Has anyone heard about this article/study done on a cll patient's dramatic results and reversal of cll after changing to a whole food plant based diet? It documents his rising wbcs and dramatic drop and years of stabilization on a plant based diet.
It's encouraging but I had some doubts about its legitimacy.
I have seen this. The thing is, with this person being in Europe, he didn't get or post any FISH or flow cytometry results. Were he in the US, I don't think one gets a CLL diagnosis without genetic testing. We don't know if he had any mutations or not. Or what percentage of cells carried mutation. He didn't say how the CLL got diagnosed, just that he got this diagnosis.
With functioning genes, any external stressors like low grade or simultaneous new or reactivation of various infections, might cause a rise in lymphocytes in addition to the beginnings of lymphocytes abnormalities that rose, and then were finally overcome by functional genes. This may turn out to be a classic case of "poor diet, unhealthy lifestyle" that got nipped in the bud before whatever changes became permanent. Because if some defective cells started to rise, I can imagine reducing stressors early enough such that defective cells actually could be destroyed by our immune systems. He doesn't mention if he was working 60+ hour weeks, then cut back along with exercise plus dietary changes. He simply addresses his diet, and disease states of any diagnosis are affected by most everything we do, not just diet.
The article was lacking a lot of details. I was hoping there were other studies or some follow up with more details. I tried changing my diet after my diagnosis. I quit drinking exercised daily and dramatically improved my diet. Lost weight and gain back ab muscles over 3 months and my cll numbers increased. However, I was not on a plant based whole food diet.
Since seeing this article a couple of months ago I went plant based whole food and lost weight and my high blood pressure is near normal now. My next blood lab is coming up. I will post if I have any improvement in my cll numbers. I feel much better on the diet so I suppose it can't hurt.
Oh it can hurt, unless you know exactly what you are doing. If you are interested in dietary interventions and how to do them right get your information from the expert.Dr. Robert Lustig : METABOLICAL.
Available on Amazon.
A few items from the whole food plant-based diet that are a disaster for anybody's health: fruit juices including freshly squeezed, extra virgin cold pressed olive oil (if heated), rice and corn - if consumed in large quantities (check the nutrition profile + glycemic index and load), peanuts in certain cases (think aflatoxin), some of the seed proteins are very bad for prostates, some of the seeds have the Omega 6 to omega-3 ratio totally out of whack (sunflower) etc.
And even more importantly eating unhealthy stuff is topped off by inadequate consumption of healthy animal based stuff. Most prominently animal-based proteins and omega-3s (no, plant-based are not equal far from it), etc.
LeoPa, Why is EVOO a disaster if heated? Is it because of oxidation, or is there another reason? I had read that EVOO was one of the best plant oils to use for frying etc, as it doesn't oxidise as much as other (less saturated) oils. I do try to moderate the temperature as much as possible. Thanks for any information. Cheers, -Jim.
Hi, because it burns easily. The smoking point isn't high. Frying isn't healthy either. Starches and carbohydrates should never be fried. Even meat has to be fried carefully. Because of the Maillard reaction. The best oil for frying is coconut oil because the smoking point is 220° Celsius. It is difficult to burn. I use extra virgin olive oil for salads. Coconut oil for frying. Real butter for baking. However if you only pan fry and keep the heat below 180° then it should be okay to fry on extra Virgin olive oil.
I live and was even born in Europe. What gives you the idea that genetic testing is not done here? I can assure you that this is done and that the health care system and doctors are excellent in this part of the world. 🙂
Ha, Europe is so diverse I can only speak for Slovakia 😃. Flow cytometry for diagnosis , fish testing only before treatment.
Yes very true, and I can only speak of my experience in France . . . One should not generalise either way about Europe 🙃 you are right.
I got that idea from a number of people here stating they got a CLL diagnosis, but don't get genetic testing until they are ending W&W prior to treatment. If I am wrong, apologies. I assumed they got the CLL diagnosis based on a slow growing lymphocytosis and appearance of lymphocytes on the slide smears. Glad to learn about how other places do it!
