Re: Starting the clock or Not?

[Guest guest]

Helene

My case is a bit different from the norm. I spent 5 years just getting a diagnosis. my case involved anemia, constant infections (bladder and sinus especially with one case of pneumonia, so I'm interested in the recent writings on the connection between pneumonia) and and glomerulonephritis driven by the CLL which left me at the verge of kidney failure. I was basically treated for the kidney issues - rituxan the first year, cytoxan the second, and rituxan again the third. I also was on procrit weekly, graduating to every 3 weeks before the change in rules for it's use, but fortunately my anemia has evened out. I currently do IVIG every 2 months. This all started 6 years ago and I am healthier than I've been in the last 11 years. I have not had to deal with some of the heavier treatments, but can attest to the fact that treatment is not the end of the line. It was expected that I would have to have a kidney transplant initially and I was so sick that I really didn't expect to live. I'm still here. We're all different and so are our reactions to treatment. Like Balan I don't focus on prognostics, but can assure you that in my case treatment has given my life back to me.

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[Guest guest]

Hi Elmerleb,

Yesterday, you asked:

" Are there other views? That many (some?) people who require

treatment just live with it for a long time? Or is that a pipe dream? "

You raise an excellent question, but I think that if you look at " median

survival rates " out of context, it will drive you nuts! It may also push a

patient into treatment before necessary.

I've found these 2 items very helpful when I've thought this. First, Dr. Terry

Hamblin's observations on the survival rate of hundreds of patients he's seen in

the UK:

Go to ACOR CLL Help Page: http://cll.acor.org/help.htm

Click on Professors' Posts (left column, second box (button)

Scroll down to 3rd entry by Dr. Terry Hamblin that begins:

" The longest survivor in my database has lived 33 years since diagnosis. Second

is a lady who died at the age of 105. She suffered the complication of ITP at

the age of 97, but she was never treated for this... "

The second is:

" The Median Isn't the Message, " by Jay Gould.

From above page, scroll down to " The Median Isn't the Message " ... " The piece you

must read before looking at medical statistics. The author is the late

Jay Gould, the eminent evolutionary biologist. "

(link in lower left column)

Ron Goldsmith

Albuquerque, New Mexico USA

[Guest guest]

Dear Helene,

The flip side of Dr. O'brien's statement is that people who do not

require treatment will not die of the disease. You think? : )

As has pointe out often, it can be discouraging to read the

scientific literature. Often, I think, the shadier-side perspectives

are given by investigators to emphasize the need to increase

participation in trials, or by sponsors to emphasize the need for

their new drug. To make the case for urgency - act now, this is

needed!

As you note, statistics are dated - based on outcomes in the past.

They are used to make comparisons between large groups, not for the

purpose of predicting individual outcomes. And I think it's realistic

to expect that some of the new protocols will make CLL a condition

that can be managed better than before.

Safe to say that we will all be points on the some researcher's

downward curve eventually, so we should try to focus on living ...

which I realize is many times a lot easier to suggest than to do.

As Gilda Ratner was fond of saying " It's always something. "

Karl

[Guest guest]

There has to be some truth in that, Helene. Some dx'd with CLL have

such an indolent form that their symptoms never develop, they never

need chemo and they die of other causes, including old age. As one

who's had tx on and off for 8 yrs (+ 2 w & w), I expected to die of

CLL after hearing the dx in 1998. What I didn't expect was to live a

reasonably normal life for 10 yrs. Dr. Furman's anti " start the clock "

point is directed to the majority who will require chemo (though his

goal is eventually to bypass chemo). I too am curious as to whether

that 3-5 yr figure a)existed and has changed. Ellen D.

>

> What prompts my question now, is something Dr. O'Brien, (in a

> recent very thorough description of what is in clinical trials on

> www.cllcanada.com), wrote: " the unfortunate fact is that people who

> require treatment will usually die of their disease " .

[Guest guest]

Helene,

It is important to remember that there are no absolutes and everyone

is different. What I believe Dr. O'Brien was implying is that

contrary to what most people believe, CLL is a disease that can be

very active and need treatment. Too often patients are told that

they " have CLL and will never need treatment. " It is important to

remember that those people who require treatment are the ones

demonstrating progressive disease, and are therefore not the ones

likey to go 15 years without treatment and that if they are getting

treatment, they are in good enough health to receive treatment.

