Just for historical background. I am treatment naive. So I am trisomy 12, zap 70+(one test says yes another was inconclusive for zap 70),have a rare BCL-2 gene translocation and I am unmutated. My specialist feels that upon studying six years worth of blood tests that I have had CLL for six years, although actual diagnosis did not happen until January 2016 ,two years ago! So I do a lot of exercise, eat macrobiotically and i take some supplements. So last week after 3 blood tests in as many months, my ALC dropped from 19.2 to 10.78, to almost what it was at diagnosis, which was 10.4,two years ago today. Also my red blood cells for the first time ever, dramatically improved and platelets did very well, too. The RBC count actually went normal for the first time in 2 years. With this happening shouldn't I have seen improvement in my Neutrophil counts? They went up 4/10 of a point, but they are still very low at 1.8 And could someone please explain to me how my LYMPH% number would figure into this? It was 83% in APRIL 2017 and was 55% on my last test, last week. What does that mean exactly, or is that not so significant. Thanks. I won't see my cll specialist until May and this test was done by my GP as part of an annual physical. He really couldn't answer my questions .
Replies to this post have been turned off, because the focus of the post has shifted from that outlined in the post to promoting CLL remission from following a dietary protocol, when the evidence provided doesn't necessarily support that linkage. The author of this post subsequently discovered that they had good prognostic markers (IGHV mutated and normal ZAP-70) after seeing a CLL specialist: healthunlocked.com/cllsuppo...
While efforts to improve our health through a better diet and improving our fitness can provide many benefits and are to be encouraged (as outlined in many other posts to this community) sadly the expectation of a dramatic improvement in our CLL is likely to be met with disappointment - Admin
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Because CLL is a chronic disease, most of us are diagnosed years after we developed the disease, particularly if it is indolent. Doctors regularly ignore out of range white blood cell counts because this occurs with illnesses and allergies and they go back in range when we are over them. (This is partly why CLL specialists don't track the lymphocyte doubling time until the ALC (which incidentally includes T, N-K and normal B-lymphocytes as well as a preponderance of CLL cells), exceeds 30.)
Your ALC measurements are what could be expected for someone with an indolent type of CLL (which it seems your specialist considers you have, given your next specialist appointment is in May) - so let's hope it stays that way!
With respect to your RBC and platelet counts, I can't really say much, given you haven't shared actual results, only to say that RBC is not the preferred way of assessing your body's oxygen transporting capability. For that you should track your haemoglobin result, which is much more accurate. Platelet counts are hard to measure accurately, because platelets by their very nature clump together, so the degree of clumping has a significant influence on the automated count. You need to monitor your overall trends for all your blood test measurements.
As to why your neutrophil counts remain low (but are now thankfully in the normal range), that's easily explained by CLL infiltration in your bone marrow impacting more on your myeloblast progenitor stem cell from which neutrophils, eosinophils, basophils and monocytes are formed. Read up on human hematopoiesis.
Forget all about LYMPH% - it's pretty well meaningless looking at this when you have CLL. GPs tend to check these white blood differential percentage figures because it is quick to eyeball them for someone without a blood condition. With CLL, the preponderance of B-lymphocytes distorts the picture. If you have those play pens in stores with the coloured balls where you can leave children while you shop, then consider what happens if you consider lymphocytes to be the blue balls and someone pours in a whole lot of green balls (representing the response of eosinophils to an allergic reaction, say). The percentage of blue balls will go down, even though there has been no change in the absolute number of blue balls. In your case the LYMPH% has gone down because your ALC has dropped and your ANC has climbed, but could also be influenced by changes in your other white blood cells. Just ignore percentages and monitor absolute counts, from which the percentages are derived.
