Diagnosed with CLL in October 2017 and the doctor said I don’t need medication. He mentioned turmeric and green tea can have a benefit but couldn’t legally or ethically tell me how much to take. I am at a loss and would appreciate help.
Need help dosing turmeric and green tea for CLL - CLL Support
Need help dosing turmeric and green tea for CLL
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Mwagner
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AussieNeilPartnerAdministrator
Plenty of posts on this topic; try these:
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
As you'll discover, the lack of regulation of the herbal/supplements industry in most countries makes finding a reputable supplier essential - and that is why Mayo Clinic don't recommend taking green tea capsules despite their phase 1 and 2 studies showing that it helped most CLL patients on the trial...
Neil
Mwagner, the therapeutic doses are very high, but I taking just double, sometimes triple the normal preventative doses-- and I am guessing that you are not at stage 4 yet. I have done a lot of research on green tea and curcumin (the part of turmeric that heals), and found a study that was done...will try to find I again and post. It was concluded that it is best to take green tea supplements for 3 successive days and curcumin for the next 2 days and then start again with green tea. There is a reason why it is more effective that way. Also apparently Curcumin is harder to process than green tea. I am being very general here and apologize. But possibly you could find a herbal specialist who can guide you. (I was diagnosed with stage 4 about 3 months ago, as my spleen enlarged enough and lymph nodes swollen throughout my body I feel and look OK and still work. I am taking a double dose of green tea mornings and double dose evenings, and doing that with curcumin supplements on successive days. My white blood count has not changed in that time -- last tested 3 weeks ago. ( I was scheduled for treatment but in the first minute of IV drip, I had a reaction, could not breath -- unusual, so have not gone further with it.) A naturopath who prescribes such therapies (often working together with medical treatments) has promised to give me a 15 minute free consult by phone. But in person consult is $400. I feel I can get the information for free. The amounts in the tests are available online but I would want someone in person to confirm these amounts. (Mayo clinic has done studies with Green tea with positive outcomes.) Again, I am being too vague here but keep in touch.
Thank you very much for your reply and sharing your experience and insight. I’m at stage 0 with elevated white blood cell count. I agree with alternating turmeric and green tea. My next challenge is to find a recommended dosage and supplier recommendation. Herbal supplements aren’t required to prove batch to batch repeatability to ensure the same amount active ingredients are in each tablet. Also, some supplements don’t control for pesticides.
I wish you all the best and would love to keep in touch.
Jason Sabin, reputed to have recovered from CLL, had his spleen taken out and then recovered. So chin up. Good idea to pulse turmeric and green tea 3 days two days. Don't forget turmeric c activated with pepper. And green tea, ginger and turmeric is another synergistic combination a cording to book, Beyond Aspirin, by a guy from Vermont. Basically the book is about anti inflammation. It listed rosemary, Tulsi, oregano and other anti inflammatory herbs, some of which work synergisticly. Another synergistic combination is sold as Protantim made of 5 herbs, turmeric, green tea, bacoopa, ashwaganda and was the 5th ginger??? Have to look it up, but the proportion is all important, protandim claims. And their recipie had appeared on line. The special recipe is said to "open up the nrf2 pathways" that make your body MAKE antioxidants by the billions. And this same nrf2 pathway can also be openened by fasting and excersize. So I do fast intermittently, which means I drink a zero calorie beverage like tea or coffee, (and I do question the value of coffee for us since it detracts from the ability to absorb iron by 60 percent, green tea by 40 percent apparently) and I don't eat till 2pm. I might have a small amount of raw, fresh orange juice if I'm struggling with hunger. Certainly all raw till 4 pm and lots of it after 2 pm. Then I fill up till 8 or 9 pm. And this can be one or two times per week. This takes stress off digestive enzyme making and allows yr system a chance to put out other fires.
Exercise does the same thing, but how much excersize activated nrf2??? "Younger Next Year" toots every day lots of it but not how much exactly and you'd have to be retired to go on wild exciting exercise like that every day.
Just diagnosed CLL and I see your post is from five years ago. Can you please update on your Health if open to Sharon, and Also, can you shed light on whether the green tea/curcumin regimen is helpful and how can I find more detailed information? Ty!
Sorry for the typo. I meant if you are open to sharing. Also, anyone else meeting this post, please feel free to comment as well. Do you have all been down the path that I am now treading, as well as others who have been newly diagnosed
Hi Healthydesire,
Welcome to our community. We know what it's like to face an unexpected CLL diagnosis. In fact quite a few of us have shared our feelings after our diagnosis. I've linked to some of these in this post: healthunlocked.com/cllsuppo...
