Has anybody seen this study before?
It suggests that a "whole food, plant‐based (WFPB) diet intervention" can stabilise or reduce lymphocyte count
ncbi.nlm.nih.gov/pmc/articl...
If anybody has a perspective would be interested to hear.
Study on diet and CLL: Has anybody seen this... - CLL Support
Study on diet and CLL
Written by
Fred_Green
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71 Replies
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My hematologist said don't punish myself with diets & stay away from keto. I eat whatever I want. I was on W&W 12 years. Now celebrating 6 years remission. My Dad had CLL for 30 years & never needed treatment. Ate like he never saw food before. LOL. Lived to 94. I guess moderation is a good idea. But food doesn't change our CLL/NHL. If it did, it would be wonderful.
As G said, food doesn't change CLL. Obviously, good balanced diets are healthy living. However, you won't outlive your diagnosis [unless you are one of those rare spontaneous remissions].
My doctor also told me by my second visit, I'm not going to take anything [I thought vitamins would help] that will make a difference to CLL.
To add further comment, seeing that this conversation has again devolved into diets and reputations of people who publish diet advice, I figure if I reply to myself no one has cause for complaint... [ an internal soliloquy]
Folks, on this metaphorical jet air liner are all flying CLL Airlines. It is making an uncontrolled descent for an unplanned stop (we are crashing).
It seems as if 95% of the passengers are starting to become very concerned about the little packets of peanuts onboard, and just what condition it is going to leave their bodies in, upon post-impact.
Why not buckle up, be ready for an air mask to drop out of the ceiling, and try to relax. While were waiting, does it really matter if you're chewing raw carrots, or bacon wrapped, bacon?
Let me amend that: Does it really matter if the person next to you is choosing to chew raw carrots, or bacon wrapped, bacon?
I think it does matter if diet creates a chance to extend the glide path to a point where a) you might be more at home with the idea of dying, as you have reached a decent age, or b) until better treatments, and potentially cures, become available.
See my first comment.
I'm totally fine with your post Fred of Fred_Green, I only shared my perspective /experience, from your request, "If anybody has a perspective would be interested to hear".
Were good, 🙂✌️
I would be wary of this study. It draws a lot of conclusions based on a single test subject.
One author of the study lists his name as Frans X Plooij. Apparently he was the author of a well known book on raising children called The Wonder Weeks. The book received a lot of criticism for being pseudo science and Plooij got a lot of heat for suppressing the evidence his research assistant had uncovered that contradicted his book’s theories.
I think people should choose the diet they want that balances the need for good nutrition with the need to eat, and enjoy, food with the flavors we like.
I asked my doctor this past week once again if there were any special diets I should follow or supplements I should take. She shook her head no and said just eat healthy and use your common sense.
That said, I think a vegetarian diet could be one type of healthy diet. It’s probably a great diet for people who like vegetables. I have just not seen any convincing evidence, nor a mechanism of action, as to how eating veggies stops cancerous lymphocytes from dividing.
I‘m curious, as a vegan, what do you mean by vegetarian diet? Thanks
Hello Vegan, I’m no expert on any type of diet for sure. I think the simple definition of a vegetarian for an average Joe like me is just someone who doesn’t eat meat and rather eats vegetables and fruits. You would obviously know better, but I think a vegan practices a more strict type of vegetarianism that includes dairy products and eggs and such.
I had dinner with a vegan nephew a few yrs back and I got the impression from him that in addition to health reasons, some vegans abstain from animal products for moral reasons and the mistreatment of animals. I certainly understand that point of view.
Then he ordered clams which confused me. He explained to me that clams are non sentient and therefore ok for his version of veganism. Hmm, I never thought of that and how could be so sure what clams feel? lol
I do think both vegan and vegetarian diets can be healthy for people. I think balanced diets that include meat can be healthy too. And while I do think some diets can lessen the chance of getting certain cancers, I have not seen any credible evidence that diets stop cancer cells from dividing. A healthy diet certainly does help one stay healthy to fight cancer.
It’s interesting to me that among people who believe diet actually treats cancer, some people advocate no meat and some say a keto diet of mostly meat. I personally am hoping a diet of gumbo, jambalaya and crawfish etouffe help with cll.
Sorry for the long, rambling answer. It was an interesting question, I was not sure where you were headed with it. If I ever went vegan, I think it would be more for moral than health reasons. Chicken farms and slaughter houses are not pretty.
