Attached is an interesting publication on diet and CLL progression.
An interesting paper on diet and CLL progression - CLL Support
An interesting paper on diet and CLL progression
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nuji
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Jm954Administrator
Sorry, but this is another N of 1 story and fundamentally flawed in that there is no information whatsoever about the characteristics of the CLL. About 30% of all cases of CLL may follow a similar pattern of stability, even going up and down but never needing treatment so this is not unusual.
I would also suggest that the typical diet plan as detailed in the paper is unhealthy with an emphasis on fruits (fructose), carbohydrate and processed items such as almond milk. If you followed that for any length of time you would certainly be very short of essential vitamins and minerals.
This sort of extreme dietary intervention is probably not a good idea unless you want to lose weight.
Jackie
Thank God there are knowledgeable people here to give medically sound opinions.
I had to go back and read the article just to try to understand who in the world would spend so much time on a one person study that was never going to prove anything. As you point out, its impossible to draw conclusions from these n of 1 studies. Its crazy to think a scientist would even spend this much time on a paper that was flawed to start. I have never seen a cll study ignore cll cytogenics like this.
Googling the authors made it more confusing, I cant see where the primary authors have anything to do with cll research.
When I read the article more carefully, it became more clear how it probably came about. It was all driven by the patient, who happened to be a research biologist. My guess is that he talked his friend, Frans X.Plooij, into authoring the so called study.
So who is Plooij? He is a psychologist who writes controversial children's books. I doubt he even knows what 13q cll is, he is evidently not even a medical doctor.
Moreover, the man who developed The Wonder Weeks, Dr. Frans X. Plooij, has shielded his book from all sorts of questions surrounding the veracity of the underlying theory. He even went so far as to attempt to stop the publication of a study that challenged his work before he left academia.
fatherly.com/love-money/the...
So really what we have is a cll one man study paper with the primary author being someone who writes controversial children's books and apparently has zero qualifications to write about cll.
Yet no doubt some will still read the article and conclude their cll can be controlled with some whacky diet.
Good research that confirmed our initial thoughts. Another snake oil salesman.
Thanks for that Jeff. I'd like you on my side if ever defending myself in court. You're marvelous.
After your search, I too started was wondering why any research publishers would publish falsehood. To my surprise, I found that researchgate.net is a social networking site and not an official peer reviewed research accepting publisher.
Now I feel like an idiot for having got exited about something posted in a social networking site. 🥶
Nuji, no reason to feel that way. I don’t know that the paper is false. This guy might well have had improved labs after a diet change.
Assuming that is true, however, it does not prove much of anything. Lots of people with Cll have their numbers bounce around for all sorts of reasons.
If one wanted to show diet was responsible for improved lymphocyte counts, then a proper study should be done. For example, get two groups of 200 people each with similar age with similar type Cll and let one group do the fad diet and one group eat a normal, healthy diet and then compare the groups.
Studies involving one person rarely prove anything. Don’t worry about posting it. It was an interesting article, a child psychologist writing a paper on Cll was unexpected.
hi ,,, thanks for posting this article it is an interesting read ..I have been a vegan for 30 years .even though now i have been diagnosed with CLL at age 73 .. i have no idea how long i have had it . the only reason i went to the doctor is because my spleen was bothering me . 2 1/2 times its normal size .the oncologist wanted me to start calquence immediately .i am stage 3 ... its been 5 months and i am still thinking about it .... the vegan diet has DEFINITELY helped me not to have the common diseases of my peers , diabetes , high cholesterol , heart disease , high blood pressure . etc. Nuji , before you decide this diet/lifestyle is snake oil i would recommend you watch the video "forks over knives" and the "game changers " even arnold swartzeneger has gone 99% vegan .. keep educating yourself . you will find it to be a blessing , james
Thank you for recommendations. I’m sorry to hear about your diagnosis. Wish you all the very best in your treatment
Thank you for posting. Not an idiot. Are we not smart enough to decide what sounds reasonable and what doesn't in the articles we read? A certain few folks have jumped on it a bit too harshly in my opinion. We need to keep minds open.
Certain people like myself are "jumping on it harshly" because of the way certain statements were made. Not because someone tried to show a change to a plant based diet helped them.
