Please help me understand white count numbers I am reading in various posts. I see numbers like 20, 30, and in one post recently 300.
I was diagnosed in October 2018 with Monoclonal B Cell Lymphocytosis, and my Clonal cell count was 4900. I was told that a person is not technically CLL until the Clonal cell count reaches 5000. My white count on those tests was at 17,500. Two months later on Dec 5 I had another test for a different reason, and my white count had risen to 23,500. So I only know of these numbers in thousands, with normal supposedly between 4000 and 9000. So I'm confused by these numbers in every post that is not in thousands. When they say 300, do they mean 300,000?
Would my jump in two months from 17,500 to 23,500 be a big jump in that time?
Thank you for your input
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wizzard166
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The 300 most likely was referring to 300,000. The 17500 to 23500 is a 6,000 jump in two months and although it not going right direction it may not be to much yet for the Hematologist to have you start a treatment. In my case my numbers doubled every three months over 9 months period earlier this year before the doctor had me start Inutrib
Best I can say is see what next reading will be and of course listen to the doctor.
Thank you very much for the input. I called the Hematologists office and her assistant gave her the wbc info. I got a message back the next day not to worry, and wait until my next appointment in April. What was the wbc level that yours reached before they put you on treatment?
Well when I was first diagnosed in 2015 my WBC was 340K and I did BR 6 treatments over six months and went into remission for 2 1/2 years when I started to doubled every three months earlier this year when it hit 107K my doctor had me go on Inutrib
The name of our illness is chronic lymphocytic leukemia. Lymphocytes are a type of white blood cell. When we get cll our lymphocytes replicate more often and do not die off as they should.
In cll these lymphocytes, types of white blood cells, enter our blood stream from the marrow where they are created. They don't die off as they should. They can accumulate in the blood, in our lymph nodes and our organs like the spleen.
With some people these cancer cells divide and replicate quite slowly. In others, much more rapidly. It is the pace of our cll that usually dictates treatment.
So someone who has a count of 200,000 wbc might not need treatment if they had cll for 20 years which slowly raised their wbc that high. Someone with a wbc of 50,000 might need treatment if their wbc count had doubled in the last six months.
Our doctors usually look for trends in our bloodwork and rarely act off of one lab only. There are variances with all lab testing and our wbc can be influence by colds and viruses.
My wbc was 50k at diagnosis, 33k the next day and over 60k the next. Over a period of time it trended up, some days dropping back, but overall trending up.
The jump you describe is a big jump in the sense if we extrapolate it out, your wbc would be doubling in six months. Its not a big jump in the sense its just one set of labs, your wbc could be more or less next week. Your doctor will look more for trends.
If you have cll, most likely your wbc will rise as these lymphocytes accumulate. Its the pace at which it rises that matters most, but there are other factors. Some people have a type of cll where their wbc in the blood stays relatively normal while the bad cells find their way into their nodes.
So you have given not much information where anyone on here could predict the pace of your cll. There are prognostic markers like FISH and IGHV mutation status that help predict if our cll will be slow or fast growing. But even with the markers, its a guessing game as some with bad markers may do quite well and vice versa.
I imagine you are still freaked out by the diagnosis. Just know that most of us will live a very long time from diagnosis, some normal lifespans. Should you ever have to treat, you have a lot of options that are not nearly as toxic as treatment options with some other cancers. I take one pill a day which controls my cll with minimal side effects. I work, play and travel full time. Good luck, I hope this answer was helpful. See a true cll specialist if you have not. jeff
Thank you very much Jeff. I'm almost embarrassed now with a white count so low, compared to others who are battling the illness and in treatment.
My Father had CLL and died at 71, his Mother had CLL and all I remember is that she was much older than my Father, and her Father had CLL too. I have memories of him as a little boy, but don't really know how old he was when he passed. This March I reached 71. I've heard some doctors poo poo any relationship to CLL being inherited, but my data obviously trashes that concept. There is no way possible that a person, and their Mother, and the Mother's Father all had CLL, and there was no inheritance factor.
Overall I am not very worried, but because of what I saw with my Father it does scare me a bit. I remember my Hematologist saying a Flow something test, and FISH confirmed my diagnosis with the Monoclonal B Cell condition. She also said something about Mutation result that wasnt good, but she didnt get into it.
Wizzard, no need to be embarrassed. Its a strange illness, unlike other cancers. We wait until the last minute to treat with cll as opposed to treating early. A high wbc is not necessarily indicative of worse disease, its the pace that counts.
Your FISH test tells you what type cll you have, the main ones being 13q, trisomy, 11q and 17p, generally speaking good to bad in that order. Mutated IGHV is better than unmutated. Most 11q and 17p types are unmutated.
These markers have a bit less meaning today with new drugs like ibrutinib that treat all sorts of cll very well.
There is a learning curve on all this that takes a while to figure out. Your question was perfectly appropriate. Jeff
Hey Amma, they are sweet dogs aren't they? I have two Blenheims, Zoe and Bijou. They are my first cavs, I had a cocker before. That's Bijou in the picture. She is my tomboy. If you look closely at her picture you will see the lizard in her mouth. She terrorizes the little lizards in my back yard and then comes to the door with a lizard in her mouth, expecting me to let her in. LOL. She is so sweet, but I guess that's a matter of perspective from the lizards point of view.
Your WBC variations are quite normal. You can best determine to what degree that's caused by CLL by monitoring just the lymphocyte count. Even the lymphocyte count includes healthy B, T and NK Lymphocytes as well as CLL cells, with all of them variable from test to test. That's why specialists only look at how fast CLL is growing AFTER the lymphocyte count has increased beyond 30(thousand). Depending on other white blood cell counts (and assuming that they are in a healthy range), that can equate to a WBC count of anywhere between roughly 33 and 40 (thousand).
It is well recognised that in about 10% of cases, CLL IS familial. There's even a NIH study to try and determine why : dceg.cancer.gov/research/cl...
welcome! As pesky as it is, becoming a CLL focused “Sherlock Holmes” will lower your worry level possibly a great deal - it has for me. And I’m in early training. Start with copies of your blood tests inc. FISH, and get your blood tests from a few years back. Learn the categories of blood cells. Theres plenty of data and good info here and on the CLL Society and CLL and Lymphoma Society websites and many other posts. Watch the CLL experts on YOUTUBE. The people on this site, esp. admin. & the regulars are amazing and generous souls. I read this every day.
This is a wiley disease. Each case is different since there are several sets with multiple variables - think Rubix cube or Kalidescope - no two exactly the same combos. There are a large number of treatments and the number and combinations is steadily growing.
My doctors - who are CLL “experts” have told me that WBC is only 1 factor in deciding to treat and they tell me some people with super high WBC’s are not treated when all else is well.
For sure, see CLL specialists primarily or add one to your team of doctors. I believe in driving my health care and don’t typically sit around and idly follow one doctor. I don’t shop for opinions either - I believe in getting into action - no matter what I am dealing with. I like multiple opinions and solutions. I say “3 solutiin for every problem”!
Now you have CLL - getting into action might make you feel better because that part you can control. Educate yourself.
Plus, there are some really funny and insightful folks in this boat!!
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