progression

[Guest guest]

I apologize in advance for the fact that there are lots of

resources available for me to research my questions on my

own. I am in the process of doing that, but I thought I

would try to see if there is helpful information to be had

from members of this group. Similarly, I will ask my

hematologist/oncologist these questions when I see her

again, but I like to draw upon and try to integrate

information from various sources rather than any single one.

I am male and will turn 57 next month. CLL was evident in

blood tests I had on 12/9/10. I suppose I was officially

diagnosed in February or March 2011, depending on how you

think about it, based on various tests including FISH and so

forth. The only unfavorable biomarkers I know about off hand

are a bad result for Chromosome 11, " unmutated " status on

the Heavy Chain etc. test, and " diffuse " rather than

" clumped " appearance in bone marrow. My sense is that the

upshot is I do not have the most indolent form of CLL, such

as my mother evidently has (diagnosed at age 65, currently

81 and still in W & W), nor do I have the most aggressive

form, but am somewhere in the middle, probably a bit more on

the aggressive side based on the biomarkers. I am aware that

these characterizations and associated prognostications are

based on statistically aggregated data and that there is

enormous variability, some things may have changed since

some of the data were collected, and so my mileage may vary.

My questions are about progression.

The first question is, setting aside all the limitations of

statistical prediction, does a period of time in which there

is no evidence of progression mean anything? In other words,

does a year of no progression change the prognosis? Or, if

you would have been predicted, say, to need treatment with a

90% probability within 3 years, does it simply mean that you

would now be predicted to need treatment within 2 years with

a 90% (or higher) probability? Again, I know there is

enormous variation, etc., just interested in a statistical

answer to this question with all the limitations thereof.

My second question is more clinical. I am being followed

every 2 or 3 months with blood counts and physical exams and

of course monitor my symptoms subjectively on a daily basis.

So far I have no significant symptoms. Maybe what would

qualify as a night sweat once in a while, maybe a bit more

fatigue than usual once in a while, maybe the sensation that

a node under my jaw is a bit swollen. Or maybe not. These

symptoms, such as they are, have been unchanged since at

least the time of that initial blood test, and possibly

longer. On physical exam, my doctor has seen no indication

of any observable CLL-related changes. And the blood counts

have been stable.

So the question is, what is the best indicator of

progression? Once answer might be that I have had zero

progression since the initial blood test since I have no

significant symptoms, signs, or blood count changes.

Depending on the answer to my first question, this may not

mean anything for the future, i.e., past performance is not

an indicator of future results. Another might depend on the

small, sub-threshold changes that have occurred in WBCs,

lymphocytes, RBCs, neutrophils, and platelets. For example,

while my lymphocytes have not doubled, there has been a net

increase over time, and the amount of that increase may be

meaningful. Similarly, there has been a net reduction in

neutrophils. It is also possible that there are markers of

progression I am not privy to, e.g., I have not had a repeat

BMB.

Any direct answers or suggestions about how to think about

these two questions would be most appreciated.

Best,

CW

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