I'm lucky enough to be on Watch and Wait even after ten years of CLL. I haven't really paid too much attention to the numbers in the past, but at my last blood test the consultant mentioned my WBC count was a bit high (60.3x10.9/L). I mentioned it to a friend who's a nurse and she said that's nothing to worry about at all.
Is there anyone here that can say if my count is good, bad or indifferent?
I'm utterly ignorant of the terminology, so please treat me like a noob.
THANKS!
Dave
Hi DMF,
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Thanks for changing your online ID to something that does not expose you to hackers and Google searches & lock your post - see #12 a & b on this Pinned Post: healthunlocked.com/cllsuppo....
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Now to your question. Your WBC (White Blood Count) has lots of components that your consultant should be tracking separately from a more advanced blood test called a CBC + diff (Complete Blood Count plus differential) See this list of normal values: cllsociety.org/cll-sll-pati...
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You will see that the normal range for WBC ( Number of white blood cells 3.5-10.5 x 109/L 3.5-10.5 x 109/L) which is hard to read. So most would say low is 3.5 and high is 10.5.
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And yours is 60, so nearly 6x the high range. However many CLL patients are near 20x the high range before starting treatment. So the consultant will now watch many of your other values like HGB, HCT, PLT and ANC / Neut# since those values will go down when you are nearing treatment.
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The reason for watching the CBC + diff is that your ALC / Lymph number goes up with CLL but the other major component ANC / Neut# will go down when treatment is getting near. An ANC / Neut# well below 1 can be dangerous for infections, so watching that is important.
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Please print out the chart of normal ranges and ask your consultant or the nurse to help you read the complex numbers.
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Len
Really appreciate the detailed reply, Len. Many many thanks. And I’ve changed my profile name - hadn’t thought of the spammers/hackers.
You obviously know your stuff, but to a totally non-medical person like me it’s incredibly confusing.
Very good of you to answer, and I feel happier now I know it’s not so serious.
My last WBC was 165 in late March. My CLL specialist pays more attention to my red blood cells, how rapidly the WBC are increasing, if my lymph nodes are growing in size and symptoms.
At one memorable visit this past February, my WBC had increased by 50% and my red blood cells were out of normal range. He was concerned.
But on my next visit, on the red side, all was normal except for my platelets being low, and the WBC had only increased by 10%.
So, Watch & Wait can be a bit of an emotional rollercoaster. You may find your GP gets very excited by your blood work while your CLL specialist does not.
I follow the advice of my CLL specialist that I’m not to worry unless he is worried.
If you aren’t seeing a CLL specialist now, you might consider moving your care for this disease to a CLL specialist.
Great Post and chart. As ever Len you mske it so easy to understand. Why can consultants speak the same way! 😂
Dave, to add to what Len wrote, all cancers consist of abnormal cells. With most cancers, these abnormal cells form solid tumors. Brain cancer is where abnormal brain cells reproduce uncontrollably and form a tumor. Liver cancer involves liver cells. Blood cancers like Cll involve white blood cells.
A blood cancer is not a solid cancer. Our “tumor burden” is a function of how many abnormal blood cells we have circulating in our blood and lymph nodes.
There are many types of white blood cells. The type of white blood cells that are abnormal with Cll are lymphocytes, hence the name chronic lymphocytic leukemia. The dna in our lymphocytes is corrupted, allowing our lymphocytes to accumulate instead of dying a normal cell death.
If you were to look at the components of your 60k white blood cells, over 50k of them would be lymphocytes instead of a few thousand that would be normal. These cancer cells will likely continue to rapidly divide such that 60k might be 120k or 240k in a year. The more rapidly they divide, the closer we are to treatment.
Lymphocytes are the cells that make antibodies. When we get too many, our other good cells can get crowded out.
Your count of 60k can be okay if it went from 50k to 60 k in a year, that’s a slow progression. If it went from 30k to 60k in six months, that would be more concerning as your cancer cells would be more rapidly dividing.
So just knowing your wbc doesn’t tell much. A wbc count of 100k that has been stable for a few years might be less concerning that a 50k count that doubled in 6 months. Lymphocyte doubling time of six months is one trigger to treat Cll.
Hi Jeff, mine started at 26, 5 almost 5 years ago😔 today it's 205. Would that be considered rapid? I know that wbc is not an indication for treatment. But this really has always bother me. I wish I can bring it down somehow.
I'm with you on this one sushibruno, the explanation given here has really helped me,I was diagnosed November 2017 with a very low count of around 4.5 or there abouts ,I do remember it was only just in the parameters for Cll and it grew slowly until last year ,when at some point it doubled from under 10 to over 21 now a year later it's 31.24 as my bloods have only been done yearly up to this point I have no idea of doubling times ,but I'm to have 6 monthly checks now.Like you I'd love to know if or how I could reduce the numbers,good luck in your journey.