To me it was clear SofiaDeo was not maligning any area or country. Just pointing out that the article didn't indicate that genetic testing had been done -- and that she understood that some places they don't do it, that is all. Believe everyone is only trying to be helpful.
SofiaDeo, I always find your posts informative. By the way, I am in England and was diagnosed in our state health system, in a London hospital, where a genetic test was done when huge lynph nodes were found in my abdomen when I had a spinal ex-ray. . But the test to see if I was mutated or not, was not included. The private assessment later, before treatment was a bit more comprehensive in that it included testing to see whether I was mutated or un-mutated.
Some think there are countries in Europe with better or more effectively funded health systems than ours and I cannot believe they would not offer fully comprehensive genetic tests.
Barcelona for special reasons is very advanced in Leukemia treatment and has an internationally well respected Leukemia research institute. Could mention a few other European countries that are unlikely not to offer best testing.
Been to Spain but never Barcelona -- maybe you are giving me an excuse to go there. 
It's worth a visit. Here's a link to a Leukemia research centre there: carrerasresearch.org/en/
Clinical care seems good through out the country. I've been impressed with the caring nature of Doctors there. I hope Catalonia stays a productive part of Spain as I fear Nationalism anywhere.
A healthy life style including diet and exercise has many benefits physically and mentally. Many chronic diseases like hypertension and diabetes are a result of bad habits and obesity especially in the developed world could certainly prevented.
Unfortunately the report posted is not a study but a description of a personal experience with no scientific value or implications and for that matter no conclusions can be drawn in respect to treatment for CLL. A scientific study wound have included two groups say of 100 patients each with one group switching to the above mentioned diet while the other continued the same diet and both followed for a few years assessing the development of their disease. Spontaneous remissions and stable disease has been described in CLL in the past.
Again I am all for exercise and healthy diet but i am not sure how much this influences progression of CLL based on the caee report presented.
We've thoroughly discussed this paper here: healthunlocked.com/cllsuppo...
It's worth reading the many comments about the inadequacies of the paper and thereby learning more about CLL management, the importance of a good diet and much more.
Neil
If only this were true, we’d all be vegetarians!🥗❤️
My mother-in-law developed cancer many years ago. Macrobiotic diets were the thing then for cancer, which she began religously. It 'seemed' that her cancer didn't progressed for a while but since she wasn't going to the doctors, no one had a clear idea of what her cancer status was.
I remember how let down she felt when it became evident that the cancer was progressing. She felt that she adhered to such a restrictive diet and had sacrificed the enjoyment of food for nothing.
Hmmmm a macrobiotic diet cuts out some healthy foods like avocado and salmon, but mostly cuts out junk, especially baked goods. So if her "food enjoyment" would have been mostly high carb baked goodies and sugars, I bet her cancer would have progressed faster. Most cancers (not CLL) thrive in a high sugar environment.
I understand what you mean but I need to correct any preception that you or someone else may have from my post.
My MIL's 'food enjoyment' absolutely did not rely on an unhealthy diet that would have accelerated progression of her cancer. Nothing could be further from the truth and that preception does her a great disservice.
She prepared what most people would consider very healthy meals prior to going on the macrobiotic diet. She wasn't someone who ate processed foods or high carb baked goodies. Desserts would have been for company. She took cod liver oil daily.
She (and my father in law) took special cooking lessons for the diet, which involved a lot of brown rice she bought in NYC, seaweed, sauerkraut, beans. It is not an easy diet to maintain. She went on it because at the time the idea that a diet could cure cancer was a very popular.
I regret writing that post because it does such an injustice to my mother in law if people were to think that.
I am sorry, I think decades of hearing people say "I don't want to change my (unhealthy) diet, isn't there another pill I could be taking" has jaded me!
Plus the news services that publicize "diets" and "studies" without bothering to comment how valid the studies are, if they were twisted to "prove" something. But not exciting, so not done IMO.
