Hi has anyone tried a keto diet? I was recently diagnosed with CLL and thought I'd see how diet could help. For two weeks I was on a Keto diet and then switched to vegan (low carb). My lymphacite count went down from 36000 to 26000 in that time. A month on again with vegan it went down to 26000. So I wonder if it's the vegan diet that helped me, the keto diet or something else. (I switched to vegan (with some fish occasionally) as I read that meat has IGF1 which promotes cancer). Look forward to hearing what people's views are. I really appreciate this forum.
Is a Keto diet helpful?: Hi has anyone tried a... - CLL Support
Is a Keto diet helpful?
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Research123
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AussieNeilAdministrator
Before you get too excited about what is in reality within the normal range of variation on lymphocyte counts with CLL, check out how these counts variety in 21 trial patients.
healthunlocked.com/cllsuppo...
I would like to say that you are onto something but as you can see, such changes are fairly common, so don't be surprised to see them jump back up again next blood test.
Neil
Thank you yes I can see ups and downs! I guess we can only try
We were told at a CLL Ireland info day that there is no basis for believing the Keto diet can help . A healthy varied diet is advisable .
Thank you for replying. Was that a conference or something and do you remember who was saying it?
It was an information day for CLL patients and their carers . If memory serves me correctly it was a dietician who specialised in advising cancer patients .
Thank you!
I’ve heard someone say that the best diet for anyone is the one someone will stick to. Certainly avoiding processed food and too much carbs does seem to be getting a lot of belief these days and a lot of special diets include that. Keto vegan, macro, intermittent fasting, it can all seem bewildering at times. You have to figure out what you believe in and what works for you and depending on your stage of Illness your doctor may well have a few things to say. Whatever dietyou are on you do want to get enough of all the vitamins and minerals ideally in your diet and some fad diets can be too restrictive to do that.
Thanks Adrian
My oncologist said to stay away from those diets.
Hi,
I have to say that I am in complete agreement with Adrian. Finding something that makes you feel good AND that you can stick with is huge. Sustainability is an important part of any food plan. I follow a mostly plant based diet and I not only feel great, I find it an easy way to eat wherever I am.
Best of luck,
Sandy
Thirty one years ago when I was first diagnosed I became a vegetarian simply to force myself to eat better as I have hated meat and meat products all my life and had fallen into a real junk food junkie. I can’t say as it had had any real affect on my CLL, however, I am able to say I am so much more healthy because of it. Panz 🙏☘️😍💕🦃🦃🦃
31 years.....sounds like you've been doing well on your diet!
all I can say is almost 3 years ago when my CLL had started to progress I had an emergency nose bleed. I was kept in hospital overnight and sent home. In the morning before being discharged I had an epiphany. I decided that may be I needed to lose weight. I cannot explain why I felt like this but that was the day I went on a carb free diet- you could say almost keto diet. Over the three years since i lost heaps of weight ( may be a combo of diet and cll progressing) Never the less I am now quite slim. But about 9 months ago I found out I have the TP53 deletion- am on Veneteclax and have been through 6 monthly rituxamab infusions. I feel good and am in deep remission. All I can say is the weight loss has helped me gain fitness and I think my success to deep remission is partly due to the diet change.
Thank you glad to hear things are going well now
Hello Resrarch123
My first Doctor told me food was not going to solve CLL and he was right. I tried both the keto and vegan diets which did not help me. As I did not need to lose weight, part of my problem was rapid weight lose at CLL diagnosis. If you however feel this helps you go for it.
We got my husbands Hematologist blessing to start the Keto diet. My husband who has CLL and I have each lost over 30lbs and we both feel so much better. It has not effected my husbands CLL blood counts. When we go out to eat my husband will have more carbs but at home we stay on Keto. We do believe sugar feeds cancer and other illnesses.