For example, in the introduction, the fourth paragraph is misleading. Just because there is an association between high BMI and CLL/SLL, does not allow one to jump to the statement "there is a possible link between food and CLL". Also, the statement"food has everything to do with BMI" is misleading because it is false. Food is a component, but it is not "everything".
The fifth paragraph talks about breast, prostate, lung, and colon cancer but the reference attached to this (9) dealt with prostate cancer cell lines. Nothing about breast, lung, or colon cancer, so where is this statement come from?
I am not going to list all the other misleading/false statements.
This is what I am judging. Calling out false statements isn't harsh.
It's like the early associations between high cholesterol and heart disease; people jumped to the conclusion that eating cholesterol was the sole cause of heart disease, and not eating cholesterol would stop it. The reality was a little more complicated than that. But that didn't stop certain groups from "publishing" the "fact" that eating high cholesterol was the sole reason one got heart disease, so stop eating eggs & beef and switch to corn products, including margarine.
Thank you for your post. You point out good critical points as have others on here. I have felt a desire to moderate the criticism because I hope people will continue to feel comfortable posting articles they think are interesting and possibly helpful without fear of the kind of fierce pouncing this article got ("snake oil", etc.) Don't want posters to have to worry they'll be made to feel foolish. I valued her posting but bet she won't again. Hope so.
You don't have to buy it lock, stock and barrel, or follow the diet, but come on -- let's not be like a lot of doctors back when the word nutrition was heresy, and failed even to acknowledge that yogurt might help diarrhea after antibiotics! It is an interesting article -- and it is far from alone in putting forth advantages of plant based diets -- plus not eating after 8pm plus adding b12 --all signs someone knows something of what they are working with here, and that is all this is, working with diet to see if it reduces ALC.
My difficulty with the paper (and see cajunjeff answer above too) is that it purports to be something it's not - a serious, rigorous, academic paper. It's very seriously flawed both in the diet suggested, if it were to be followed long term, and regarding the CLL biology.
I'm a big supporter of how diet can affect health and well-being having lost 84 pounds this year using a less than usual diet plan, without my doctor's help. I know how much diet can influence mood, mobility and general health/well being.
Sadly, you are right that doctors have little training in nutrition and little interest in learning more to be able to help the patients that they keep telling to lose weight, so we have to help ourselves. However, there are lots of people selling false promises and preying on vulnerable, desperate people who do not know about nutrition either.
Unfortunately, this type of publication could deter someone from getting medical help whilst they pursue this false hope. We do deter promotion of alternative (not complementary) therapies on this site for that very reason and make no apologies whatsoever for that.
Jackie
Thank you, Jackie. I agree I wouldn't want this article to cause anyone to forego following their onc's recommendations, whatever they take from this. It just never occurred to me that it presented that threat but rather promoting plant based diets (complementary, right?). I think its limitations are illustrated by how it didn't even describe that I saw what amount of EGCG was being used during that period. And yes, the diet sounded so limited it raised my philosophical thought, expressed elsewhere.
Actually, the EGCG dose is clearly defined per: "This was a trial of daily, oral Polyphenon E (antioxidant EGCG) as described in the phase-2 trial in patients with asymptomatic, Rai stage 0-II CLL.10" Reference 10 is the reference to the trial, where dosing information (4 grams per day) is provided. I would say that this is a succinct and accurate way to give dosing information. Also, I'm not sure whether this is best described as a complementary or alternative treatment. It is introduced as varying from the standard treatment of "wait - and - see" (watch and wait) thus:- "Patients with Rai stage 0 B-CLL (only peripheral blood lymphocytosis) are managed with a wait-and-see policy. To introduce a dietary intervention in this early stage of disease might have an impact on the course of disease. By advising such intervention, there is nothing to lose and, possibly, much to gain." I would say it depends on how it influences the behaviour of those deciding to adopt this approach, i. e. whether or not they decide to only monitor their lymphocyte count and stop seeing their specialist if their lymphocyte count stabilises. Section 3.4 | What might be the implication for clinical practice, doesn't give a recommendation about maintaining an ongoing monitoring relationship with a CLL specialist.