The tact that I believe works best for most people is to remember

that you will be able to take advantage of all of the discoveries

that are going to be identified in the next five years. And who

knows, one of those discoveries might be the " magic bullet " . I say

this knowing that there are several agents we have in clinical trials

at this time that are looking very promising. While it is always

important to have a perspective of the " big picture " , no one knows

what the furture contains.

Rick Furman, MD

" the unfortunate fact is that people who

> require treatment will usually die of their disease " .

>

> Are there other views? That many (some?) people who require

> treatment just live with it for a long time? Or is that a pipe

dream?

>

> I am very confused as to what to expect, and I know there are many

> varieties. But any insight into how those in treatment, perhaps

> without the best prognostics do, would be really appreciated.

>

> Helene

>

[Guest guest]

In re The Clock Ticking and normal life expectancies. Life

expectations are reflected within various actuarial tables such as

GATT, GAM & GAR-94 and as updated via RP-2000 (IRS Bulletin 2005-51

dtd. 12/19/05) with projection scale AA & various adaptations by PBGC

(Pension Benefit Guaranty Corp.) and the IRS, there are many

generated individual tables therein, such as male/female, smoker/non-

smoker, healthy/non-healthy, disability eligible/disability non-

eligible, healthy annuitant/non-healthy annuitant, combined healthy

male/female, et cetera, et cetera. Never mind the plethora of GATT &

GAM based tables derived by various free enterprise insurance

institutions.

Once you collect and analyze the data, once you organize and

synthesize quantitatively, you can generate and theorize various sets

of information, a veritable statistical cornucopia of failure

analyses. This can and does render some very valuably usable

information for quantitative decision making – provided of course, to

the extent you strive towards and achieve validity & reliability with

Quality permeating every aspect.

Having said that, using blended unisex from GAR-94 to incorporate a

basic pessimism (U.S. Supreme Court – Arizona vs. Norris, 1983 and in

conformance with IRS Ruling 2001-62) and leaving out leaving

current " employment " factors such as but not limited to those of

Crocker-Sarason, following herewith are some " quick and dirty " take-

off stats that may be of interest.

I'll use age 55 as a saddle point between age 45 and age 65. So if

you're reading this, and omitting poltergeists from the discussion,

odds that you're alive are at certainty (unity, 1). So, to this alive

now at age 55, we'll note it as 100 percent survival. Going forward

in 5 year intervals, 98 percent would be expected to be surviving at

age 60, 94 percent at age 65, 88 percent at age 70, at age 75 it

drops down to 78 percent, at age 80 it's 65 percent, at age 85 it's

47 percent, at age 90 use 27 percent, at 95 – 11 percent and at age

100 – 2 percent. (I had these numbers out to the 2nd decimal place

but had to delete for transmission as well as percent symbol.)

Think about this: nearly 48% of all the people in the U.S. alive

today at age 55 are expected to be alive at age 85! They may be

requiring considerable & extensive health care – but nearly 48% of

these " baby boomers " expected to be alive – let's just say " living " .

I would venture a guess that Canada's and the U.K.'s are roughly

similar.

Note that the RP-2000, using Projection Scale AA will yield even

higher expected values causal to changes in life style habits, health

education & testing, medicinal advances, and other positive impacts.

Needless to say, as we move onto and through each 5 year cohort

group, the number of women increase while the number of men decrease;

although a slight change in this expectation has been noted as

ongoing, attributable to many factors (e.g., i.a., women in work

force longer, smoking, stress, men taking better care of themselves,

early detection, et cetera).

As an aside & a U.S. citizen, can you see an apparent increasing

future Medicare heavy burden here? On a brighter note just imagine

the burden in more socialistic governments – every government

expended dollar (or other currency equivalent) is a dollar taken from

free enterprise via taxation & / outright government ownership stakes;

similarly it follows, every government job created is a minimum of

one less job in free enterprise (as it's taxed from here).

While " progressive taxation rates " is an optimizing problem requiring

certain degrees of " satisficing " within modified-capitalistic

societies such as the U.S., it's an exacerbating dilemma in

socialistic societies. Government is simply nowhere near as efficient

as private enterprise. I didn't intend to touch on this point, but it

just becomes so apparent and yet so many people appear not to readily

recognize it, nor associated basic economic workings of a society.

Getting back to the point at hand, let's take a best case CLL

expected survival plot of a commonly used/quoted/referenced 133 mos.,

say, 11 years (normal karyotype, 13q del, no clonal evolution, low

CD38, IgVH mutated and lowest ZAP-70 range. This proceeds under the

premise that IgVH and ZAP-70 testing were properly conducted and

yielding a true result – generally a true oddity.