I am relying on my memory here- but there was a book I read many years ago. My mother had just died from breast cancer. It was written by a doctor who had developed testicular cancer. He was "cured" by a very restrictive diet. I remember him eating brown rice and miso soup. It was all the rage in the late 60's early 70's.
Virginia
I have been a vegetarian from birth, and it didn't stop me from getting CLL.
FWIW, I totally agree with those who point out that anecdotal evidence such as this has no scientific value. If we could all be cured of CLL by changing diet, we'd all be doing it.
Staying healthy does help the body to fight illness - but as a cure? 'Fraid not.
Sadly vegetarian doesn’t need to be healthy. It still includes dairy from another mammal, eggs , processed and ultra processed stuff. I reckon only WFPB is gonna work, or at least maintain asymptomatic status
Good luck with that! I'm doing fine as it is.
I have specifically asked this question of cll researchers at Mayo and the answer was diet plays no part in CLL. Doesn’t mean diet isn’t important in overall health but no correlations in CLL.
Thank you....I have researched and asked mutiple doctors and specialists the same question and got the same answer as you did.....but if you can be as healthy as possible, you have a better prognosis
That's the one place doctors so often disappoint me. I simply do not believe that diet plays no role in our health both generally and specifically but am quite aware that doctors are often taught that.
I’ve been a vegetarian since my early teens and I was diagnosed with CLL aged 45 with a fairly typical progression in spite of diet. Removed dairy when first diagnosed for over a year. It made no difference to my CLL but felt a lot less healthy overall on a plant based only diet so went back to vegetarian which is better for me. This is just my personal experience.
I agree, I dislike things like pushing a macrobiotic diet on everyone! We are all different and what works best for one person won't work for another. IMO the humans in various regions of the world that quickly adapted to local food sources were the ones that flourished & reproduced. So we have a genetic basis for doing well on the local cuisine.
If only we could cure cancer with diet ! I’m not denying there are many health benefits to be had by living a healthy lifestyle and eating well.
Have been lucky to be on w and w for several years now, touch wood. My theory, probably daft, is to eat lots of blood coloured natural fruit and veg, thinking, again probably daft, that it's nature's way of telling me they are good for the blood. Organically grow in my garden: blackberries, blueberries raspberries, loganberries, tayberries, 🍓🍓, black currants, red currants, rhubarb, cherries, damsons, elderberries, dessert gooseberries, beetroot, tomatoes, raddish, peppers, chillies etc. A lot of which I share with the birds 🐦 who in return give me great spiritual joy. I avoid the deadly nightshade though 🤣. Also buy in black grapes & have the occasional glass of red wine, sherry and port, cheers!
Oh, I wish I were your neighbor when you had excess fruit to give.....such a great garden
Hey, sounds a bit like homeopathy which , though to me makes zero scientific sense, nonetheless seems to work in some cases, at least for me. Have you noticed any benefit from your colorful diet (other than you are getting oodles of great phytonutrients from these colors)?
A true homeopatic solution is the ultimate placebo. It theoretically has none of the starting ingredient and should only contain the impurities present in the diluting water. It's always fascinated me how those inevitable contaminants (hopefully) present in very small amounts, have no effect on your health, yet the absent starting ingredient supposedly does. As you say, it "makes zero scientific sense".
It's not unusual to see products marketed as "homeopatic", which do contain active ingredients, which are often sold in higher concentrations in non-homeopatic products, including prescription items.
Neil
Bit of a digressive story here, but possibly of interest. When I was younger, I did a news article on "wart conjurers" -- people who, through seeming magic, could make warts disappear on their patients/clients. There were many in my area of Virginia. One of them would "buy" the warts, paying a few pennies to the inflicted, telling them the warts would come to them in a few days, others had such remedies as putting a piece of broom straw over the wart for 3 days, etc -- all of them absurd, of course. But here's the kicker. It worked! Each of these "conjurers" had high success rates. The motto of this digression is, I suppose, mind over matter. Ever after that experience, I do not discount mind over matter at all. But one has to believe. Not sure how this relates to CLL, but certainly to homeopathy, I suspect. Anyway, reason enough for us all to keep positive for our health sake, and even open to "broom straw" suggestions if they don't harm us or cause us to forego something else. (I unfortunately do not know of any Cll conjurers)
Warts disappearing sounds to me like another instance of the statistical property of "regression toward the mean":-
shortform.com/blog/regressi... (one of many such discussions of this statistical behaviour).