Now while working toward a healthier weight is admirable, as you and others have noted, the diet comes with its own risks (which the trial patient discovered and its good that this was reported). The main issue is that much has been omitted from the case study; particulars of the patient's CLL cytogenetics (flow cytometry, FISH test results, IGHV mutation status). Also, as I mentioned earlier, while the actual parameters used to determine whether treatment for CLL were reported as regularly monitored, these weren't reported. We have no idea whether the diet may have changed the distribution of CLL cells to the patient's nodes, spleen and bone marrow. So the article gives what could be a misleading picture of what happened by focusing solely on just the absolute lymphocyte count, where there is no threshold trigger for starting treatment. During the exponential phase of lymphocyte growth, the lymphocyte doubling time, was around 4 years, way, slower than the trigger for starting treatment of a doubling time of less than 6 months when the lymphocyte count is over 30. The patient's lymphocyte count peaked at ~65, before dropping to around a stable count of 40. We have members in watch and wait with lymphocyte counts of well over 300, with the highest reported count I know of being 1,400.
Anyone reading this case study is therefore at risk of being encouraged to adopt an inadequate diet and just monitor their lymphocyte count, ignoring other indications of their CLL requiring treatment, not being aware that this lymphocyte count pattern of change is one of the recognised patterns observed in watch and wait without intervention. As the article notes in section 3.4 | What might be the implication for clinical practice, "The indolent and often spontaneously remitting course of CLL is well known."
Neil
Thanks re dosing info. 4 grams/day sounds like a lot! Surprised it is reported to have had no effect. But I see no inconsistency with normal protocol (meaning complementary, not alternative) if, during our W&W period, we try a specific diet, which article calls an "intervention" but is just a diet, whether yall view diet as healthy or not. ("Yall" is such a useful word in the English language so please indulge me) Once lymphs get really way up there, then it might be harmful if, rather than starting treatment, one were to say, "no, I want to try this diet instead" (although to do so for a bit of time first before chemo I won't judge). But the whole premise of the article is starting when you are at stage 0. Can someone misinterpret? Of course, just like one can refuse to take vaccines and take cow wormer instead. But I find what they did interesting, the exponential ALC growth new for me, and the diet largely healthy-sounding -- may need tweaking, as they did, to make it more so, but plant-based diets are the name of the game these days healthwise (which is a goal I have but haven't come close to reaching). You might disagree and think meat or milk part of a healthy diet. My problem personally is the diet is so dreadfully boring.
About thirty percent of those on the phase 2 polyphenon-E (EGCG) trial administered by Mayo Clinic, saw no improvement in their node sizes or lymphocyte count. ncbi.nlm.nih.gov/pmc/articl...
Unfortunately some of us don't respond to even the best CLL drugs.
In contrast to this N of 1 case study report, you'll note that the Mayo paper classifies the patient cohort by the prognostic parameters ZAP70, CD38, IGHV mutation and FISH status (table 1). In table 3, it reports the P value per the above. While the Mayo Clinic paper also didn't report changes in other blood cell counts, importantly it did report changes in node sizes, because otherwise you don't know whether the intervention is just changing the redistribution of CLL cells between the blood and nodes, as CBD compounds and BTK inhibitors have been found to do.
As a relatively recent member of our community, you are also unaware of our community's past history of claims about diet and CLL management. It's very common for people to claim an improvement due to a dietary change, when they have a poor understanding of the wider impact of CLL on our bodies and a little knowledge of how WBC/ALC can change over time, without appreciating (as at least this article does) that remissions are not uncommon. In one notable case, a member adamantly claimed that their particular diet had cured their CLL, based purely on a few ALC measurements which were well within the normal variation over time for someone with stable CLL. They later modified their claim to state that their diet was slowing their progression, which, by the way, wasn't this restrictive diet.
Note the closing sentence of the Mayo Clinic paper: "Ultimately, the ability of EGCG or other nutraceutical compounds to delay disease progression will need to be determined in a randomized trial." When I told my GP that I was taking a high dose of green tea due to the above Mayo Clinic phase II trial report, he immediately asked "Was there a control arm?" I could only manage half the trial dose without my liver enzymes frighteningly shooting up, but that effect may have been exacerbated by another over the counter supplement that was supposed to boost my immunity. I subsequently found that immune boosters invariably have evidence of boosting lymphocytes, so should not be taken if you have CLL.