Glucose (blood sugar), is a carbohydrate and is our primary energy source after we digest food, but our cells can also derive energy from fats and proteins. (Table sugar is a combination of glucose and fructose). The problem with the simplistic "sugar feeds cancer" idea, is the inherent difficulty of starving cancer cells while still feeding our healthy body cells. More on this topic here:
healthunlocked.com/cllsuppo...
You are right about excessive sugar consumption not being good for our health. We consume far, far more than traditionally was the case and most of it is from processed sources, rather than from raw food sourced. We have also bred fruits and vegetables to be sweeter.
Neil
in reply to AussieNeil
The human body can make all the glucose that it needs through Gluconeogenesis. Ancestral humans were primarily carnivores and subsisted on protein and animal fat. Agriculture is a relatively modern addition within the last 12,000 years. Further, there are many scientists who believe that glucose is highly regulated in the body. High levels of glucose in the blood is toxic.
Insulin is the mechanism for ridding the bloodstream of excess glucose. We either burn it for energy or it gets stored as fat. When the fat cells (adipose tissue) has taken up all the fat it can, it shuts off the ability to take up more glucose. THIS is what leads to insulin sensitivity: the insulin is there, but the cells don't respond. We can see evidence of this all around us with the obesity epidemic. There is a lot of research pointing to poor metabolic health as the root of all chronic disease.
I eat nothing but red meat, eggs, butter and salt... and love it. I consider it a proper human diet. When I started this way of eating I felt as though a cloud had lifted off of my mind. I could think more clearly. I had more energy. I'm stronger and leaner. I'm very athletic and run and lift weights. I have all the energy I need to do those things.
I love this way of eating and would never go back, CLL or not. I watched my asthma go away. My allergies went away. GERD went away. There is something to be said for eating in an ancestrally-consistent way.
I absolutely believe that the modern human diet is the cause of much of modern chronic disease. While I may not be able to reverse the CLL, I don't see any harm in continuing to eat a zero carb diet. Continuing to eat the diet that made you sick in the first place is probably not a good idea.
We are all different with respect to what diet suits us best. With respect to "While I may not be able to reverse the CLL, I don't see any harm in continuing to eat a zero carb diet.", with CLL we are at higher risk of secondary cancers and general population studies show a there is a higher risk of secondary cancers from eating red meat. mdanderson.org/publications...
Neil
in reply to AussieNeil
There is not one single interventional study proving a causal relationship between red meat and cancer. Observational studies showing aan association have been rendered moot by a study in Japan showing a positive health outcome with higher red meat consumption.
Do you mean this study published in late 2020 in the journal Nutrients?
Association of Red Meat Intake with the Risk of Cardiovascular Mortality in General Japanese Stratified by Kidney Function: NIPPON DATA80
mdpi.com/2072-6643/12/12/37...
Which concluded:-
"In the present study, there were no clear associations between red meat intake and CVD mortality risk in Japanese population; however, a higher intake of red meat was associated with lower risk of future CVD mortality in women with reduced kidney function. Further investigation is required to confirm the effect of red meat intake on CVD."
Per my emphasis, that's hardly reassuring unless you are a Japanese woman with reduced kidney function. Do you have a similar epidemiological study for a Western country? Remember too, that the incidence of CLL is significantly less than it is in Western countries and most importantly, the amount of red meat eaten in Japan is low by Western standards, but increasing, hence the study.
Neil
in reply to AussieNeil
"No Clear Association". It doesn't get any clearer than that.
PMID: 23902788 Meat intake and cause-specific mortality: a pooled analysis of Asian prospective cohort studies
This study had over 300,000 participants. It was bigger than the US study.
Results: Red meat consumption was substantially lower in the Asian countries than in the United States. Fish and seafood consumption was higher in Japan and Korea than in the United States. Our pooled analysis found no association between intake of total meat (red meat, poultry, and fish/seafood) and risks of all-cause, CVD, or cancer mortality among men and women; HRs (95% CIs) for all-cause mortality from a comparison of the highest with the lowest quartile were 1.02 (0.91, 1.15) in men and 0.93 (0.86, 1.01) in women.