There are more useful posts in our pinned post section here: healthunlocked.com/cllsuppo...
How CLL is managed varies considerably from country to country, so when you have the time, please share the specifics of your diagnosis and your country, as that will assist us to better support you. This link enables you to update your bio: healthunlocked.com/profile/...
With respect to green tea and curcumin, I've used both. A fairly recent Australian clinical trial of curcumin was very disappointing. The encouraging EGCG/green tea results reported over 10 years ago, used a pharmaceutical grade EGCG presentation which was withdrawn from the market. Importantly, there has been a revolution in the treatment of CLL in the last 10 years. Chemo has been replaced by targeted therapies that work extremely well.
Neil
I just celebrated 5 years since my CLL diagnosis and remain on watch and wait. I take tumeric more for aches and pains and general health. Any specific questions?
well if you are at stage 0 then just taking a larger dose than normal people would take already helps. I doubt you would be able to take too much, as the therapeutic doses are very large and probably unnecessary at your stage. As the huge doses might have some effects down the road. Studies for all the newer treatments, both ibrutinib or obinuzutub (spelling?) and the natural supplements are not that long term, as they are so new. You are doing fine by even thinking of this course of action. You most likely are aware that many people at stage 0 stay there for years, even ten or thirty. So stay healthy. And value having been warned of your condition. you might even live a better life now than before with this awareness. Was it your specialist or family doctor who suggested this (just my curiosity), and what city are you in?
I have read that green tea supplements in high doses can cause liver issues. This has been an issue using it for weight loss. I am thinking that doses in the 1000 mg per day range have caused problems. I am in stage 0 (just diagnosed about 6 months ago, 68 year old male). Four months ago I started taking tumeric (800 mg) and green tea supplement (325 mg) daily, but have not been taking them long enough to see any result. I have not noticed any issues yet with my CLL. I go back for a checkup on Jan 5.
Elam,
Thanks for the reply. We seem to be in the same age bracket and diagnosis. I’m 67 with I think stage zero. I am going to adjust my take to alternate turmeric and green tea. Not taking both on the same day. I agree that high dosages may cause issues so going with 400mg of green tea and 1000mg of turmeric, alternating daily. Value everyone’s opinion since this is far from settled science.
I think the best option is to be healthy, eat well, exercise, and keep inflammation to a minimum.
All the best and keep in touch.
Thanks. I read the posts about alternating doses. I think that was how the trial was done. Do you know the reasoning behind that?
Thanks for green tea info. Teaspoon of nutritional yeast daily and twice daily at first, loads yr system with vitamin B so that when a slight surplus lands at the lymph nodes it will draw out the waste from the lymph. Lecithin, in eggyolks and animal brains, has vitamin Bs as do whole grains. The vitamin b is in the bran or outside skin of each grain or groat of oat or wheat, etc. You have to soak the grains, whether it is rolled or a groat to subdue the seed's protective anti nutrient phytin. Phytin is an enzyme that protects the seed from germinating until there has been a down pour in rain and the ground is saturated with water. So the antinutrient phytin disolves after 8 hours of soaking and lets us acces the B vitamins in the brown sees coverings
I am 67 male dx 18months stage0.
WBC in range of 20, stable so far but RBC and other blood parameters on slow decline. They were normal before but now below normal.
Can u advise me manufacturers of green tea and curcumin supplements? I am in India and could not find them. But I want to try for few months. I wish to be in lucky 30% of us who escape treatment..
regards
vinnet
Hi I was diagnosed at age 69 & confirmed by the VA that it was ‘Agent Orange’ related..like the poster in my Vietnam Vets group states ‘I was killed in. Viet Nam but I just haven’t died yet’...gotta laugh at that cause there’s nothing I can do about it anyway....
Regardless, I am in stage 0 with no symptoms except fatigue. White count has gone up to about 27k at this time..Hemotologist tells me that when diagnosed in later yrs, CLL can most likely not affect you as badly as when dx @ earlier age..
And in between all of this I had heart valve surgery at end of 2016...Am taking Curcumin for past 6 mos..ck out ‘Golden milk ‘ recipe online..easy to make several cups & appears to help...I will b taking the naturopathic course if needed..I worked in health care for over 35 years and know the good & the bad of that industry....Further, since CLLis a cancer and cancer feeds off sugar, I suggest you also ck out on Ted Talks, a presentation on anti angiogenesis treatment of cancer, which has been in experimental stage for over 10 yrs but the nutritional info is invaluable. The knowledge will make u want to know more
Hi
My husband was diagnosed with CLL 10 years ago. The VA says it was not related to his military service. (He was next to nukes for three years.). In the VA manual they say All leukemia Except CLL. We are challenging this determination with them. When did you get the determination? Was it just the Vietnam vets who qualify for the CLL determinations?
