I have a rather long summary page from my flow cytrometry test and I understand none of it. Can someone here please help? translate to common language I can understand? I apologize if this is not the right thing to post. I had to push to get the test done as within this past year my lymphocytes and white blood cells have gone up and down., to me that is not normal.
Final diagnosis-Peripheral blood-TWO distinct B cell clonal population of unclear significance-see comment
Comment:
By WHO criteria, the two populations are:
1. B cell clonality of undetermined significance, CLL-type (lambda restricted, smaller population
2. B cell clonality of undetermined significance. Non-CLL typpe (kappa restricted, larger population)
The NON-CLL clone has a non-specific immunophenotype, lacking both CD5 and CD10, which is often associated with marginal zone lymphoma
While the two clones are large enough to explain the lymphocytosis, nether may have current clinical significance given the currently otherwise normal CBC
I appreciate any information or opinions. I have read there is a slow growing CLL, low b cell count, high b cell count and lot of other things I dont understand. The only thing the Dr told me was that we will repeat the blood tests in January and that I had the precursor, Precursor to what? He sounded serious but I did not have a chance to talk to him further. I assume cancer. I was also told to take turmeric. I love my oncologist who is also head of hematology at the hospital but I am wondering if I should go to a specialist in CLL. I live in the US. I am 75, female and have had kidney cancer, uterine cancer and now this. I was lucky enough to not have to have any treatment for my prior cancers, Am I lucky enough to get through 3? What do I do or dont do? Eat or not eat? So much info I feel I am missing.
This group is the best and I am so glad I found it. Thank you for your time
DianeSH
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DianeSH
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Sounds like my initial diagnosis, more or less. They’re right not to worry too much at this stage, is the gist.
MBL = Monoclonal B-lymphocytes
Lymphocytes = normal component of blood that responds to infections and addresses them. Normally these die off after a time and replacements are made.
Monoclonal = came from a common source / gene line. In MBL and CLL, there are cells in your marrow making malformed lymphocytes that don’t perform to design. One way they don’t perform is by neglecting to die when they are supposed to. Another is they don’t work against disease the way they are supposed to.
CLL = Chronic Lymphocytic Leukemia. For this diagnosis you would need an accumulation of *malformed* lymphocytes > 5x10^9/L. When you see references to ALC or WBC counts here, that is relative to this number. Mine are currently ALC 125 and WBC 130, which means I have 125x10^9/L of malformed lymphocytes. Pretty sure I have CLL.
The difference between WBC and ALC is because some portion of my lymphocytes are actually OK. The ALC is just the bad ones.
CDxx (some number) - a genetic marker established by screening your blood through a flow cytometry test, which basically sifts through your blood looking for abnormalities. CD5 is a common one for CLL.
You have two small populations of monoclonal cells in your blood but “unclear significance” means they each are below the CLL threshold of 5. One looks like it might be a CLL precursor. One looks like it isn’t.
Many people however have these — this is MBL — and they don’t ever get anything else.
Low-count MBL (count < .5) is indistinguishable from the general population in lifespan or CLL incidence.
High-count MBL (counts 1.5-5) affect something like 4-12% of the US population. It progresses to CLL at a rate of something like 2% per year.
So knowing low-count or high-count is interesting, but either way not likely to lead to much.
Even CLL diagnosis means not that much, as many CLL patients take many years (10+) to progress to treatment stage. Monitoring blood levels once a quarter or so is pretty standard care during that time.
Keep in mind the folks here generally are far along that progression, and not at all indicative of the general population or even the population with CLL.
Diet does not have much effect other than “eat healthy”. Exercise, to tolerance, will help more. Turmeric’s link to any effect is tenuous, and in too high a dosage can lead to serious liver problems.
I agree that exercise is very helpful. But I think diet is very important. In my case, changing my diet really helped. The difference was dramatic and rapid and has lasted.
I was sick and full of swollen lymph nodes before I started eating very differently. Within weeks of changing my diet my lymphocyte count declined and my swollen glands became less inflamed. Previously my counts were rising fast, and were approaching 70000 when I hit the brakes by adopting Paul Pitchford's anti cancer diet. Now more than a decade later I have been testing in the 20000s. Still high but much better, and my other blood cell types are much more in the normal range, and I was able to make antibodies after covid vaccinations, whereas when I was diagnosed it was expected that I would need treatment in 5 months to 5 years, and was given a poor prognosis. I wasn't even 50 and had a child still in high school, so was desperate enough to really be very very strict with my new food regimen. Luckily, it worked for me. Now, I am a grandmother!
I'm not super strict about what I eat any more but I did learn to eat my vegetables and I learned I feel better when I eat far less sugar and pay more attention to the quality of the fats meat and dairy I eat than I had been doing when I became ill. The two disciplines I retain besides eating more veggies and fruits is that I routinely put turmeric in my food in the afternoon or evening and I drink a lot of sencha green tea most mornings. I am still w+w and reasonably healthy knock wood after almost 15 years, and am unmutated.
I think the green tea and the turmeric, though foods, really do act as medicines, helping the clone cells to die faster.
