I'm totally new here. Have 1st radiology on Tuesday (12 Nov) As a vegan I am very intersted in the effects of our diet and would like to gain experince from others who avoid animal products. I searched but didn't find much. Any guidence woud be appreciated.
whole food plant based advice: I'm totally new... - CLL Support
whole food plant based advice
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VEGANFTA
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CLL is not directly effected by food/diet.
That’s what I thought but I saw a lot of exchanges about carbs. Are there indirect effects?
There is a study showing that CLL feeds on lipids, but there's a catch. The problem with theorizing based on the amount of carb you put in your mouth is that if you proportionally eat a lot of carbs, your triglycerides increase. Triglycerides are lipids. Eating more carbs still feeds CLL.
I'll add that what happens inside the body is more complicated. I do not believe that the study cited was done in vivo.
If you want, you can monitor your lipids including triglycerides and adjust diet, but this seems folly to me beyond eating so that you comprehensively get the needed calories and nutrients to be healthy whether vegan, omnivore or whatever ideology suits you.
Just FWIW, I don't believe that diet/food has no effect. I believe we are what we eat in many respects and that as long as we're kicking, food/diet can have an effect, whether minuscule or major. Deficiency in vitamin D, e.g., I believe has been shown to likely affect Cll progression speed.
Not only that, a recent study suggested that supplementing with vitamin D slows progression in CLL cllsociety.org/2024/10/vita... - posted here by Edalv six days ago.
Maybe true, but I know a healthy diet for me improves quality of life which is so important, maybe the most important thing!
I eat lots of carbs, red meat, soda & sugar. No effect for me. Have had CLL 18 years. 6 years remission. My Dad had it 30 years, no treatment & ate buffets constantly. My hematologist said no fad diets, moderation, enjoy life.
Great news. I’d of thought your reported food would generally unhealthy. Dunno what a fad diet has to do with it though. Strange comment from a health professional.
Vegan, we have had over the years a number of members claim that this or that diet treats their cll. Some people advocate more meat based diets like keto. The evidence is always mostly anecdotal and I do not think I have seen someone on a special diet on here that was prescribed and supervised by a cll specialist.
That said, virtually every cll specialist encourages people with cll to eat a healthy diet. That is true for everyone. If you did a study of 10000 people with cll who ate healthy and compared them to a control group of 10000 people with cll who did not eat healthy food, I feel confident the eat healthy group will have better survival stats ten years out. I dont know if thats what you mean by indirect effects. I think healthy eating is proven to help any group. A large group of diabetics who eat healthy will outlive a large group who does not.
Cll prognosis is much more driven by genetics than diet, however, so be wary of anecdotal stories. It is common on here for someone to report, for example, that their labs are good and attribute that to a keto diet, vegan diet or to fasting. If one has genetically indolent cll, however, he may have great labs on a diet of hamburgers and fries While I know such a study would never be done, If you compared a group of 10000 people with 17p cll who ate healthy with a group of 13q cll who ate fried chicken and washed it down with beer, the 13 q group, on average, would almost certainly have superior survival stats. But the 17p group should still eat healthy, as they will very probably, on average, live longer than a 17 p person who eats a poor diet.
I dont know if that addresses your question. While you will certainly hear some folks claim that diet treated their cll, I have yet to see any science to support such a claim that our cll specialists will consider persuasive. I have asked all of my docs about diet and they all answer the same, eating healthy will help me stay strong to fight my cll, but none has suggested a particular diet.
Many people will argue doctors do not know everything and could be wrong. Thats certainly true. But one can use that argument to ignore all medical advice. And then there is the group that will argue that our doctors conspire with pharma companies to deny us cheaper and more natural remedies. I suppose that could be true too, but I personally think my docs care about me and are not part of a secret cabal of Cll specialists worldwide conspiring against me.
Now what constitutes a healthy diet and which diet is better than the other? Thats probably better asked to a nutritionist than a Cll doctor, or random folks on a message board. Most all major cancer centers have nutritionists. But nutritionists can be wrong too, or part of the conspiracy I guess. Some people would still rather rely on nutrition advice by people who write books about how they cured their cancer with diet. While I am skeptical of most all such books, I 100% support someone’s right to choose who they believe and who they do not. And in their right to choose what food and medicine they take, or not take.