(He served after that war.)
PS
He has taken green tea pills for 10 years and his numbers are stable. We will check out the Golden Milk, thanks Nancy
AussieNeilPartnerAdministrator
onu1tadi2 , Elam , Mwagner , there is evidence based information on this topic. If you are going to try Green Tea/EGCG and/or Turmeric, then you'd be wise to follow it.
In short, the Mayo Clinic phase 1 and 2 trials on EGCG used 4 grams of EGCG per day with early stage CLL patients and found that the therapeutic response was dose related - the higher the dose, the greater the response. The trials also found that EGCG can cause transaminitis - elevated ALT and AST liver function test results, so anyone taking high/therapeutic doses should have these blood tests monitored by their doctor.
There's no defined 'preventative dose' of green tea; you need to take a therapeutic dose if you hope to see any effect on lymph node size or lymphocyte count - and not all trial participants experienced this. (see below for more on this important aspect.) Please read the referenced trial paper mentioned in my second and third references in my reply above.
The use of Turmeric/Curcurmin to slow the progression of CLL is experimental and based on in vitro, not in vivo testing, in other words, there's been no clinical trial on human subjects. From this 2009 paper: ncbi.nlm.nih.gov/pmc/articl... "These results provide a preclinical foundation for future clinical use of these compounds in this disease." Likewise using it alternatively is based on the finding from this paper that it worked best this way on CLL cells and in a 10:1 ratio. Using EGCG and Turmeric together had an antagonistic effect - the effect was somewhat cancelled out when the CLL cells were exposed concurrently, while exposing the cells alternatively had a synergistic effect - a better effect than either alone. The half life of both curcumin and EGCG in the blood is only a matter of hours, so alternating daily should suffice. Read the last paragraph before the acknowledgements in the above paper. Importantly this paper warns that "Sufficiently high doses of EGCG and of circulating curcumin will be necessary to overcome stromal protection in vivo." In other words, you need to take sufficiently high enough doses to overcome the way CLL cells protect themselves in the body. This is why we need clinical trials on human subjects.
Importantly as Cllcanada has repeatedly warned, taking ECGC (or turmeric for that matter) could cause clonal evolution of CLL cells. ANY exposure of CLL cells to something which will kill them off selects out clones that are resistant, which is why watch and wait is arguably the best approach. If you are going to take something to try and kill off CLL cells, it needs to be enough to hopefully prevent these resistant clones from developing and perhaps alternating Green Tea and Turmeric in therapeutic doses might do that - but we just don't know without clinical trials. Again, as the paper warned, it is difficult to get a therapeutic dose of turmeric - it needs to be combined with pepper and or fat to get better absorption into the blood stream.
I've been taking about 2 grams of EGCG daily for nearly 9 years (a higher dose gave me transaminitis) and I haven't seen my CLL progression rate change markedly in that time. (I had a 'normal' FISH test result, so no good or bad prognostic markers. Perhaps that makes me less susceptible to clonal evolution - who knows?) My ALC is gradually climbing and my platelets and haemoglobin levels are dropping, but my nodes and enlarged spleen haven't changed noticeably in size, so if EGCG is having any effect on me, it is limited to controlling node growth and not slowing bone marrow infiltration.
Neil
Thanks Neil for the very helpful info on EGCG. I just started taking EGCC about 6 mo ago but only take 325 mg. You stated you have been taking 2g a day for 9 years. I'm very curious which product you are taking. As you know, it's difficult to find a good and safe green tea supplement. It appears from your experience the EGCC has at least kept your nodes and spleen at a minimal level. I take such a low dose at this time, don't think it has changed anything. However, since I started my Hemoglobin has slowly reversed and is going back up.
What I can order in Australia is unlikely to be available where you live, but I'll PM you...
Hi AussieNeil, thanks for your warm advise here and glad to hear you are well. I am diagnosed with CLL1 for a year, lymp nodes now appears over neck and armpit. No treatment needed at this moment. But my nodes on neck are growing in size, I would like to try Green Tea extracts and curcumin. I am in Australia and I can buy only Curcumin 600mg but no EGCG are selling in shops here. So do I need to buy EGCG on line and which brand you would recommend?