Hi. Nice rambling answer. I wasn‘t sure where I was going either. Just that I believe other mammal‘s milk to be detrimental to our immune system and of course enhances osteoporosis. As to your nephew: There is no „version „ if veganism. We just avoid animal products as far as practicable and possible. btw I‘m no diet expert either but read avoiding processed foods and animal products helps one‘s health
Please cite valid scientific link(s) that show "other mammal's milk....of course enhances osteoporosis." Or edit your statement. I am unaware of any "of course it's detrimental to our immune system and enhances osteoporosis."
We can have any opinion we want here, but we can't make factual claims without evidence. So let's see it, please.
I can but assuming I do so will agree to dump dairy?
VEGANFTA, please either show valid links or amend your statement as an "opinion."
I don't know what "I can but assuming I do so will agree to dump dairy" means, and even if I did, it has nothing to do with the requirements of this site.
Please show valid, evidence based links to medical statements you claim are factual, or amend statements to indicate it's "your opinion."
AussieNeilPartnerAdministrator
This paper has been posted about previously. While there is growing evidence that avoiding red meat, particularly preserved meats, reduces the risk of cancer, case studies are down in the lowest level of evidence. You need randomisation* to differentiate whether changes are due to chance or intervention. See the attached :
Observational Studies vs Randomised Clinical Trials
healthunlocked.com/cllsuppo...
Randomised controlled trials—the gold standard for effectiveness research
healthunlocked.com/cllsuppo...
BMI is also recognised as a poor measure of health - a higher BMI can be due to higher fat or muscle content, though in general, in today's society, being overweight is due to carrying too much fat unless you are athletic. There is a possible association between inflammation and cancer, so weight reduction might have slowed CLL activity. The case study patient managed a sustained reduction in body weight of ~10 kilograms or ~22 pounds!
Also of note, with respect to green tea/EGCG, from figure 1 in the case study;
"2.4. Results of trial with EGCG
Lymphocyte and leukocyte counts were not affected by the 7‐month trial with EGCG; they continued to follow the exponential growth curve fitted through the first five leukocyte counts (Figure 1, broken line). So, the antioxidant EGCG appeared not beneficial."
And from figure 1
"The epigallocatechin gallate (EGCG) therapy (pink box) had no effect whatsoever"
I'd say that the major message of this case study, is that improving your health by getting your body to a healthy weight zone through diet and exercise is worth the effort, healthunlocked.com/cllsuppo...
I've also attached plots of WBC/ALC in CLL, showing that growth reversals do occur spontaneously.
Neil
WBC/ALC growth can naturally reverse in some cases
The biggest omission in the said paper is that there is no mention of what flavour of CLL the subject had. I suspect the outcome would have been quite different if he was IGVH unmutated or there was involvement with either chromosome 11 or 17.
I for one am happy with a whole food plant based diet. It has served me well for many decades. But I cannot say whether it has affected my CLL in any way. I remain without symptoms or treatment for 18 years since diagnosis, but I refrain from being 'sciencey' about the fact. Also I got the good mutations. (Ah - I hear the Beach Boys - I'm living with the good mutations...........good, good, good, good mutations..........
the only time I changed my diet was during treatment, during bouts of neutropenia & bouts of type two diabetes after steroid treatments - I like food and a wide range - so I found any limitation a pain in the arse & a double whammy. Like everyone else has said, moderation is always a good idea - stick to healthier eating habits which will improve your sense of well-being anyway.
Note how it uses the word "may" everywhere. That's hard to argue with. The mention of Campbell put me on high alert. That guy pushes veganism. His China Study has been ripped apart by Denise Minger in "Death by Food Pyramide"
deniseminger.com/the-china-...
"This finding suggests a possible link between food and CLL/SLL, because the BMI has everything to do with eating behavior: while excessive eating and drinking of a typical American diet results in a high BMI, the eating of unprocessed, plant‐based food goes together with a substantially lower body weight and BMI. "
This is a very superficial statement that only scratches the surface. While it is likely true that eating solely unprocessed plant based foods is better than eating the SAD, it leads to nutrient deficiencies, weights loss and malnourishment. Think twice before you try it. Just check out all the ex vegan testimonials about how it ruined their health. Veganism for reasons of religion or animal welfare concerns - ok, I get it. Not arguing with those people, wishing them all the best. My own welfare comes first though, before that of animals. The most nutrient dense healthy diet is meat based, with perhaps some veggies thrown in for variety's sake. That's what my 12 years of studying this subject told me . Check out my posts for more.