Good luck with your diet plan. As you and I discussed once, I would think a vegan diet is one type of diet that can be a healthy choice if it includes other sources of protein than meat. I lack the self discipline for such a diet. I suppose it would be a very easy diet for people who just don’t like meat as opposed to those who just eat veggies, but still crave meat. I personally enjoy meat too much to give it up. My daughter has a vegan friend who has gone out to eat with us a few times. I get the sense from her that she just does not like meat, that must make that vegan choice easy for her.
Hey Veganfta, what led to your vegan choice, if you do not mind me asking? Do you crave meat from time to time, or do you just prefer veggies? Or did you used to like meat, but lost the taste for it after going vegan? Or have you always been vegan? I’m just curious. I do not think I could give up meat. I personally have not tried to, as I think meat can be a healthy choice. But I do think I probably benefit from eating more veggies and less meat.
...FTA - I've done a massive amount of research on cancer metabolism over the last several year, as, in addition to CLL, I also have metastatic prostate cancer. Since, at least with regard to solid tumors, most cancers will eventually get what they need by hacking metabolism to provide it, the notion that we can defeat cancer by diet alone is, in most instances, an impossible task. However, with respect to diet, I am a firm believer that our gut biome is key to a healthy immune function and the tight junctions needed to prevent the systemic inflammation caused by a "leaky gut".
As fiber is THE essential ingredient in feeding the short-chain fatty acids that are crucial for gastrointestinal health, I have distilled the main goals of a healthy diet, regardless of the specifics, to be:
1. Get AT LEAST the minimum amount of fiber in your daily diet. For men that is ~ 35 grams and for women ~ 28 grams. More is always better than less and around 95% of the American population is not getting close to those minimum RDA amounts.. (As a benefit for those 'counting carbs', you can deduct the fiber grams from the carb grams to get a net carb count.)
2. Eat as little processed food, (esp. when ULTRA-processed); i.e. eat the whole plant vs some refined product that might include some extracted components of it. (Along with a whole slew of flavor additives, oils, sweeteners, salt, thickeners, preservatives . . . well, you get the idea. All you have to do is look at the labels to see the massive number of additives that processed food usually contains.)
3. Shoot for eating 30 different plants every week. With the large food selection available in most full-service groceries and the large number of ethnic restaurants and specialty grocers, there is little reason for not hitting that target. It will make your diet more diverse and you palette and gut health will thank you for it.
These 3 goals, IMO, work regardless of the specific "diet" one thinks is best, and since meat and dairy have zero (yes, zero) amounts of fiber, that will require the consumption of copious amounts of "unrefined" whole grains, vegetables, and fruit. The net result is that meat and dairy will be a reduced share of your diet and fiber-rich foods much greater.
To a very large extent, we really are what we eat . . . So eat well to be/stay well,
Good Luck and Good Health to You. Ciao - Captain cujoe
PS. Michael Pollan's subtitle to his excellent book, In Defense of Food: An Eater's Manifesto" is similarly simple and speaks to same points made above; i.e., "Eat Food. Not Too Much. Mostly Plants." He also published a short volume titled Food Rules. Those can be found here:
travishellstrom.com/advance...
Did you know that you can ingest short chain fatty acids directly and thus you don't need to rely on bacteria to break down fiber to produce it for you? I'm on a zero carb diet which is also zero fiber. Though the SCFA s get easily converted into ketones in the liver, which is their main advantage, I already have plenty of those because I'm in nutritional ketosis already. So, fiber may be important for people who are not in nutritional ketosis, but I doubt that too. What's good about plant matter rotting in the colon in an anaerobic environment? One has to enjoy those smelly farts for sure 😃. Fiber makes me bloated and to feel miserable. So that's my anecdotal 5 c. Plus I know for sure that many vegans have their colons in much worse shape than I have mine.
Leo - I don't imagine our digestive system evolved in the way you describe. However, everyone is free to decide what sort of diet they think is best suited to their health and lifestyle goals. I'm pretty sure any expert focused on the microbiome would say that the whole purpose of the fiber-rich food is way more complex that just producing SCFAs and that the "plant matter rotting in the colon in an anaerobic environment" is an essential element in supporting our general health and, most importantly, a robust immune system.