And should I take 3 days of EGCG and follow by one day of Curcumin? I really hope to try these to see if the lymph nodes would shrink as I need to work and facing customers everyday🙁
There have been no in vivo trials alternating EGCG and Turmeric, just the one in vitro experiment...
I was just diagnosed, but think I've had this CLL for about 18 years. Im 61 yr old female. Nutritional yeast and lecithin which have B vitamins are good for cleaning out yr lymph nodes. Lecithin also good for yr liver to repair itself.
Chlorophyll looks just like hemoglobin and we shud reasearch if it carries oxygen. Can be bought in liquid form or in green vegetables. It stops bad breath therefore cud be related to supplement ing the work of hemoglobin???
Reasearch has been done on turmeric and is sold as protamdim whose recipe of green tea, bacopa, turmeric... 5 herbs is the best ratio... thanks for the alternate days green tea plan. Will research. Turmeric and black pepper and fat is a new combo for me. All the more to study.
Neil, on the 5 to 2 ratio. Is that 5 days of green tea and then 2 days of turmeric? Thanks J.R.
That's what I was doing, but that's just for my convenience in remembering what to take when. 
So based on the 10:1 ratio do you take 200 mg of turmeric. Or if one takes 4 grams of EGCG then you would take 400 mg of turmeric?
Yes, only the ratio is for the active ingredients: EGCG to curcumin.
• in reply toAussieNeil
You need to be very careful with Green Tea.
Here's a recent AU cautionary tale on Green Tea possible side effects!
abc.net.au/news/2016-02-14/...
abc.net.au/news/2016-02-14/...
My advice would be to talk to your GP about the risks versus benefits.
Below is information on Green tea I have posted in the past. ECGC and Turmeric can oppose each other.
Make sure to get your liver panel every 4- 6 weeks to make sure there are no problems. (AST, ALT).
Per your interest in green tea options see the types shown below. Note this is not medical advice and only what I did myself. I am not a doctor.
Please read the Mayo clinic phase 2 study paper as well.
ncbi.nlm.nih.gov/pmc/articl...
Healthy Origins Teavigo green tea supplements have the most ECGG with no caffeine for the best price ( you can get it on Amazon). Teavigo is also made by another but is much more expensive. The actual Teavigo powder is made by a Japanese company in Japan.
The Now brand is the best value. It has 200 mg of ECGC see but 4 mg of caffeine. I would take 2000 MG (10 pills ) of the Now brand in the morning and then about 1500 mg ( 10 pills ) the Teavigo go in the early afternoon. Papers have shown one gets the most amount of ECGC if you take it on a empty stomach but in the clinical trials the stop that for possible stomach problems.
I would also drink about 6 cups of strong green tea a day to give an additional 500 mg of ECGC. Surprisingly the basic Lipton and even the Decaffeinated Bigelow tea had a fair amount of ECGC see at about 80 mg a cup. I happen to really like the Rishi super match brand from a flavor standpoint. It said in the consumerlab.com Report that the nylon tea bags takes out part of the ECGC. I also drink it from Raw tea so the nylon bag is not involved. I just use a loose tea holder. You can buy it in raw form as well. Pure Matcha Green tea is good but I get tired of it after a while. Depending how strong your tea is it can give somewhere between 60 to 120 mg of ECGC.
I founds these through the consumerlab.com website that I joined. It cost about $40 per year but they have a very good articles on all supplements.
I would also taking high-dose ECGC with Curcumin every other day but that increased my ALT liver panel so I stopped. The paper from the Mayo clinic on combining it is only done in vitro - in a lab. So I would stick with green tea only.
In the Mayo clinic paper the people got good results over all although 4 eventually had to get treatment per the paper. The green tea seem to help for my CLL but unfortunately I have a very strong version. 17P deleted. I have trisomy 12 as well. It gave me more energy as well.
I was diagnosed a year ago but will start treatment within the next few weeks. A targeted therapy clinical trial combining Ibruvica and Veneticlax. My WBC counts have rose from about 10 to 90 over the last year. I have a rather large swollen lymph nodes as well.
Hoffy,
Thank you very much for your informative post. I have been a member of this site for only a few days but, have gained a lot of information and much to ponder. I just have to put this into action.
I wish you well on your treatments.
Nutritional yeast and lecithin have vitamin B s that clean yr lymph nodes. Lecithin, in egg yolks, are good for rejuvenating liver regrowth.
Do you have a reference? Thanks!
