What does RELAPSE mean in CLL?

[Cllcanada]

Relapse is defined as a patient who has previously achieved a complete or partial response (CR or PR) but after a period of 6 or more months, demonstrates evidence of disease progression.

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[PaulaS Volunteer]

Is there something significant about the 6 month period, that makes disease progression AFTER this time be called a relapse, yet before this 6 month time it's called (I think) refractory? Can't people have relapses after 5 months? (Sorry if this is explained in the link - I did look at it but the language was too complicated for me).

And how do you define a "regression"?

[Cllcanada Top Poster CURE Hero]

Under 6 months it could be considered either progressive disease or treatment failure...

Refractory disease is defined as treatment failure (as or disease progression within 6 months to the last antileukemic therapy).

For the definition of “high-risk CLL” justifying the use of allogeneic stem cell transplantation, the disease should be refractory to a purine analog-based therapy or to autologous hematopoietic stem cell transplantation.

Basically refractory means treatments no longer work, primarily fludarabine, pentostatin etc. but you can also be refractory to rituxan, ofatumumab as well...

I'm refractory to both... fludarabine and rituxan

[Cllcanada Top Poster CURE Hero]

Regression, is highly complex...but in my case my absolute lymphocyte count (ALC) went down from a high point to a lower point over about two years... without treatment.

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[PaulaS Volunteer]

Thanks for the explanations, Chris. Some of those words were things I had a bit of a feel for, but wasn't sure if I'd really got it right. So, you can have "refractory disease" and also "be refractory" to certain treatments. OK.

And "regression" is improvement without treatment? I think I remember your saying before, about your ALC going from high to low by itself (well, with diet and exercise). I wish mine would do that - my WBC was up to 123,000 a couple of weeks ago (only 90,000 a few months ago). I do a lot of walking and am only a little bit overweight.

But for you, I know the situation is much more critical... Would you say you're still in that "fragile double remission" that you mention in your profile?

thinking of you,

Paula

[Cllcanada Top Poster CURE Hero]

I find out in a couple of weeks... I have some scans and other diagnostics...hopefully no change!

Paula track your absolute lymphocyte count (ALC) , far more accurate in CLL progression than white blood cell count (WBC). You want to look for lymphocyte doubling within 6 months (LDT) , it is a signal among others, that treatment is

in the future...

[PaulaS Volunteer in reply to Cllcanada]

Thanks Chris, Yes I've heard about ALC being more useful to track, than WBC. I think I even watched a video clip about it once, but didn't really take it on board. And on my last couple of hospital visits, I was just told WBC, HB and platelet results (didn't get any printouts). I must find out more details.

We'll be thinking of you with your important scans/tests coming up soon - hoping and praying for good news (ie no change)!

Paula