Lydia, your absolute lymphocyte count (ALC) doubling time averages out at just under a year, comfortably over the doubling time of concern, which is under 6 months. Assuming a doubling time of 6 months, your ALC would climb as follows:-
Year 0 , 1 , 2 , 3 , 4 , 5
ALC 5, 10, 20,40,80,160 (doubling every year)
ALC 5, 20, 80,320,1280, 2560 (doubling every 6 months)
If your lymphocyte doubling time was 6 months, then your lymphocyte count would be over 2,500 by now. Sometimes the ALC climb slows and even reduces. By the way, your WBC should be around 3 to 10 higher than your ALC.
Two years ago, Dr Lamanna informed you that you were nearing the time for treatment, so you've done well to still be in watch and wait all this time later. CLL specialists know to look for other confirming indicators for treatment when your lymphocyte doubling time is under 6 months. General oncologists that tend to use the same treatment guidance indicators for all B cell leukaemias, tend to get concerned when they see a patient's lymphocyte count approach 100. Hence it's likely you would have been treated by now, earlier than necessary, if you hadn't found one of the best CLL specialists in the world.
Neil
Neil thank you for the explanation. I understand what u mean. I was just pointing out that even though wbc is not an indicator for treatment time, it bothers me that it's 207,000. I know I tend to exaggerate when it comes to numbers and results. Hence u always explain things to me. I tend to fixate on it even though I shouldn't😏.
Sushi, more likely than not your cll will eventually need treatment. The fact you have been I watch and wait so long bodes well. Your cll doesn’t sound all that aggressive.
When you do treat, the chances are it will be with some sort of oral drug that will put you in a remission or, at a minimum, give you long term control of your cll.
There might be bumps along the road, that’s typical. You have a top cll doctor, the odds are great your doctor will be able to help you manage your cll for a very long time.
You seem to be more anxious about it than others, nothing wrong with that, we are all wired differently. Just try to cope the best you can.
There are no guarantees with cll. There are no guarantees that someone without cll might fall ill.
Im trying Jeff, im trying its all the fear in me that controls everything. I really wish I was stronger. Thank you.
I don’t think of how we fight our Cll as being strong or weak, we just all do the best we can. I am not so good at giving advice, all I can say is what works best for me.
When I am at my best is when I am totally living in the present. For me right now, the present is a new blended red wine I’ve not tried before and some nachos I made with a beef roast I smothered in onions, peppers, root beer and wine in a slow cooker.
After about 8 hours of slow cooking, I shredded the roast with a pair of forks adding Worcestershire sauce and Tony Chachere’s sauce (I knew Tony well back in the day). I put the shredded meat on fresh tacos with salsa, cheddar cheese and diced jalapeños.
So today was a good day. Tomorrow I go see if my neutrophils are holding. It’s just another day in the life.
Thank you Jeff, I should follow your foot steps. Sounds awesome. And u made me very hungry🙂.
For goodness sake stop it Jeff!! I'm salivating all over the phlebotomy waiting room!!!!
I totally get how you feel, as it is a state of limbo to W&W, but it’s a good limbo dance. Trust is one of the greatest awards we give to others and ourselves and once we get informed we have to trust not just others, but that we will know when to get additional monitoring (blood work) as CLL is a fluid situation (pun intended). One thing that helped me over the years on W&W is giving myself permission with limits on worry. Sounds odd but it works because during my diagnosis weeks I was like a hamster in a wheel, checking nodes etc. I think I finally exhausted myself and decided enough, I will only check my nodes x times. I think the unknown is always so powerful over the brain until it gathers information, makes a plan based on information and can be involved in self care. I am still learning about my SLL/CLL, and I still get anxious when I have my scans & bloodwork. The info on this thread today has really helped me add another layer of confidence that helps fight worry. That is why sites like this are so important because of the way the patient explains CLL is relatable vs the doctor. It’s like the light bulb goes off and the brain has another puzzle piece. It is always hard to share our feelings of anxiety about our health, and doing W&W is an anxiety producing soup. Know you are not alone and continue to be your best advocate for your whole health. Hugs💞
Thank u🙂
Dear Sushibruno,
I’m aware you live in the US, and it may be that others know of a similar resource in the US, however I’ve just come across a resource on the UK CLL Support website that is freely available at: cllsupport-act.org.uk/
This is a self-help method for the emotions that can be involved in diagnosis and in living with chronic conditions, here applied to CLL, and which includes feelings of anxiety. There is a lot to it, but if you go through it all and spend time working on the ‘exercises’ they give, I suspect you will find it very helpful in the long run. There is an intro video at the bottom of the page, after that go to ‘Let us begin’, then start the programme by going through each of the other tabs on the Home page.
I have noticed from some of your posts that you are finding it difficult to reassure yourself about some of the experiences and concerns you have with CLL. It seems you can feel pretty overwhelmed by feelings of anxiety and don’t know how to progress. Our network is fantastic for providing support, information and reassurance to others with CLL and this is a great start. Reassurance from others can make one feel so much better, but on its own it doesn’t last. Learning to provide reassurance for oneself can make a more permanent difference, but of course this is much easier said than done. I would suggest you give the ACT method on the CLL Support website a really good go then, if you feel you need it find someone in the US who can provide some help in teaching you to provide reassurance for yourself. There is good evidence that this – along with the ACT methods – helps provide lasting help for feelings of anxiety and fear. It is not about making it go away but about accepting and understanding it better – helping it to become much less important.