Neil
Thank you. I suspect the debate over diet will be never ending as we all want to be as healthy as we can. But may I ask, was your reference to CBD compounds to the cannabis oil? I take a capsule at night -- didn't know it would do anything but perhaps help sleep. And BTK inhibitors do that? I thought they were front line treatment for some? (I'm still W&W)
The distribution of cancerous B-lymphocytes in CLL/SLL varies from totally in the nodes and bone marrow (SLL), through mainly in the nodes (11q del CLL), to mostly in the blood. That dynamic balance can be influenced through enhancing or suppressing the responsible signalling, which controls the adhesion of CLL cells in their nurturing microenvironment in the nodes and marrow. A primary mechanism by which BTK inhibitors work, is by blocking this signalling, so that CLL cells slip into the blood stream where they are more vulnerable and eventually die from apoptosis. About two thirds of patients starting a BTK inhibitor, experience a marked increase in their lymphocyte count (lymphocytosis) for the initial few months of their therapy. It surprised the researchers in early trials and when ibrutinib began to be used more widely, a few doctors not aware of this phenomenon became very concerned and told their patients to stop taking ibrutinib!
Conversely, this post healthunlocked.com/cllsuppo... reports on research which concludes that cannabis may encourage the movement of CLL cells from the blood into the nodes, spleen and bone marrow. That's where they propagate and interfere with blood cell production!
CBD oil is also a potent inhibitor of CYP3A4, medicinalgenomics.com/wp-co... , the Cytochrome P 450 liver enzyme responsible for metabolizing many drugs. Using CBD oil can effectively cause overdosing on various prescription drugs that use that pathway, thereby increasing the associated side effects of those drugs. It interferes with over 500 prescription drugs to a varying extent: drugs.com/drug-interactions...
As with all health interventions, it's a risk/reward decision. Sleeping well is important for our health too.
Neil
Wow, so much I didn't know! I think I'll sleep okay without CBD -- or am going to try. Any other supplements you know of that are suspected of moving cells away from blood (or know any that move cells in the good direction --is that the kind of thing EGCG possibly does)?
EGCG targets several B-cell pathways, (hopefully) triggering apoptosis.
I expect that there must be other supplements that shift the CLL cell distribution in our tissues (blood is considered a fluid connective tissue), but I don't know of any others. That's why I always stress the importance of monitoring our total CLL tumour burden when trying any intervention.
Aside from other pharmacological effects, cannabinoids get a lot of hype with regard to helping with cancer but don't seem to be of much help with CLL beyond possibly reducing pain and nausea. Interestingly there was a sufficiently promising synergistic effect for an acute leukaemia for use with a proven drug in a clinical trial, illustrating that not all blood cancers are the same. I do wonder how many people with CLL looked no further than the reduction in their lymphocyte count when experimenting with cannabinoids and actually accelerated their progression by continuing. Without a clinical trial with a control arm, we'll never know.
Neil
I am sure this may be stupid, but how does one monitor ones "total CLL tumour burden." I'm assuming you are talking more than lymphocytes. Are you talking about the other indices such as WBC, neutraphil levels and platelets and RBC and uric acid, etc. ?
Given many of us just monitor our total WBC count when assessing the progression of our CLL, this is an astute question I wish everyone would ask when trying to improve their health when they have CLL.
Your total CLL tumour burden is the sum of your cancerous B (CLL) cells, which are primarily found in your nodes (we have around 500 of these), blood (lymphocyte count), spleen (a large specialised node), bone marrow, lymphoid tissue, (e.g. tonsils), then less often in your liver, then kidneys and potentially other organs. This is why during the physical examination part of your check-up, a good specialist checks your abdomen, with particular attention to your spleen and liver sizes, then your armpits, neck, groin and the back of your throat. CT scans provide the most accurate determination of internal changes, but should only be used sparingly because of the radiation risk, cost, etc. You need an invasive bone marrow biopsy to measure CLL infiltration, but observation of downward trends in haemoglobin/red blood cell counts, platelets and neutrophils gives you a proxy indication of remaining bone marrow capacity. There are other blood test prognostic indicators for how active your CLL is, primarily LDH and B2M.