In my case, I tend to hang my dietary hat where populations live the longest, are healthiest, and seem to be the happiest as well. In all the Blue Zones where those conditions have been shown to be common, their diets include lots of unrefined, whole grains. (along with lots of veggies and fish - and limited amounts of meats and dairy.)
As always, Stay Safe & Be Well, Ciao - Capt'n cujoe
PS I don't know how you would know that your colon is in better shape than the "many vegans" you speak of . . . and probably don't really want to know. 🙈🙉🙊
Hi Cujoe, blue zones are a fad, I wrote a post about it. It's all hot air. There has never been a vegan population anywhere on planet Earth during human history. Because the vegan diet is deficient in many essential nutrients. But there were many populations that ate next to no plant matter. The Eskimo, the Maasai and the North American Indians that did not engage in agricultural practices, just to name a few. The colon stuff is easy. I had a colonoscopy last year. Apart from two polyps that were removed my colon is in perfect shape. No Crohn's, no SIBO, no IBS, no diverticulitis no diverticulosis. Just beautiful pink slimy healthy colon walls. I saw it on a big screen TV watching the procedure 😃. And my digestion is as perfect as they get. No GERD, no stomach acid up the esophagus ,no burping,no farts,no distended wheat belly. Grade 4 stools on the Bristol scale.
webmd.com/digestive-disorde...
That counts for something, LOL. Best to you too!
Leo - I'm not interested in getting into a debate about one dietary profile (yours) vs any other. (Note that I have specifically avoiding describing mine other than the three general characteristics I think guide one towards what most dietary scientist would agree is a positive "direction".)
As for the Blue Zones, while some are predominantly onmiviorous, some vegetarian, and some pescatrian, none of the Blue Zones are vegan. No doubt throughout history humans have been very adaptive to the food supplies of their local region. One could argue that their genetic and epigenetic response to those locales have been (or are in the process of being) completely disrupted by the relatively recent abundance of food available from distant cultures and geographic regions; often massively processed to make them last longer on the shelf, grow faster or more uniformly, look better, taste better, etc., etc. Will we adapt to those changes in the short run? That is the experiment we are all participating in at present - willingly or not.
In the end, diet and lifestyles, like our cancers, are to some degree or another, unique to each of us. What works for better health outcomes in each case may also be unique to each of us. Finding the perfect match is a lifelong goal for each of us. Your enthusiasm seem to indicate that you have found yours and I congratulate you for apparently doing your homework to do that. Just take note that what works for you may not work for others. And that will be all I have to say on this topic in this post.
Be/Stay Well - Regards - cujoe
Cujoe and Cajunjeff are spot on with their comments. I was diagnosed with CLL in 2009, got FCR treatment in 2015 and kinda, sorta of in remission although my last two 6 month WBCs are at 14,000 ML so a little over the norm and technically not remission, but I would like to think it's still way under control. My Wife is a vegan (used to be pescatarian, then vegetarian) and my sister-in-law has been Vegan since like 1993. We used to think my wonderful sister-in-law was crazy but she is now main-stream in her thinking. A certified practitioner in nutrition and eating and living a healthy lifestyle, she has written cookbooks, does webinars, seminars, consults with doctors and other healthcare professionals, and has a stable of clients that are trying to lose weight or deal with various food allergies, or other ailments. You get the picture. Offered to cure my CLL (well intentioned) if I would only follow her approach on dieting. That said, what Cujoe stated is really the heart (no pun intended) of the matter. Eating lots of animal-based products and ultra-processed foods is not good for us healthwise, the planet (major contributor to climate change), our oceans, and many other reasons. (By the way, I am not vegan or vegetarian and do eat some but limited animal products especially fish). Eating more and more plants, grains, veggies, fruits etc needs to be part of our diet. My wife often hears that you can't get enough protein in your vegan diet. This is not true and while you need to work at it a little more our bodies only need around 50g protein a day. Nuts, beans, whole grains, cheese and eggs (if you are a vegetarian) are good enough to get that protein and 9 essential amino acids your body should have daily. By the way where do you think cows get their protein from? (It's not other animals). Animal products while they may taste good, are high in saturated fat. Those bbq ribs are absolutely delicious and good but also the BBQ sauce is loaded with sugar on top of it. Avoid foods that have a lot of sugar as diabetes and obesity is not a good combination for CLL. As I said, I love fish and certain oily fish like Salmon, Mackerel, herring have omega 3 oils which are very healthy but not all fish come from good locations or are farmed. My point is that a diet of whatever nature is not going to make the CLL go away. "30 Plants a week" is a great start. See if you can do it (there is a web site that promotes this) and avoiding Ultra High Processed food. Read those labels in the grocery store to eliminate added sugars and get regular exercise.