Edit: Just for fun. Where do gorillas get their B6 vitamin?
youtube.com/shorts/qXZa6GBfL98
I‘ve never seen an ex vegan testimonial. Be really interesting. Any sources?
Loads of them on YouTube.
Seen quite few. None of them were actually vegan. Just playing with different diets, quite often social media influencers.
Look again. Lots of them. One of many:
youtube.com/watch?v=JX0n_Hg...
The comments are a good read too.
not a lot of vegetarian stuff out there? Potatoes grasses beans fruit nuts salad. Gmafb
unbelievable. That means bullshit
Please keep the obscenities off the site VEGANFTA (even the disguised ones). Some social media sites have lower standards of language and debate but we don’t encourage it on here.
Thanks,
Newdawn
Of course it's not a diet. For some it is a religion. Good luck if that's you. The vid I shared is a random pick. There are hundreds like that if you care to look. But I guess you don't.
Hi Fred,
I am someone who has “unfavorable” markers. I had a tremendous amount of inflammation and opted (Not for CLL) to follow a mostly plant based diet and that in conjunction with exercise has helped tremendously. However, it did nothing to stabilize nor reduce my numbers BUT I do feel amazing.
Best,
Sandy
Fred_Green -
This paper is an N of 1 study, if it is a study at all, plus a review of possible mechanisms. It weighs heavily on theories or hyptheses from a book, The Campbell Plan: The Simple Way to Lose Weight and Reverse Illness, Using The China Study's Whole-Food, Plant-Based Diet. One of the authors of that book reviewed the paper.
The China Study is not something I can find by that name on PubMed. But WikiPedia has an article on it:
en.wikipedia.org/wiki/The_C...
The main reference is T. Colin Campbell's own web site:
nutritionstudies.org/the-ch...
I think the original paper referenced in the original post was a way to drum up support for what is essectiall Campbell's business plan, which includes sell his book and courses. Many such web sites exist, especially for nutrition, and use testimonials rather than actual evidence across multiple patients. i.e. they only disclose successes, and not failures.
That said, I do think such a diet can be beneficial, even if it only briefly helped the one person mentioned. I suspect that CLL scientists have not pursued the strategy because of the lack of evidence across multiple patients.
=seymour=
Forgive me, but could you perhaps owe Dr. Campbell an apology for the way you represent his long life in science and his many contributions to the science of nutrition and health? I don't think everything, or possibly even anything, he did was in service to his "business plan". Here is his CV:
s3.us-east-2.amazonaws.com/...
T Colin Campbell has founded the T. Colin Campbell Center for Nutrition Studies (CNS) nonprofit organisation with laudable aims, including "Promoting optimal nutrition through science-based education and advocacy". Per the Brave AI generated answer below.
° It is essential to note that scientific debates and criticisms are a natural part of the research process.
Brave AI-generated answer for "T. colin campbell criticism", Please verify critical facts.
T. Colin Campbell, a renowned nutritionist and author of “The China Study”, has faced criticism from various quarters. Some of the key criticisms include:
° Methodological flaws: Critics argue that Campbell’s research had several methodological flaws, such as:
- Misleading data presentation
- Statistical inconsistencies
- Questionable leaps in logic
° Casein-cancer connection: Campbell’s findings on the connection between casein (a milk protein) and cancer have been disputed. Some argue that the correlation was overstated or based on flawed experiments.
° Lack of control groups: The China Study’s design did not include control groups, making it difficult to isolate the effects of specific dietary factors.
Inconsistent application of statistical analysis:
Critics claim that Campbell’s statistical analysis was inconsistent and failed to account for confounding variables.
° Overemphasis on correlations: Campbell’s work has been criticized for overemphasizing correlations between dietary factors and disease outcomes, without adequately controlling for other factors that may influence the results.
° Biased interpretation: Some argue that Campbell’s conclusions were biased towards promoting a plant-based diet and demonizing animal-based foods, rather than presenting a balanced view of the data.
Specific criticisms:
° Denise Minger’s critique (2010) pointed out several methodological flaws and questioned the validity of Campbell’s findings.
° A 2020 article, “What ‘The China Study’ Gets Wrong About Vegan Diets”, argued that Campbell’s research had fatal flaws and that veganism looked better than it actually is due to these errors.