Nutritional yeast has several vitamin Bs which you can find on line. And I refer to a book I read years ago put out by Prevention Magazine in USA, it went through ALL of the things that each vitamin did. I'll try to get the name better next time I visit this site.
It did occur to me on my last visit that there is no point in saying anything without a reference, and not just to the book, but to the footnotes of the group that did the scientific research that found the one of the B vitamins acts like a pump that starts the movement of the waste fluid in the lymph. Lymph has no pump like a heart.
I'd like to know how to cleanse the spleen, since that's pretty standard in our CLL process, is to get a congested spleen
With CLL, our spleens can sometimes become enlarged, not congested. Our spleens filter our blood and remove aging red blood cells and platelets, so enlarged spleens filter out these earlier than would be the case with a normal sized spleen. This increased filtering contributes to the falling levels of red blood cells and platelets seen in CLL. Should we need treatment, our spleens shrink back in size.
Our bodies are self cleansing; detox and cleansing protocols are a scam:
sciencebasedmedicine.org/th...
Great idea to provide references where possible, so others can read more if they are interested.
Neil
Tell me how it works.
Hi Hoffy. How ya doing? It's been 5 months. Just answered yr question about vitamin b above. Has anyone told you about how good the vitamin b 12 in liver is for us cllers? Got that from Dr. Gerson in "The Gerson Therapy". Tried it too. Get charged with energy from liver. Raw liver is even better with all the enzymes and iron. And juicing collard greens! Wow! Is that ever good for us. All organic though. Apparently chlorophyll looks a lot like hemoglobin though I haven't looked up both molecules yet to see for myself. Sooo much to do.
Take care, dear, and sorry it took so long to respond. I've been on a tight schedule juicing and excercing and trying to get my elusive insurance to pay.
I just take vitamin B12and my numbers went up nicely .
I am vegan based on the China study , n of 1 and nutrition facts.org of dr Greger.
Hope all is well ,
Hoffy
I read China study and was going vegetarian gradually at the time of my diagnosis. Now I'm reading The Metabolic Approach to Cancer by Dr Nasha Winters, and it is excellent. She promotes a keto diet with meat because carbohydrates are converted to glucose and keto diet means yr burning fat, supposedly. However I think I remember reading elsewhere that absolutely all food turns to glucose, fat turns to glucose too, cuz that's what fuels our brain...glucose only. Cancers feed on glucose is the problem.
On a keto diet, urine on a keto stick will indicate if you are burning ketones which may indicate there is less glucose about. If you are taking an effective B12, then you are eating an animal product anyway.
Metabolic Approach to Cancer is about much more than burning ketones. There is intermittent fasting, saunas and other plans for detox liver and kidneys, and lists of superfoods that effect apoptosis and how. All organic of course, which is the hard part to change for me. The organic selection is small and expensive.
What numbers went up when you started Vit B? I want my wbc to go down. I'm still trying to understand the blood panel my oncologist did do, for $5000 and I see nothing on it I recognize like vit D, vit A, iodine levels which are the only things I can work on nutritionally. Since the oncky said there was nothing she could do, nutrition is all we have.
MD Andersen is doing research on the keto diet for cancer. It may work but I think it’s hard on your body in the process as well but so far there is no good evidence - as far as I know .
With that said I personally know someone who brought her white count down from 150,000 to 50,000 or for six months on a raw low sugar vegan diet. She got her diet from the hippicratic institute in Florida. (So?) In the book N of 1 similar diet is he used with high does green tea and other supplements .
To get your vitamin D and B 12 checked you have to specifically ask the doctor to check them. If there is an integrated medicine group at your practice they are much more open to these kind of tests. I’m also told there are some discount places where you can have duck test done for cash .
Be well,
Hoffy
The Gerson Therapy practice of eating raw calf's liver "was discontinued in the 1980s after ten patients were hospitalized (five of them comatose) from January 1979 to March 1981 in San Diego, California, area hospitals due to infection with the rare bacteria Campylobacter fetus. This infection was seen only in those following Gerson-type therapy with raw liver" : en.wikipedia.org/wiki/Max_G...
With regard to "The Metabolic Approach to Cancer", I suspect my thoughts would align with Doug Corty's 3 star review ( Amazon Top Contributor: Health & Wellness on June 30, 2017) : 'I have mixed feelings about this book. The authors support the use of the ketogenic diet but there is only one 11 page section devoted to describing it. There is evidence that this may be effective with some types of cancer. However, this book actually doesn't have any evidence that any of the authors' methods have been effective.'
