How high can you go? (And what does it matter?)

How high can you go?  (And what does it matter?)

I was rather surprised to hear Dr John Byrd mention a lymphocyte count of a million in the presentation he gave last May, see:

cllsupport.healthunlocked.c...

While I've quite often heard of people with counts in the hundreds (or hundred thousands in the USA) and still on watch and wait (remember for a CLL diagnosis you only need to be above 5 (5,000 in the USA), today I came across Dr Hamblin's blog on Leukostasis (see later for definition) and thrombosis (blood clots) in CLL where he discusses whether there are any risks associated with having high white cell counts in CLL patients. He opens with "The highest white count that I have seen in CLL is 800,000/cu mm though Tom Kipps told me of a patient with 1,400,000/cu mm. The odd thing is that neither of us has ever seen leukostasis in CLL. This is the condition, often seen in myeloid malignancies where sludging of white cells in blood vessels cuts off the circulation to a particular organ."

mutated-unmuated.blogspot.c...

In short, because the B-lymphocytes in CLL are smaller than can occur with other leukaemias, having health problems due to the absolute volume of lymphocytes in the blood isn't something we need be too concerned about.

Hallek says it well in his paper "Guidelines for the diagnosis and treatment of CLL":

bloodjournal.hematologylibr...

"Patients with CLL may present with a markedly elevated leukocyte count; however, the symptoms associated with leukocyte aggregates that develop in patients with acute leukemia rarely occur in patients with CLL. Therefore, the absolute lymphocyte count should not be used as the sole indicator for treatment."

What is more important is how quickly the lymphocytes are growing (the doubling time) and even this isn't something to be concerned about until your lymphocyte count exceeds 30. Knowing this would have saved me some anxious moments a few years back when my counts changed fairly rapidly as I went from a SLL to a CLL presentation.

Chaya Venkat has covered how to understand your blood tests and how to monitor changes in your Absolute Lymphocyte Counts in her usual thorough manner in her article below:

updates.clltopics.org/1562-...

In particular, read the section "Treating the numbers” is not smart"

I hope this reassures those newly diagnosed with high lymphocyte counts. It can be rather confronting to find the normal ALC range is between 1 and 3.5 (or 1,000 and 3,500 in the USA) and find your count is 20, 30, 50 or more! (or 20,000, 30,000 or 50,000 in the USA.)

Update May 2015

Since writing this, I've noticed that it is becoming more common among world renown CLL experts to more openly question the validity of a decision to treat purely on the basis of a high lymphocyte count. Basically the prevailing wisdom gained from observing thousands of CLL patients is that if a patient is otherwise well, just keep monitoring the patient.

Chris (Cllcanada) has just posted about a paper from the study of Israeli patients that further presents this case:

healthunlocked.com/cllsuppo...

and the paper: ar.iiarjournals.org/content...

From the discussion section of that paper: "Although hyperleukocytosis is an obvious reflection of the tumor burden in CLL, it is not considered a prognostic parameter in CLL and does not necessarily dictate treatment decisions."

and

"In general, symptomatic hyperleukocytosis is more common in acute leukemias but several reports have concentrated on cases of CLL presenting with symptoms related to leukostasis. In CLL, cellular hyperviscosity and leukostasis (caused by the formation of WBC aggregates and thrombi) are rare complications, probably due to the small size of circulating lymphocytes and their rheological characteristics, which are very different from those of neutrophils. Occasionally, cases of CLL with extreme hyperleukocytosis >1000×10^9/l have been reported to develop neurological abnormalities, retinal hemorrhages, lung infiltrates or thrombosis."

Neil

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  • A useful reminder Neil..

    Many of us can get stuck on the numbers game…

    WOW it should be X so I MUST now get some treatment..

    Also from what I have observed it is the older haematologist / oncologist who looks overall at the patient and does not treat by numbers.

    I have noted a few younger, often general oncologists, who study the numbers intently and then treat what appears to be a little early.

    More than ever we now need to treat only as absolutely necessary, as the new drugs in the pipeline are not chemo based, easier to tolerate AND appear spectacularly successful.

    Dick

  • Great links Neil

    As a patient with a VTE (blood clotting) history I remember not long after diagnosis that I did find it reassuring that Prof Hamblin was able to point out that "sludging" was not a risk in CLL so not something to worry about. However he was able to touch on the higher small increase in risk of DVT in CLL . Recently a warning has been added to IVIG, too.

    I remember at a CLLSA talk last year, I think it was Professor Moss who explained that blood vessels are just "pipes" the business end of the disease is in the tissue..Like in a car the engine is under the bonnet/hood.

    On that note it is important to remember that Doctors do not treat on blood counts alone they are only 5% of the picture. "Doctors don't treat numbers they treat people", see below.

    I find these brief videos from Dr Susan Leclair, Chancellor Professor, Department of Medical Laboratory Science , University of Massachusetts helpful.

    Lymphocyte Doubling Time - patientpower.info/video/dr-...

    When Do White Count Numbers Trigger Treatment in CLL? - patientpower.info/bio/susan...

  • Good supporting videos thanks Nick. After watching them, I'm now glad to see that frequent note on my CBC "smudge cells present" as that means that my B-cells are fragile and not surviving that well in my blood.

    Further to Dr Leclair's explanation of a quick way to get an indication of your lymphocyte doubling time, remember too that there needs to be a long term trend over quite a few blood tests (e.g. over a 6 month period) to smooth out the sometimes quite dramatic jumps and falls due to infections (particularly viral), etc.

