How high can your CLL White Blood Cell (WBC) count go? (And what does it matter?)

[AussieNeil]

I was rather surprised to hear Dr John Byrd mention a lymphocyte count of a million for someone with CLL in the presentation he gave in May 2013, see:

cllsupport.healthunlocked.c...

(While measuring your absolute lymphocyte count (ALC) is a more accurate measure of your CLL blood tumour burden, by the time your WBC/ALC gets into the hundreds, the error is only around five percent.)

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 January 2021 Dr Rick Furman's post to the CLL/SLL groups.io community

Thromboembolism and CLL

From: Rick Furman

Date: Tue, 05 Jan 2021 05:38:58 ACDT

Cancers, in general, are associated with an increased risk of blood clots. The data for CLL specifically suggests it is not. There may even be a protection afforded by the CLL due to the CD39 expression on CLL cells acting to help prevent platelet activation. Many of the studies in the literature are complicated by poor control populations.

Rick Furman, MD

Updates

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."

Still not convinced? Here's what Dr William Wierda of MD Anderson has to say on this: "We don't use the white blood cell count as an indication to treat. So I'll give you an example of a patient I saw in the clinic yesterday who has—had a white blood cell count of 250,000. He had nearly a normal hemoglobin level and nearly a normal platelet count, and he had no symptoms, so—and he had no lymph nodes.

He had stage 0 disease, but he has a very high white count. It's not causing any trouble, so I sent him on his way back home to see me again in six months."

patientpower.info/video/wha...

Or as Kerry A. Rogers, MD, a hematologist-oncologist with The Ohio State University Comprehensive Cancer Center in Columbus says;

“When it comes down to whether you should worry about high lymphocytes, I guess the question is how high, and how quickly did it get there?” Dr. Rogers said. “If it’s barely above normal, that’s expected in someone with CLL.”

If, however, you see lymphocytes go from, say, 19 to 230 quickly, that’s a significant change, and something you should discuss with your hematologist, Dr. Rogers said. It could just be due to starting a new treatment, but you should initiate the conversation with your oncology team to investigate further.

“Just having high lymphocytes on its own isn’t particularly problematic in people with CLL,” Dr. Rogers noted. “Normal lymphocyte counts are between four and 10. People with CLL can get up to 300 or 400, and that’s actually OK. But if you go from 20 to 400 overnight, that’s alarming, and probably something that needs to be addressed with a treatment if you can’t identify a cause, such as a recent infection or something similar to that.”

patientpower.info/chronic-l...

Neil

Last updated in October 2023

[Kwenda]

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

[HAIRBEAR_UK Founder Admin]

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-... youtube.com/watch?v=xQ5_bVv...(Not working as expected?)

When Do White Count Numbers Trigger Treatment in CLL? - patientpower.info/bio/susan... youtube.com/watch?v=Bd-ReP8...(Not working as expected?)

[AussieNeil Partner Administrator]

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.

[Kjohnsonmay]

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?

[ThreeWs]

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

[PaulaS Volunteer in reply to ThreeWs]

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

[Petey613]

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

[AussieNeil Partner Administrator in reply to Petey613]

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

[DebinOzinLondon in reply to Petey613]

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

Best wishes

Deb

[arcarcarc in reply to Petey613]

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

[LKVVZ in reply to Petey613]

Any update on your condition now Pete?

Also when you say you feel "well" does that mean you have NO SYMPTOMS at all?

[lovelifesimply in reply to Petey613]

Hi there, I am not sure you are still on this board. But was curious to see how you are doing now? I have CLL, 43 yr old female, diagnosed 1 year ago. WBC 150k. Went through 4 months of imbrutnib chemo (horrible) new oncologist took me off 8 months ago. My numbers keep climbing but I feel good.

Hope you are still doing well!

[amitgeeta in reply to Petey613]

Hey.. Thank you for sharing this. i am reading this in 2018 and hope this reaches.

My Mum's WBC count is 53k. a few years ago when her WBC count was as high, and she had a pain complain near her spinal, docs found out it was TB node which was treated my meds and is now completely gone. at the time docs had said there were chances of CA but is in dormant state. today after years, she has a headache started since a few days. did a check up and came to know she has High BP (180-180) so doc started one pill a day for her High BP. Do we need to worry about CA?

[AussieNeil Partner Administrator in reply to amitgeeta]

It would help if you didn't use TLAs*

By CA I presume you mean Cardiac Arrest? Given this is a community of people with CLL that aren't medically trained, you should not trust your Mum's health to advice here, but ask her medical specialists. Only they would know her complete medical history and should be able to provide her and you with some indication of the degree of risk your mother has.

*TLAs (Two or Three letter Acronyms)

Neil

[Ezjacobs]

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

[LJB1951]

I too have CLL. My last count was 189k and everything else is normal so far. I feel great for now—no treatment in sight as of now, but I’m sure it’s coming. Until then, I’ll live life to the fullest with my family. Have a great day!

[alexmcg48]

Interesting stuff, I was given something of a Biology lesson at my last visit to the haematologist. She was Dutch on secondment to the NHS & she explained that there are red cells (haemoglobin) that last a few days & the white cells that should only last a couple of days & are filtered out by the Pancreas when their tine is up, but what happens is that some of these white cells decide they're not ready to go aren't filtered out. They're basically useless at fighting infection, but they're like Dad's arm & still think they're up to the job. Essential the more there are the more they get in the way until they clog up the system & get in the way of the good white cells trying to fight infection.

I'm fairly lucky at present in so much my count is slow growing & she suggested my immune system is still fairly good, but what I took away from this discussion was that Dr's wouldn't consider treatment until Dad's army started to cause me issues like weight loss, fatigue or getting numerous infections, so I'm not surprised that some people are living with very, very high counts. It's not the counts themselves that seem to be the issue, but what other affects they have on the individual.

I hope this makes sense, I'm no Biologist, but this was my understanding of why I shouldn't fixate on the counts themselves.

[asinghuser]

Hi Neil,

Actually wants to know few things...

1 year back my brother was diagnosed with AML and they had treated with autologous bone marrow transplant. Now Brothers report shows some elevation in counts and doctors are saying relapse but with the grace of god brother is doing great.

His recent counts are:

HB: 10.3 , WBC: 30.5, Platelets: 49 (its never recovered after transplant) and there is blasts: 67% .

Is there something we should worry about ?

[AussieNeil Partner Administrator]

I'm not medically trained and I'm not familiar with AML Being an acute rather than a chronic leukaemia, i would expect that he will need close monitoring. I hope that he continues to do well.

[asinghuser]

ok thanks

[Petroc]

As ever Neil thank-you, were it not for you I would be in a constant state of panic as I try to assimilate all the new medical info.

I hear one thing from one source and the opposite from another. You are my definitive point of reference.

Many thanks,

Pete