I was just diagnosed this Feb as stage 0 and on watch and wait. When I had my first follow up appointment with my Hematologist last week, the blood work wasn’t ready. We have a program at the hospital where I can see the blood work as soon as it’s ready and I was really shocked. My Abs Lymphocytes were 2.67 and WBC 11.7 (just a bit high). All my other numbers were normal.
I know it’s normal for your numbers to fluctuate, but they have been high every time for almost a year. Has anyone else had this happen? Thanks for your input.
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Can2021
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As I understand, the reference range for Abs Lymphocytes is 1-4, my last numbers have been 4.5, 7.2, 8.3, 8.1, and now 2.67. Leukocyte reference range 4-11, my tests have been 14.3, 12.1, 12.7, 16.9, and now 11.7 (which is just a touch out of range). I understand I should expect the numbers to fluctuate, but it seems strange they fluctuate back into the normal range.
In the UK the GP doesn’t normally refer you to Haematology until the wbc goes above 30. Hence stage O like you said.
Don’t get upset over these very small fluctuations. Blood tests can be inaccurate especially with low numbers like these. Bloods can rise and fall with infections.
You're in w&w and stage 0. When my CLL worsened I had symptoms of bruising, chronic fatigue and blood work that had doubled. Right now your Labs look pretty good and not much to worry about.
Try to enjoy life and don't worry too much about slight changes in the blood work. 😊
Having CLL means our lymphocytes are abnormal and we have some immune system dysfunction. And "lymphocytes slow to die off compared to normal lymphocyte cells" doesn't mean they never die, they just take longer than usual. Your numbers could reflect this. Plus, "immune dysfunction" means other components don't function as well, but function somewhat. So you may have some T-cell stimulation that are recognizing the abnormal lymphocytes and destroying them.
I recently had close to half of my lymphocytes "magically" disappear, from 180K to 110K . I was in between treatments. The above was the explanation theorized, along with a possibly delayed reaction to a Phase 1 clinical trial drug that I had stopped because while it worked at first, it then stopped to where I was in a very slow creep upwards of ALC, and my spleen grew to twice the normal size.
Can2021, it is possible you have Monoclonal B-Cell lymphocytosis which is a possible precursor to CLL, thus you are are stage 0. MBCL patients may progress to CLL at a rate said to be 1—2% a year. You may or may not progress to CLL at that rate or possibly ever.
I am going just by what you have revealed and do not know any other information about your blood/health. There is also the need to monitor RBC, HGB and Platelets, so if these are all in range, you may be getting fewer appts. for awhile.
Drs. monitor at different intervals and I would suspect your interval of monitoring to be lengthened if it isn't already and there are no symptoms to make the Dr. want to keep a closer watch.
Keep in mind that if someone has been diagnosed with a monoclonal B- lymphocyte population, with the characteristic immunophenotype presentation of CLL/SLL, they could have Monoclonal B Lymphocytosis, Small cell Lmphocytic Leukaemia, or Chronic Lymphocytic Leukaemia. (CLL/SLL can present as either a leukaemia (mainly seen in the blood) or a lymphoma (mainly seen in nodes and spleen)). While the immunophenotype flow cytometry test has detected a pre-cancerous (MBL) or cancerous clonal population (CLL/SLL), CLL/SLL cells don't accumulate without ever dying, it's just that the rate of apoptosis is generally slower than the rate of cloning. (This was proved a while back with some clever heavy water studies). The cut off for a CLL vs an MBL diagnosis was arbitrarily set at a lymphocyte count of 5.0, with some sources requiring that to be the monoclonal count not the lymphocyte count. Changes in the total tumour over time and its distribution between lymphoid tissues and the blood can fully explain what you have experienced. Keep in mind that in CLL/SLL, lymphocyte counts can range up to well over 1,000 (1,000,000 in USA lab measures) and we have members who have experienced counts of over 500 in our community.
There is also a 1% chance of a spontaneous remission/regression with this illness, so if your counts remain low for a further 9 months and you see no downward trends in your haemoglobin, platelets, or other blood counts, congratulations! What you've experienced is still very good news, showing that you are in the early stages of this disease and may never need treatment.
Neil, is this cloning of monoclonal B cells going on in the marrow? Why they don't use electrophoresis more often to filter out the bad cells from the blood? Every monoclonal B cell clones itself? Or just a few? I don't understand this part.
