CLL and Diet/supplements

My consultant informed me there is no firm evidence that diet can impact on CLL, however I have read that some individuals have been sure changes in diet has helped e.g. No dairy, green tea extract etc. My view is that although there's no firm evidence certain foods can improve or make CLL worse that whilst we don't fully understand the condition anything is possible. I'm a coeliac and years ago nobody would have entertained the idea that eating gluten causes an immune response against the body. Does anyone feel they have had any success through changing diet/ taking supplements? Many thanks.

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  • After much deliberation, I take:

    1)4 Teavigo daily (150 mg EGCG) 2morn, 2 even,

    2)1 Centrum Silver Men 50+ multivitamin,

    3)1 Vitamin D3 400 IU (not 4000).

    I swear that the Teavigo makes my lymph nodes feel smaller.

    That gives me a psychological boost.

    I also drink glass or two of green tea / day.

    Taking the Teavigo makes me feel thinner…….. That’s my story! :)

    amazon.com/dp/B000JLA7Y4/re...

    Best Regards,

    Tom

  • I managed a 18 month regression my absolute lymphocyte count [ALC] went from 136K to 42K... I set back my CLL clock.

    Diet and exercise.. you need both parts... its about overall health, getting 'fit' if you like.

    Our knowledge has moved on from the tiny EGCG study... and my feeling is you might be keeping the lid on the CLL pressure cooker with a therapeutic dose, but we now know about clonal evolution, that killing off low hanging B cells with EGCG, may be selecting out more aggressive clones...

    In other words making CLL worse in the future.

    This is MY theory... maybe just Alternative Facts? 😜 Who knows.

    ~chris

  • Thanks for your reply Chris. Is there a specific article about clonal evolution? Has this been linked to doses of EGCG?

  • There is lots here on clonal evolution, or the work of Catherine Wu... try a search

    As far as EGCG and clonal evolution is concerned, there is no link.

    Also know that this approach is no longer recommended by Dr. Kay, because nobody knows whats in over the counter green tea, and studies have shown very high levels of banned perticides in Chinese and Indian teas...

    So.. know your doses, get you liver monitored and you take your chances...

    I think frankly you can do more positive with a nice long brisk walk ...

    ~chris

  • Hi Chris , thanks for your response. I teach Zumba Fitness classes and have a fairly healthy diet (always room for improvement) but just wanted to be able to focus on some sort of slight change that could make a positive difference. I'd actually started taking green tea extract a week ago but will reduce the dose until I've spoken to a CLL specialist. It's so difficult to know what to do for the best

  • I and many many others contributed funds to the Green Tea study, and while the results were interesting and there was a response in about 60% of patients, it was a pharmaceutical grade of EGCG a drug... not ground up tea leaves of unknown origin.

    I love green tea and drink it daily, properly brewed because temperature is critical or you get EGC ... you loose the vital G...

    Do I think it does anything to my CLL ...not in the least, but it gives me a few moments of pleasure and relaxation in a busy day, so it is therapeutic.

    Now.. about my Merlot cure... 🍷🍷🍷

    ~chris

  • More on the Merlot Cure Please. :)

  • Its a running joke... there is some indication that resveratrol was sinergistic with fludarabine, back in my FR days... I started having two daily glasses of Merlot ... Malbec or Shiraz would proberly have been better... 😃

    Purine analogs

    ncbi.nlm.nih.gov/pmc/articl...

    Quackwatch

    quackwatch.com/01QuackeryRe...

    Picks your poison and you takes your chances

  • Merlot cure. Now wouldn't that be something! 😀🍷

    Peggy

  • I'm with you on that Chris can't beat it :-)

  • Hi, I am just diagnosed and also looking at diet modifications. The green tea seems to be a popular choice. Looking forward to more information in this area. I feel like I have entered a parallel world - this is all so strange and hard to take in.

  • I'd say that most of us consider we have a good diet - until we get a cancer diagnosis. I'd also say that most of us can improve our diet (which also needs to extend to how healthy our weight is) and depending on how good our diet and weight actually is, improving both could considerably improve our overall health and quality of life. That was certainly the case for me.

    I don't think that we will ever find a diet that suits everyone - what works best for an individual will depend on their genetics and upbringing, in particular how their gut biome has been shaped by these influences - which is unfortunately very much a developing science.

    There's good evidence that some foods can exacerbate our CLL such as yeasts/fungi/ some varieties of mushrooms, so called medicinal mushrooms - it depends on whether our CLL cells have B Cell Receptors specific to molecules in those substances: healthunlocked.com/cllsuppo...