Thanks Neil. I appreciate your explanation. It will be interesting to see how it all turns out. My CLL specialist terms what I have as being a complex karyoytpe. Yes, it's true that the 30 ALC number is the number that they look at before they get all excited and start the tracking seriously. But I absolutely believe that my lifestyle adaptions are the reason that my ALC not only remained relatively stable, it went down almost 45% in the last nine months? In other words, if I had the disease for six years (as my HEM believes)---they could have just as easily gone the other way.I have kept a chart on all blood counts for 12 tests over the last two years. I was gratified to see that when I gave up gluten, added milk thistle and shiitake mushrooms to my diet about 10 months ago, lots of good things began to evolve. And I know plenty of CLLers with almost my exact CLL version who unfortunately saw their WBCs go through the roof very quickly,so I am indeed very fortunate. I don't believe it is luck or happenstance.... I think it's what I do. My disease is behaving indolently because I make my body as inhospitable to CLL as I can through the foods and supplements that I put into my body and the exercise that I do. I recognize that you are not in my camp. And you have your opinion. But if Glenn Sabin can do it , so perhaps can another person. I have heard MD Anderson's noted CLL specialist, Dr.Wierda, say on a Patient Power video,just last year, that he has a patient that went into remission due to a dietary protocol. He said that he believes the diet was the reason. So what can happen to one person, may just as well happen to another. And I also know of a NP,named Dr. Belanger, here in the States, with a naturopathic oncology background who treats CLLers. His take would be that there are holistic things that CLLers can do that have excellent science behind them, just not maybe the exact science that applies to medical healing, but science just the same! Truthfully, I wasn't asking for your opinion on whether what I do has slowed my disease progression. I was asking if anyone could explain what the Lymph % going from 83% to 55% in nine months meant. And I was really curious why my AN didn't vastly improve. But just the same thank you,Neil for taking the time to explain things and for giving me your insight.
While rare, some patients do experience spontaneous remissions. And following a healthy lifestyle and eating healthy can improve our ability to deal with all the secondary impacts of having a compromised immune systems, there is little to no scientific evidence of a cause and effect benefit in reducing Lymph counts.
Regarding Glenn Sabin, if you read his history and information closely you will see that his decline in WBC & ALC happened before he invented his diets and started selling things to others.
Len. I personally know several CLL patients who have had excellent results with cannabis. ( I don't use it personally)These are pretty intelligent people and they have no agenda. Yet they come on various CLL forums and talk about this. For some holistic protocols the fact that medical science won't study them, does not rule out the possibility that they work. As to Glenn Sabin, he used green tea supplementation(vitamin supplementation too, as well as exercise) and his results are followed by Harvard med. Lorenzo Cohen,of MD Andersen endorsed Sabin's book. David Rosenthal,MD, Professor of Medicine,Harvard medical School,said this,"When I first met Glenn 10 years ago, he told me he was going to beat his chronic lymphocytic leukemia. Since then I have followed his activity and daily regimen, and indeed, he has been extremely successful. Is he an outlier or is his regimen worth studying on a larger scale?" I'll add that Rosenthal is the past president of the American cancer society. So Len....my money is on Sabin. I just find it very hard to dedeuce that these noted doctors and cancer researchers would endorse a hoax. Nor do I believe for a NY minute that Dr.Wierda would discuss a patient experiencing a remission due to their diet, if such things didn't happen. If these world renowned CLL mavens can be open minded about other than strictly medical approaches leading to better CLL outcomes for some individuals,I see no reason to doubt them.
Admin comment: Dr Jeff Sharman would fit within the definition of a "world renowned CLL maven" and per this concurrent post entitled How do changes in diet affect CLL treatment? Are supplements safe to use? CLL experts Dr. Michael Keating and Dr. Jeff Sharman respond:healthunlocked.com/cllsuppo... Dr Sharman (who practices in Oregon where marijuana for medical use is legal), said 'Let me just state for the record real quickly, marijuana does not cure CLL. Just to be clear.' This is supported by the scientific finding that receptors in CLL cells for the active ingredients in marijuana don't trigger apoptosis, but they do in some other blood cancers.
