Last week I ate fruit with vitamine C, I exagerated with quantity and felt really bad. My lymph nodes were swallen and I felt very big fatigue. I m still on watch and wait (I was diagnosed with Cll in January 2018) and I wish to stay on it as long as possible. So, if anyone has a list of food that can harm patients with CLL, please send it to me. I had a control at my hematologist this wednesday and she told my CLl was stable.
Thank you for your answers and best wishes to all of you! 😍🤗
Lela
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There are nearly no foods that can change your CLL. Many are claimed by dubious sources to affect all cancer, but except for extremely high concentrations of green tea (EGCG) and Tumeric (Curcumin) there are no other foods proven by clinical trials to change CLL. (Those two foods can actually damage the liver in some patients, so they are often discouraged by knowledgeable CLL expert doctors).
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Some complimentary actions are the best & proven methods to improve your survival with CLL. They are regular moderate exercise, maintaining normal weight and a balanced diet.
A single cup (8 ounces or 250 ml) of brewed green tea typically contains about 50–100 mg of EGCG. Dosages used in scientific studies are often much higher, but exact amounts have been inconsistent (11Trusted Source, 16Trusted Source).
Daily intakes equal to or above 800 mg of EGCG per day increases the blood levels of transaminases, an indicator of liver damage (17Trusted Source).
One group of researchers suggested a safe intake level of 338 mg of EGCG per day when ingested in solid supplemental form (18)
Both turmeric and its main active ingredient, curcumin, are generally considered safe and without any serious side effects (14Trusted Source).
However, some people may experience side effects when they take them in large doses as supplements.
Turmeric
Turmeric contains around 2% oxalate. At high doses, this may contribute to kidney stones in predisposed individuals (15Trusted Source).
Additionally, not all commercial turmeric powders are pure. Some are adulterated. This means that cheaper and potentially toxic ingredients have been added and are not listed on the label.
Studies have revealed that commercial turmeric powders may contain fillers such as cassava starch or barley and wheat or rye flour (16Trusted Source, 17Trusted Source).
Eating turmeric that contains wheat, barley, or rye flour can cause adverse symptoms in people with gluten intolerance or celiac disease.
Some turmeric powders may also contain questionable food colorants, which are added to improve color when the powder is diluted with flour.
One food colorant frequently used in India is metanil yellow, also called acid yellow 36. Animal studies show that metanil yellow may cause cancer and neurological damage when consumed in high amounts (18Trusted Source, 19Trusted Source).
While the toxic effects of metanil yellow have not been investigated in humans, it’s unlawful to use it in the United States and Europe. (20, 21Trusted Source)
Some turmeric powders may also be high in lead, a heavy metal that is especially toxic to the nervous system (22Trusted Source, 23Trusted Source).
Curcumin
Curcumin supplements are considered safe and no adverse side effects have been reported at low doses (10Trusted Source, 25Trusted Source).
One older study in 10 adults found that taking 490 mg of curcumin daily for a week caused no side effects (26Trusted Source).
A new review from 2021 also found that taking doses of around 1,000 mg of curcumin per day did not lead to any apparent adverse effects (27Trusted Source).
Yet, a small proportion of people may experience some mild side effects at higher doses. These may include:
Digestive issues. People may experience mild digestive issues such as bloating, acid reflux, flatulence, and diarrhea at daily doses exceeding 1,000 mg (12Trusted Source, 28Trusted Source, 29Trusted Source).
Headache and nausea. Doses of 450 mg or higher may cause headache and nausea in a small number of people (12Trusted Source, 30Trusted Source).
Skin rash. People have reported a skin rash after taking a dose of 8,000 mg of curcumin or more, but this seems to be very rare (31Trusted Source).
Extremely high doses of 1,170 mg per pound (2,600 mg/kg) of body weight daily for 13 weeks, or up to 2 years, may cause some serious side effects in rats. These include an increase in liver size, stained fur, stomach ulcers, inflammation, and an increased risk of intestinal or liver cancer (32Trusted Source).
However, the dose makes the poison. There is currently no evidence that lower amounts of curcumin cause serious side effects in humans when taken over short periods, though human studies on the long-term effects are lacking.