Hoffy said much of what I was to share,i.e. liver panels, green tea on empty stomach, usefulness of independent testing lab ( I subscribe and noted they recommend about a half dozen each of Green Tea & Curcumin brands (PM me and I'll look them up). Over the years I have learned this info little by little as well as a little more. I've learned:
1) For me Green Tea on an empty stomach may be good for efficacy but not for my empty stomach (found new empathy for pregnant women from resultant morning sickness). I try to have at least a piece of toast before taking my 800 mg. (400 EGCG). Take another 400mg 4-6 hours later. Do this daily.
2) Bioavailability of EGCG is increased when Vitamin C and/or Fish Oil is taken in conjunction. Have the research article that concluded this, which also included some other ways to rev up the absorption (ones I can't remember & I myself don't include). Will try to find it if you want.
3) I take 1500 mg of turmeric on the same days as the Green Tea which but later in the evening, usually 6-8 hours after the tea supplement. Usually take it 5 days/week.
4) Bioavailability of turmeric is boosted a lot by taking it with black pepper (the pepperine, piperine, bioperine with some brands I believe are basically the same). Also very important is that turmeric is fat-soluble and taking it in pill form with a glass of water will give very little impact. I open a capsule and mix it in warm olive oil, then usually add greek yogurt and fresh fruit for a nightly dessert (tastes good, not like curried yogurt).
Surprised you had a physician recommend. Best I ever got was a shrug and a "do what you want. Can't see it doing any harm." This I believe is because they don't usually have scientific evidence (can I say that since Trump's minions just banned the words 'scientific-based' and 'evidence-based' from being used at the CDC) they need to safely prescribe or recommend. With Mayo Clinic's clinical trial as an exception (see clltopics.org for history) credible scientific research will always be lacking in a capitalistic system as there is little monetary incentive for drug companies to do clinical trials on chemicals that they can't patent. So doctors don't have the needed agency approvals to recommend "nutraceuticals" especially with any specificity.
What I've also noticed anytime I start delving into the science of supplements, medicines, or diseases, I can see how the chemical complexities of what's going on in the human body and the additional interactions of chemicals from foods and pills with our bodies and all the variables known and unknown, can make it next to impossible to say anything definitively about what a drug will do. Remove the proper research and the likelihood of things working are diminished from there. So usually when I take these supplements in the back of my mind there's a voice saying "oh well, what the hell, give it a try". My current version of this EGCG/Turmeric regimen has been for only 1 year but will say during that time my ALC #s have remained in the 60's (for first 5 yrs since Dx went from about 10 to 60).
Lastly will say, when it comes to taking supplements, there is one case I know of where it brought a patient's CLL from cells numbering in triple digits all the way down to MRD negativity. That case is written about in "N of 1" an autobiographical account by Glenn Sabin, who currently runs a cancer website
us9.campaign-archive.com/ho...
-gene
Gene,
Just wanted to thank you for an informative post, thanks for taking the time. I go back to my oncologist for the first visit since my diagnosis in October. At the time I was kind of shell shocked and didn’t comprehend all he was saying. I am starting a list of questions, any ideas? Thanks again and happy New Years to you, yours, and your health.
Mike
# 1 is to understand what "bucket" you are in and therefore what prognostic tests you should make sure you get.
Wait... this is a better way to answer your question. When I was diagnosed my first research was on the now inactive website clltopics.net run by a scientist who's husband had struggled with CLL (she was the one who got the Mayo Clinic to do a trial on EGCG and got individual contributors to fund it... before GoFundMe was a thing). Her site is a great primer to knowing what you need to know and and knowing what you may not know so that you can know what to ask. On the home page, I believe, is a link to something like 'everything you need to know about CLL'. She was terrific at explaining complex scientific processes in simple easy to understand ways. Give it a try.
-gene
Gene,
The website is no longer in existence
Mike
My fault - it's not .net, it's .org... clltopics.org. Sorry
Here's the homepage: updates.clltopics.org
-gene
Gene,
Thank you very much for the link. I found the primer and history about CLL to be very useful and a ‘must read’ for all recently diagnosed folks like me. I wonder why it is no longer active?
Mike
The story may be somewhere on the site. From what I remember Chaya Venkat's husband had relapsed many times and at that time (early 2000's?) had no choice other than stem cell transplant, which ended unsuccessfully. After his death.. or possibly during his Tx - she felt that her scientific knowledge and her journey uniquely qualified her to start an informational blog. So it was out of a charitable instinct. She became very well known in CLL circles and became a crusader in a number of causes including getting the Mayo Clinic to study green tea.