- Many health problems tend to resolve on their own, given our bodies’ natural healing properties. However, patients attribute the healing to whatever action they took meanwhile – seeing a doctor, doing a superstitious act, taking medicine – while ignoring that they likely would have returned to full health without any action.
Hi all. Been a bit nervous to comment so this is my first time! I think you are wonderful on the site. I too changed my diet completely like many of you. I haven’t got rid of animal products as I feel so much better with them in my diet. I follow the rainbow diet with minimum 30 different types of vegetables, herbs etc a week. No processed food. Having had terrible severe fatigue at diagnosis I definitely thought I had cracked it as my fatigue improved a bit, and my counts reversed. My counts remained low for couple of years. My lymphocyte count is early 40s now however, and unknown to me my spleen has become massive. I am therefore having to start V &O. The feeling of devastation at having thought I cracked it, to finding my spleen had secretly been growing was massive. But it fits the fact that I had been feeling more unwell. My feeling is that diet does make a difference to how I feel. I feel unwell with processed food and sugary foods so have got rid of them except occasionally. I think CLL is very clever. It adapts to whatever you throw it. We are all different. So don’t feel gutted if everything you are doing suddenly stops working. There are amazing treatments. We all have different genetics. The rainbow diet definitely makes me feel better, and I imagine that it’s the variety that makes the difference. Some of us proceed faster than others. Some of us can’t do much exercise. But whatever you, my feeling is, do don’t feel disillusioned if it advances because it’s nothing you have done. All the best!
Great post
I went on a "cancer" diet and was never in better shape three months into my diagnosis at which point it was time for treatment (which I delayed to participate in a trial). We all look for a natural cure in the beginning, but so far, there isn't one. Until there is a trial that demonstrates repeatable success, we can't trust the results. I cringe to think how many people have died prematurely trying to cure themselves naturally.
I suggest no one should poo poo regarding a whole food plant based diet with NO OIL, NO SUGAR AND NO SALT. I’ve been plant exclusive SOS for a long time. Works for me. Been in remission for nearly 2 years. The key is no salt, no oil and no sugar ? What do you have to loose?
If that’s directed at me Rich, I don’t ‘poo poo’ such a diet but personally I’ve moved onto solids and this predominantly liquid type diet doesn’t appeal. I certainly wouldn’t like having to take an acid inhibitor (with the known side effects) to counteract the acid production from lime.
Glad it’s working for you. We all do what suits our lifestyle.
Newdawn
You mean no external oils, right? Because plants have oils. Coconut, olive, avocado, lemon, lime, carrot...
No added oils. No oils for cooking. There are many videos on Youtube. I would suggest Dr. John McDougal. Dr. Joel Furhman, Chef AJ. and many more.
You might consider researching the plant based exclusive diet. I’ve never heard of it being liquid.
Yes I’m aware of that but I was referring to the diet published in the link quite specifically. You need to click on ‘reply’ if you’re wanting to respond to a particular member.
Newdawn
Point taken. Be well.
It may also be a (possible) case of Spontaneous CLL regression. I’ve read somewhere of this being rare, but happening to a few.
I've always wondered if people who experience this spontaneous regression were caught early in the diagnosis, changed various things about their lifestyle, and helped their body heal itself. Because we get DNA damage all the time, and our body repairs it. But for whatever reasons, sometimes this repair process is disrupted somewhere along the (numerous potential places) line, and the defective cells overwhelm our systems' ability to fix.
I believe early on was the case for the few lucky ones. Though, don't know for sure.