I acknowledge that a lot of people find value in moving to a more healthy diet. Vegan and TCM (Traditional Chinese medicine) approaches have some popularity and Pitchford is a good example. “Eat healthy” was meant to acknowledge that, but was unnecessarily flip. It never hurts to cut out the junk food, particularly with the fatigue issues CLL patients face.
My comment was meant more to dissuade folks from the idea that “eating food X” will cure CLL. There are a few studies out there that indicate some potential avenues for further research. That’s different from a rigorous double-blind survey that proves that food X will a) have a positive and repeatable effect on CLL, and b) eating food X won’t cause other problems that are worse than the positive effect.
Green tea and turmeric are two foods often cited as having such effect. For those interested, the linked study talks to their effects in some detail. ncbi.nlm.nih.gov/pmc/articl...
I do believe that everyone has things that work for them in their journey, and that there is value in taking actions that provide efficacy and control.
I have also seen, however, hugely negative impacts when folks take bad science to extremes - the Wakefield scandal being the tip of the iceberg. So I hope it’s OK with folks to post links to appropriate studies for those interested.
Interesting article, thank you! I am going to spend some time with it.
I read the following article a long time ago before I decided on having my green tea in the morning, turmeric in the evening. See Fig. 5. It seemed to demonstrate that sequential use of the two agents worked better than either alone or both together, and EGCG before Curcumin was best. I wasn't sure it applied to me, but, being very much at sea, gave it a shot.
Further to scryer99 's great reply, please keep this utmost in your mind as you read the rest of what I say. Importantly, you had Monoclonal B cell Lymphocytosis (MBL), "the precursor", prior to this test. MBL is very common in your age group, I think about 1 in 5 have it and the incidence increases with age. You now have a moderately raised lymphocyte count. It's just over twice the typical upper limit, so your MBL has progressed. (We have members in watch and wait with lymphocyte counts well over 100k.) The open question is progressed to what? Your results show two types of blood cancer possibilities if the monoclonal lymphocyte count increases; CLL, which is why you found us and a perhaps more likely, a closely related blood cancer possibility, Marginal Zone Lymphoma. It would be an extremely rare occurrence having both. Hence I agree with your suggestion to go to a specialist in CLL and related B lymphocyte Lymphomas.
Given your oncologist's relaxed approach - and he indeed seems a good one, it appears that whatever you have is only slowly changing. Provided the rest of your blood counts remain excellent, it's quite likely that you'll die with whatever this is, not because of it. In other words, it's unlikely to reduce your life expectancy. In the seemingly unlikely situation of you needing treatment, there are excellent new treatments available. As your report reads "neither may have current clinical significance given the currently otherwise normal CBC" .
If you haven't been informed/read here that MBL does compromise your immunity, please be aware that it does. It's not as bad as happens with CLL- your white cell counts, in particular your neutrophils (5k!) are excellent, but you would be wise to get up to date with your recommended vaccinations in case whatever you have progresses: healthunlocked.com/cllsuppo...
I had some blood tests today for my kidney....my white blood cells have gone down a bit while the red blood cells have gone up. The test did not include lymphocytes. Just an ordinary blood test for hemoglobin, MCV, etc, just the usual
I turned the page over and it shows the following information:
The lymphocyte gate contains 65% of total v4nts of which 69% are CD19/CD20 positive B-cells. Two clonal B cell populations are identified.
23%of lymphocytes are lambda restricted monoclonal B cells which express CD19, CD20(dim), CD%, CD22, CD23, CD38 (partial, dim) and CD200, while negative for CD10. this Cll-like population is about 1600 cells/ul
45% of lymphocyte are kappa-restricted monoclonal B-cells which express CD19, CD20 (bright), cd22, cd200 AND fmc-7 WHILE negative for CD5, CD10, and CD38.
Another 24% are CD3 positive T cells with a CD4/CD* ration of 2.8
Karyotyoe: Not performed
FISH: Not performed
Molecular: Not performed
Flow Cytrometry markers: CD22, CD23, FMC-7
Again thank you for any help I can get. This is all greek to me
Means your “CLL-like” lymphocyte population is 1.6 and your “other” lymphocyte population is 1.6*(45%/23%) = roughly 3.2. Those CD codes match up to characteristics of various leukemia-related diseases.
Retesting blood in a few months is pretty standard given that data. Blood work fluctuates for a wide variety of reasons. They will keep an eye on it and if it progresses then they can figure out what’s next. Which, in many cases, will be “carry on, we’ll just keep an eye on it for many years”.
Hello Diane, You've received excellent answers from scryer99 and AussieNeil . I don't have anything to add, but do have a suggested edit to your 'second page' post above. It will be good practice to learn how to edit!😉 I am pretty certain that you meant to type 'CD5' instead of the 'CD%' when reporting the CD markers in the 23% of lymphocytes are lambda restricted monoclonal B cells. If I'm wrong I'll give you my winning ticket to the Powerball Jackpot. I promise. 🤗🤞
To edit your post click on "More" and then select "Edit". You can make the correction and then click "Post". Once you've made the correction. I'll delete this post. 😇
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