    I've created a collection of diet related references here: healthunlocked.com/cllsuppo...

    Neil

  • Thanks for your responses Neil. Interesting about mushrooms!

  • What is a balanced diet anyway? by Clare Collins, Professor in Nutrition and Dietetics, University of Newcastle: theconversation.com/what-is...

    Note in particular the very interesting comments, which largely come from people who are very knowledgeable about nutrition - and note how the referenced questionnaire just doesn't work with this audience.

  • There are many natural substances that kill CLL cells in a test tube. Do they in the body? I take many supplements that MAY have extended my time to first treatment which has not occurred yet after 6 years. Most docs are not up on this stuff and may be cynical. There are naturpaths. Ive done green tea, curcumin, (alternate days) aspirin, bee propolis...maybe 12 others. When I stopped for a few months my numbers got worse? Coincidence? Perhaps. It empowers me to do something and maybe its preventing other maladies since we are at risk. I would encourage your own research and I suppose there is risk in taking too much too many things re liver and kidney. I agree that anything mushroom related should be approached with caution though perhaps one day its immune stimulation could be relevant. There is no money big money in research for natural substances but other countries like Brazil tend to research this stuff. Good luck.

  • Thank you for your reply. I feel exactly the same, doctors don't really comment on these things because there's been no extensive research as to whether it helps or not. In the meantime at least I'm trying something I hope will help. I haven't heard aspirin before?

  • I'm pretty much of a sceptic when it comes to any sort of 'magic bullet' or supplement that can help, though please note - I'm not an expert. It's a personal opinion based on suspicion of snake oil traders.

    I do take vit. D supplement, as that is supposedly good for the bones, and we older people apparently don't produce enough of it - especially if, like me, you avoid the sun after a skin cancer. That's it, basically.

    I hope 'normal' mushrooms are OK though, and the yeast I use to make pizza - I'd hate to give those up!

  • Beta-glucan can stimulate B cell receptor and possible clonal expansion... its often found in probiotics... so be careful...

    pubmedcentralcanada.ca/pmcc...

    Previously on HU

    healthunlocked.com/cllsuppo...

  • Thanks for your kind effort in replying - but as I am not an expert in these matters, my head hurts after a brief perusal of those papers/arguments!

    I have no intention of taking any supplements other than (maybe) the simplest vitamin boosts, and even those only if there is a very good reason. I do hope that my predilection for 'normal' mushrooms or products containing yeast (bread, for example, or pizza) does not place me at greater risk. If it does, then members of the forum had better give up bread pronto!

    It can get a bit ridiculous, reading the literature on what one could/should eat/not eat!

  • It depends on whether your CLL cells have B cell receptors specific to molecules in the yeast/fungi, which only applies to some of us. For those sensitive, I suspect that the amount of the molecule in the small amount of bread yeast would be unlikely to cause problems, compared to what you'd ingest in a medicinal mushroom supplement. I enjoy about 200g of button mushrooms weekly and that isn't causing my ALC to climb rapidly, unlike what was reported by some members in this post:

    healthunlocked.com/cllsuppo...

  • Thanks for that reassuring reply! To the best of my knowledge, yeast and mushrooms (not supplements, which I would not take anyway) have not had any effect on me to date, during 4 1/2 years of remission!

  • Thanks for all the responses Chris. Lots of information but I feel very important to know so that a more informed personal decision can be made in relation to diet

  • There are two studies out of mayo clinic showing that green tea does work for some people.

    Healthy origins will send you a report showing the ingredients of the product.

    Also there is a website called consumer lab.com that also Tess and comments on different types of supplements. It gave high marks and good quality to healthy origins TEavigo green tea.

  • Thank you for your response:)

  • Boy am I the right guy to answer this! First lets assume that if we eat a very healthy diet that it may impact many important bodily functions that ultimately affect just how much strength we have to fight the disease and prevent us from getting other diseases, including other cancers! I went on a strict Macrobiotic diet, when I had very low platelets and red blood cells that were dropping like lead balloons! I was diagnosed in January 2016,at stage 1 CLL. After I gave up sugar,dairy,processed foods,meat and poultry,I lost 40 lbs within six months. My ALC came down 18% in 3 months,High blood pressure went to normal,glucose level came down 30points,cholesterol dropped from 200 o 100 in six months, acid reflux disease totally went away in 3 months, a life long poorly functioning liver went from a count of 92(52points above normal) to 40 within six months. MY PLATELETS went from 113 to 172 within six months. I couldn't even complete a full sentence without coughing just one year ago....a year later I am jogging 3 miles or walking the same distance 5x a week! I have more vitality and energy than I ever had before and I have some lousy counts and prognostic factors.