I have been searching for your reference that Dr. Wierda said a patient experienced a remission due to diet. Can you reply with a link to that specific instance?
So I think diet is important for everybody. I'm conscious of my diet. I think it's important to eat a well-balanced diet and to not be extreme or excessive with regard to any of your dietary or health practices in general. There haven't been any diets—specific diets—that we recommend for patients with CLL that may affect their disease or their disease progression, so there aren't any special diets, any food, special food restrictions that we recommend for patients who have CLL that would make a difference in terms of their outcome.
There has been some data generated with green tea extract, which is referred to as EGCG or epigallocatechin, and that agent has been reported as reducing leukemia counts and perhaps delaying progression of the disease. So that may be one dietary—one agent that has some tie into—into diet.
But otherwise there aren't really any special restrictions or recommendations that we make with regard to diet other than being sensible about your diet and weight and exercise and activity. I think those are very important to maintain—your—a good exercise regimen activity level for your general health.
And here is Dr. Keating and Dr. Sharman addressing the same issue including using cannibis: patientpower.info/video/die...
Len...it was a snippet from a recent Patient Power interview. Maybe it was done at their Colorado seminar, but I can't recall for sure. Definitely..the panel interview was done in the fall of 2017.If you contact Andrew Schorr,he'd locate it for your,I am sure. It was a five minute or so interview with Dr. Burke and Dr.Wierda,I believe and maybe a few others. Dr. Wierda was commenting about various diets and supplementation. We had a discussion about (the forum did) this on the CLL Support FB forum. Also discussion about this appeared on another forum called CLL Watch and Weight Warriors. I am very technologically challenged, but if I find the actual video,i'll PM you or get someone to post it here. I have thousand dollar proposition that says this video exists...if I am right you pay me and I'll donate the money to the CLL SOCIETY...are we on? If I lose...you still give me the $1,000 so I can buy kale.LOL when i find it and i will..if it kills me....My recollection is that it came from a panel discussion back in October of 2017. The basic feeling i got was that Dr. Wierda was treating a patient who had been previously treated medically for CLL and her counts were getting worse. He referenced that she did some kind of diet..I thought he called it a "whacky diet" or something like that. And If I remember correctly....Dr Wierda said he was intrigued because she went into remission while doing the diet. He says something like,"I do believe there's something to diets!" He was not a big fan of supplementing at all, because he felt that supplements were not studied enough and not regulated. And of course....the diet aspect was discussed as being important for general health ,but also for how it affected CLL in that one patient. Jeff Folloder conducted the interview.
So here is the link to the entire interview, and I strongly encourage all readers to view the entire interview and not take one odd instance out of context.
(There is a complete written transcript lower down on that page, so you can follow /review the actual text to get clear understanding).
So I reiterate my reply above- diet & exercise are very important to maintaining health. Getting fit, maintaining a healthy weight and avoiding exposure to infection will help us survive life threatening events that we immune compromised patients encounter often.
If you choose organic, vegan or any other balanced diets- great, as long as they are in moderation. No one is has shown evidence that diet will cure CLL.
The remissions that Dr. Wierda's patient and Glenn Sabin had are most likely spontaneous remissions. healthunlocked.com/api/redi...
Until a controlled comparison study is done, those two examples are likely coincidence/correlation and not causation. en.wikipedia.org/wiki/Corre....
Well..I'll agree to disagree. Sabin worked at it and more likely his green tea is what helped him and his supplementing! You can't say beyond a doubt in either case that it was spontaneous remission. And everyone who I know who closely listened to this interview believed that Dr W. came down on solidly on believing that the "FADDIST DIET" actually did the trick for the patient he talks about.
In the PatientPower video (link in Len's post above) Dr. Keating noted that in one patient a high intake of carrot juice raised his ALC and spleen size and those improved dramatically when he stopped. So I have to conclude that for at least some CLL a high intake of glucose can increase its rate of growth.