Spontaneous remission happens about 1% of the time with CLL. I've seen published case reports of about 30, with all but one noted as IGHV mutated. Given the recognised difficulties in measuring IGHV, particularly historically, I suspect that spontaneous remissions may be limited to IGHV mutated folk.
We aren't informed of any of the prognostic factors in this case study, but given their fairly slow ALC doubling time and non remarkable journey with CLL, I suspect they are IGHV mutated. Given about 50% of CLL diagnoses are IGHV mutated, that means about 2% of those with CLL may underdo spontaneous remission. In our community of nearly 20,000 members, that comes to around 400 people. The ALC in this case has just dropped lower, which is one of the patterns seen in ALC without necessarily a remission.
Neil
This sounds similar to what I found. Though, I suppose there could be a few more cases out there that have never been diagnosed, or even knew they had it. The folks that do not see the doc much or go for a physical.
The slow cooker has just been emptied and 10 meals of stewing steak plus veg are ready. It looks and tastes amazing. As a meat eater, I identify with ancient people living on this island since 8000 BC (okay, it wasn't an island until later). It's that magic stuff called grass which creates iron and protein rich meat and dairy. That's why we British are also lactose tolerant, unlike most people in the world. Is it just me or should we all be cynical of these plant based claims. Liver has probably saved my life so just what is a good diet? I was up at the local farm a few days ago where 750 ewes are birthing and 1500 lambs will be seeking a teat. These farming families rely on the meat industry and are caring, hard working and responsible. What an experience it was.
I don't know about cynical, but I do think that if people are eating US feedlot dairy and meat, they could notice a positive difference in how they feel when they stop, especially if much of it was "fast food." And until recently, meat was pushed as being something one Must ingest at every one of three daily meals, unless it was high carb cereal, toast, juice, being pushed by either the Cereal lobbies or the Juice lobbies. So culturally, there has been a huge emphasis on feedlot animal products. Not to mention "Instant" this and that, instead of cooking the actual food item in this rush-rush culture. And outside of the growth spurts of early childhood, milk wasn't emphasized as a beverage. Soda pop, then alcohol and coffee, were heavily advertised. And things that change our gut flora or GI tissue likely affect the ability to produce digestive enzymes. I *lived* on yoghurt when I was having ibrutinib digestive issues, yet years afterward, within a year of starting venetoclax, here I am developing a lactose intolerance even though I have eaten a lot of dairy throughout my life.
I think the "best diet" is something we need to find for ourselves, without going to extremes suddenly. I am reminded of an uncle who decided to "get healthy" and started eating massive amounts of broccoli one week, got awful stomach problems, and gave it up. As opposed to trying a moderate amount, then perhaps slowly increasing it.
I have been experimenting with different types of diets since when I was diagnosed in 2004. My goal was always to make peace with my CLL, and try to delay eventual treatment for as long as possible. So far it’s working, I am still in W&W after 17.5 years. My genetic markers are good, mutated, and I don’t have the dreaded deleted genes. My count progressed from about 12.5k to 22.5k in the first few years after diagnosis, my GP told me I would probably need treatment in 5-7 years. But then after I started a modified whole food diet, mostly organ, the numbers stabilized and stated coming down a 3-4 years later. My last white blood cell count was at 11k and lymphocytes at 8k, close to the original numbers at diagnosis. At age 70, my goal is to eventually pass “with CLL” not because of CLL. Making peace with it made the biggest impact psychologically that allowed me to live a productive life without fear and anxiety… best wishes to all… ✌️
So glad to hear that you are doing well and able to get on with life. CLL is a hard thing to come to terms with but the stress of living with it is so unhelpful and can lead to other health problems. Thanks for the injection of optimism, we can all appreciate others successes and it’s good to know that the outcomes are not always predictably negative. Isn’t this community wonderful a real beacon of light.
I changed my lifestyle and diet when first diagnosed as well. I was told exercise would help. I actually became an athlete. I trained for a Triathlon and finished it! While proud of myself, I don’t plan on doing another one.
