Re: Green Tea Component Killing CLL cells IN-Vitro voodoo

[Guest guest]

Hi Joe,

It might be a good idea if you were to keep some of your thoughts to

yourself and not disillusion others who may prefer to keep an optimistic view of

cll

treatments and potions. If someone wants to believe that dancing naked in the

moonlight during a full moon will cure his CLL I personally will beat the

drum. What I personally do and believe about it may not be of importance to

someone else but I will never take away anyone/'s hope.

Of course there is always the case of the patient cured of his cancer who on

the way home is hit by a truck. Remember the fickle finger of fate award?

Lets all rest on the assumption that we are all in His hands however we

define Him.

Happy Spring to all,

Arlene Pannullo

[Guest guest]

Joe I don't see your message as being one of discouragement but rather one that

says CLL'ers should be constantly vigilant in looking for and in the hopes that

these researchers will some day find a cure. Any other treatments or potions or

whatever if they help someone to deal with their cll or make them feel better,

all the power to them. But, as you said Joe, " While there is little down-side

in taking these supplements, one must be very careful of the placebo effect. " .

If a person puts too much faith in these things, to the point where they stop

looking for a cure, they could miss something important.

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[Guest guest]

Good on you, Joe. The other groups are inclusive of nostrums and good feelings.

Surely this group can stick to science (such as it is).

Jay Neubauer

Green Tea Component Killing CLL cells IN-Vitro voodoo

Dr. Kay and the gang at Mayo have observed that CLL cells are killed

by EGCG in-vitro which means in a test tube. Only those who are

skilled at pseudo-science (making potions and elixirs) will take the

leap of faith and conclude that it is an active agent in a person.

While there is little down-side in taking these supplements, one must

be very careful of the placebo effect. I fell into this trap during

the past couple months when I made this leap of faith (out of

desparation -reaching)but in retrospect did absolutely nothing for me.

Isn't it also interesting how CLL researchers are really scraping the

bottom of the barrel in looking for new agents? Where are all those

promising agents of a few years ago? (In my visit of a month ago

Gribben told me bluntly that there is nothing coming down the pike.)

Most of it was hyped up hope designed to lull us into a false sense

of security. Many of us CLLers have yet to face the " wolf at the

door. " I have. It is every bit as scary and more. But I can see more

clearly than ever. There are very few options once one has relapsed

so I can see why we all want to be able to grab onto something like

popping green tea and assuming that rituxan maintenance will be able

to last many years. Eventually for quite a few of us the rubber will

meet the road and the door will have to be answered. Maybe if we rub

some transdermal EGCG compound (don't forget the lemon oil!) on the

wolf he will go away?

Tullman

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[Guest guest]

So, the Mayo Clinic " gang " is practicing " voodoo. " Perhaps a nice up

of green tea, or some soothing lemon oil, will act as a calmative for

those whose blood pressure is spiking over the subject.

Is it possible that the doctors at Mayo might be onto something? Yes.

Is it certain? No. Are they going to conduct some trials on patients

to see? Yes. In the meantime, can a rational, reasonable individual

use EGCG on the educated guess that it might help? Of course.

One of the first steps in logical thinking is to remove one's own

emotions from the table. This means those emotions that might tempt

us to believe to a certainty that which is unproven (anyone want to

discuss religion here?) And it also includes those emotions that

might tempt us to criticize a message mainly because we dislike the

messenger.

Thinking in black and white gets us nowhere. Shades of gray are

everywhere -- especially in the indolence or aggressiveness of our

individual disease, in the genetic deletions each of us has, in our

individual body's response to various treatments. What works for one

may not work for another, and nothing is certain.

Let's look at the question of Rituxan maintenance. For some people,

it has worked for more than three years now. (That's longer than some

get out of RFC at that great temple, MD , where, oh science

fans, the statistics on RFC have never been subject to peer review.)

Does that mean Rituxan will work for three years on any given person?

No. Does it mean that it might? Yes.

No one ever said that immunotherapy in the form of Rituxan, EGCG,

etc. was guaranteed to keep the wolf away. But that doesn't mean that

it won't in some cases, either. Ultimately we cannot know, and in the

absence of future knowledge, we are all left to make our best

educated guesses.

May the path each of us takes get us to where we want to go,

Arenson

47, dx '03 Stage 2, 8x Rituxan '04

" In the face of uncertainty, there is nothing wrong with hope. "

-- from the book " Getting Well Again "

> Dr. Kay and the gang at Mayo have observed that CLL cells are

killed

> by EGCG in-vitro which means in a test tube. Only those who are

> skilled at pseudo-science (making potions and elixirs) will take

the

> leap of faith and conclude that it is an active agent in a person.

