Hi we have just had recent diagnosis of CLL
Any dietary or supplements tips?
Have heard Green tea is helpful?
nutritional support/supplements for CLL - CLL Support
nutritional support/supplements for CLL
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kingfishermountain
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AussieNeilPartnerAdministrator
Welcome to our community kingfishermountain,
The best evidence by far, for any supplement to help with slowing CLL progression and reducing the challenges of going through treatment, is the exercise pill! healthunlocked.com/cllsuppo...
It's also quite common to have a lower than healthy level of serum vitamin D, so given our increased risk of having secondary skin cancers (a skin check at least annually is advisable), supplementing with vitamin D3 if you test low makes sense.
With respect to green tea, there are lots of past posts on this topic, because a Japanese green tea manufacturing company, Mitsui Norin, provided their polyphenon E pharmaceutical grade EGCG green tea extract for some limited clinical trials. These were done by Mayo Clinic with the research funded by crowd sourcing. Unfortunately, Mitsui Norin withdrew their polyphenon E capsules from the market. The Mayo Clinic trials showed some success, but because the product was withdrawn from sale, we have no long term data. Also, the trial settled on 4 grams per day of polyphenon E, which works out at some 20 to 30 cups of tea or so daily. You also tend to get gastric upsets on that high a dose of green tea, plus it can cause transaminitis, basically liver poisoning, which I've experienced on just over 2 grams per day of good quality green tea capsules. The principal Mayo Clinic CLL researcher warned people not to try green capsules "because we don't know what's in them". Supplements tend to be poorly regulated unfortunately, but at least in Australia, they are supposed to be registered with our Therapeutic Goods Administration, or the company can be fined or even closed down.
With respect to diet, the best advice is to eat a healthy, nutritious diet. That's unfortunately not the standard diet in most countries 
so generally we can find improvements in our diet. Just keep upmost in mind that there is no one diet which is suitable for everyone!
Neil
An excellent response by Neil.
I would summarise it as "EAT FOOD, NOT TOO MUCH!!
I would argue that you have to have a truly terrible diet that you would have a requirement for supplements of any king. Why line the pockets of shysters?
Also - Green tea tastes terrible to me
Your experience may differ. There is no reliable evidence of any real benefits for us.
(I meant to reply to the OP, but unfamiliarity with the interface has meant that I replied to Neil. Sorry about that.)
Hi! Please check my posts, comments and bio to see my take on the subject. If any questions just send me a private message.
I started with a poor prognosis and now my CLL is almost gone after 15 years. I have been watch and wait the whole time. My lymph glands are no longer a problem, they slowly melted away. I drink sencha green tea in the mornings, I drink a lot of it, and I buy it from Japan. I also audited a hematopoesis course and found there is scientific evidence to support green tea as an anti leukemia medicine. I do not recommend that you take an iron pill while you are drinking green tea, though, that can make you feel sick! If you need to take iron, take it at another time during the day. I wrote more about my journey on my bio if you are interested. You can also reach out to me in the chat. Good luck.
Very interesting bio, mdsp7. I drink green tea, eat beets everyday, used to drink beet root/ carrot/ ginger juice every morning, but I've been told V8 has stopped its production 😔 So I eat more beets & carrots & add ginger and curcumin in my cooking. I exercise daily. I've been fortunate to remain in W&W for 2 years now. My food choices may not cure CLL but they certainly make me feel better physically and psychologically.
Everyone is unique. I'm glad you have found something that seems to be helping you. Thanks for sharing!
I am interested in drinking the Japanese sencha tea. I am on w and w and wonder where do you get the tea from Japan. Online or at a store? I drink two or three cups of green tea now but it isn't Sencha.