Then after a decade or so, "without a dog in the fight" and overwhelmed by the time she had to spend, decided to "retire" and do the things most retired people do, like enjoy the rest of her life
-gene
clltopics.org - no longer active, and information about treatment is dated, but lots of good stuff there. Chaya started the site well before her husband passed away and kept it going afterwards. Her daughter was also active maintaining it for a while.
Gene Sabin has also said, in interviews, that his regimine could kill the next person, and he worked closely with doctors of traditional medicine.
Yes he makes it crystal clear that he is not advocating his regimen to anybody - that he's worked closely with mainstream doctors and those in the integrative medical sciences over many years to come up with his "formula". As for killing the next person, I think it's only because the amount of supplements he takes would likely wind up with the person choking trying to get them down.
Seems a bit off the rails, but that was his path and it's nice to hear a success story even though it's next to impossible to pinpoint the reason for that success with the vast number of complex chemical interactions going on in his body at once. I don't think many if any will try to replicate. For me, I'm a minimalist. Just try to exercise and eat healthy without going extremes and I sneak in some green tea extract and turmeric (and Vit. D) daily figuring from what I read it would probably do more good than harm. Then I rely on my body to do what it can do to fend off cancer cells and in the future hope to have them fended into oblivion with the help of modern medicine.
I read Glen Sabine s book too. That is why I wanted to know how you take the turmeric and green tea. Efficacy matters now. Could you think about where you read how to do this? I'd love to know. I had been taking green tea and turmeric together 2 to 3 cups a day even before diagnosis, so efficacy matters or I wouldn't have got CLL at all.
You've gotta read Dr. Nasha Winters book The Metabolic Approach to Cancer. It is FULL of deep nutrition information. We need iron which is best taken with vit C but is not metabolized with the caffeine in green tea. So i take iron and more C at night.
And you have to work the whole body with all the vitamins. Get sunlight to make vitamin D, not too much sunburn cuz CLLers have a propensity for melinoma, and supplement with the freshest codliver oil you can find. Cuz we need A too. Over the last couple years I've had a stream of little temporomandibular joint, complaints, the right shoulder was crunchy, all indication of vitamin A shortage. So I'm slamming vit A down till I test on the highest possible end of normal for A. Homemade fresh organic carrot juice, about 32 oz,4cups, a day which you have to take Omega three fish oil with to help yr body make the vit A. And yr right! What is the chance yr going to hit everything u need just right? You open those turmeric capsules and mix it with oil for greater efficacy. Then you think we'll what else can I do? We've been told there is no cure. And then yr ALC levels out thanks to all yr work. Tell me when yr ALC turns the corner and goes down. I'm motivated. I'm working out to climb 5,000 ,ft Mt Kathadin in Maine. Thermogenisis should be good...breaking a sweat once a day.
Stay organic, awaiting yr reference, and I will get the name of my book about bit b cleaning lymph. But Dr Nasha Winters is much much better. "Six Brazil nuts" every other day, soaked over night for enzymes, cuz they are full of selenium. Gotta have that. Nasha believe in testing for efficacy too. Can't wait to hear from you Dana
"What is the chance yr going to hit everything u need just right? "
******
Right! u r not!
Our bodies and these chemical compounds and the process to break the chemicals down and the interactions between chemicals are all too complex for getting things completely right. Guess we just don't want to get it mostly wrong.
For me, I just gained bits of info in fits and starts. Perhaps I read about maximizing efficacy from my subscription to ConsumerLab.com or it could have been a medical journal that spoke of Vitamin C, and/or Fish Oil would help with the green tea capsules & that it also did better on an empty stomach (though that has made me nauseous at times). Then on this site, I think, I learned about the contra-indications (if that's the word) of taking Turmeric and Green Tea at the same time. I do Green Tea AM and Turmeric PM but most here seem to do one day one and another day the other.
Finding answers to things you are just learning about is both trial and error and trial by fire. You probably know how it is - google one search word and suddenly it's 4 hrs later, having been thru 4 hrs worth of websites & are now suffering from information bulemia.
A big takeaway for me was learning how little effect there is if you take an oil soluble supplement w/ water & vice versa and how Vitamins D, E, K & Turmeric are all oil soluble.
The amount of mg (grams more like it) for EGCG is based on Mayo Clinic trial and hard to replicate by buying pills cause you might have to take like 15-20 per day to get their dosing and getting the "therapeutic" dose by drinking the tea would likely have you visiting the restroom 15-20 per day.