Too many incorrect statements. Veganism is way worse for the planet than eating meat from regenerative farmers.
Only from what I could find, regenerative farming is mainly practiced by around 8% of farmers overall, with perhaps upwards of 25% of small farms using the practice. Even if your statement "Veganism is way worse for the planet than eating meat from regenerative farmers" was true (it's a contentious topic), that's not currently the case. Far from it!
Neil
True. It's regenerative farming that needs to be pushed, Not enough of it. Conventional farming destroys biodiversity , depletes the soil and once you count in all the damage the fossil fuel industry does to the environment, during its production, transportation, its pollution, the big ticket farming machinery production, the fertilizer production due to soil depletion etc, combined with the low caloric and nutritional value of its products, it's crystal clear that we are in a terrible mess. Conventional farming and plant production is destroying the planet.
What I think is being missed here is iron levels. I have been anaemic on at least two occasions since being diagnosed 6 years ago. I was actually told to eat liver three times a week by my consultant. My wife eats to the same diet as me and has never been remotely anaemic which suggest that my CLL is the problem. I cannot imagine how I would find sufficient iron in plants. She gives me most of the meat and I eat black pudding and suchlike as an addition. I also think that when we discuss a 'good diet' then we should say that this must mean no constipation. That is a modern malady and indicative of a poor diet. Mention has also been made of protein. There is increasing evidence that we need 2 gm per kilo bodyweight. That is especially true for older people whom, it appears, do not absorb much of what they eat. I have tried pea protein and simply could not tolerate it. Whey protein is much easier to integrate into the diet. If, as somebody with CLL, you want to exercise, then good muscles are essential. Animal protein does that and plant protein is much more of a problem. I say that, by the way, as very much an organic gardener and a lover of vegetables. Exercise is, I believe, the best way to hang in with watch and wait. A diet that powers the body is then essential.
Is there a reason for your anaemia? CLL can trigger Auto-Immune Haemolytic Anaemia (AIHA), where the CLL tricks your spleen into destroying red cells. I have been through this (eventually having spleen removed, which has worked for 10 years and counting).
I often wonder if the AIHA was originally intermittent (until it got serious), as I remember having yellow eye-whites when 12 years old - whilst I did not feel bad, yellow eye-whites is a sign of haemolysis. Have I been carrying CLL / AIHA most of my life? who knows!
So don't automatically blame diet. Worth asking the question when you next see the specialist
Hi Quarry, no, I have been given no information on why I had anaemia. As that was in the past I can take it no further. I don't have a specialist and I simply have a blood test once a year. My GP knows little or nothing about CLL. It is a problem when you live somewhere fairly remote. If I do see anybody in the nearest hospital, which is 21 miles away, they are not CLL specialists. If my CLL worsens, my wife and I propose to move somewhere near a specialist hospital, such as Bournemouth. Meanwhile, I prefer to live in a quiet and attractive area where we can continue our mountain running. Best wishes to you.
Hum. A poor old GP will see perhaps 5 to 10 cases in their entire career. Not surprising they know nothing of detail re CLL.
I would really recommend agitating to be referred to a specialist - in worst case just to see / review your past records of blood tests and advise your GP - eg recommend what blood tests into future - for instance reticulocytes (baby reds) are not part of the standard set, but to me (with past anaemia) they are important.
I am lucky in that my specialist hospital is within walking distance. But all my recent 6 monthly 'checks' for the last few years have been via telephone. So I have not physically seen her for many (?5) years.
So stay by your mountains, but engage a specialist!
