starting the clock or not?

[Guest guest]

I have heard Dr. Furman say, often (if I am not misquoting him), that

treatment does not mean " starting the clock " . I take that to mean

that once treatment commences, it does not mean you only have x years

left. And I have seen numerous posts of people with CLL who have had

treatment on and off for years.

On the other hand, I seem to read that median survival once treatment

begins is 3-5 years, or with FCR 6-7 years (probably for those who

are mutated, etc). Those numbers, I assume, are old. At least I

hope they are. But I haven't seen any research with new numbers.

Anyhow, back to my original question - are there CLLers, even

unmutated ones, who are living with CLL in a chronic fashion?

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 " .

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