19th February 2012, 04:48 PM   #20
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My feeling is that when I grow old enough that I've "had a good run," why not donate my body to science before I die? If I have some disease that will kill me in a few months or years anyway, then, by all means, experiment on me with some new drug that has potential. And if I have some issue that won't kill me for awhile, well, what the hell if the new drug causes some side effects? I can always stop taking it. Either way, there is some chance that I'll help people younger than I am.

And once I die, then take my body and do whatever is useful with it. I don't need it anymore.

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Old 19th February 2012, 07:38 PM   #21
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Originally Posted by roger View Post
I'd do it in a heartbeat. Our brain is who we are, and without memories we are just animals. You risk almost nothing, to gain everything.
I agree. I am my mind. At age 72, with the possibility of Alzheimer's looming in my future, I would take any supplement or drug -- experimental or otherwise -- that may prevent or delay this dreaded condition. Obviously I would avoid anything demonstrably and seriously harmful. Many conjectures like NSAIDs, simvastatin, fish oil have come and gone. I have and will continue to try them all until they are proven ineffective or seriously harmful.
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