This is the website: yuuki-cha.com/
I order a variety of the sencha green teas and also gyokuro green tea. When I brew the tea I cool the water down from 212 to 170 degrees or so and I let the tea steep for 5-10 minutes. I pour boiling water or very hot water on the leaves a second time and then add a little more dry tea. I add water as often as I like and make the brew in a 500 ml pyrex measuring cup covered with a plate. I just keep drinking it. I like the taste! Some of the kinds of tea are tastier, some are harsher, some are greener, but I like the variety. The company ships very quickly. Enjoy!
I am interested in your bio, but don't know how to find it.
You can access anyone's bio, simply by selecting their avatar 
Navigating HU
Besides being unmutated, what other markers do you have to be given a poor prognosis 15 years ago? You being on W&W for so long tells me you’re probably not 17p or 11q deleted. Do you get your liver checked often? I’ve read too much green tea could be problematic for the liver but sounds like you’re still doing great!
My white cell count was rising quickly and I had a lot of very swollen lymph nodes and was fatigued. It was 2008 so perhaps being unmutated with a rising white cell count and anemia (I thought it was probably due to heavy bleeding) may have been sufficient for a poor prognosis. I have 13q deletion and was tested as cd38 negative and Zap70 positive, so kind of anti-correlated.
5 cups of green tea a day shouldn't be any kind of problem for your liver. Massive quantities of ECGC extract may be, though. I drink the tea. Some people don't like it, but I like it a lot. But if you take any iron supplements, be careful not to drink the green tea at the same time, though, doing so makes both me and my husband feel very nauseous. Good luck, young man! I hope you will find a path to health and enjoy a long and happy life!
I’ve found this Beta Glucan 500 mg very helpful. Just 1 tablet daily with a full glass of water. Been on W&W 15 years
Clear
Early on when diagnosed and I went deep into research, I concluded that Beta Glucans were NOT something I wanted to take. I can't resurrect all the reseearch and reasoning but you might want to go deep into this as well. Neil might know this as I think he has weighed in on this subject before. I take AHCC but understand this to be Alpha Glucan, not Beta. Bottom line, neither of us really know if we are helping or not.
"Roughly 30% of patients with chronic lymphocytic leukemia (CLL) carry immunoglobulin receptors with highly similar primary sequences."
pubmed.ncbi.nlm.nih.gov/235...
One of those highly similar immunoglobulin receptors, which is what defines the stimulatory CLL B cell receptor antigen, is keyed to fungal Beta Glucans
pubmed.ncbi.nlm.nih.gov/232...
So there's a small subset of people with CLL for whom Beta Glucans can actually drive their CLL. It's about a 1 in 100 chance or so, but we do have one member who was very upset to find they needed treatment far sooner than anticipated. That happened just after she began supplementing with Beta Glucans and she was naturally suspicious that it was more than coincidental. It just goes to show how heterogeneous CLL is, and why what some of us consider helpful Notmuchenergy , could be dangerous for others.
Neil
Obviously the choice to take or not take any supplement is your own. I’ve taken these for 8 years and my counts have come down consistently. Thankfully my consultant haematologist is happy for me to keep taking these.
I can only speak for myself
Yet conversely, I take no supplements and my numbers came down consistently by 50%. From ALC of 24 to 11 in W&W over 8 years.
Well, sounds like probably you are not one of those 1/100 people noted in the studies Neil cites. Whatever works.
That is my attitude as well. I could show you a graph of my white cells and lymphocytes from my NHS patient access over last 15 years, but I would probably get pilloried
I believe you.
It's sad that you feel you might get pilloried for showing evidence of your good results. I think we ought to support one another when one of us is doing well using non-traditional methods that are available to all of us. Best wishes!
Thank you.
Interestingly doctors are now asking me what supplements I take
Lucky you. I've been ghosted by Patient Access and Patients Know Best. No blood test results from hospital during treatment, seems to only show whatever info the GP could glean from letters they have been sent. I can only see three out of 50+ blood tests results.