Not sure there is any guidance specific to CLL. I am doing well and also have a plant-based diet. So as long as your diet balanced (which I am sure yours is), I can't see why you sould have any problems
Agree, kwashiorkor is not a thing in the US . When I was vegetarian, everyone asked how I was getting enough protein. Americans get plenty of protein even when vegan.
You posted and said "when I was a vegetarian", why are you not a vegetarian now?
Hi VEGANFTA, you know your body! Eat what makes it feel good. I can't eat a pecan sticky Danish for breakfast and feel good . I feel yuck soon after for a couple hours. I eat one once in a great while. When I drink lots of water I feel good and energetic. The more veggies I eat the better I feel . I gave up red meat in the 80s . You know all this already I'm sure, but my point is, you do you. The same nutrition plan, I believe, doesn't fit everyone.
I don't have a lot to say, but a good diet makes your body strong and helps it fight even though it's antibodies and either depleted or not functioning. I would refer you to a group called Healing Strong: healingstrong.org/. Sometimes they come on a little strong so take what you want and leave the rest. Anyway, they could recommend all kinds of things for diet--if that's needed. I don't have a lot of time for their meetings, but if you can join them--even a support group--that might be helpful. I'm not sure what you need...just throwing that out there.
You're welcome. I wish you well. I am a vegan also.
Do yourself a favor and read The China Study by Campbell. Do not belive diet does not effect your health.
Good point. I was aready in there but thanks. Really I am interested in the facts, and opinions, on WFPB. Haven’t spoken to our Dr about that yet.
I have not read Campbell’s book. I know some think it’s great and others challenge it as being not science based. I cant comment much either way on that.
But insofar as your statement that diet impacts our health, I can’t recall knowing anyone who would not agree with that. I would think in any discussion regarding diet, thats a given.
The debates on here about diets usually center around two issues. The first issue is what diet is best. Some proposed diets on here are similar such as various versions of plant based diets. Some diets people on here swear by are almost complete opposites, like low fat vs high fat. Then there are fad diets like Atkins, keto, cleanse and paleo diets. Some diets people swear by on here are very restrictive.
The second issue with diets most often discussed on here usually comes up with claims that certain diets cure or treat cancer. While I do think it is generally well accepted that certain diets, like those high in anti-oxidants, can help prevent cancer, I have not seen any evidence of any diet curing cancer once one has cancer. I think every doctor still recommends we eat healthy, before or after a cancer diagnosis.
I would finally observe that while it is most certainly true that diet impacts our health, I think it equally true that diet can impact our health in both positive and negative ways. I am in particularly wary of diets that are overly restrictive and eliminate foods from our diets. Fad diets, designed to facilitate rapid weight reduction, frequently hinge on restrictive measures that may inadvertently lead to nutrient imbalances and foster unrealistic dietary expectations. Some diets have been shown to worsen our health.
I dont see most vegetarian diets as being faddish, though. While veggie diets do eliminate an entire food group of meats, I think it’s pretty well accepted that proteins and such we get from meat can be found in some plants such as beans, tofu and even potatoes.
Also consider taking saunas. Helps the body clear waste
Welcome to this site, which has been very helpful for me and many others.
You are likely fine on a vegetarian eating plan. You may see various reports from blood tests and when some of your values begin to move away from normal ranges, it is important to understand what those mean. Some are the result of the CLL and it may not mean that you are deficient in protein or lacking in other needed nutrients.
Before adjusting your diet to compensate for the out-of-range values, make sure to ask your CLL specialist to explain why those values are out-of-range.
Our bodies are pretty complicated and there are very helpful people on this site who can explain aspects of our disease in ways I can understand. But, in the end, I have realized that with my background being devoted to other areas, I have to rely on other’s here or my CLL specialist to for recommendations.
What works for one person may not be helpful for another in terms of diet. Our family has just been through this with our son and daughter-in-law. A new eating plan worked really well for him but she ended up with a very angry pancreas.
I would also add that making changes to one’s eating plan is best done gradually. I, for example, can eat too much fiber, and if I do, it’s not a pleasant experience. I eat enough fiber but I have learned that, at least for me, there’s a limit to how much I can eat.