Conclusions: Ecological data indicate an increase in meat intake in Asian countries; however, our pooled analysis did not provide evidence of a higher risk of mortality for total meat intake and provided evidence of an inverse association with red meat, poultry, and fish/seafood. Red meat intake was inversely associated with CVD mortality in men and with cancer mortality in women in Asian countries.
Just like the US study that was used to demonize red meat, all observational research is junk. It is subject to healthy and unhealthy user bias. The fact that these two studies came to opposite conclusion PROVES that red meat has NO association with all cause mortality. And, again, there is NOT ONE RCT showing a causal link between red meat consumption and all cause mortality.
"No Clear Association in the Japanese population," where the Japanese eat about 40% of the red meat eaten in the USA per capita, so you have nicely ignored the dose response issue.
That "there is NOT ONE RCT showing a causal link between red meat consumption and all cause mortality" is hardly surprising, because when it comes to diet and illness, RCT's are virtually impossible in humans. Instead cohort studies - observational studies in which a cohort, or a group of individuals sharing some characteristic, are followed up over time, and outcomes are measured at one or more time points.
We didn't do an RCT to determine the link between tobacco consumption and lung cancer, but per the abstract to this paper on smoking and lung cancer: pubmed.ncbi.nlm.nih.gov/161... "The association between cigarettes and lung cancer has been proven by large cohort studies. Tobacco use has been reported to be the main cause of 90% of male and 79% of female lung cancers. 90% of deaths from lung cancer are estimated to be due to smoking. The risk of lung cancer development is 20-40 times higher in lifelong smokers compared to non-smokers."
But you know all that; you are just cherry picking to support your dietary choice and rubbishing observational studies "all observational research is junk" because they don't support it. 
Such as this study:-
Red meat consumption and all-cause and cardiovascular mortality: results from the UK Biobank study pubmed.ncbi.nlm.nih.gov/352...
Methods: 180,642 individuals free of CVD or cancer were enrolled from 2006 to 2010 and followed up to 2018 in the UK Biobank...
Conclusion: Our results indicated that red meat consumption was associated with higher risks of CVD, CHD, and stroke mortality, and the associations were not modified by lifestyle and genetic risk factors. Replacing red meat by poultry or cereal was related to lower risks of CVD and CHD mortality.
Red meat has been a regular part of my diet for most of my life. Per the attached graphic, Australians topped the per capita list in 2014 in meat consumption. I only eat it occasionally now, but that change wasn't because of my concern from the possible risk of secondary cancer. If there really is a risk, I think it is low enough, provided I avoid badly barbecued meat, to not be too concerned about it.
Neil
Asian countries eat significantly less meat per capita than most other countries
neurodervish in reply to
According to pubmed.ncbi.nlm.nih.gov/164... "The best available estimates suggest that those ancestors obtained about 35% of their dietary energy from fats, 35% from carbohydrates and 30% from protein. Saturated fats contributed approximately 7.5% total energy and harmful trans-fatty acids contributed negligible amounts."
It's worth noting that those "ancestral humans" had a life expectancy of between 25 and 30 years.
in reply to neurodervish
That's nonsense. Take infant mortality and lack of acute care out and you'll find that they lived longer, healthier lives free of chronic disease. It all went downhill after the agricultural revolution.
SofiaDeo in reply to
Refined wheat and sugar. Hybridized wheat instead of einkorn, so it could be machined and processed instead of by hand. Sugar as a main ingredient instead of as a spice. It's interesting that while cancers and congestive heart failure were noted in the time of Hippocrates, modern diseases like metabolic syndrome and type 2 diabetes weren't around. There have been studies in the last 100 years of isolated cultures, with little or no Type 2 diabetes or atherosclerosis on their ancestral/local diet, getting the same percentages of these diseases within a few generations of Western diet changes.