I asked my practice and they can get the results electronically from some hospitals and include them on my patient access
When reading information on supplements and posts from those that have had good results when taking them, please keep in mind that CLL is a different disease for all of us. Just because one person has success with a remedy or supplement does not mean that everyone will have the same response. By all means, do your research and keep informed; however, don’t get too disappointed if a particular supplement does not work for you when it did for someone else.
A healthy diet, appropriate exercise, a solid medical team including a CLL specialist, and a positive attitude will take you a long way on this journey. And be your own best advocate. Godspeed to you!
Becky, I agree. I would go a step further to say that just because someone remains treatment free from cll for a long period of time while taking a supplement doesnt even prove the supplement works for them. A relatively significant % of people with cll may never need treatment, including those who take supplements or those who eat french fries. Correlation does not always equal causation.
By way of example, someone who has a stroke within a week of a vaccine might certainly blame a vaccine. Yet people have about 800,000 strokes a year in the US alone, many among unvaccinated people. Only a study done under accepted medical methods can connect the two. Eating ice cream and getting sunburns correlate strongly. But does the ice cream cause a sunburn or is it that we eat more ice cream on hot, sunny days?
I have seen about a half dozen cll doctors since my diagnosis and have asked all of them if there are supplements I should take. All have said the same, that is, that I should eat healthy and exercise but that there are no supplements or special diets proven to treat cll.
Some supplements and diets can even be unhealthy. We tend to think of vitamins as good, I know I do. So a lot of vitamin C, D , B and A is good right? Not really, thousands of people are hospitalized each year with vitamin toxicity. I think green tea is healthy. Insofar as treating cll however, some studies have shown the amount of its possible cancer fighting ingredient needed to work is toxic to humans.
Vitamins are best gotten from natural foods, it’s hard to get too much vitamins that way. Some people might need supplements, there are tests that can be run to see if we have vitamin deficiencies. Another problem is that supplements are largely unregulated.
Of course, I support the view that we each ultimately decide what we eat and how we treat. I am not qualified to give anyone advice on what to eat or drink. I think people should consult their doctors on supplements.
The response by some supplement advocates to that advice is that doctors dont know everything and can be wrong. I cant argue with that. But for me, given the choice between the consensus of doctors opinions form the top cancer facilities worldwide vs a doctor who writes a book that says I can drink green tea or eat pomegranates or eat only meat or eliminates sugars or whatever, I am more inclined to follow my doctor's advice.
It is a personal choice and I respect the right of others to make their choice.
I agree with what you say, generally. However I would like to add that my oncologist started to make notes about the supplements I took and what I ate when my disease reversed its aggressive course seemingly spontaneously. She has helped me many times by being there for me during infection crises and has offered good advice on various health topics. My naturopath told me about drinking 5 cups of green tea a day and taking curcumin. These things helped me and I was not taking them at levels that are toxic. I think a lot of scientific studies have time pressure and want to demonstrate a result with a substance during the grant period. We may do okay with smaller, non-toxic quantities if we use foods consistently over time and do not rev up the cancerous cells with foods or exposures to toxic substances or EMFs that stimulate CLL growth.
For the first 8 years on w&w my wbc and similarly my lymphocytes rose from 37 to just over 250. For the last 8 years I have been on Beta Glucan. My lymphocytes are now 22 and wbc 30.
I can only speak for myself, but maybe ask a few more questions to get a fuller picture
Well said, Becky.
There have been indications that high polyphenol olive oil is or may be helpful. And some literature that lutein, chrysin, apigenin, quercetin each have some positive effect. But these may be in vitro (not the same as in vivo). I know of no solid studies for any of this. I subscribe to ConsumerLab that tests supplements (not all as there are too many); I try to look up supplements on the site to find recommendations and warnings because, as Neil mentioned and others, supplements are not regulated.
If you think you are lacking something in your diet then supplement it. If you eat good food all the time you don’t need to.
