Why is my WBC now lower than when I was first diagnosed with CLL, yet my lymphocyte count is up?

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Question from Judy:

When I was first diagnosed 8 years ago at WBC 16.6 and remember my lymphs being elevated above the 3.54—what it was in July of this year. My normal over the past 8 years is around WBC 20-22,000. I don't understand why my WBC is now lower than when I was first diagnosed, yet my lymphocyte count is up? In July, my absolute lymphs were at 3.54, and my WBC was 11.5 and in Nov. my lymphs are 12.97 and WBC at 15.37. Looking over past blood work I see my lymphs got as high as 24.5 a year ago and WBC was 29.7. With CLL, I have heard of patients WBC going up but not going down that low. I sometimes wonder if I have another condition bringing my WBC count down that isn't accounted for or if my initial diagnosis wasn't correct. I know hematology is a more recently discovered science. I do know that WBC vary in CLL patients, but it is confounding me as to why I was just above normal 4 months ago? I guess also adding to my concern is that my late husband was misdiagnosed with lung cancer. Four months before he passed, we found out it was really mesothelioma after living for 2 years with a stage IV diagnosis. I guess I need things to make sense.

Dr. Leclair:
 

Let's start with the basic definition of CLL—a clone of lymphocytes that account for a greater than 5.00 absolute lymphocyte count. Dr. Silvers wants that to be narrowed even further by saying a clone of B lymphocytes…So if I am assuming correctly, the immunophenotype that was performed on the earliest specimen 8 years ago showed a bunch of cells that were all from the same clone (they all had the same exact markers). That means you have CLL.

Now, do numbers go up and down?

Yes, they can although you are correct that the typical person has lymphocyte numbers that lean more to the increase than decrease. 

 

Year               WBC        ALC

2006               16.6        had to be above 5 and I would bet that it was near 13.

2013                29.7        24.5

2014 July      11.5          3.5

2014 Nov     15.37      12.97

So I have to wonder what was going on in 2013 and last July since the first and fourth would (if used just be themselves) show "no change".

One of the things that CLL patients learn to deal with is the hysterical reaction of the cells whenever you catch a cold or fall off a bike or whatever. It is possible for the total WBC to double in a few days and then take months to slowly drop down to where things were in the beginning. 

Decreases in CLL cells can occur when you have been dealing with chronic stress (during which you make a whole lot of stress hormones which drop counts) or if there was a flare-up of a node or two during which the cells stayed out of the bloodstream and kept themselves in the nodes. Of course, one other issue might be that the July 2014 numbers might be an error during the collection, transport and analysis components.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you. 

Have a question for the experts? Send them to questions@patientpower.info.

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Page last updated on April 25, 2019