Stage lengths?

[Skydon]

Curious to know if there is any scientific studies showing roughly how long each stage lasts? I recognize that there are many factors involved (age, general health, etc.), but are there any studies showing how long between stage 0 and 1, 1 and 2, 2 and 3, etc.?

[AussieNeil Partner Administrator]

With CLL, stage lengths are strongly influenced by your markers. About 30% of us never need treatment. The most significant factor is whether you are IGHV mutated (better marker) or not. More bad markers may put you into the complex karyotype category, which generally corresponds with a shorter time to treatment. CLL DNA changes are incredibly complex and how the different markers interact further complicates the challenge of making predictions. There are quite a few models available, but they are still only indicative.

The heterogeneous nature of CLL makes it very hard to provide the simplicity you seek. Where our CLL cells tend to congregate and the reason for starting treatment are highly individual. There are many different paths to treatment and you can stay in one stage for a long time. I was diagnosed in stage 4 and it was 11 years before I needed treatment.

Neil

[Ginajetta in reply to AussieNeil]

Similar experience for. Diagnosed stage 4 and treatment 11 years later.

[SamanthaJane123 in reply to AussieNeil]

Neil, how did you become so knowledge? You are a wealth of information. Thank you for your contributions.

[lankisterguy Volunteer]

I agree with AussieNeil - the data you are requesting is very complex and noisy

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In clinical trials the doctors often use TTFT (Time to First Treatment) or PFS (Progression Free Survival), that measure the months from stage 0 to treatment- a point beyond stage 4

And for that, they only report a statistical median- the center of a bell curve, while the trend plots have very erratic shapes.

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Prognostic factors like deletions (13q, 17p, Tri 12) would have me at intermediate risk, and my UnMutated IGVH would predict a faster progression. But unlike Neil and Ginajetta , the longest time it took me to progress from Stage 1 to 4 was 18 months, and the shortest was 4 months.

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So you and your doctor should watch your personal trends to see how fast your ALC / Lymph# rises over time or how fast your nodes enlarge. Those can be an imprecise predictor (like a wind sock- en.wikipedia.org/wiki/Winds...

a very rough indication of direction and strength). And even those can have plateaus and strange- non linear- changes over time.

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Len

[GMa27]

Since staging has to do with symptoms, one day you can be stage 0 and a month later stage 2 cuz u have night sweats and enlarge spleen pop up. That is just an example. I was stage 0 for 10 years. Stage 3 a year later. My nodes got bigger, anemia set in and blood work moved me from zero to 3. You can have stage 2 for 10 years and not have any changes. 💕