Perhaps now you have a better appreciation of the inadequacy of this case study article. Thanks for intelligently inquiring - that's how we all learn.
Neil
Thank you, Neil. My onc -- who is head of blood cancers at respected University hospital here and gives lectures, etc, so I tend to think he's on top of his game -- has never that I recall looked into my throat (or maybe he knows my tonsils were taken out back when it was the craze for all kids with sore throats.) But of more puzzlement is that I don't think I have had a B2M test. I see him next week for my check-up and will ask about this. He does feel around my body, checks LDH, and checks uric acid, and of course makes note of neutrophils, etc. I follow all of these measurements, although big focus on ALC and WBC. I've never had a bone biopsy, nor a CT scan. Will report back what reason he gives but no B2M test.
Scoff if you like. A plant based diet diet worked for me.
I had a lymphocyte count of 67000 and rapidly climbing when I was diagnosed in 2008. Diagnosed as Unmutated CLL, and given a poor prognosis. My cousin suggested a plant based diet. I said: "I don't know, that sounds like a kind of big life-style change." She said: "Well chemo and dying are kind of big life-style changes. Which do you want?"
So I followed Paul Pitchford's anti cancer diet faithfully. Within 3 weeks I had both lost weight (I had not been fat and got a bit thin) and my lymphocyte count was cut in half. I am still alive 13 years later. My oncologist documented what I have been doing all along.
No one is scoffing, not sure why you would think that from my replies.If you read carefully and with an open mind you'll see that I'm saying that a plan like this should not be instead of necessary medical care.
As for your case, good for you and I'm glad you haven't needed treatment.
Right you are -- should not be instead of. But as for scoffing, look at the number of times in various comments whether by you or others that the diet has been called unhealthy or worse.
It was an unhealthy diet, and needed adjusting as noted in the article. When you have cancer, adequate nutrition is more important than ever and restrictive diets put you at risk. That's why the move away from the classic neutropenic diet.
We can't produce everything we need from the basic carbohydrates, fats, proteins, vitamins and minerals in our foods and have varying reserves of what we can't make. When we run low on something essential, there can be subtle adverse effects which eventually can have serious health impacts.
Neil
Hi, Neil, I am really interested in what you would consider to be a healthy diet, and what about this diet could be changed to make it healthy. If you add various vitamins and minerals?
Sorry, but I consider the basic premise of dietary control of CLL with one specific diet to be flawed. I've lived and observed long enough to appreciate that there is no ideal diet for everyone, due to the varying influences of genetics and personal gut microbiomes, with the latter reflecting to a considerable extent our favourite foods. Eating from a wide range of minimally processed foods seems to be a very important determining factor in maintaining a healthy gut microbiome, but this research is still in its infancy. When it matures, I expect there will be a significant benefit in adjusting to and following a custom diet individually determined.
It's great nuji that you've taken the time to give a link to this publication. From my personal experience and what I've read elsewhere, I have to say that the diet would not sustain me in any sort of health. Don't think I'd survive.
Gee, how does this person even know if people who exhibit high BMI relating to CLL have that high BMI due to lack of exercise instead of types of food eaten? Jumping to the assumption that high BMI is due only to type of food eaten (and where was the research supporting that statement, also) is ridiculous. Let alone the n=1 of the "study". I really dislike scientific sounding pseudo-babble.
AussieNeilAdministrator
MaxSmart mentioned this study earlier, to which I replied per this link:
healthunlocked.com/cllsuppo...
I agree with the feedback others have provided, while raising some additional concerns. The article reports on someone with fairly stable CLL (initial lymphocyte doubling time of 4 years) and while mentioning the measurement of many of the parameters which are used to determine when treatment is required, doesn't report them in the study results, concentrating solely on lymphocyte count, for which there is no threshold count that triggers treatment. Why withhold gathered information on changes in platelets and haemoglobin counts, node and spleen sizes? It makes me wonder if these other factors are showing CLL progression. The diet also proved unhealthy and needed to be adjusted.