° A 2022 article, “3 China Study Criticisms: Are They Accurate?”, summarized the criticisms and Campbell’s responses, highlighting the controversy surrounding the study.
Campbell’s responses:
Campbell has defended his research methodology and findings, arguing that his conclusions were based on rigorous scientific analysis and that his critics have misinterpreted or misrepresented his work.
° He has also acknowledged some limitations and flaws in his research, but maintains that the overall findings and implications remain valid.
° It is essential to note that scientific debates and criticisms are a natural part of the research process.
While Campbell’s work has been subject to criticism, it remains a widely cited and influential study in the field of nutrition and public health.
What is this? An ai bot based criticism search result? Really? I'm surprised you would post this. I wonder--did you open the CV file link and peruse the pages and pages listing Dr. Campbell's research papers and notice his years and years of study on the impact of diet and foods on health and disease? This is a great man. His book is one of the first books I read when I was starting out on this path trying to get well when I was told I would be very sick soon. It is worth reading.
Great men are not infallible and great scientists in particular appreciate the value of the iterative approach of science, welcoming constructive criticism that moves us closer to unravelling the complexity of optimal human nutrition. Observational studies have their difficulties and it is my personal observation that there is no one standard optimum diet for everyone. That said, you only need to observe how well people look at grocery checkouts and compare this with their food purchases to appreciate that many people don't appreciate the influence of their diet on their health.Dr Campbell having established his center for nutritional studies, it is entirely appropriate that he has and regularly reviews his business plan to support his charity. That responsibility does come with it the potential for bias and we need to be aware of that. I haven't read his book or reviewed his CV, but as the AI generated answer concluded "While Campbell’s work has been subject to criticism, it remains a widely cited and influential study in the field of nutrition and public health."
Neil
Just click on the link I included, it will take you 5 seconds, or do your own AI search for his publications and positions if you prefer. Then maybe you'll see why even looking into the book could be a worthwhile endeavor. Or do an AI search that isn't skewed to find problems. Why not search for his honors, awards, and achievements? Be sure to let us all know what you learn!
As I noted, I specifically requested an AI search for "T. colin campbell criticism", which will skew the results. Nutritional science can only develop by further investigation into these areas of criticism by Dr Campbell's Center for Nutrition Studies and others working in this very important field.
mdsp7 -
I was indeed harsh, lumping him in with much less scientific entrepreneurs posing as philanthropists while hawking books and vitamins. I apologize.
His C.V. doesn't identify any earth shaking research in Nutrition that I can see. What am I missing? Has he identified some key principal that is now accepted in the textbooks?
His major research work happened before the 1990s. It appears that his move to China in the late 1980s heralded a major change in focus from laboratory based research to epidemiological studies of the Chinese population. Population studies are notorious in having built-in confounding based on genetics and culture. But he continued laboratory research on liver cancer, in particular.
=seymour=
I appreciate what you wrote. And I think Campbell's publication record is impressive. He published more than 90 research papers on aflatoxin, for example, starting back in the 1960s. It is now a familiar word and we all know we should avoid it.
Does research have to be "earth shaking" to lead us in the right direction? Researchers build on each other's results. As my physicist husband likes to point out, often the credit for a scientific discovery goes to "the last person to discover it".
I believe I have been helped by reading T. Colin Campbell's book The China Study, as well as many other books which refer to work he has done. People turn to dietary advice from their doctors but I wonder how many courses on diet are taught in medical schools? Riding up and down the elevator in a medical building alongside medical professionals carrying fast food lunches I would think it is not a huge part of the curriculum.
mdsp7 -
I agree completely that nutrition is ignored in medical schools. In part, it's because nurtition is about chronic illness, and medicine is largely focused on acute illness. But it's also because nutriotion research is notoriously difficult to perform and conclusions are often not justified based on confounding factors. Past efforts to use nutritional evidence to change behavior have led to odd recommendations, such as reducing egg consumption to reduce cholesterol, that have led many people to assume that what goes into the mouth directly affects what's found in the blood.
Nevertheless, I think more attention to having patients log their food, plus testing for nutrition related molecules can identify a few that can benefit from supplementation, and many that can benefit from dietary change over time. Plus testing may identify a few patients who may be self-treating through food and herbs and harming themselves by pursuing fads that are based on the mistaken assumption that food based intervention is inherently harmless.
