Doubling Lymphocytes

[Kiwi77]

My Lymphocytes were 16-4 in feb 2022 and 32.8 beginning of March this year does that mean a more agressive treatment I have been looking on google and got totally confused thanks in advance

[lankisterguy Volunteer]

Hi jtm9393,

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Most doctors will not consider doubling times until the starting values are over 30k and then they will look for several data points to smooth out the erratic values. Your next test results may be much lower than you expect.

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You can read similar discussions by looking for the box on this page labeled' "Related Posts

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Here is a pinned post that explains how and when USA CLL expert doctors decide when to start treatment: healthunlocked.com/cllsuppo...

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Len

[Kiwi77 in reply to lankisterguy]

Thans Len just been reading the links and the video was reassuring too

[AussieNeil Partner Administrator]

The guideline I like to reference for CLL management is the iwCLL Guidelines document, which was last updated in 2018. In section 4.1 Primary treatment decisions, it notes, with my emphasis;

Active disease should be clearly documented to initiate therapy.

At least 1 of the following criteria should be met.

Point 4 is the relevant point covering your concern and it states:

"Progressive lymphocytosis with an increase of >50% over a 2-month period, or lymphocyte doubling time (LDT) <6 months. LDT can be obtained by linear regression extrapolation of absolute lymphocyte counts obtained at intervals of 2 weeks over an observation period of 2 to 3 months; patients with initial blood lymphocyte counts <30 3 x10^9 /L may require a longer observation period to determine the LDT. Factors contributing to lymphocytosis other than CLL (eg, infections, steroid administration) should be excluded."

In practice, specialists don't get too concerned about lymphocyte doubling times until your absolute lymphocyte exceeds 30, because the count bounces around a fair bit under 30. Note also the sections I've underlined; your specialist needs to be convinced that you have active disease, which requires ruling out other causes for your lymphocytosis and since we can tolerate really, really high lymphocyte counts without health concerns and growth can flatten out and even reverse, the usual outcome of a faster doubling lymphocyte count are closer observation to see if there are other triggers for starting treatment.

I note that you don't meet the doubling time requirement of less than 6 months - yours is about a year and if that trend continues, (it probably won't), your lymphocyte count may be around 60 in a year's time. We have members still in watch and wait with lymphocyte counts in the several hundreds.

Neil

[Kiwi77]

Thanks Neil thats good to know I think I am getting anxious because I have an aching left side, and I put a comment on the other day about my spleen going from 10.4 to 12 in two years, the worry ime doing is prob making it worse I was worried that they would put me on treatment right away. My Dr has sent an email to the hematology place to see if I need a first visit.

[wizzard166]

JTM

I don't think I'd be worrying about treatment right now; unless, a top CLL Specialist sees other reasons to think your illness has converted to a more aggressive type.

That doubling was in a full year of growth, and the numbers are still very low. I went from 30,000 in October of 2022 to 45000 in December of 2022, which was 50% in two Months. It scared my local Oncologist a bit, and she wanted to go from blood tests every six months to once a month for a few months. Without a long story, ultimate opinion by a top CLL Specialist a couple months later decided an illness I fought off was the culprit and not acceleration of my CLL.

A good Oncologist/Hemotologist will know if there is reason for concern, but in all liklihood there is not.

Carl

[Big_Dee]

Hello jtm9393

Not to worry. I have actual very aggressive CLL with my ALC doubling every 2.5 months. My WBC went up 53K in 28 days and I am still here 5 years later. Blessings.

[skipro]

Hi

CLL can be a stressful roller coaster ride. Not sure of your whole story but I’m 12 years in, and am relapsed after chemo-immunotherapy and looking at treatment starting again.

My first treatment came when my count was 228,000. The count itself wasn’t the indication for treatment. The combination of a very large painful spleen, feeling physically exhausted and several other issues lead to starting treatment.

There are a multitude of markers on test like FISH, TP53 status, mutation status of LVGH that can guide prognosis and treatment.

Doubling time of less than 3-6 months can be an indication of need to treat. But as time goes on you’ll probably see like most of us that the numbers can take rather large changes up and down. So as unsettling as this can seem, it’s best taken in context by looking at long term trend’s rather than a new result each time you’re checked.

The treatment options have improved significantly and some of the markers that used to be considered poor prognostic markers are now simply markers that help chose which treatment is best for each individual case.

I’m not sure how to answer “aggressive” treatments as all the newer opinions are better than those in recent years. All of them have risk benefit ratios that a CLL specialist can help guide you with when the time comes.

The good news is that most treatments are much easier on you and many new ones are in the works.

God bless

Skipro

[scryer99]

Mine doubled roughly every six months three times and was accelerating (8 -> 19 -> 41 -> 75 -> 121 in two months). No treatment considered until it got to 121, though it certainly increased my number of visits and tests. The progression + higher count got me considered for trial, but did not by itself start treatment. What triggered treatment was the resulting spleen swelling and damage, along with some other issues with platelets and anemia.

My experience has been that rapid progression was not a factor in treatment selection and only a minor factor in deciding when to treat.