Anyway, I'd plug in "green tea or EGCG and turmeric or curcumin into this search engine and see ALL the many comments of this topic, many from folks who are more expert, scholarly, and thoughtful than me. I'd also contact Glen Sabin. I did and he was very nice & helpful (we found out we had a lot more than CLL in common and when he found out I had an MBA in marketing he invited me to consider the possibility of assisting him in his mission, which I never considered considering that I wasn't expert, scholarly, or thoughtful enough).
Hope that helps and Good luck. You seem to be taking care of yourself very conscientiously. Congratulations, you're "woke"!
Gene,
Thank you for a terrific post. I have not heard about breaking the turmeric capsules and taking with oil. Further, I think that it gives me diarrhea. Another point you made is taking turmeric and green tea on the same day. Some folks here alternate based on their understanding of a test on turmeric I think. I am not being at all critical since none of this is settled science due to lack clinical studies. But some have said it’s better to space them apart. I may have not understood correctly.
Any information on the best green and turmeric would be greatly appreciated. Be safe and during the holiday season.
In attempts to create more of a daily habit I figured I would space them apart but only by 10-12 hours instead of 24 hours with the thought that if I use 10-12 hours to avoid food when I need a 'fasting blood test' I'd use that amount of time to let my body digest the green tea and hope for very little left to interfere. Then again there's so many variables that the evidence and the advice that follows is never an ironclad thing so I just shrug my shoulders and hope for the best, thinking at least I'm doing something (which might help the placebo effect as well).
Try some Matcha powder in smoothies, I drink only green tea through the day and chamomile at night. I take high doses of Curcumin 4800mg about 4 a day, a matter of choice really, I also take selenium,
tumeric actually cancels out the properties of Green Tea. So taking both will do nothing for you. Taking just green tea is the most beneficial
Depends how you use EGCG and curcumin... synergistic effect if dosed at a ratio of 10:1 and used sequentually every other day...taken together they cancel each other, antagonist effect...
The MDA looked at this nearly 10 years ago...
Oral green tea extracts have been taken voluntarily by patients with B-CLL, and EGCG has already begun phase I clinical trials in Rai stage 0-II patients with B-CLL (2). The current study provides rationale for the combination of curcumin plus EGCG in the clinical setting, and provides information concerning the dose and administration of these two compounds. A constant ratio of 10:1 (EGCG:curcumin) was established as effective at inducing apoptosis in B-CLL. Sufficiently high doses of EGCG and of circulating curcumin will be necessary to overcome stromal protection in vivo.
The data also indicate that sequential treatment of B-CLL with EGCG followed by curcumin is preferable to simultaneous treatment, and is crucial to the efficacy of the combination of these two compounds. Simultaneous treatment of B-CLL cells with EGCG and curcumin resulted in antagonistic effects. Ultimately, however, the optimal studies will probably require the use of a curcumin compound modified to enhance its bioavailability.
.ncbi.nlm.nih.gov/pmc/articl...
~chris
MsLockYourPostsPassed Volunteer
One issue with green tea is pesticides used on it. Some Japanese brands used to be a better option, but then the issue of radiation came up. It's hard to find a reliably safe product.
Hi if the doctor said you do not need any medication I would look into going to ab accupuncturist they are amazing and will advice you in the best things to take, as for green tea I would just get some green tea bags.
You won't get enough EGCG from drinking green tea for any appreciable benefit; the Mayo Clinic trials showed that responses were dose dependent. The phase II trial patients were on 2 grams of EGCG twice a day or 4 grams per day. That equates to something like 30 cups of green tea a day with the strongest green tea!
With regard to acupuncture, more and more research is showing little to no benefit from acupuncture; it's largely the placebo effect. Where there is an effect, recent research is showing that needle placement doesn't have to be on the meridian lines. They use fake acupuncture needles that appear to be identical to the real thing in these trials.
What brand of EGCG is good ? My dad has been drinking dynamic greens wheat grass for 2 weeks now and feels noticeably better more energy at times , sleeps better and is good for his skin. Will update when he goes for his next blood test In July
Hi , my Doc said i can have daily 1500mg of ECGC green tea
You need a quality EGCG, be careful which one you choose also
1500mg isn’t enough you need 2000-4000mg , that’s what was used in the mayo clinic trials this is Glen Sabin’s
Experience
Tumeric acts as blood thinner and would have to be considered if you take Imbruvica or other medications. Otherwise tumeric is very beneficial in general terms You might check with the CLL Society which is written by physicians and pharmacists who themselves have CLL. They have a feature to ask for advice.
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