=seymour=
Everyone’s nutrition needs are different. What works for one person may not work for another. 😊
Bio-Individuality
The vegan diet tried in this study was low in lipids. CLL lymphocytes multiply in a low-oxygen part of the body where lipids are required for anaerobic respiration, so I've been trying to keep the amount of fat that I eat low.
the link doesn’t work. I’ve been on a carnivore diet and numbers are looking a bit better so I’m very interested in reading this article. Do you have the name of the article so I can look it up on PubMed?
Moniefx here's a different link to same article: onlinelibrary.wiley.com/doi...
Hi, Fred, I was diagnosed on 2001 and when I asked I was told there was nothing I could do. Food or exercise changes made no difference. 23 years later l dont think anything has helped.So many people have tried. Its hard not to exclude food and end up with problems with their blood or Osteoporosis. Its sad excluding foods to no avail. Anne uk
At least you tried adjusting your diet! I'm sorry you were not able to find changes that helped you. It's really a hard thing to do! At least you tried!! I suspect that a lot of the people who write in and claim diet makes no difference haven't tried changing what they eat, just to see. Because it is hard! And tasty food is a comfort. You tried! It's sad that it didn't work for you. I hope you will find some way to feel good soon and be well again.
One of the things that is influencing my thinking on this - and I know I'm probably still in denial - is that it was only about 15 years ago that it started to be recognised that Type 2 diabetes could be reversed by losing weight. And the population with Type 2 diabetes is huge compared to CLL patients. So I'd guess there is a lot that nobody has yet discovered.
Type II diabetes isn't caused by cancer - the end result of irreversible DNA damage
AussieNeil I was thinking more of diabetes as an independent condition where there was an assumptoin it could not be cured, and in fact it can be, fairly easily in many cases, by losing weight.
However Fred, it’s not always as clear cut as that with diabetes. Basically, as long as I've taken an interest in it (for well over a decade), statistics show that 20% of Type 2s are not overweight at diagnosis. This is the main point really, apparently 60% of the population are overweight or obese, yet only 7% are diabetic, so whilst weight is a significant risk factor it does not mean that an overweight person will be diabetic however much they weigh.
I write on a diabetic forum too and we still have newly diagnosed underweight type 2 diabetics asking how they can maintain their weight on diets intended to reduce it.
I’d never deny that obesity cannot contribute significantly to the development of diabetes but pancreatic damage and a host of other issues can also induce it. I discovered that CLL meds gave my diabetic control a mind of its own regardless of every effort on my part. It’s not always the simple calculation people like to use to shame overweight people who develop diabetes.
Newdawn
Thanks Newdawn , I'm not making any judgements on causes of Type 2 Diabetes or behaviours related to it. I'm using it it instead as an example of a common, serious condition, which the medical profession thought for decades was not reversible, and it turns out in quite a high proportion of cases, it is. My thought is perhaps there are things around diet, similarly, that might help with CLL. I certainly feel better when I don't eat refined carbs and when my weight is lower (I was previously obese, and now merely overweight) and that influences my thinking to a degree.
I experienced the same drop in cell count when I embarked on a strict whole food plant based diet. My CLL is almost in remission now. After 16 years I do eat more normally but still, more or less carefully. Lots of vegetables and fruits, variety, filtered water, grass fed dairy and meats, but not a lot, few refined grains, red wine if I drink, Japanese sencha green tea galore in the morning and something with turmeric often in the evening meal. I have had the same oncologist since being given a "poor prognosis" at age 49. I am almost well now, without treatment. Unmutated. The data is in my doctor's files. We just haven't published it.
Interesting article, but a single case does not mean anything. And is it meat, or processed foods? Or something else like markers / chance?!
I went vegan about 5 years ago (my daughter tipped me over the edge - diet in paper makes mine look very unplanned / amateurish!), not for health reasons but for environmental /animal welfare/ feeding population reasons. My weight has not really changed (BMI around 25 anyway): I do feel good (I tried plant-based in 1980's, but it was too hard to find foods / recipes - much easier now with loads of easy tasty recipes on internet)
My lymphocytes have kept steadily decreasing, so much so that they are currently back within the normal range (I have no idea what my markers are, but 10 years ago lymphocytes were getting worse). Is it diet? Or is it linked to my splenectomy 10 years ago which unexpectedly stabilised lymphocytes and also eventually started the decrease? (more importantly, following splenectomy AIHA stopped and red are stable too to date).