So, where does that bring us to? Well, I would say age at diagnosis

would be a good starting point - - unless you have some better

benchmark. Using age 55 at diagnosis that brings us out to age 66+/-.

Many articles on CLL do say those diagnosed at an earlier age, say,

55, do tend to survive longer. Do you think that maybe those

diagnosed at early age have a high probability of possessing the

attributes/characteristics accorded the best case scenario of a non-

curable, fatal disease? There is circa a 6 percent drop in the

general age 55 population to that at age 65 (100 percent - 94

percent), unfortunately, part of that is us. Please avoid construing

this as something other than what is expressed here for sake of being

a contrarian. Should you have such an insatiable desire for argument,

without substantiated facts & analyses, please do it with someone

else.

There's always the occasional wild deviation in stats, but the

occasion of that occurrence is usually far and in between.

Personally, I rather think worse case scenario to avoid dealing with

disappointment at every adverse event, do my homework, be prepared

and should time bring me out toward the outer end of the " bath tub "

curve what a pleasant surprise!

Dan Cullen

Westchester, NY

[Guest guest]

Dan,

The " ticking clock " discussion on this list pertains to the fears some

people have that once they begin chemotherapy, the clock starts

ticking. You've reminded me of the sign on my supervisor's desk at

work years ago that always made me laugh:

" I know you believe you understand what it is you think I said but I'm

not sure that you realize that what you thought you heard was not

necessarily what I meant. " Or as the Gilda Radner character

Litella (?) used to say after she'd expounded on a subject before

finding out she'd heard it wrong: " Never mind. "

Ellen D.

“Do not be bullied out of your common sense by the specialist.”

Oliver Wendell Holmes

On Dec 23, 2008, at 9:16 PM, dancullensr wrote:

> In re The Clock Ticking and normal life expectancies. Life

> expectations are reflected within various actuarial tables such as

> GATT, GAM & GAR-94 and as updated via RP-2000 (IRS Bulletin 2005-51

> dtd. 12/19/05) with projection scale AA & various adaptations by PBGC

> (Pension Benefit Guaranty Corp.) and the IRS, there are many

> generated individual tables therein, such as male/female, smoker/non-

> smoker, healthy/non-healthy, disability eligible/disability non-

> eligible, healthy annuitant/non-healthy annuitant, combined healthy

> male/female, et cetera, et cetera. Never mind the plethora of GATT &

> GAM based tables derived by various free enterprise insurance

> institutions.

>

> Once you collect and analyze the data, once you organize and

> synthesize quantitatively, you can generate and theorize various sets

> of information, a veritable statistical cornucopia of failure

> analyses. This can and does render some very valuably usable

> information for quantitative decision making – provided of course, to

> the extent you strive towards and achieve validity & reliability with

> Quality permeating every aspect.

>

> Having said that, using blended unisex from GAR-94 to incorporate a

> basic pessimism (U.S. Supreme Court – Arizona vs. Norris, 1983 and in

> conformance with IRS Ruling 2001-62) and leaving out leaving

> current " employment " factors such as but not limited to those of

> Crocker-Sarason, following herewith are some " quick and dirty " take-

> off stats that may be of interest.

>

> I'll use age 55 as a saddle point between age 45 and age 65. So if

> you're reading this, and omitting poltergeists from the discussion,

> odds that you're alive are at certainty (unity, 1). So, to this alive

> now at age 55, we'll note it as 100 percent survival. Going forward

> in 5 year intervals, 98 percent would be expected to be surviving at

> age 60, 94 percent at age 65, 88 percent at age 70, at age 75 it

> drops down to 78 percent, at age 80 it's 65 percent, at age 85 it's

> 47 percent, at age 90 use 27 percent, at 95 – 11 percent and at age

> 100 – 2 percent. (I had these numbers out to the 2nd decimal place

> but had to delete for transmission as well as percent symbol.)

>

> Think about this: nearly 48% of all the people in the U.S. alive

> today at age 55 are expected to be alive at age 85! They may be

> requiring considerable & extensive health care – but nearly 48% of

> these " baby boomers " expected to be alive – let's just say " living " .

> I would venture a guess that Canada's and the U.K.'s are roughly

> similar.

>

> Note that the RP-2000, using Projection Scale AA will yield even

> higher expected values causal to changes in life style habits, health

> education & testing, medicinal advances, and other positive impacts.