Neil
So in other words there is no 1 diet proven to stop the progression of cll is what im understanding. That's unfortunate, I wish there was. At least I've controlled diabetes with a low carb diet. I wish I could do the same with cll.
Very interesting read. It also raised a philosophical question for me. If i knew that eating only, say, organic green pepper for the rest of my life, nothing else, no alcohol, no coffee, would bring down my lymphocytes or even cure me, would I be willing to do that? I don't know the answer to that question. This diet, of course, is nothing like that, but does limit a lot of enjoyable things, hence raising the question for me.
To your hypothetical - I know my answer, I would not be willing to do that! Life without coffee? Without wine? Without the pleasures of my favorite foods and trying new foods? No thanks... that sounds more like life without living!
I went on Paul Pitchford's anti-cancer diet very strictly after being diagnosed with unmutated CLL in 2008. I had swollen lymph nodes, was anemic, and was very exhausted. It was very unpleasant and I cried sometimes. But my lymphocyte count, which had climbed from 67000 to 69000 in two weeks prior to changing my diet, dropped to 32000 after 3 weeks following the diet. Over the years since I have seen my numbers go up and down, but never as high as it was when I made dietary changes. Last time I checked, the count was around 21,000 I think. My lymph nodes have been fine for years now. My other cell counts are usually good, though at my last checkup I was a little anemic. My platelets are fine. I am taking iron and I still drink green tea in the morning.
My oncologist was initially sceptical, but after awhile, she started to make notes about what I was eating and what i was doing.
I did not keep up the strict diet for all that long. After about 5 months I started visiting my family and it became almost impossible not to eat what was being served. But I have been fine. When I am at home, I can make sure to eat the things that have turned out to be health enhancing for me. The idea being that initially, the cancer adapted to the terrain in my body. By changing my diet for a while, I made my body a more hospitable place for my healthy cells, and less tolerable to the B cell clones. The green tea and lack of foods that my body had gotten used to helped the extra clones that were piling up in my lymph nodes to die. I did some detox things so that I did not feel sick and strain my liver when all the B cells died. I did yoga classes and spoke to a therapist to reduce stress. There were other changes that I made besides the diet. But the diet was critical, and it still is.
By the way, if you struggle with herpes, and I do, quality dairy may be good for you. Nuts contain a lot of arginine and dairy contains a lot of lysine. A high arginine low lysine ratio contributes to the reproduction of the herpes virus. If you reverse the ratio, and eat foods richer in lysine than arginine, you may find, as I did, that you no longer need to take acyclovir.
So I eat cheese and yogurt and limit my intake of seeds and nuts. But I try to make sure that any dairy I bring into my house is grass-fed because the fats in it are different than dairy produced by cows fed corn. It seems to help.
Good luck to any of you who are open to making dietary changes as a means to preserve or even reclaim health. I think it is a really good thing to do. And I think that this article is just an attempt made to document carefully what this person did that worked for them. I am glad to see the link. I think it is a helpful guidepost along the path.
Interestingly, my wife doesn't like meat, so to simplify cooking, 4 years ago, I too switched to what seems to be a similar diet to yours, plant based, but with cheese and yoghurt. Unfortunately, my anaemia, neutropenia and platelet counts worsened and just over two years later I needed treatment.
I'm glad you are doing well, but without a clinical trial, it's impossible to know whether dietary changes can influence CLL progression. It might help some of us and worsen progression in others. Personally, irrespective of diet, I presume my bone marrow infiltration just got to the point where my bone marrow was on the verge of failing completely if I refused treatment. I was disappointed that I didn't have a bone marrow biopsy to see how infiltrated my marrow had become, but after treatment, my blood counts are the best they've been in 15 years.
Neil
Thank you for alerting me to this individual case report in a rather obscure journal. (Indeed, the journal that published this has a ridiculously low tier based on their journal "Impact Score" and "ranking".) Had this diet protocol produced positive results within a clinical trial with thousands of CLL patients on watch and wait (with statistically relevant numbers of patients bearing each of the key prognostic markers in both a control and the experimental group), this would have been published in a high impact journal such as NEJM, Lancet, Nature, Leukemia, blood, etc., etc., etc.It seems a clinical study on how diet impacts on CLL won't be done because it would cost a fortune to do correctly. Can you imagine trying to double-blind such a study? That is, a vegan meal would be pretty obvious to most of us. Perhaps, the protocol could be delivered to us in one of those retreat spas where they serve Michelin starred restaurant quality food to both groups.