Who knows, but I am thankful! And there is life on the plant side!
Splenectomies were done by M D Anderson to slow CLL progression back in the 90s, after mouse model studies proved its effectiveness. Glenn Sabin famously had one.
Neil
Thanks Neil. Never heard of Glenn before, but he looks like an interesting wacky chap! Interesting he had splenectomy to purely reduce lymphocyte burden (and his spleen was a baby compared to what they got out of me!). As you know, mine was purely to stop AIHA (as steroids failed): perhaps I have had an unexpected bonus. All my consultations now are remote with a clinical nurse, but if I do ever see my consultant I will ask questions.
I always thought if I was ever diagnosed with cancer I would only eat a clean diet. I had always heard that suger feeds a tumor. My onc said that it doesn’t affect CLL I don’t drive myself crazy but I eat mostly a vegetarian diet but I do treat myself to some deserts and I’m 75 so I feel like I deserve a treat. Most hospitals have a dietitian you can speak to
i will check out the study but the concern i have with plant based diets is the lack of nutrients. many vegans and vegetarians have vitamin and mineral deficiencies. the only thing my oncologist told me was to avoid sugar and processed food. i am a big ice cream person (ice cream = crack/meth...haha) with that said he told me that i could have it but just to cut back. but as far as any other foods, whole foods he didn't give me any limitations. i think it goes back to the everything in moderation saying. i do try to keep a healthy diet but with a full time job, a lot of time on the road it gets difficult so i just do my best. i do exercise regularly so before CLL keeping a moderately healthy diet and regular exercise has been enough to keep me out of harms way for the past 54 years (now the legal info....i am not a dr, please check all info with your dr first...haha)
There was a research study in san diego looking at CLL and a plant based diet. I tried to enroll but wasn't eligible as I have been a vegetarian for 30 years. The study was for people on W&W and involved blood draws, nutrition counseling, cooking classes and basic physical measurements (weight etc). Knowing what I have learned on this site about variations in ALC in the early stages and genetics I am not sure how the study can reach a reliable conclusion.
It would have to hold for genetic marker profiles, at a minimum. Being a US study, that would be possible, since genetic testing is done at diagnosis here.
It would also have to hold for age, initial disease staging, other lifestyle factors, other changes made, etc.
As for this study, as an N=1, it becomes more "interesting reading" and possible "experiment as another n=1" vs a guiding principle all should follow.
Since getting a seven stomach hepsectoplasty, (aka: dairy cow mod) I am on a 100% grass diet and my CLL has never been better.
Are you putting us on? 100% grass?
The book N of 1 by Glenn Sabin documents diet helping with CLL. Also, I personally know someone who went on a raw food vegan diet and brought her white in half and was able to avoid treatment for another year and a half.
I know these are not randomized clinical trials
With that said, the drugs are much stronger than diet when strong treatment is needed.
Eating well is very important whether you have CLL or not, high levels of sugar and obesity are becoming an epidemic and causing huge metabolic problems
Be well,
Hoffy
I've been in watch and wait for 19 years. I have been eating a whole foods plant based diet for about 15 years. Recently, I have added back occasional fish, poultry and eggs - due to GI issues that preclude me from eating legumes. In the earlier years of my CLL it seemed that the more broccoli I ate the lower my numbers went or stayed. (I ate a bowl of broccoli every day. Lucky for me I love broccoli!) I can't eat as much broccoli now due to those pesky GI issues. My numbers are slowly going up- but of course that's to be expected. I have borderline high cholesterol and the WFPB diet works for me. I prefer not to eat animals. I think we all need to do what works best for us personally as we attempt to live a healthy lifestyle that includes the food we eat, exercise and sleep. Thanks for sharing the article.
Just a heads up. This is not the site to speak about diet or nutrition (see the number of years it took for them to begrudgingly admit that a higher Vitamin D levels correlated with longer time to trial). This is good site if you want to LOYO until conventional treatment and then prioritize options. But that said, there are other balanced sites about non-pharmacological interventions during your W&W....
When you wrote: "This is not the site to speak about diet or nutrition."
Did you mean: When some people write about a possibly healthful diet other people will chime in negatively, and try to deter you from thinking it could help.
(This happens to me often, and it is discouraging.)
Or did you mean: We aren't supposed to talk about diet on this website.
I would be interested in knowing about the sites you go to that are friendlier to those of us who believe that what we eat and don't eat matters to CLL patients.