Don’t fall into the mindset that certain supplements will push treatment into the future or make you live longer. Your disease will run the course it runs. You could have the perfect supplement regimen and get CLL. You could take supplements and the disease progresses. This will mostly fall into the category of bad luck.
When it comes to treatment you want to be really careful about what supplements can put you in danger. Your doctor will tell you when the time comes.
You don’t need a positive attitude if you don’t want it. You are allowed to be angry, frustrated and grumpy. Again, your disease will go the course it goes whether you have a creepy smile or a frown. If you like being chipper then good. If you like to mope and rage don’t let people tell you that you need to be positive.
That seems to be my problem … I have a terrible appetite hence terrible diet so I’m now thinking I should just blitz some veggies and drink it as I don’t like many vegetables 😂
Sometimes I use a Vitamix blender, and put fresh cut fruits and vegetables and some hemp seed or chia seed or oats or yogurt or ice or green tea or cocoa powder in the mix. Tasty and fast and sticks with you for the whole morning. Some blends taste better than others. I refrigerate what I don't finish after stirring out some of the air bubbles, and try to drink it within a few hours. You can try this and see if you like it! Also you can cook carrots and ginger with some fried onion, and blend it up with some oats for a delicious fast carrot ginger soup. Greens can be blended too, much more palatable if you think you don't like vegetables. See what you can do.
My husband knew someone from college who became a doctor. Years later she told him: "Stay out of hospitals if you can. Eat your vegetables!"
I hope you get healthy soon!
Highly recommend that you read NATUROPATHIC ONCOLOGY: An Encyclopedic Guide for Patients & Physicians by Dr. Neil McKinney who focuses on "conventional" and Naturopathic treatments for cancer.
I was diagnosed with CLL during December 2021 with a WBC of 26,000. Currently at 13,000 WBC and headed toward early 2024 remission courtesy of EGCG and several other supplements
Dr. McKinney's book has been an excellent resource.
🤷♂️Not evidence. You could still need treatment at 13k or lower.
I am glad you have had good luck so far.
The "evidence" is that less than a month after using NFH EGCG and Carlson Gamma E Gems, (and. eight other items) I stopped having night sweats and stopped losing weight. My weight had dropped from 192 to 167 pounds.
I just finished a one hour session at 14 Hour Fitness and do not have fatigue issues despite having asthma.
Men my age and height normally have peak flow readings of 280-350. My peak flow this morning was 515.
My ND prescribed "supplement" regimen of ten items includes NAC, Reishi, Quercetin, Vitamin K2 and Vitamin D3.
My current "CLL regimen" has improved my asthma results (i.e. higher peak flow) while avoiding negative side effects from "popular" CLL drugs.
🤷♂️Maybe it did. I was just saying it isn’t evidence at the standard most people look for. Some dude on the internet.
What exactly constitutes evidence?
Dropping ALC count + RBC, hemoglobin, platelets and ANC within the norm and stable + shrinking nodes, spleen and liver when applicable. Some interventions can drive the cancerous cells into the nodes to hide, causing a drop in the ALC in serum but actually worsening the disease. Because the cancerous cells actually keep dying in the blood but they find a friendly environment supporting their multiplication in the nodes. But I guess you already know this.
Hi Iam year 8 cll green tea or green tea based drinks won’t do any harm at all. I also eat various types of berry’s
There is a researcher in the U.K. studying the extract made from Feverfew herb for CLL and the research is promising. I don't think they are studying the feverfew that you can buy at the health food store in tea form since they take the extract from it. Anyone can google UK Research on Feverfew extract for CLL.
You are right that it is not the "feverfew that you can buy at the health food store in tea form". From news-medical.net/news/20190... with my emphasis. It looks to be very promising research if it delivers in producing something that those who have tougher to treat CLL or who are running out of current options.
"The team’s protocol for growing, extracting and derivatizing parthenolide obtained from Feverfew is described in the journal MedChemComm.