I still believe I'm better off for having read this one off study, because it reminds me that there are so many non-drug interventions (that might positively impact disease outcome) that are not studied rigorously... because the cost of doing so is prohibitive.
I recall CLLCanada telling me that a year of exercise induced weight loss had reduced his lymphocyte counts very significantly....now here was a man of incredible scientific intellect telling me about a one-off individual case report, his own! The literature is bereft of high quality research concerning whether diet (alcohol, plant, &/or meat, etc., etc., etc) and/or physical activity (aerobic exercise, yoga, &/or strength training, etc.) can impact one's CLL disease course.
I've run across several articles touching these issues, but no one wants to pay for good research. And IMHO, I don't think the lack of interest is because there is a lack of circumstantial/case-study evidence suggesting a exercise and diet can impact disease progression...I just think there is no money to be made were someone to prove that a vegan diet or several hours of walking a day extends the average CLL "w&w" patient's life in some positive and measurable way...the cattle industry might lose money, but perhaps walking shoe sales would go up?
Maybe we already know this stuff intuitively? I just don't know how you'd fund this kind of research, and I appreciate this crazy individual who had his blood drawn every 6 weeks while keeping a rigorous diet journal...and then published it in an appropriate journal for what it is... a one off case-study. As for the other author's intent, I'm appreciative of Jeff's google research into that aspect of things...always warranted. Finally, I do wish he'd published his cytogenetic results and IGHV mutation status (which I'm sure he has in hand given the amount of extraneous labwork), but only to compare to my own for fun...it won't change the fact that these data can not be extrapolated to anyone else.
I regret having posted that link. I’m new to this forum and also to the condition. Trying to learn by doing some data mining, but I guess most of the stuff everyone already knows and has an opinion about.
With my link, I now feel I have stirred up a hornets nest. I know better now. Will refrain from posting such findings. Sorry for this iteration and I hope the admins pull it down.
I do agree with you that, for economic reasons, a double blind study on diet + exercise + neutraceticals with control and current treatment plans will never be done and we will never know what the facts are. This is when people like me get exited when we see so many “n of 1” reports. I’m guilty of buying the n of 1 book of Glen Sabin as well.
Jackie (if I interpreted correctly) mentioned that about 30% of us never progress and do well with healthy habits. I wish that all of us who are diagnosed with CLL fall into this 30% category. Unfortunately I find it difficult to give up on my beer and single malts, but have drastically cut it down though.
Apologies to all for wasting your precious time.
Please don't regret posting, this isn't a waste of time IMO. It's good to discuss different things, and why people think the way they do. The more discussion we have, the better! "Why do you agree/disagree", "what have been your experiences related to this", etc etc are all wonderful. My definition of an unwanted hornet's nest would be people writing spiteful, nasty things and/or name calling. This is discussion! I think this type of discussion can point out "flaws" in "research studies" so people can make better choices. The graduate School of Public Health at my alma mater had a required course, Introduction to Research Methods, for people getting their Master's. People like myself interested in research also took it (as well as more advanced courses) It taught us how to question "research studies" for fallacies and inconsistencies, and what constitutes decent, valid research compared to those manipulating data to "prove" something. So my objections, at least, are concerning methodology. I, as well as others I am sure, are only trying to point out flaws. There are so many snake oil salesman out there, intentionally pushing something that's bogus, as well as well-meaning but misguided folks (like this person writing this article IMO, I hope). They wanted to "sound scientific" but put it together incorrectly. So we discuss. And are happy that you gave us something to discuss. It's not that a plant based diet may or may not affect one's particular form of CLL, it's that this person is trying to convince based on non-valid methodology.
Nuji, there is no need to apologise for posting the link to this anecdotal case study. It had already been referenced a few days beforehand and look at how much everyone has subsequently learned!
Tortola, thanks for your contributions and for pointing out the importance of exercise. It's something you, Chris and Glenn Sabin all did in common. Chris mentions his regression in the introduction to his profile, where he interestingly omitted mention of dietary changes and the massive weight loss he achieved, which from memory, was 82kg or 180 pounds!
healthunlocked.com/user/Cll...