Spike, I note that you joined just 18 months ago. Anyone considering the recommendations from our pinned post Original Coping strategies for Living with CLL - Part 1, (written back in 2015 by PaulaS healthunlocked.com/cllsuppo... ), or subsequent updates, would have read and hopefully benefited from slowing their CLL progression by optimising their vitamin D levels! With my emphasis from that post of nearly 10 years ago;
* Get blood tests for VIT B AND VIT D. Low levels of these are surprisingly common, and can usually be rectified with supplements. Boosting them into normal levels can make a lot of difference to fatigue (though some people cannot absorb Vit B12 orally and it needs to be via injections.) Vitamin D may possibly slow the progression of CLL.
There are nearly 700 posts concerning vitamin D and CLL progression healthunlocked.com/cllsuppo...
Way, way back in 2014, Chris Dwyer, CLL Cure Hero/CLLCanada reported that "There is a major study at the Mayo currently on augmentation of Cholecalciferol, VitD3, levels in a wide range of cancer, and CLL and SLL are specifically being studied. The trial will run 3 years." healthunlocked.com/cllsuppo...
Neil
Well that's painting things black and white don't you think? I feel many have expressed that diets are very flexible as to each person does what they think works for them.
I do think that when people start giving testimonials on dietary advice, or promoting someone who is making money by guiding people to follow the pied piper, it is ethical to encourage those curious to take it up with their personal physician and refer a nutritionist experienced in advising cancer patients.
Hello. My name is Burt. Although, I don’t post much, I lurk. Allow me to weigh in on this topic. I was diagnosed with CLL back in November of ‘22. My white blood cell count (WBC) was 23,000 while my Absolute Lymphocyte count (ALC) was 19,000. I had several blood test before the end of the year and they were consistent. I decided to go on a strict diet (will elaborate later) on the 1st of January, ‘23. Over a period of monthly testing for 4 months, my counts gradually dropped. On May 8th, my WBC was down to 10,800 and my ALC had dropped to 7,600. Then, I went away for 2 weeks and went off my diet. When I returned, I continued to eat crap. By crap, I mean lots of ultra-processed foods. Breads, sugars, seed oils. Before I knew it, 4 months had gone by….lol. I had a blood test on October 8th and my WBC had increased to 39,000…..by far my highest ever. My ALC had also increased to 34,000. Also, by far my highest ever. Scared the shit outta me. I went back on the strict version of my diet for a month and my numbers dropped. WBC=25,000. ALC=22,000. Since then, I’ve been on a moderate diet with some periods of cheating. And my numbers are holding in the low to mid 20’s. I have been fortunate to not have any symptoms yet (lymph nodes, spleen, night sweats, etc.). So….about the diet. Basically, no sugars of any kind, no bread or grains, and no foods with seed oils. I eat mostly salads and vegetables with either Steak, Salmon, European cheeses, chicken, grass fed beef liver or raw nuts. I also water fast on Mondays and do all of my eating between 9am-3pm. No snacking. When I am on this diet, I have the benefit of no aches or pains anywhere. Feet, ankles, back, hips, arms, joints, teeth. Just nothing bothers me……and I’m 71. So……I’m not going to draw any conclusions yet but my ups and downs seem to correlate to which diet that I am on. Strict, moderate, or just plain bad.
So…..I am back on the strict version of my diet at the moment. Mostly because of the way it makes me feel. I wasn’t really surprised when I was diagnosed with leukemia as it runs on my father’s side of the family. He lasted 2 years……but he was a full blown diabetic and could never quit sweets. Anyway, I hope I didn’t bore the shit out y’all.
My first CLL specialist had a patient who drank whiskey everyday. If he stopped for 30 days, his ALC popped up. If he drank whiskey everyday, it went back down. He and the CLL specialist tested the whiskey/no whiskey five or six times.
I tried it. Whiskey did not help my ALC stop going up or to come down. Enjoyed the whiskey though 😊
hi Fred. I am already on a plant diet, over 10 years, but haven’t obstained from alcohol or processed stuff. My diagnosis last week was due to a search for an immune problem and Dr reckons the CLL has been around for several years. That said, the study is clearly 1 person but shows interesting results. I can’t see any reason not to adopt a similar diet. It’s basically healthier anyway. My next blood check is planned for Feb. Be interesting to see the results which I‘ll be happy to share
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