Regarding meats, in the US most beef and now chicken/eggs are NOT fed a "normal" diet IMO. Feedlot beef nutrient composition is markedly different than grass fed. And with chicken as well as beef now being fed more soy instead of corn, the flavor of the flesh has changed. If you are in the US and skeptical, try a clover raised turkey this year for Thanksgiving, if you can find one, Very expensive, but you will be hard pressed to go back to blah after trying it. It's unfortunate the flavor of grass fed beef changes regionally, with grass type, and drought conditions. I've had a few grass fed beef types from parts of the country I didn't enjoy.
in reply to SofiaDeo
Exactly. Dr Weston Price could find no evidence of modern disease in the aboriginal cultures he studied.
in reply to SofiaDeo
All beef is grass fed. The difference is whether it is finished on a feed lot or left to finish on grass. Grain finished definitely tastes better, but I go with Grass finished so I am eating animals that were fed an evolutionarily consistent diet. Hopefully I'm also avoiding Glyphosphates and other toxins that may pass through the cattle.
I don't know about you but one of the most frustrating things about being in watch and wait is getting so many mixed messages and not knowing who to believe or what to try. In my efforts to do my part in getting healthy during watch and wait and in my efforts to gain some control I tried various diets and adopted various new regimes and practises. The bottom line, is to find out what works best for you, what brings you peace, empowers you and won't do you harm. I briefly tried keto, but I found it way too restrictive. My first naturopath recommended that diet (subsequent ones, did not). I even made my own organic bone broth ice cubes and my mom, bless her heart, did the same! I found it too difficult to follow and was guilt ridden when I deviated from keto. I was stressed enough with my new diagnosis and I did not need to deal more anxiety! It was not a diet for me.
In the end, during watch and wait, I adopted primarily a plant based, whole food diet, eating some meat occasionally, and did daily intermittent fasting (eating within an 8 hour window - 16:8). This worked for me along with adding other positive and beneficial components/routines/new skills/resources into my life.
I personally know a women who with CLL who brought her WBC down from about 120 K to 50K on a Vegan raw food diet. It took her about 6 months. After 3 year her counts wehnt up on the Vegan Diet and she started Imbruvica. She is still doing well,
See my past posts ,
I personally think the Keto diet is dangerous longterm.
Be well,
Hoffy
Hoffy, I've notice that you regularly quote this person's experience, but honestly, all that you can say is that you know a woman who observed that her WBC (presumably mostly her lymphocyte count) dropped from 120k to 50k after she started a vegan raw food diet. N of 1 experiences are not a reliable basis for making changes in our lifestyle, hence clinical trials.
Remember that correlation does not necessarily mean causation. See: healthunlocked.com/cllsuppo...
True. N of 1 is a good book too Would that be N of 2 then :)...
How about this paper for general cancer:?
ncbi.nlm.nih.gov/pmc/articl...
It is difficult to study. It is hard to compare groups of people related to Diet. There are many factors,
Be well,
Hoffy
The 2010 paper you referenced looks at the evidence for vegetarian diets reducing the risk of cancer developing , not reversing the tumour burden in CLL. Further, as your reference states "Most large prospective observational studies show that vegetarian diets are at least modestly cancer protective (10%–12% reduction in overall cancer risk) although results for specific cancers are less clear."
Neil
Thanks Hoffy for your link to very interesting paper. I must admit I only scanned it but carefully read the conclusions. I'm over the moon that it reports the fish eaters did really well, better than only vegan or vegetarian.
From all I've read in the past must be a good idea to eat fish and plants and add poultry if feel the need. So that's what I try to do. My body seems to need huge amounts of protein so I'll never eat only plants. Yes I know beans etc. have protein, but not enough or not the right type for some of us. Two weeks after I met my future husband decades ago, he looked hard at me one evening and said " You have an unusually high need for protein". I was a bit taken aback. But point is that we're all DIFFERENT. And I wish that vegans would not think they've found to answer to health... So much depends on our individual needs.