CLL Regression - 2009 to 2012 drop ALC 136K to 42K EXERCISE!!
Your mention of the "ridiculously low tier base" rating of the journal and the acknowledgement in the case study of the person finding a journal that would publish this case study, also provides an indication of its quality/interest rating.
Chris (CLLCanada) endeavoured to exercise every day. When the weather or his health wasn't conducive to him leaving his apartment, he'd exercise in the apartment car park. Glenn was equally dedicated to exercise and I find it a telling insight into human nature, that far more of us attempt and then accredit dietary changes for any improvements, despite there being far more evidence for exercise improving our outcome than diet when we have cancer.
Nuji, your mention of Glenn Sabin is quite relevant in this context. Glenn was diagnosed with CLL before we had effective treatments. In fact, M D Anderson recommended splenectomies back then to slow progression, based on mouse model research which were subsequently confirmed in human survival statistics. Glenn was one of those who had a splenectomy when his CLL needed treatment, but interestingly doesn't draw attention to that as a possible contributor to his remission, despite the fact that an enlarged spleen is a large contributor to the total CLL burden. Likewise he doesn't draw attention to the fact that he is IGHV mutated and expressed surprise when I informed him of that fact, from my reading of his case study. Of the approximately 30 cases of spontaneous CLL remission I've found reported in medical literature, only 1 person was reported as being IGHV unmutated, with the rest reported as IGHV mutated. So it seems that if you are IGHV mutated, you have around a 2% chance of experiencing spontaneous remission, vs a far, far smaller chance of spontaneous remission if you are IGHV unmutated. (I suspect that the subject of this case study is also IGHV mutated, given their asymptomatic, classical B-CLL Rai stage 0 diagnosis nearly 3 years after his high lymphocyte count was recorded, along with their slow progression rate with a lymphocyte doubling time of 4 years, hence my disappointment that this wasn't disclosed).
Glenn relies on his N of 1 book and case study to bring him paying clients and does not like the use of the term spontaneous remission/regression applied to his case. Interestingly, EGCG gets the credit for his remission in his published case study title, but no effect on lymphocyte count was observed during the 30 weeks of taking EGCG in the case study you referenced.
Neil
Hi Nuji,
Thank you for your post.
I have been getting similar results ( if I compare the lymphocytes count curves) , if not better, for two and a half years now, since I started my new diet.
It is also plant passed definitely not vegan, adding chicken , fish, a bit of diary ( in general higher fat) and excluding refined carbs. Red meat once in a blue moon. Also some tweaks here and there.
And quite a bit of intermittent fasting as well.
I have a suspicion that I can even improve my lymphocyte count further but for now, I am too weak to give up my red wine.
I enjoyed reading this one person’s experience, if you come across something similar but don’t want to post, could you share it with me please?
Thanx Blueish. Good to hear you are doing well.
Have you done your IGHV mutation test? Are you IGHV U or M?
No, haven't done it. Doctor says we'll do it if and when time for treatment comes. But the lymphocytes went up by 30- 40% in two years before I started the new diet, so she reckons I am probably mutated. As soon as I went onto a low carb high fat Mediterranean type / plant manly diet with intermittent fasting the count went down and then stayed down ever since.
I have found this discussion really interesting!
No apologies necessary! I like every report, and just take some with many more grains of salt than others. Wouldn't it be great if you knew that having your drink significantly increased your chance of progression, was irrelevant to your chances of progression, or even reduced your chance of progression in any significant way? I think I'd change my habits for good data...but then again, we only had a 1/20,000 chance of catching CLL, and we beat the odds on that one!
(I actually the head of hematology at a reputable university hospital mention alcohol might even be preventative for some leukemias.) You can find a small study to support this too (here's to saluting the hornets nest): (pubmed.ncbi.nlm.nih.gov/169..., which again has to be taken for what it is: not well controlled, not big enough, not statistically relevant...again look where it is published...another low impact score journal.
I like this paper. It permits me to enjoy my spirits - which I’m doing in moderation anyway (2-4 units/week). 😊
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