    With automated counting, it is easy to misallocate similar sized blood cells into the wrong cell type, so lymphocyte count repeatability with the same blood sample can vary by +/-1 in any case. So a count of 10 followed by a count of 12 the next time may in fact mean that there's really been no change, despite it looking like a 20% jump.

  • I learn something every time I visit this site. Am still on W&W, WBC 112,000 but a couple of infections have been problematic. Good to know there cannot be a clotting problem. I thought apoptosis could be a problem with treatment with numbers over 100,000. Am plagued by neuroendocrine tumors but no research has any link with CLL . Anyone else experiencing this phenomena?

  • Good to remind folks that high numbers don't always equate to need for treatment. This issue is one good reason to get a 2nd opinion from a CLL expert before initiating treatment. As an example, my CLL expert Dr. John Byrd of OSU Medical Center in US allows a patient to reach a white count of around 300k before addressing the need to TX in the absence of "B" symptoms. He can make these judgement calls because he sees so many CLL patients and can allow a higher counts in many patients that would make many general oncologists very nervous.

    WWW

  • It was good to be reminded of that, Dave3579 and ThreeWs (that high numbers don't always equate to need for treatment).

  • Thanks for this info Neil. When I was diagnosed in November 2013 the ER docs did not handle it well. The nurse who answered the phone with my labs loudly announced "who's treating patient N the lab says its urgent pick up ASAP!!!!!!" They told me my WBC was 65k and that I would be admitted (it was Friday) so treatment could begin asap. I was waiting on a bed to open, the doctor who saw me ended his shift and I just sat, in total shock, thinking that I was clearly going to die. A wonderful new doctor came in and told me she had instructions from the hematologist who was covering to send me home and call his office Monday. turns out he wasn't in the facility and this was done over email but it ended up working out. When I met with him and he explained to me what CLL was and what it meant and that judging from my tests I would be on w&w and wouldn't require treatment until my symptoms got dangerous. Obviously my head was spinning but I was relieved that I didn't have to start chemo or consider a bone marrow transplant.

    He scheduled me for a GP appointment to get a regular physical and told me not to get nervous if the doctors were concerned just have them call him. He told me he had patients whose primary's tried to send them for full body mris and seek out second and even third or fourth opinions. He had already given me a respected colleagues number so I was on my way to a second opinion.

    When I explained to the GP that I had CLL and wouldn't need treatment for some time he went and got his boss and they began pleading with me to go to the ER. WHAT?!?!?!? I told them as calmly as I could to call my oncologist but they didn't believe me they thought I was in some sort of denial. The doctors left to confer and After about 20 minutes my phone rang, it was my oncologist and he apologized for them terrifying me. They came in and told me he had called them back(he was away on vacation) and that I could go home and they would call me with my cholesterol etc. they also told me that while they knew and respected my oncologist that I really should get a second opinion ASAP!!!!!! Wow, even after all the explaining and conference call they still didn't understand my disease.

    Fast forward 19 months later, my wbc is 145k and climbing and I am absolutely fine. My doctor told me early on he would not "treat the numbers" and wanted to see how things progressed over a year or so. My wbc climbs but all my other counts are perfect and my organs are healthy. will I need treatment? Absolutely. And probably much sooner than I would like but I'm 42 and in good health(other than a wee touch of cancer) so I try not to worry needlessly. I'm afraid, and on days when I feel shite I worry more than I would like but I know I'm on the proper path. Just a few short years ago or if Another doctor who wasn't experienced in CLL had gotten my case I might have been given chemo that hurt me worse than my cancer does. I'm hopeful that by the time I'm ready for treatment I can choose between a maintenance drug or a course of chemo or maybe even something new that I haven't even heard of yet. I'm optimistic, and I'm grateful. I know it could be far worse. My 79 year old mother was diagnosed with mesothelioma last March and the chemo has been brutal.

    Had this been just a short 10 years ago my choices would have been limited and I would think of this as a death sentence but I don't see it that way today. I believe that in the next few years that there will be a cure or at least a treatment that allows me to live a totally normal life. My oncologist thinks I'm going to die of old age and I'm pretty ok with that.

    I wish all of you the best, I know some of you have struggled for years and some of you have serious complications and that's why I consider myself so lucky. I got an amazing doctor and my futures just as bright as it was pre CLL. Even on bad days when I don't believe it I say it out loud, I have to because I could convince myself otherwise and what good would that do me. I encourage any of you who are new to make sure your doctor is experienced with CLL and get a second opinion regardless. Talk about your concerns, here and with loved ones. Join a support group. Do whatever you can to stay healthy and positive. Brighter days are ahead for all of us. Keep me in your prayers as I will keep you in mine.

    God bless,

    Pete

  • Great news Pete and a fantastic attitude both by you and your haematologist. Is it any wonder that newly diagnosed CLL patients are panicky when even trained and experienced doctors (but not knowledgeable about the specifics of CLL) act the way you observed?

    Thanks for sharing your most interesting diagnosis story.

    Neil

  • Pete I love your attitude! Thanks for sharing your story.

    Best wishes

    Deb

  • Thanks for Your statements....peace to You. w

  • Very informative piece. My WBC is at 70K and I thought I must be getting ready for treatment despite feeling well. Thankd

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