The researchers used both established and modified methods to prepare parthenolide derivatives by adding primary or secondary amines to the compound. The drug-like properties of these derivatives were computed and then screened for the anti-leukemic activity against the refractory MEC1 CLL cell line."
It's nice to see testing being done against an actual CLL cell line!
From the abstract of the referenced research study, again with my emphasis; "A screening cascade identified a small number of the most active compounds and their properties, including in vivo pharmacokinetics and in vitro hERG liability, were compared against DMAPT. This cascade culminated in the identification of a new compound with good anti CLL activity, with fewer drawbacks than some headline compounds from the literature and with utility against drug-resistant disease."
Derivatisation of Parthenolide to Address Chemoresistant Chronic Lymphocytic Leukaemia (from 2019 working paper - not peer reviewed)
chemrxiv.org/engage/chemrxi...
Many pharmaceutical drugs are derived from natural compounds, but importantly, as the above research illustrates well, the pharmaceutical research is aimed at producing a patentable drug that ideally can be taken orally to avoid the additional cost, inconvenience and risk from IV infusion delivery. The challenge with oral delivery, is producing something that is well absorbed through the gut lining without causing adverse events/side effects, then is not quickly metabolised by the liver so that it can reach high enough blood serum levels for long enough to have a worthwhile effect.
Neil
I was diagnosed. with CLL during December 2021 while having night sweats, weight loss from 192 to 167 pounds and WBC of 26 ,000.
My new Hematologist said we would WATCH and WAIT until WBC was over 30,000. She scheduled next appointment for March 2022.
My Naturopathic doctor(ND) referred me to a Naturopathic doctor who treated cancer patient and told me to NOT undergo chemotherapy.
My new ND prescribed several supplements featuring. NFH EGCG (Green Tea Extract), CARLSON Gamna EGems (Gamma Tocopherol - 465 mg) and HOST DEFENSE Reishi capsules.
In less than two weeks my night sweats stopped and I stopped losing weight.
My ND recommended a diet featuring no meat (including chicken), organic produce, fish and "treated" water like reverse osmosis water.
I have not had any liver or kidney problems from the EGCG due to the Gamna Tocopherol Vitamin E.
As of November 2023 my is stable between 178-182 pounds, no night sweats and WBC of 13,000.
I hope to be below 11,000 WBC by end of January 2024 and in remission from CLL.
There is a LOT of incorrect information circulating about EGCG and CLL. You ARE REQUIRED to use the a special version/formulation of Vitamin E to avoid negative side effects from EGCG.
There are case studies showing EGCG works.
Dr. Neil McKinney has written an excellent book on Naturopathic medicine and cancer treatment.
For THIS CLL patient the correct WATCH and WAIT program featured EGCG and a special version of Vitamin E instead of a steadily rising WBC leading to drugs with harmful side effects or chemotherapy.
You are quite correct that "There is a LOT of incorrect information circulating about EGCG and CLL.", which I'd say is because people skip over the details in the Mayo Clinic phase 1 and 2 CLL study reports. Very few who try it, take anywhere near the 4 grams per day established as the effective dose for the phase 2 study. However when you say "You ARE REQUIRED to use the a special version/formulation of Vitamin E to avoid negative side effects from EGCG.", I've never seen this requirement mentioned. It certainly wasn't part of the CLL studies. Do you have any references regarding this?
Neil
A very good reference is NATUROPATHIC ONCOLOGY: An Encyclopedic Guide for Patients & Physicians by Dr. Neil McKinney.
On page 435 is a section entitled NATUROPATHIC LEUKEMIA SUPPORT which includes primary and secondary supplements for treating Leukemia.
Dr. McKinney cautions his readers that his book provides good reference material and to not accept its contents as the final word on Leukemia treatment due to on going research and newer treatments/supplements.
On page 162 Dr. McKinney addresses "mixed tocopherols"Vitamin E that my ND prescribed for me.
I have read several articles in which doctors state that EGCG damages the liver.