    Oh,I forgot to mention that My stage 1 was revised to stage 0 within six months. Exercise plays an important role too! But while my Macrobiotic DIET may not cure me,my oncologist just said,"your healthy lifestyle seems to have given you a new lease on life!" My GP said" You are the healthiest patient I have!" Now like everyone else I work at it....tell your consultant that diet absolutely influences how strong you are to fight the disease. That's not something to downplay.

  • What did you eat?

  • Well done for taking steps to improve your overall health and in turn improve your ALC. I'm presuming you don't eat dairy as part of your diet? Does this also include eggs?

  • I do not eat eggs and I don't eat dairy. I am on a very YIN anti-inflammatory diet. No dairy,no eggs,no meat,no sugar,no processed foods,no alcohol,no poultry. I EAT: Fresh caught local white fish(3x weekly),lots of green leafy veggies(especially Kale and watercress),brown rice,soba noodles,sour dough bread,root and round vegetables. Lots of squash. Burdock. Tons of almonds. Sea vegetables. TONS of NAPA cabbage. Miso soup. I eat almost exclusively organic....and I eat the freshest most wholesome soy products on the planet. Seriously,you haven't lived until you try a type of tofu called BRIDGE TOFU...it will knock your socks off....it tastes like cheese and really is delicious cooked as amain protein dish or uncooked, cold, on salads. But I also eat a ton of brown rice..which is just delicious and very healthy . Plus aduki beans,Chic peas,green beans,Almonds and pumpkin,sesame, and squash seeds. I eat all kinds of stuff. Lots of millet,lentils and oatmeal.The food is delicious and has some very anti- cancer elements to it. But I hate this CLL with a passion ...and I want to make my body very inhospitable to it. I am on a very strict type of healing diet,that most earthlings simply wouldn't want to adhere to. But I feel like a walking nutritional experiment and nothing would give me more pleasure than to see the disease's progression be very slow or reduced to just an annoyance. Time will tell ?? Who knows....but its worth a shot. If it works,I'll share what I experience with others. One year does not a miracle make. So far so good.

  • I like your thinking! :) thanks for taking the time to explain further. Best wishes

  • After my CLL diagnosis shock I decided to 'get healthy'. I flooded my body with nutrients from juicing carrots, celery, spinach, cabbage and an apple. Dropped the dairy and all simple carbs. I felt fantastic in about 2 weeks and by six weeks I had lost 32lbs. With the weight loss my blood pressure, cholesterol and sugar etc improved and my ALC dropped back to 38. My oncologist was shocked when I appeared 3 mos later minus 32 lbs - until he realized I was in much better health. I take a B complex, D, immunoglobulin concentrate, greenlipped muscle concentrate for joints and colloidal minerals. Also calcium,magnesium, k supplement. (However may drop this as the juicing should take care of need). I eat normally - i.e. Meat, salads some carbs - desserts at times but always drink the juice - I've stayed at the same weight and pretty much same WBC/ALC for five years now Only real concern is the dropping antibodies - currently seeing an immunologist and rheumatologist and will see a CLL specialist soon.

    Take care - hope this helps in some way

  • Thank you! Yes it does help. Interesting that you dropped dairy too. Do you also avoid eggs. I'm pleased that your results have been stable for some time and hope it continues

  • I should have added that I dropped the dairy initially - I now eat fermented dairy (kefir) and the occasional dairy dessert - I do eat eggs, some meat - trying to eat very low sugar, high fat but not quite Ketogenic - still juicing -drink green tea and ginger root tea as well as take a turmeric supplement - I think low sugar is the key for me - also I think we all need allergy testing -

  • Thank you for replying again, I appreciate it. Best wishes

  • Like all the other replies, I have found a combination of diet and supplements has helped me. I was diagnosed 7 years ago and have probably had CLL for around 10 years. For the first 6 years of diagnosis the readings crept up each time I saw my consultant. However, over the last year I have dropped the dairy, eat a tiny amount of fish occasionally and also take supplements. Green tea for a week, one day off it and then circumin/turmeric for a week. A day off then revert to green tea, as the two supplements "fight" each other. In the last year white blood cells and lymphocytes have reduced 25%. Red blood cells now normal. It may not work for everyone, but it's certainly helped me.

  • Thank you. I'm looking to do something similar to you and hope that it reduces my lymphocytes.

  • My question is, I am lactose intolerant so always drink lactose free milk...how does that work as far as a 'no dairy' diet ?