Not sure about the Tumeric but there is no evidence of any issues from just drinking green tea. Asian people drink gallons of it and live longer lives than western people. Taking large amounts of EGCG extract may be a different matter as is taking Macha powder. Matcha is essentially eating green tea leaves (ground to a powder) as opposed to making tea out of the leaves!
my hematologist told me to avoid all fruit with vitamine C because it stimulates formation of Cll cells. It is not forbbiden, but we shoudn t it big quantity of it.
Interesting as I have never heard anything even close to this; to the contrary, been under the impression that vitamin C supplements may be beneficial, and I am betting you are not large enough to eat fruit with vitamin C to harmful excess. Wonder if anyone else heard this.
interesting. I go to a world renowned researcher at M D Anderson and he has never mentioned anything about vitamin C. Do you see a CLL Specialist? Not sure his advice is accurate.
I also go at specialist, Kinda Bašić, famous in Croatia, and she told me not to exagerate with vitamine C because it feeds the cancer cells. She told me it s not forbidden, but not to eat a big amount of it. I ate about a one kg of fruit containing vitamine C and after that felt very bad. That is my experience, maybe you wouldn"t have the same effect. It also seemed strange to me and that s why I wanted to hear your experiences.
Lela, J1015 and Vlaminck , there is evidence that vitamin C stimulates lymphocytes so it is sensible to avoid megadoses of vitamin C when you have CLL. Given vitamin C is an essential vitamin, you would also want to avoid a diet low in it, as that can cause a very unpleasant disease called scurvy. Eating fruits or vegetables high in vitamin C is highly unlikely to have any effect on CLL in my opinion. Of related interest, one alternative treatment approach for CLL is IV vitamin C. It's expensive and a couple of members who tried it reported no improvement (or worsening) in their CLL.
'The Nobel Prize in Chemistry 1954 was awarded to Linus Carl Pauling "for his research into the nature of the chemical bond and its application to the elucidation of the structure of complex substances" '
Per the same site, "Eight years later he was awarded the Peace Prize for his opposition to weapons of mass destruction."
Per the Hierarchy of Evidence pyramid, the interest in vitamin C and cancer came from the lowest hierarchy - 'Expert opinion' from Linus Pauling: healthunlocked.com/cllsuppo...
Per en.wikipedia.org/wiki/Linus..."In his later years, he promoted nuclear disarmament, as well as orthomolecular medicine, megavitamin therapy,[12] and dietary supplements. None of his ideas concerning the medical usefulness of large doses of vitamins have gained much acceptance in the mainstream scientific community."
I would imagine eating a kilo of almost any single food at one sitting within a short time period might give one indigestion. Fruit, or meat, or cheese, or bread, cookies, ice cream, whatever.
why would more than one kiwi harm you? Is this based on what a doc said about vitamin C turning into CLL cells? I'm suspicious. Anyone else given this advice?
If you are going take higher doses of EGCG and/or curcumin, try to get a third party tested brand that is not adulterated with contaminants and check liver tests frequently. One study has shown benefit with a Mediterranean diet, but maybe who eat that have a healthier lifestyle already. It's a diet I recommend for almost everyone with or without CLL. See: cllsociety.org/2018/09/the-...
Hi, I’m a 66 yr old male and am on w&w. Diagnosed in 2004 I have 13q & 11q atm deletions. My Count rose steadily to 79k in 2017 when I fell out with my new consultant (I’m in the UK) and I was referred back to my GP (hopeless - he had to google my condition in front of me). Fast forward to the pandemic - it scared me! I weighed 18+ stone 255lbs and after obtaining my records from the oncology clinic I discovered I had an hbA1C of 44 (very pre diabetic) I was also hypertensive but not on medication, I realised action was necessary! I went on to a keto eating regime with time restricted eating (no snacks 12-14 hour eating break 6pm to 8am) and in 200 days I lost 90lbs. My A1C returned to normal, my BP fell below 120/80 within 3 weeks of cutting out carbs and best of all my count dropped by 30% to 55k. I still eat zero carb and time restricted eating and fast regularly. My last blood test showed a further drop in count to 39k so for me, this has been a great success and I will continue.
I have never felt as well as I do know, loads of energy, great sleep, regular exercise and no worry at present about rising blood count, in fact, I’m looking forward to my next blood test to see how much further it’s dropped!
Please check out the work of Prof Thomas Seyfried of Boston University and simply search Keto & Cancer on YouTube - and make up your own mind.
first of all I want to congratulate you for your great success!👏👏👏 You must have a very strong personality to do manage to do that. I don' know whether I could do the same, but I can promise that I ll try. I work almost the whole day and I eat a lot. I have noticed that carbohidrates make me feel worse and I started to reduce them.