Another thing. Trouble is that some, me included lost weight hugely because of CLL and treatment (Ibrutinib) made it worse. So have to wolf down plant carbs. But do avoid sugar.
Would love a respected paper that reported that adding a luscious steak from a grass fed animal maybe a few times a month to plant and fish diet was the best way to go. 😀😀
You were right Neil about variation in count. It went down to 16000 then up to 30000. Haven't had it tested for 4 months with lockdown etc.. I've been going vegan with occasional fish avoiding bread rice potatoes but make up the calories with great nos of peanuts with the salt washed off mixed in smoothies and the occasional fast. With these peanuts I've gained back the weight I didn't want to lose and I do HIIT exercises. Not sure how the CLL is now but I do feel very well in every other way.
Sorry to hear I was right, but I've seen this happen often. I really appreciate you letting everyone know that your counts are bouncing around and you just needed more blood tests to see the pattern. Still, it's great that you are feeling well.
I’ve just read back through the thread on this post , as it’s been added to in recent days and thought I add my tuppence worth !
In the past 3 months due to continuous infections I have unintentionally lost a lot of weight . Do I feel healthier? ...not one bit. Do I look better? ..I don’t think so . A very nice neighbour , who knows I’m ill complimented me on my weight loss a few months ago and asked me what diet I was following , I wasn’t having a good day and quipped ‘the cancer diet ...I wouldn’t recommend it ! ‘ 😬. I did apologise next time I met her , as did she . All of my lovely clothes are swimming on me . I could get them altered but I won’t because my goal is to feel better and put back on the weight I’ve lost . I was a very comfortable size 12/14 , I am now a size 10/8.
Body size isn’t always an indication of good health . The word ‘diet’ does not sit well in my vocabulary .
Having raised three daughters alone during an era of obsessiveness over being slim/thin/skinny I tried to teach them that healthy eating is a ‘lifestyle choice’ and having a different body shape to their friends was ok . I wasn’t successful and because of peer and media/ pressure one of my daughters who is 5’11’ and an Amazonian beauty developed an eating disorder . She was scouted by a national modelling agency in her teens and told she needed to lose weight . She struggles with body image to this day . However she is a hell of a lot healthier and has way more energy than skinny old me and is still beautiful and Amazonian !
I personally eat healthily and always have done . It is the way I like to eat but it didn’t stop me from getting sick or hasn’t stopped my illness in its tracks . Plenty of fruits , nuts , seeds , oats , vegetables , salads , mostly fish (white only as sadly I am highly allergic to shellfish , severe anaphylactic shock event 11 yrs ago ) chicken , legumes , brown rice , spelt bread and a very occasional small amount of red meat . I avoid wheat ( it bloats and constipates me) , eat very little dairy ( it gives me hives) and do not use sugar. If I want to sweeten something I use manukau honey or Zylitol . I avoid cakes and chocolate (again those damn hives ) I don’t drink alcohol anymore (hives 🙄) however I was never a big drinker. I don’t smoke , I was an occasional social smoker over 2 decades ago) . I was a daily 1hr + brisk walker but not in the past year as 30 mins not so brisk walk and I’m pooped . I used to be an enthusiastic weekend hill walker . I miss that .
We all need to eat healthily , to eat organic foods where possible and affordable and to exercise to the best of our ability . But fad diets and yo-yo dieting are not the answer to good health . I know the cancer dietician at the CLL information day was asked specifically about the Keto diet and she said there was no scientific evidence that cancer patients fared better on Keto , vegan , or vegetarian diets . She was especially critical of the Keto diet .
So BluMts I think you should have that guilt free juicy steak , preferably grass fed and hormone free , that you crave once a month . Remember what’s seldom is wonderful ! All the best . Emer
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