Thank you so much for sharing this. At this point I will try anything that would make me feel at least 75 percent better these 5 years have been hell mentally.
You're absolutely right when u said "u seem to be more anxious about it then others" I really wish I wasn't it feels like a punishment.
Sushibruno, how much coffee a day do you drink? 
(caffeine …)
1 cup🙂
Hi DMF,
All great responses you've received here, and very informative. As you've probably gathered, everyone is different, and I wouldn't be too concerned about the WBC. My journey has been a bit different, and I would actually welcome a WBC in the 60,000 range. Mine was actually approaching 700,000 before I started treatment. (Incidentally, my oncologist/CLL specialist said he usually doesn't let anyone go above 400,000, but I was young and healthy and not having any symptoms at all.)
From what he has indicated to me, the more important concerns are how you feel, how your RBC, HGB, and Platelets are holding up, and if you're having any other leukemia related symptoms. The longer you can W&W, the better, because they are developing new protocols every year and they are less aggressive and more effective at eliminating the bad cells and leaving the good cells alone...which is preferable to previous protocols.
Best of luck on your journey!
Wow to your numbers! My Primary Care doc would freak out! When my numbers increase a little they give me the treatment talk and I always tell him my MD Anderson doc says I am fine. To which my PC grunts and frowns with a comment to just keep up the good work as it’s working!
Yes, most GPs aren't well versed on the nuances of CLL or the W&W protocol. I think I'm a bit of a test case for my CLL specialist as well, but everything seems to be going fine on acalabrutinib and the numbers are trending in the right direction. I have also moved to an all organic diet (too much glyphosate and other toxic substances proven to cause leukemia in the regular stuff) and see a holistic practitioner/acupuncturist weekly to maintain the health of the rest of my body in a natural way.
It's not only your WBC count that matters. It's more about a combination of the WBC, RBC, & platelets. Your provider or oncologist should be explaining all that to you, so you know what levels to look for that would put you in treatment range. My WBC ranges from 18 to 22, but my RBC is down to 10.5. My Doc says when I get below 10 & stay there, he's going to consider me for treatment.
Also, do you have any pains in your lymph nodes? Is your spleen swollen? Are you lethargic? Ask your Doc about your physical symptoms in addition to reading #s -don't get caught up with a high WBC - that's not the only issue at hand.
Good luck & stay strong! BTW - I'm on the wait & see list, too!!!
I'm confused with WBC counts indicated. I am from the USA and my WBC count today was 39, up from 29.0 (10^3/mm^3). It appears we use a different scale here rather than 3.5-10.5x109/L. I have been WW No Meds for 9 years. Thank you
Congratulations on your stable CLL! Note that it's more accurate to monitor your lymphocyte count, not your WBC, because your WBC has 5 different white blood cell types included. See: healthunlocked.com/cllsuppo...
Most US labs report the number of white blood cells (or the respective component types) in a volume of a cubit millimeter. That's one millionth of what is reported in most other labs, which use the litre or a million cubic millilitres as the reference volume. So while most US labs report counts in thousands of cells, elsewhere, labs report counts in thousands of millions (billions) of cells or 10 to the power of 9 (10^9), vs 10^3.
Hence the reference range for lymphocytes in most of the world is 0.35 to 3.5 x 10^9
For most US labs it's 1.0 to 4.0 x 10^3 per cubic millimeter, typically expressed with the thousand suffix, So given your WBC of 39,000, I'd guess your absolute lymphocyte count (ALC), would be around a count of 36,000, which includes CLL cells, healthy B cells, helper and cytotoxic T cells and natural killer cells.
Elsewhere it's 1.0 to 4 x 10^9 per litre with commonly the 10^9 dropped, so I guess you have an ALC of around 36.
What is your lymphocyte count?
Thanks for the quick response. The 39 WBC was relayed to me by my Primary Doctor via labwork I did for him. Full results will be sent to my Oncologist this week. I will see her on 11/11/22. On 7/15/22, my last test the WBC was 29 and my Lymph# was 27.10; and Lymph% 93.6.
In August 2022, I caught Covid and went on Paxluvid. I was pretty sick. Now I may also be having some heart issues like fatigue, occasional shortness of breath. I'm have a Nuclear Stress test on Monday. I'm thinking with this high 39 WBC, and studies showing possible heart issues with Covid patients, Long Haulers, perhaps I have some sort of heart inflammation or virus. I am 73 and have been a runner all my adult life so perhaps I pushed myself hard in training recently so maybe things have finally caught up with me. Thanks again
Don't forget that as a resident of the USA, you have a free Expert Access video consult: cllsociety.org/programs-and...
Neil
How did they treat your low platelet count? What if low platelets are more of an issue than high white blood cells?
Highest white blood count
Critically low white cell count
White Cell Count