  • Lactose is only one ingredient in dairy products, but eliminating it can definitely help if you lack sufficient lactase to process it in your gut: en.wikipedia.org/wiki/Lacto...

    I'm not aware of any research on the impact of dairy products on CLL, so perhaps SuzeJc, jettyguy, Stretch1 and Mandy56 can share why they dropped dairy from their diet? I'll note that having your diet dairy free will really restrict what processed foods you are able to eat, because dairy derived additives are a common ingredient in a wide range of foods, particularly desserts and baked goods.

    Neil

  • NEIL, Macrobiotic people don't drink cow's milk,period. It's because milk is considered to be acidic and mucus forming,by some! Basically cows milk is fine for baby cows destined to become 1,000 lb adults. But even western science has implicated too much dairy as causing nasal congestion, being mucus forming and causing earaches in toddlers. I personally avoid milk,because in my case it made me feel bloated and out of sorts. It seemed to make my other allergies more pronounced,which is not something that i need,when I am waging war with CLL. I realize that some people love milk and dairy products. Whatever floats their boat! But if I can control the intake of things that lower my resistance or that spark allergic reactions,the stronger I keep my body when I need its reserves to fight CLL progression or to give me more fortitude to withstand any medical treatments. That's my reasoning. It's for sure my personal belief and I don't expect anyone else to agree with it,but it works for me.

  • Thanks for your reply Jettyguy, because it has provided some very important clarification to those reading this post now and in the future. The question posed was whether 'diet can impact on CLL' and questioning whether eliminating dairy (among other foods) could help. Despite quite a few respondents stating they're on a no dairy diet with some reporting improvements in their health due to their change in diet and exercise regime, no-one has provided references backing up why they have specifically chosen a no dairy diet to combat their CLL. Irrespective, congratulations on making such dramatic improvements in your health!

    I'm sure many of us can benefit from reviewing our diets. I also think that the science behind current dietary advice is in its infancy and needs to be more individually determined (with the new field of gut biome studies likely to result in huge breakthroughs). We need to be aware of the bias behind any dietary advice, unfortunately accepting that industry lobbying has influenced government advice both directly and through research funding influence.

    I'm well aware of the theory that dairy production increases mucus production and have been pressured by family members to reduce dairy consumption when I have a cold - despite not personally observing any change. I've gone through the challenges of an elimination diet and found how very hard it is to determine the relevant influences of different foods, stress, health, etc. I've also closely followed any research into this purported link and reputable research has found no association per the following examples:

    Mayo Clinic

    mayoclinic.org/diseases-con...

    Dr Ray Mullins allergy specialist interview by Australia's government ABC broadcast service

    abc.net.au/health/talkinghe...

    As Dr Mullins says, 'True cow's milk allergy is rare in adults. About one to two per cent of children are allergic to cow's milk. They tend to grow out of this by the time they are teenagers – often earlier – and the symptoms are severe, says Mullins.'

    And 'Mullins says that people who believe dairy products cause an increase in mucus production could try an elimination diet, although in his experience the results are "disappointing".'

    Eliminating milk is something we can easily try for ourselves, particularly when we have colds! From my elimination diet, I've found that drinking milk doesn't agree with me, but I'm fine on yoghurt and ice cream, etc. As Dr Mullins closes, 'Long-term dietary restrictions should not be implemented without supervision by a dietitan and medical advice, and must include nutritive supplementation in the form of an alternative formula for babies and calcium supplements for older individuals.'

    Neil

  • Hi Neil, for me I asked the overall question in my post because I can't tolerate cow's milk protein well but I have always allowed some in my diet. When I was pregnant last year I consumed more cow's milk protein than normal as I cooked a lot of calcium rich meals so that my baby received all the calcium he needed. My ALC increased a lot during this time. Maybe due to pregnancy, maybe due to dairy, maybe because of something else. We don't know because no extensive research has been carried out in either of these areas. I decided myself that my body is telling me it's not a fan of cow's milk and wondered if this would be impacting on my CLL, but since then I have read a lot of comments and feedback from people with CLL who believe that cutting out dairy has helped. I'm fine with goats milk but I've swapped for coconut milk for now. At the very least my body will be a lot happier without the cow's milk.

  • Since we are all studies of '1', it's impossible to make firm conclusions but it makes sense that a healthy weight, a diet free of too much sugar and processed foods and a daily exercise program can only make one healthier and more able to fight off disease. i used to take a high dose of green tea extract until I found out that it could cause harm to the liver. Now I enjoy the tea itself and drink several cups a day. I also take 2000 mg of Vit. D every day and 500 mg of Vitamin C. I'm off the medicinal mushrooms and am curious to find out if that will have a positive effect on my lymphocyte count. I keep sugar and meat to a minimum and try to not overdo dairy.