The important lesson for overall health never mind any effects on CLL is to transition to a real food diet. No added sugar, no manufactured food or particularly seed/vegetable oils. Keto can be animal or vegetable based, the important thing is to ensure you supplement electrolytes when you first start Keto to avoid ‘Keto flu’ caused by shedding water weight and consequently magnesium, potassium and sodium as the glucose levels in your blood return to normal.
It is hard to cut carbs but the benefits are fantastic and if you can manage 60-90 days you are very unlikely to ever go back - remember, there is no such thing as a carbohydrate deficiency.
Eventually I became completely carnivore and found all of my allergies disappeared, people tell me how young I look and my wife, who cuts my hair says my bald patch is growing back! Good health takes hard work but the benefits can give you a far better quality of life, please try!
On Monday - tomorrow I have a free day and I ll read all about it and watch the youtube channels that you reccomended me and of course I'll respect all you have written (as english isn't my mother tongue, I m not sure whether I understood the things refered to seeds and oils - are they also forbidden ?)
I hope I can yask you anything during the course of my diet.
If you take home the basic message of getting your body in shape by improving your physical fitness through exercise and better food choices (less highly processed foods, which generally means less carbohydrates), then you are on the right track.
that's true. This summer my blood result was much better because I moved my body a lot and ate healthier food. It s high time to change my everyday routine. Thank you so much for your answer.
Nothing is forbidden - all are choices. Vegetable/Seed oils are inflammatory, I suggest you try stick to coconut, olive and avocado oils. Processed (packet) foods often contain vegetable/seed oils so try to stick to real food ideally as fresh as possible, this course of action gives your body the best chance of healing itself.
Doctors are trained to dispense drugs to cure illness, they receive very little training in nutrition and tend to dismiss its value through ignorance and peer pressure. Big Pharma and Food cannot make profit from good nutrition so suppress it at every opportunity.
I hope this helps, be patient and remember food addictions are a real thing - if you fall off the wagon don’t blame yourself, take a deep breath and try again - it’s worth it!
Hi Lela, we all wish it was as easy as controlling your CLL through your food choices. But if you want to know about food and what is good for you, (perhaps even for your CLL) and what is bad for you (perhaps for most everything else too),then please read this book:
Hi Lela, I think that there is no ‘one size fits all’ when it comes to diet. I was diagnosed with CLL in 2014 although I could have had it as long ago as 2005 due to unexplained enlarged lymph nodes. I’m still on watch and wait.
I eat a plant based diet with fish occasionally and my partner and I eat organic foods as much as possible. In the winter I only want fruit, that is, seasonal fruit such as apples and pears which are cooked. We eat a lot of beans, e.g. kidney beans, black beans, aduki beans cooked with a variety of vegetables and plenty of dark green leafy vegetables which we steam.
I feel well on this diet. In 2015 I had a bad bacterial intestinal infection due to eating chicken livers which were not cooked properly in a restaurant. I was trying to bring up my iron levels at the time as my Haematologist was concerned about a drop in my haemaglobin levels which in hindsight was probably due to a change of diet when I gave up dairy foods after diagnosis. I went on to develop ulcerative colitis as my immune system could not clear the bacterial infection.
I paid for those chicken livers big time!
After nearly five years of using Chinese herbal medicine my ulcerative colitis cleared up which has enabled me to eat a more healthy plant based diet. For expert advice on healthy eating with cancer and other cancer protocols check out chrisbeatcancer.com
Chris used diet and other things to prevent cancer coming back after surgery. He did not want chemotherapy. He was successful in what he did and he currentlu has a series of 10 videos on different cancer related topics which are free to view until midnight Pacific time tonight.
thank you very much for your detailed answer. I'm so sorry you had to pass such a hard way to get rid of that bacteria, but also you learned a lot about nutrition and now you can help other people. Thank you for sharing your experience and for being such a great support.
Wishing you all the best, I'm sending you greetings and hugs! 😍🤗
I'm afraid I need to inform you that Chris is a very successful con artist when it comes to his claims about dietary changes curing cancers. As you can read here: sciencebasedmedicine.org/ch... Chris had successful bowel cancer surgery, opted not to have the recommended adjuvant chemotherapy that would have slightly improved his survival chances and then built a very lucrative career, claiming that his diet cured his cancer, rather than his surgeon's knife.