Carrots aren't pure glucose, so we can't conclude that glucose caused the patient's worsening CLL. If our CLL is mutated, then exposure to a specific antigen can stimulate CLL proliferation. Studies of CLL B Cell Receptors have shown not the random spread of immunogllobulin structures one would expect, but a preponderance of immunoglobulins specific to antigens from specific sources, including fungi: ncbi.nlm.nih.gov/pmc/articl...
JG - After years of hearing ignore the percents I had an Ah, ha moment a few years ago looking at my counts while waiting for my doctor to come in. The percents have to add up to 100, duh - math was never my strength - ,so if, for example, your lymph percent goes down, one or more of the other percents in the differential will go up. Line up your percents separately from your absolutes and I think you will see what I mean. Then, ignore the percents and focus on the absolutes. They tell the story.
Thanks Ms. I suppose I was really asking if the lymph% lessens, if that is a sign of the disease acting less aggressively, than it was when the percentage is higher? I am also curious if LYMPH % is similar to the ATYPICAL LYMPH value. I am guessing not. They are very different values correct, with no correlation?
Test to test fluctuations in absolute lymphocyte count [ALC] under 30K aren't generally considered CLL related.
The GP test was likely done at a different lab than your specialist, which could also be a factor. I had a CBC differentials done at two different labs about 5 hours apart and there was a 10k difference in my ALC.
Blood test are snapshots in time with margins of error... follow trending over a year or two to get the big picture of your CLL.
I have been following trends for two years very carefully. One of my doctors is very curious as to why my IgG is at 1360 ? I tell him it's my healthy lifestyle adaptations. He of course thinks it's just genetics. Both of my hems(one a community doc, the other a world class CLL specialist) have said your diet is absolutely the best thing you could have done! But of course they stop short of acknowledging that what i am doing is directly influencing my blood values. That's fine..... I get that they have a different mind set. I value what they can do for me diagnosticIy . And if i should ever need to go nuclear and use the latest novel drugs, you can bet I will and that I do respect medical practitioners. My doctors acknowledge that the trends all point to whatever the heck i am doing appearing to be making me a very fit CLLer! My platelets had been going steadily down since 2006....to the point that two doctors suggested that steroids might have to be tried, if the trend continued. One doctor had seen his patients reversing the steady drop through diet. But for whatever the reasons--- radically changing my diet (eating macrobiotic foods) for the first time in nine years my platelets improved. I was at 109 at my lowest point(not breathing well and feeling tired all the time) and over the last year remained steady at about 120. First time that's happened....all due to the foods that I eat, period!! Believe me when I say i am following every blood trend. My specialist said that i have moderately aggressive version of CLL which is presently acting indolently. The bottomline: nutrition does affect CLL outcomes. You need B-12 or you may set yourself up for anemia or the red blood cells won't be carrying enough oxygen to the body's tissues. You need Vitamins K, B-12,folate, A and D in your diet or as a CLLer ,you may suffer poorer performance in your stamina and in certain blood related functions. And everyone on this site should realize that while modern medicine at this point can do great things in the battle to thwart CLL/SLL,if you also added the commonsense non-medical approaches that we can all do; like diet,exercise,supplementation and mindset, you'll in all likelihood feel better and add to the quality of your life. And for some, also employing integrative measures, very well may slow disease progression or help them to thrive ,even after medical treatment, during recovery.
You haven't appreciated the implications of my reply to you above about the difficulties of measuring platelets, where I said "Platelet counts are hard to measure accurately, because platelets by their very nature clump together, so the degree of clumping has a significant influence on the automated count." The best repeatability claim for measuring platelets on an automated blood testing machine I have seen is +/-10, with the worst +/-40. That means that if you have had the same sample of your blood repeatedly tested on the best performing platelet counting tester, you would get counts varying by up to 20 - and they would still be within the acceptable accuracy of that machine. You could well be having your platelets checked on a machine capable of far less repeatability, so variations of far greater than +/- 20 in your results can be just 'noise', not just from machine repeatability, but variation from sample to sample over time.