I have ridden in a variety of cycling events, those I like.
My diet just changed again due to heartburn and acid reflux. I cut out rice, potatoes, and bread to reduce carbs. We eat fish, chicken, use Impossible Meat for meatloaf, and lots of veggies. Oatmeal with blueberries for breakfast. I have a larger lunch and smaller dinner.
I drink milk to deal with the heartburn. For me it works because I am not lactose intolerant and I can’t take the meds for heartburn - my eyes do not respond well to those meds.
And despite my bike riding, hiking, walking, eating a healthy diet (for me), my WBC continue their upward trek, now at 165.
Still in W&W, still hanging in there. I know it could be a lot worse.
Any chance you are sensitive to soy? With soy being a major component of animal feed nowadays, plus the Impossible Meat containing soy and pea protein, that could possibly be a source of irritation. In addition to the methylcellulose (it's a topical and ingested irritant) and if the "natural flavor" in Impossible Meat is an MSG analog, those can cause stomach irritation.
finarchemicals.com/msds/Met...
"Natural flavor" just means that the molecule giving the stimulation to our taste buds originally came from a food source. It doesn't mean the molecule isn't produced in a lab, containing trace amounts of potential toxins. The classic "natural flavor" is MSG. Found naturally in foods, it's now synthesized and added to foods in concentrations much higher than found "naturally". IMO if you are looking for a meat with a lower carbon footprint, get grass fed beef. It's better for your body, too. We didn't evolve eating concentrated soy and pea protein, not sure how much our bodies will or won't react to it.
ams.usda.gov/sites/default/...
You are also getting soy in your chicken unless you have a source of soy free, free range, pastured chicken if you are in the US.
I have no issues with soy. My stomach problems have occurred on and off for a decade or so, long before Impossible Meat was available.
I think it’s important to recognize that everyone has their own issues we are dealing with. My doctors are aware of my heartburn issues and that I drink milk to deal with it quite effectively.
I shared what I am doing but hesitate to make suggestions for anyone else.
We prefer to substitute Impossible Meat when we can for red meat. In stews, we use real meat but meatloaf works well with meat substitutes.
I agree, and am happy that people are willing to share what does and does not work for them! Gives us something to consider trying if/when having problems, instead of a random choice. I wish I could drink milk for stomach problems, but it appears over the past few years I've developed a lactose intolerance.
I was late to the drinking coffee in the morning routine as it turns out. I was still drinking milk with my meals until my early 30’s because I liked a cold beverage with my meals. I thought my husband’s coffee smelled wonderful but the taste was terrible, to me. After being married for 10 years, I finally started drinking coffee. Now I am limited to one cup after drinking my cup of milk first.
We are all lactose intolerant
You’re replying to a post that is now over 3 yrs old.
Please be aware that your user name has a very crude, objectionable meaning.
Newdawn
I love this I Believe in God's creation.....
I would love to eat a truly plant based diet because I know it is going to be the healthiest choice, particularly in the US where the practices of raising animals for slaughter are not practices that take into account the health of the animals, the environment, or the consumers any more than they absolutely must to be open for business--which is not a lot. However, I'm stuck in a hard place. I suffer from recurrent diverticulitis and the food that sets me off: beans/legumes. Any of them. I've tried taking digestive enzymes first, but it doesn't help much. I have IBS as well, so I feel the chain is IBS inflammation and subsequent diverticulitis as the colon inflames. Now that I am diagnosed with CLL, avoiding infections becomes even more crucial, and I fear no legumes. It's probably impossible to do a healthy whole foods plant based diet without them. Nuts would be my sole protein source--and tofu. Tofu does not bother me. But even hummus/ whipped to utter smoothness, and I'm in trouble.
Wow. Serious mixture of symptoms. Have you tried minute wty of lentils? Just teaspoon full. Adding legumes can be tiresome if there’s too much too soon
New to CLL
Ketogenic Diet and CLL
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