Someone even went to the trouble of analysing changes in his website to show that he edited out testimonials when advocates of his advice died, so anyone trying to determine survival statistics gets a favourably distorted version. See: healthunlocked.com/cllsuppo...
Hi Neil, I get what you're saying and I have signed up for a package from him. I think I have enough experience to know that I will not necessarily follow his advice to the letter. For example, I have a low body mass index so will not be able to follow all of his fasting recommendations. I think he was young and relatively fit when he got cancer and could manage 'hardcore' fasting as he could afford to lose excess body fat. I will expect to have a dialogue with him through his online forums and he does give a money back guarantee after six months. It can also be a very lonely place when I want to do natural healing and it is difficult to get information from people who claim to have healed cancer (there are lots of them!) about exactly what they did and the pitfalls they faced on the way.
If by "I get what you are saying", you appreciate that Chris has founded his entire enterprise on a lie and you are just following his dietary advice to improve your health then that's fine, but that's not what you share in your following explanation. Please understand that CLL is rightly considered an incurable cancer for very good reasons. It's difficult to study CLL in people and much of our knowledge is actually assumptions based on mouse model studies that seems to check out. More recent studies from research method breakthroughs is adding greatly to our understanding, but these breakthroughs take time. Research scientists were misled for decades by assuming their studies of human CLL cells taken from blood samples were representative of what happened in the nodes and bone marrow.
CLL cells do die, but they also survive a long time. They also enter a dormant phase, when they don't do much, as is the case when they are circulating in our blood stream. When I was diagnosed back in 2009, one popular theory of why CLL was incurable, was that there was a CLL stem cell that was immune to CLL treatments. Given B cells were only affected by treatments until they matured into plasma cells, it made sense. Nowadays we know that CLL cells do an excellent job of surrounding themselves with nurturing nurse cells in their specially crafted microenvironment in the nodes and bone marrow that help keep them alive during treatment. It's very easy to kill CLL cells in the blood, but treatments vary considerably in their ability to kill off CLL cells when they are in their nurturing microenvironment. I strongly suspect that to cure CLL, you need something that can reach those dormant CLL cells and overcome them when they become active, which also means isolating them from their nurturing microenvironment., That's why BTK drugs (acalabrutinib, ibrutinib, etc) are so successful. They inhibit active CLL cells so that they lose their adherence to their microenvironment niche and enter the blood stream, where up to a month or so later, they die. BTK treatments also are slow acting; only 10% of participants in an early ibrutinib trial achieved uMRD after 4 years. I expect that's because you need these dormant CLL cells to awake before they can be inhibited and enter the blood stream.
There's an approximately 1% chance of spontaneous remission, or more correctly about 2% for those who are IGHV mutated, given the ~50:50% split at diagnosis. You can't get IGHV mutation status tested on the NHS until needing treatment, but if you are CD38 negative on our flow cytometry diagnostic test for CLL, you have around a 60% chance of being IGVH mutated. In my opinion, your best chance at a cure through natural means, is to maximise your fitness via exercise and diet and hope that your cytotoxic and natural killer lymphocytes can overcome your CLL. Problem is that CLL cells drive these cells into exhaustion - another reason CLL is so difficult to cure. As I've said many times over the last 10 years, newly diagnosed folk first look at their diet, because it's relatively easy. Exercise is considered too difficult/time consuming, but the best evidence for beating the cancer odds lies with exercise!
I'll pit my knowledge of CLL against Chris Wark's any day, but I know who is the expert in building a very successful online business through unethical means.
You could also probably improve your chances at a spontaneous remission through splenectomy. Should you come across someone else who derives income from encouraging following a particular CLL specific treatment protocol, which also incorporates exercise (and which nearly everyone ignores), note that this was an early treatment that improved their survival, based on mouse model studies that M D Anderson in the US used with some success when regular options failed some 20 to 30 years ago. Thankfully we now have much, much more effective treatments, which are increasingly becoming available to you in the UK.
Hi Neil, thank you for your very detailed reply. The information about how CLL cells survive and how they behave was never given to me when I was diagnosed in 2014. I was told that it can’t be cured and was told that people didn’t need treatment when they are well as experience had shown that people didn’t benefit from treatment when they are well. The Haematologist then wrote to my GP saying that I had a “somewhat poor prognosis” because I have an IGVH unmutated gene. I was infuriated because he wrote this in a letter to my GP without discussing it with me.