I've seen my platelet counts change by up to 60 from month to month, from 118, to 178. I typically see changes far greater than the change of 11, from 109 to 120, which you claim is due to "all due to the foods that I eat, period!!"
Platelets have no influence on difficulties breathing or tiredeness, that's determined by your haemoglobin level and degree of anaemia.
Read the below and gain some greater appreciation of how extremely slim evidence you are basing your claim that dietary changes are improving your platelet counts:
Thisis why your hems "stop short of acknowledging that what i am doing is directly influencing my blood values."
As to why your IgG is high, there could be a number of reasons and it doesn't necessarily mean that they are useful to you. It may be that a large proportion of your IgG is clonal:
Keeping ourselves healthy through exercise and a good diet is very commendable and well worth while, but please don't give your readers false hope on the basis of misinterpreting changes in your blood test results that are due more to the inherent limitations of blood testing equipment than changes in your health.
First off having low platelets definitely causes fatigue. And that's a fact...so I 'd suggest that you read up on that fact. Secondly the PLATELETS DISORDER SUPPORT ASSOCIATION which deals with many many patients ,absolutely agrees that food affects platelet quality as well as quantity. Go to their website and maybe you'd learn something? They have pages that tout specifically using anti-inflammatory diets and they sight statistics about patients who they have surveyed who had excellent results by using the macrobiotic diet as well as other diets. And that organization also receives medical consultation from doctors to address platelet issues. I have had a lengthy conversation with several people there,including their founder. I spent nine years watching my platelets falling and over the last two years since I started adding more Vitamin K rich foods, adding Vitamin D,upping intake of folate and B-12 foods and supplementing....my platelets have stabilized. So believe what you want...but please don't make unfounded statements about how nutrition does not affect platelets...that would be incorrect. And frankly..regarding Nutrition,Neil,I think you have a lot to learn. and I can tell you that my community ONC/Hem follows my platelets closely and never once did she ever make the statement that "well don't worry about the platelets value ,because the machine is probably not accurate!" She did congratulate me on seeing my platelets remain stable and agrees 100% that diet figures in prominently into the equation, though. And she follows my platelets very closely and was afraid that if they went under 100...treatment might in the near future be necessary, depending on symptoms and repeated low platelets value.
My comment about platelets and tiredness was in response to your statement "I was at 109 at my lowest point(not breathing well and feeling tired all the time)" . Not breathing well and feeling tired all the time for someone with CLL would most likely be ascribed to having CLL related fatigue due to messenger chemokines and cytokines from the CLL and the not breathing well due to anaemia. If your platelet counts were much, much lower so that your body was expending energy repairing bruising, then yes, some of your tiredness could be attributed to low platelets. Your platelet disorder is secondary to your CLL. I have pointed out to others worried about low platelets (not necessarily having CLL) that low platelets can be caused by food and drugs. It is quite possible that your improved diet has helped your platelet counts to stabilise and perhaps even improve, but honestly, a variation of 9 is way below the instrument variation of even the best testing capability. It's lost in the noise...
I've seen hemoglobin reproducibility/repeatability figures of +/-0.1 and +/- 0.3 for a normal range in the teens (not hundreds). I don't know what it is for hematocrit.
Another CLLer asked me at a support meeting, if having a high ATYPICAL LYMPH count meant that her body was being overridden by CLL b-cells. In other words, if her count was 97% ....and year later, her count went down to 50%,would this mean anything at all,medcally or disease wise? I get that we should track ALC,AN,platelets and Hemoglobin-- but really what's the significance of ATYPICAL LYMPH% ...does it show any TREND?
Reactive lymphocytes or atypical lymphocytes are associated with viral or bacterial infections. However they may also be associated with other conditions include auto-immune disorders like Rheumatoid arthritis. Some of the common causes for atypical lymphocyte include,
Drug reactions or medications are often associated with atypical lymphocyte.