    The first year I was diagnosed I went on a juicing, no dairy, no sugar diet and didn't notice any great benefits except that I lost a lot of weight and I am already fairly thin so i looked like a skeleton. I believe that food is one of the great enjoyments of life and that, in turn, gives us a feeling of well-being which is just as important to overall health as all the diets in the world.

  • I'm sorry you didn't notice a difference in your CLL results from changing your diet. I agree that a healthy diet and lifestyle will help overall. I guess the rest is for us to make an informed personal decision about and see what happens.

  • Thank you for everyone's comments. I've definitely learnt a lot and I'm mindful of much more.

  • Hi, I was diagnosed CLL/SLL at the end of January 2017 age 46. Lymphocyte count of 5.72. It was my enlarged lymph nodes in head, neck and armpits which triggered my referral to get checked out. So since then I've improved my already good diet by going totally organic, eating salads full of watercress, spinach, kiwis, mango, goji berries, and cooking immune boosting foods. And I've been drinking 2 cups a day of Matcha green tea powder. I've just had another blood test and my lymphocytes are now 2.53. I also asked for printouts of my old blood tests that I'd had done in the past - from 2004 my count had been steadily rising. Now it is the lowest it's been since 2011!

    So I believe that the diet has made a difference. I'll see what my haematologist says next week!

    I have just started on wheatgrass and I haven't improved my fitness yet - that's the next thing!

    Good luck!

  • Hi PopEine and welcome!

    With your low lymphocyte count (some of us have counts over 300 and are still untreated), and your enlarged nodes, I'd say you have the 'SLL form' of CLL/SLL. This post explains the history behind the dual naming: healthunlocked.com/cllsuppo...

    By all means look at what you can do to improve your diet, but bear in mind that you need a lymphocyte count above 5 to be considered to have CLL and CLL specialists aren't particularly concerned at changes in our lymphocyte counts until they exceed 30, only measuring doubling time when they pass that threshold. Trends matter more than individual counts, which can vary far more than yours have done without any efforts being made to improve them. (Early on, I used to get stressed about changes in my lymphocyte count and it was lower than yours at diagnosis. I now have over 8 years of blood test history in which I can see how much lymphocyte counts can vary from test to test.)

    You might like to keep track of your blood test results using one of the available spreadsheets discussed here: healthunlocked.com/cllsuppo...

    If your lymphocyte count trend is downwards and more importantly, your nodes remain stable or shrink in size and your red blood cell count/haemoglobin and platelet counts are stable or improving, then you can be really confident that your lifestyle change is working!

    I'd encourage you to improve your fitness as many of us have found this pays significant dividends, particularly in reducing fatigue. You may also find this three part series on the many things that you can do to improve your quality of life on the CLL journey helpful, starting with this first post: healthunlocked.com/cllsuppo...

    Neil

  • Thank you so much Neil for all the information, I really appreciate it! :-))

  • Thank you for replying PopEine. Best wishes with you appointment this week too!

  • Good evening had a question on the wheatgrass I see you posted this a couple months ago, have you tried it and what results have you seen.

  • Hi Notlikingcll

    I've been taking 1tsp of wheatgrass a day in fresh orange juice - haven't noticed any difference - I take it because it's so full of vitamins and minerals, all to keep immune system strong! I've even managed to get my teenager to drink it. My next blood tests in June so I'll see what the levels are again.

  • Hi PopEine, I hope that your tests went well in June

  • Hi all, I just wanted to take the time to provide an update on my results as I know that diet changes and the impact on CLL has been a hot topic for some of us. I went for my six monthly blood tests a few weeks back and in one sense was hugely relieved to find my bloods are stable (I got so emotional I couldn't speak by the time I walked into the consultant's office so it was a huge relief), but on the other hand I'm disappointed there hasn't been an improvement in my results. Firstly because we were hoping that pregnancy complications (retained placenta for approx 6 weeks following birth and losing 2 litres of blood) had temporarily pushed my lymphocytes up. Secondly because I cut out all dairy for six months and also take low doses of green tea extract (my liver enzymes are being monitored as these have been elevated in the past). I'm going to continue with a dairy free diet because I've felt much better in myself since making this change (dairy hasn't agreed with me since I became a coeliac) and maybe it has helped in some way.

    I hope you're all doing well

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