CLL is now impacting on me more because I get tired a lot and my white cell count has doubled in a year and I don’t know why this is. I also had Ad breast cancer last year and I had a mastectomy but refused chemotherapy afterwards. I have other health challenges - I have cerebral palsy from birth which impairs my mobility and I walk with crutches. I also have impaired vision with partial sight in one eye only and blind in the other eye from birth. A few years ago I was told that if I had chemotherapy there could be a risk of the corneal graft in my right eye rejecting and I need this to see with! I also have chronic glaucoma. One of the eye drops I’m currently using for glaucoma has a possible side effect of lowering the red cell count. My red cell count was within normal range but has recently gone slightly lower than normal range.
I would like to get my white cell count down to what it was before my breast surgery last year. I was hoping to do this through Chinese herbal medicine, possible dietary changes and I think I should go back to the gym as I had let my membership lapse due to the pandemic.
I will try to find out if Chris has worked with people who have CLL. I am not expecting a cure for CLL. I would like it to be manageable without treatment. I’m worried about orthodox treatments as the Consultant told me that the ones that target the CLL cells do have side effects,
Thanks for providing all that personal background explaining why you are interested in taking this path. Unless your preference is to help someone with similar challenges to you, you might prefer to protect your privacy by sharing your post only with this community. This post explains how: healthunlocked.com/cllsuppo...
With regard to your concern about side effects, that's pretty well inevitable with any treatment that could work unless the treatment is very selective in its targeting*. Modern CLL treatments are very selective yet can still cause side effects in some people, while others report none. You don't know until you try.
I'm not comfortable with you seeking treatment advice from someone who is not medically trained and per healthunlocked.com/cllsuppo... hides the truth about his failures. If Chris suggests treatments debunked in this reply:healthunlocked.com/cllsuppo... you'll know he doesnt know much about CLL.
Neil
*A treatment side effect might be used as the primary reason for another treatment and then the original treatment effect becomes a side effect. This can be seen in off label use of drugs.
Hi Neil, can you please send me any info that you have about any teas or supplements that can help with CLL and the white count? You mentioned that you had used green tea in another post but you didn’t say how much you drank.
Here is a paper from top CLL research specialists from over a decade ago on maintenance therapy for CLL, which covers the research for the EGCG extract from green tea. It's outdated by the subsequent development and approval of BTK and BCL-2 targeted therapies, plus later generation versions of anti-CD20 monoclonal antibodies, obinutuzumab and ofatumumab. Also subsequent human CLL studies on turmeric didn't show any appreciable benefit;
You'd need to drink somewhere between 20 to 40 cups of green tea to achieve the 4 grams per day of EGCG used in the Mayo Clinic trials and you'd need to work with your doctor to arrange monitoring tests to ensure you weren't dangerously stressing your liver with transaminitus. You can also expect gastrointestinal side effects. Unlike the modern targeted therapies, EGCG isn't selective in its effects.
The point I'm trying to make is that CLL is tough to get rid of. CLL cells are very nearly the same as healthy B cells. Even the best designed third generation BTK inhibitors can cause atrial fibrillation and reduction in clotting in effectiveness. You need more than changing your diet to have a marked effect. Taking a high dose of anything to target CLL will unavoidably target other body cells and potentially cause unacceptable side effects. Anything you take, be it natural or engineered, that doesn't come with some side effects probably isn't helping reduce your CLL burden.
Hi Neil, just to let you know that I've cancelled my subscription to Square One chrisbeatscancer.com. I got in touch with his Support Team and it was cancelled without further question. I just have to wait for my refund to appear in my bank account but have got a refund invoice as confirmation.
Re: CLL drugs. I have not been offered any yet by my Haematologist and I don't know anything about them. I will make an informed choice when I get to that point.
Although I am not aware of any studies related specifically to CLL, I have seen my ALC numbers go down when I eat broccoli almost every day. Search "broccoli cancer" and many scientific articles come up. This is not CLL specific but since we have a higher chance for other cancers I think it makes sense to eat an anti cancer diet. Which I do. Wishing you well, Lela.
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Following LeoPa's “On CLL, diet and possible connections.”
Excellent CLL Video
“CLL & Heartburn” ??
The Impact of Diet on CLL