There are germinal centres in the nodes and bone marrow, where cloning occurs, but I don't know of any studies into the relative growth rates. Not too long ago, it was established that CLL is in its dormant phase in the blood. That was a huge breakthrough, because nearly all CLL research was done on CLL cells derived from blood samples and observations on activity extrapolated (incorrectly it turns out) to CLL cells where they sequester in the germinal centres. Importantly, this includes research into what kills CLL, but not necessarily in germinal centres, where CLL cells get stromal support from nurse cells, which improves their survival, due to the pro-survival signalling they receive.
I would say that the main use of leukapherisis with CLL nowadays is as a collection procedure as part of CAR-T therapy. I don't recall it being mentioned as a treatment in the 12 years I've been reading about CLL. I recall Chris Dwyer (CLL Canada) saying it only gave temporary relief, which makes sense to me, because much of the CLL tumour burden is usually in the nodes, spleen and none marrow, so clones from there just replenish those removed by the leukapherisis procedure. If you google for CLL and leukapherisis, you only get one prominent return, mentioning using it to drop down large lymphocyte blood counts. Given CLL/SLL cells are so small, it's very unusual to have a medical need to do this. Nowadays, we also have very effective treatments that quickly reduce blood lymphocyte counts (albeit with the accompanying risk of Tumour Lysis Syndrome). I consider it telling that leukapherisis isn't even used in patients with very high lymphocyte counts prior to treatments which come with a risk of TLS.
I think leukapheresis was used mostly before the internet, so not a lot of data there. I spoke with a long time nurse in a dialysis center a few years ago who remembers doing more of them early in her career. I was interested in doing one to remove tumor load.
Hello Can2021, Nice that your blood count suddenly came to normal. I am not a medical person but learning nowadays since my wife is also diagnosed with CLL. I have been following posts and found that it happened in some people. In the one post ( HealthUnlocked), I have read that after drinking 3-4 weeks of veggie juice the blood came to normal. I wish your blood will stay normal forever.
Hello Can2021, and welcome to our group yet I'm sorry you are here. If you had been sick any time before the labs were drawn and on steroids for any reason, that will make our numbers better as well. I experienced the same exact situation and luckily it was right before my oncology appointment and that is when he explained to me that because I had been on steroids for an inflammation issue, it made my CLL better. It seems he said steroids are one of the first lines of treatment they try because it does seem to make the numbers better for some reason I don't understand.
I hope you get answers but if not, don't panic like I did. I know mine slowly came back to where they were as the steroids got out of my system.
My hubby was diagnosed 5 years ago. Except when he has an infection, his blood work is always very close to normal. He does have lymph node involvement, mostly visible on scans. Occasionally palpable otherwise. In the past he was told he had SLL, and then SLL/CLL, but more recently they don't bother to distinguish the two forms. It is just a difference in presentation. All of the reasons your blood work could vary without this disease are still valid, the disease itself is one more variable.
I have had up and down numbers. My diagnosis was April 2018 when my total WBC was around 16,000. Every six months I'm seen, and in October 2019 I was up to 30,000 with the two tests before that each higher than the other. Then in January I got tested early because I had been sick for four straight weeks in December. It had jumped to 45,000 which was 50% in less than three months. I decided to look for a top CLL Specialist and took a trip for my first visit with her in Boston in February 2019. She ran a ton of tests, including bone marrow biopsy, and told me to wait and be tested again in three months. She felt that my being sick for many weeks might have spiked things a lot, and perhaps as I recovered the WBC would drop. She was right, I dropped back down to 35,000, and I've continued on W and W.
Very interesting is that I had another spurt this year at the six month juncture in October, from the 45,000 I had gotten to in April to 60,000 in October. Lo and behold I was back down to 46,000 a few months later (I get lab work for other things about every three months), so I had that new test in January. So my WBC has gone up and down almost like a roller coaster. What truly fascinates me however is the strange end of the year, two years in a row, spurt from mid year to late year. Then it recedes again like clock work.
yes. i have had that happen to me too. i was diagnosed over 20 years ago. my numbers are up and down. they never get very bad. i suspect i will never have treatment. ....knock on wood.
Sounds like wizzard166 and crazymazie have dysfunctional lymphocyte that are dying a little quicker than, say, people like me who rarely seen an apparent large die off of defective lymphocytes. Crossing my fingers for you that those cells aren't just migrating into nodes. Hopefully, you will be one of these people and may never need treatment, just impaired immune system precautions!
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