Immunization is also considered to result in formation of atypical lymphocytes.
Stress and hormonal changes are responsible for the condition. In individuals suffering from endocrinal disorders like Addison’s disease, atypical lymphocytes are commonly observed.
Exposure to radiations is another cause of atypical lymphocytes.
Bacterial and viral infections can result in formation of atypical lymphocytes.
Viral disease like cytomegalovirus, Epstein Barr Virus and Hepatitis C are common causes for atypical lymphocytes.
Bacterial infections like toxoplasmosis, Syphilis and Streptococcal infections, EBV etc. can also stimulate the formation of atypical lymphocytes.
Dr. LeClair's video explains that atypical Lymphs are actually the good ones, functioning to react to an infection in the body.
Originally, in the 1920s, a physician looked at them and thought, oh, my god, they're damaged, they're evil, they're atypical, which is a medical term meaning diseased. By the time Bob Good got around to looking at these cells in his new vision of the immune system, he said, these cells aren't diseased, they're not damaged, they're not in trouble. They're defending us, so we shouldn't call them atypical because atypical means bad. We should call them reactive or stimulated.
So now you'll see on different differentials on your reports some places still use the word "atypical," because they haven't changed it, and some have moved on to reactive. What is a reactive lymphocyte? It's a lymphocyte doing its job. It doesn't mean that it's diseased. It means you have a cold. It means you have an immunization response. It means that you have strep throat.
It means that you have a functional immune system, which is the important part of it. The more of them you have, the more antigenically stimulated they are, the more noticeable they are. The classic disease in which you find reactive lymphs is infectious mononucleosis, and there you might have 70 percent of your cell being reactive lymphocytes. Most of the time you have a cold, you have strep throat, you have immunizations, maybe 10 to 20, maximum 30 percent of your cells will be reactive.
So what do we assume is the reason that my friend's atypical % went down like 30 % between two blood tests that were 90 days apart? Is it because her body isn't battling so many infections or is it that her immune response has been lessened by the disease. Or is it none of those reasons. i just viewed Dr. Le Clair's video...wow..very interesting. I just looked at my own ATYPICAL lymph%...it was 93% last April. YIKES!! and higher in October. But my CLL specialist never even mentioned it. That's why it's so confusing. According to her video....I must be fighting world war THREE. Len..I enjoyed Dr. Wierda's video..but I am referring just to the category on my Blood value reading that says ATYPICAL LYMPH% and unless I am misunderstanding,I think doctor W's video is concerned with protein characteristics of lymph cells( the fact that they are the types of Cells we don't regularly see in CLLers,is what he said.) and again, unless i am totally off base, having ATYPICAL CLL has a completely different context ,than just having a higher ATYPICAL LYMPH percentage score on blood test. I am guessing not much of correlation. RIGHT?
Atypical CLL means your CLL cells don't show up in the FLOW test with the expected proteins fluorescing. (Atypical lymphs are viewed under a microscope)
Peripheral blood flow cytometry is the most valuable test to confirm a diagnosis of chronic lymphocytic leukemia (chronic lymphoid leukemia, CLL). It confirms the presence of circulating clonal B-lymphocytes expressing CD5, CD19, CD20(dim), CD 23, and an absence of FMC-7 staining.
If you read that article further, it discusses the other Lymphomas that have a different combination of proteins that "light up". If your flow test gives muddy/unclear results then Dr. Weirda says:
Atypical CLL may be a term that's used if a patient doesn't have those markers or proteins on the surface of the cells, that is typical or diagnostic for CLL. For example, they may not have CD23 on the surface of the cell. They may have CD5, CD19 and either kappa or lambda light chain but lower levels or don't—not CD23, that case would be referred to as atypical CLL.
Len
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CD38 and ZAP-70
Stage 1/2 CLL and no follow-up visits?
Diagnosed with CLL November 2019
ALC and WBC doubles in 6 months 