> Needless to say, as we move onto and through each 5 year cohort

> group, the number of women increase while the number of men decrease;

> although a slight change in this expectation has been noted as

> ongoing, attributable to many factors (e.g., i.a., women in work

> force longer, smoking, stress, men taking better care of themselves,

> early detection, et cetera).

>

> As an aside & a U.S. citizen, can you see an apparent increasing

> future Medicare heavy burden here? On a brighter note just imagine

> the burden in more socialistic governments – every government

> expended dollar (or other currency equivalent) is a dollar taken from

> free enterprise via taxation & / outright government ownership stakes;

> similarly it follows, every government job created is a minimum of

> one less job in free enterprise (as it's taxed from here).

>

> While " progressive taxation rates " is an optimizing problem requiring

> certain degrees of " satisficing " within modified-capitalistic

> societies such as the U.S., it's an exacerbating dilemma in

> socialistic societies. Government is simply nowhere near as efficient

> as private enterprise. I didn't intend to touch on this point, but it

> just becomes so apparent and yet so many people appear not to readily

> recognize it, nor associated basic economic workings of a society.

>

> Getting back to the point at hand, let's take a best case CLL

> expected survival plot of a commonly used/quoted/referenced 133 mos.,

> say, 11 years (normal karyotype, 13q del, no clonal evolution, low

> CD38, IgVH mutated and lowest ZAP-70 range. This proceeds under the

> premise that IgVH and ZAP-70 testing were properly conducted and

> yielding a true result – generally a true oddity.

>

> So, where does that bring us to? Well, I would say age at diagnosis

> would be a good starting point - - unless you have some better

> benchmark. Using age 55 at diagnosis that brings us out to age 66+/-.

> Many articles on CLL do say those diagnosed at an earlier age, say,

> 55, do tend to survive longer. Do you think that maybe those

> diagnosed at early age have a high probability of possessing the

> attributes/characteristics accorded the best case scenario of a non-

> curable, fatal disease? There is circa a 6 percent drop in the

> general age 55 population to that at age 65 (100 percent - 94

> percent), unfortunately, part of that is us. Please avoid construing

> this as something other than what is expressed here for sake of being

> a contrarian. Should you have such an insatiable desire for argument,

> without substantiated facts & analyses, please do it with someone

> else.

>

> There's always the occasional wild deviation in stats, but the

> occasion of that occurrence is usually far and in between.

> Personally, I rather think worse case scenario to avoid dealing with

> disappointment at every adverse event, do my homework, be prepared

> and should time bring me out toward the outer end of the " bath tub "

> curve what a pleasant surprise!

>

> Dan Cullen

> Westchester, NY

>

>

>

[Guest guest]

Ellen,

Having been in w & w for 4 yrs. now, I am one of those people who have

concern that the " clock starts ticking " once I begin treatment (not

necessarily chemotherapy).

For those who have not been following the discussion, within his post

of 12/19/08, Karl asked " What would be the mean survial for anyone at

age 65? Ten years? "

I provided a reply based upon accepted statistical analyses as

reflected by professional actuarial tables and accepted by government

& private enterprise.

To an earlier posting on the list, within I mentioned having a

working statistical table derived from a published research article

by Dr. Abbott, you remarked to me off list " Yup—and *then* flip the

nickel. " to which I replied " Truly a flippant remark. ; - ) "

As far as I'm concerned your current comments, regarding YOUR

SUPERVISOR from years ago, to which I'm replying herewith, do nothing

to add to the discussion, rather I find them indicative of a

provacatively taunting, quarrelsome and otherwise argumentative

behavior.

In closing, I have no problem in you taking the " flip a coin "

attitude as to your course(s) of action, in turn, respect my mindset

for placing weight on statiscal analyses as do CLL researchers &

practioners, actuaries, planners and others oriented toward

quantitative modeling and decision making - to me it's only common

sense.

To paraphase Lilly Tomlison as regards to my posting: you're not the

party I'm speaking to.

" There are things yet realize that remain only to be so. "

>

> Dan,

> The " ticking clock " discussion on this list pertains to the fears

some people have that once they begin chemotherapy, the clock starts

ticking. You've reminded me of the sign on my supervisor's desk at

work years ago that always made me laugh:

>

> " I know you believe you understand what it is you think I said

but I'm not sure that you realize that what you thought you heard was

not necessarily what I meant. " Or as the Gilda Radner character

Litella (?) used to say after she'd expounded on a subject

before finding out she'd heard it wrong: " Never mind. "

>

> Ellen D.

> " Do not be bullied out of your common sense by the specialist. "

> Oliver Wendell Holmes

>