Competent Naturopathic doctors prescribe "mixed tocopherols" Vitamun E with EGCG to avoid harmful side effects.
My experience suggests that the standard of care for new CLL patients should be a personalized WATCH and WAIT program that incorporates EGCG, "mixed tocopherols" Vitamin E and other supplements (i.e. quercetin, curcumin,reishi,Vitamin K2, garlic, etc)
Case studies exist which detail successful health outcomes for CLL patients prescribed high quality EGCG like NFH EGCG SAP.
Thank you
I see that the book you referenced is in its fourth edition and just over 600 pages long. My concern is that the book attempts to cover many hundreds of different cancers. To cover all those listed here cancer.gov/types would only allow for about 3 pages per cancer, so the author's approach of necessity needs to be generalised. With respect to blood cancers, there are around 200 different types and you mention the author's cover of leukaemia, but CLL is a Non-Hodgkins Lymphoma, more specifically a chronic B cell Lymphoma. I've unfortunately seen naturopaths recommend totally wrong treatments for CLL, because they've wrongly based their recommendation from reported research on (usually acute) myeloid blood cancers - not a chronic lymphoid cancer.
The inherent problem with unproven treatments with chronic cancers like CLL, is that we know that about 30% never need treatment, so it's difficult to know whether unproven treatments have helped or hindered, particularly when there's a 1% incidence of spontaneous remission. Specifically with the clinical EGCG, trials, no effect on CLL was observed in about 30% of the participants. Further, unfortunately for those that did positively respond, there was no long term follow-up, because Mitsui Norin, the supplier of the pharmaceutical grade polyphenon E ceased manufacture of the supplement.
I mentioned never seeing a requirement for vitamin E when taking EGCG, however there is a mention of its use for the treatment of fatty liver medicalnewstoday.com/articl... which notes "Current research into treating fatty liver disease with vitamin E supplementation is inconclusive."
Neil
You need to read Dr. McKinney's book instead of assuming it lacks helpful information for CLL patients.
Starting on page 430 is an excellent introduction to how many ND's approach devising a treatment plan for Leukemia patients.
On page 435 is a sectioned entitled NATUROPATHIC LEUKEMIA SUPPORT that covers Targets of therapy that includes ( but is not limited to) Apoptosis off-switxh, stem cell regulators,p53, CD cell adhesion molecule,tyrosine kinase inhibitors etc
Unfortunately, most people have been convinced that the most effective CLL treatment solutions come from big pharmaceutical companies and any other solutions are inferior "supplements" lacking big pharma approval.
We have had very different experiences with EGCG MAINLY due to the fact that your CLL doctors lack the proper information/training to properly deploy EGCG in your treatment plan.
They need to read Dr. McKinney's excellent book.
I've been on a 2g-4g EGCG regime since diagnosis and, like you, my liver enzymes have remained excellent while my WBC/Lymphs have trended downward from my diagnosis levels. I also follow a diet similar to yours. That said, I'm curios about how much Gamna Tocopherol Vitamin E as well as EGCG are you taking, as I would like to make Kidney health a secondary priority? Many thanks.
I take 2 grams per day of NFH EGCG and 465 mg of CARLSON Gamma E Gems.
I've been taking green tea extract capsules and curcumin extract capsules orally for a few months, and they didn't help with CLL. I'm quite frustrated.
A clinical trial of 21 CLL patients given a commercially available curcumin capsules, showed no appreciable benefit from taking them - even when the methodology employed in the trial would have magnified any 'improvement'. healthunlocked.com/cllsuppo...
In the Mayo Clinic EGCG (pharmaceutical grade Polyphenon-E extract) clinical trials, about a third of the participants didn't experience any benefit.
Neil
Thank you Neil, you're absolutely right，People always hope that good fortune will come their way。
As an expert in this field, I've read some of the posts you've published these days and learned a lot from them. Thank you very much。
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