> While there is little down-side in taking these supplements, one

must

> be very careful of the placebo effect. I fell into this trap during

> the past couple months when I made this leap of faith (out of

> desparation -reaching)but in retrospect did absolutely nothing for

me.

> Isn't it also interesting how CLL researchers are really scraping

the

> bottom of the barrel in looking for new agents? Where are all those

> promising agents of a few years ago? (In my visit of a month ago

> Gribben told me bluntly that there is nothing coming down the

pike.)

> Most of it was hyped up hope designed to lull us into a false sense

> of security. Many of us CLLers have yet to face the " wolf at the

> door. " I have. It is every bit as scary and more. But I can see

more

> clearly than ever. There are very few options once one has relapsed

> so I can see why we all want to be able to grab onto something like

> popping green tea and assuming that rituxan maintenance will be

able

> to last many years. Eventually for quite a few of us the rubber

will

> meet the road and the door will have to be answered. Maybe if we

rub

> some transdermal EGCG compound (don't forget the lemon oil!) on the

> wolf he will go away?

> Tullman

[Guest guest]

Hey Joe,

One can approach these types of articles with over-inflated hope, or

over-developed skepticism. I try to take the middle course.

I've done a little reseach on the subject, and the catechins found in

green tea are found in the blood and the urine, so obviously these

compounds have made their way into the system. So in vitro

experimentation could very well have some bearing on actual events in

CLL patients.

My feeling on green tea is that it probably would have the greatest

effect (if any) on newly-diagnosed patients. Those patients who have

progressed to a significant degree do not, in general, respond as

well to treatment of any kind as well as those who have stage 0

disease, even those who are likely to progress. So this type

of 'treatment' would, to me at least, be most efficacious in early

stage patients (remember that a sizable minority of patients probably

won't progress anyway, so they probably won't need treatment).

Those who have active disease, are progressing, or have been treated

before would be less likely to respond to 'mild' treatments, in my

lay-person opinion.

I would be interested in testing early-stage patients to see if my

contentions are based on anything other than shear guesswork. That

is one of the advantages of the internet, I think, in that those

patients who are diligent about having periodic blood tests, and who

try only one type of intervention, such as the use of a significant

dosage of green tea daily, may share their positive (or negative)

experiences with the rest of us. Perhaps that would, in time, prompt

formal trials.

My feeling on 'alternative' treatment is that it is a realistic idea,

but one should not turn one's back on therapies that have undergone

scientific scrutiny when the time comes for 'stronger' measures.

I'm not sure what Dr. Gribben meant by nothing in the pipeline, with

quite a few clinical trials underway. It is true that most of these

use already-approved therapies (which is a shame, in that new

treatments seem to be wanting), some, such as the Xcellerated T cell

trials, do use fresh ideas.

I don't think any interested CLL patient would be 'lulled' into a

false sense of security over this incurable disease, but one would

like to maintain some level of hope for a treatment down the road.

Actually, a cure for CLL is inevitable. The question is when. It

maybe many years away, or it could be five years in the future, if we

get really lucky.

> Dr. Kay and the gang at Mayo have observed that CLL cells are

killed

> by EGCG in-vitro which means in a test tube. Only those who are

> skilled at pseudo-science (making potions and elixirs) will take

the

> leap of faith and conclude that it is an active agent in a person.

> While there is little down-side in taking these supplements, one

must

> be very careful of the placebo effect. I fell into this trap during

> the past couple months when I made this leap of faith (out of

> desparation -reaching)but in retrospect did absolutely nothing for

me.

> Isn't it also interesting how CLL researchers are really scraping

the

> bottom of the barrel in looking for new agents? Where are all those

> promising agents of a few years ago? (In my visit of a month ago

> Gribben told me bluntly that there is nothing coming down the

pike.)

> Most of it was hyped up hope designed to lull us into a false sense

> of security. Many of us CLLers have yet to face the " wolf at the

> door. " I have. It is every bit as scary and more. But I can see

more

> clearly than ever. There are very few options once one has relapsed

> so I can see why we all want to be able to grab onto something like

> popping green tea and assuming that rituxan maintenance will be

able

> to last many years. Eventually for quite a few of us the rubber

will

> meet the road and the door will have to be answered. Maybe if we

rub

> some transdermal EGCG compound (don't forget the lemon oil!) on the

> wolf he will go away?

> Tullman