I am a firm believer in moderation but like to exercise everyday. Some of our exercise is strenuous (cycling) and some is more moderate (hiking/walking). I find exercising to be an essential part of my day and we strongly prefer outdoor exercise.
Again, thank you for joining us.
You may find the book N of 1 by Glenn Sabin very interesting. Someone probably mentioned this already.
CLL Society has great information for getting educated.
Try to go see a CLL specialist if your regular doctor is requesting a bunch of scans or some thing like that. It’s usually not necessary for the start.
See my past posts as well. A vegan diet, green tea and turmeric can help but the real heavy lifters are the Btk inhibitor drugs ( imbruvica ) and the BCL2 blockers ( Venetoclax) and such when needed. But 30% of people never need treatment for CLL.
Be well,
Hoffy
I think the general advice you will get from doctors following evidence-based medicine really boils down to the following:
1) diet won't have an appreciable effect on your CLL
2) a good health and exercise plan will help you deal more effectively with symptoms of CLL and CLL treatments, which include fatigue, joint/muscle pain, skin issues, and general GI discomfort. Light to moderate exercise is the one big thing that's proven to help with CLL symptoms.
3) there are a couple of very specific things you should avoid while on most CLL treatments, most notably grapefruit and Seville oranges (marmalade), because they interfere with treatment dose effectiveness
That's about it.
There's lots of ideas about how diet might help with CLL. This board's gone through discussions on turmeric, green tea, various mushroom extracts, fish oil and omega-3, lots of diets, intermittent fasting.
All of them have had passionate advocates.
None of them to my knowledge have turned out to be backed with credible studies with blinded results and good statistical controls.
That's not to say they can't help. The best health regimen is one you'll stick with. So if you believe something is helping you and your doctor's on board with it, great. Just recognize the difference between general health maintenance and cancer treatment.
I was eating a whole food plant based diet for about 10 years. I've had to add in fish due to other health issues. One thing I found is that when I eat broccoli and or broccoli sprouts daily my ALC goes down. Add a dash of black pepper to increase bioavailability. (Broccoli is high in sulforaphane which is a chemical that is made when chewing cruciferous vegetables such as broccoli, cauliflower, and broccoli sprouts. A chemical in these vegetables called glucoraphanin mixes with an enzyme in humans called myrosinase, which produces sulforaphane.) I'll let you do your own research regarding sulforaphane and cancer/leukemia.
Thanks Veganfta, for asking a question that produced such an interesting range of responses. Just before CLL diagnosis I had a wicked rash that a dermatologist had trouble diagnosing. It led me to the Integrative Medicine Dept of Cleveland Clinic, and to an elimination diet (23 days with methodical reintroduction of the various categories that were originally eliminated).
As part of this process I had a two hour consultation with the doctor and I learned about various efforts that would be worth my while to attend to: stress management, hydration, improved sleep, diet and exercise. That was 7 years ago and it changed my life.
Strangely enough with improved eating (for me that's moderation, lots of whole foods, avoidance of processed foods and high sugar), more sleep, more stress management practices, and more exercise and water intake, I felt better than I had in years. This is in spite of being diagnosed with CLL just a couple of months after the consultation. My CLL numbers have gone up pretty steadily over these years, but I'm still W&W (in spite of being unmutated). My doctor has chided that I'm pretty boring. I like that.
At first it used to annoy me when I would routinely ask medical folks about what efforts I could make to improve my CLL situation, and they would say "there's nothing you can do; diet doesn't matter." One quite honestly said that they just don't have systematic knowledge because research is funded by pharmaceutical companies who don't fund nutrition studies. More often now experts are at least acknowledging the advisability of health strategies, and grasping that it's healthier overall if people feel some agency in their lives as opposed to feeling like a victim. One very thorough recent study did indicate clearly the power of regular exercise. The book N of One by Glenn Sabin was quite interesting as just that, a sample of one person who took his own health very seriously.
Overall, not to be ridiculously positive, but I appreciate life a lot more since my diagnosis. I'd be glad not to have CLL, but the awareness of mortality has improved the way I live. I wish that for you, too. Welcome to this site (which has been helpful for me many times) and to the club no one chooses to join. Best on the journey, Lynn
Smiles. Thanks. Great to be boring too.
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