Going to ask my Oncologist if I can do this on my own while having g fcr treatments.
clinical trial done at MD Anderson on Cll pat... - CLL Support
clinical trial done at MD Anderson on Cll patients giving high doses of Curcumin c3 complex and green tea extract. Input. Anyone?
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CllcanadaTop Poster CURE Hero
Do you have a clinical trial reference? These were lab experiments not clinical trials...
MD Anderson
ncbi.nlm.nih.gov/pmc/articl...
The Mayo Clinic
Curcumin inhibits pro-survival pathways in B-CLL and has the potential to overcome stromal protection of CLL B-cells in combination with EGCG.
clincancerres.aacrjournals....
Reference? I read the trial and it's conclusions through a link on a page where I was reading something else. I will try to pull it up again and see what I can find for a reference.
Both curcumin and EGCG (green tea extract) are considered toxins by our liver. Keep in mind that Curcumin and EGCG are poorly absorbed into the blood stream so be sure if you experiment on yourself that you are monitoring your liver function by CMP (Comprehensive Metabolic Panel). FCR is quite toxic in and of itself and depending on your state of health or comorbidities the added stressing of your vital organs by supplements during toxic chemo therapy is not wise. CLL manifests differently in people so for some, like me, it affected my kidneys but can also affect others in their liver. It is one thing to experiment prior to therapy and another to self experiment during a therapy. To err on the side of caution in your case is the wiser move in this uncredentialed viewer's humble opinion.
WWW
It is good to mention this WWW.
I for one have an enlarged liver. ( And spleen )
Clearly the CLL has affected my liver, and if it is called upon to then process spices and herbs, I get a massive rise in my bilirubin levels, which then makes me look as if I have jaundice.
I rapidly get yellow eyes .
So I always would caution anyone with CLL to take doctor’s advice about eating significant quantities of herbs or spices of any kind.
Dick
Wow sorry to hear that Kwenda that's kind of scary. Obviously liver health is soooo important. I too have an enlarged liver and spleen like you. Oh joy. Lol. but my bilirubin levels are good and herbs and spices even in large amounts so far have not posed a problem. Yes I fully agree.... always run anything like this by the Oncologist before proceeding.
Thanks Www....I agree always err on the side of caution. I am aware we do not absorb plain Curcumin very well. In the "lab" tests they used a special kind of Curcumin. Curcumin C3 complex. This is the form of Curcumin that allows us to absorb it. Only a few authorized suppliers of this out there. I was curious if anyone has or knows someone who has implemented this in their regime. I am going to talk to my Oncologist Dr Kipps before starting fcr next week to see what his thoughts are. I will post about it once I see him. Just trying to get my ducks in a row to get the max benefit from fcr. It's my first go round as I had a good first 8yrs of w&w.
This is a very old response but please provide source/information that EGCG and curcumin are toxic to the liver and if you when taken alone or with treatment such as Ibrutinib. Many, many sources I have read stays the opposite- no toxic contradictions. So perhaps you mean when taken in conjunction w Ibrutinib which is the highly toxic substance not EGCG and curcumin. Ibrutinib has many toxic impacts on the body which includes liver and kidney damage
Welcome to our community Herbsyes,
As you might expect with an old post, ThreeWs is no longer active on this community.
There has been a large amount of discussion on EGCG and turmeric in the last 7 years, including posts about a clinical trial of an enhanced turmeric formulation in CLL patients.
I've used turmeric and EGCG for many years, so I was very disappointed at those turmeric trial results, particularly when I looked further into the trial design per this post: healthunlocked.com/cllsuppo...
The toxicity of EGCG is well known and resulted in some members of the Mayo Clinic phase II clinical trial dropping out of the trial: ncbi.nlm.nih.gov/pmc/articl...
From the section Toxicity and Tolerability
Per FDA requirement in all human trials of Polyphenon E, 6 patients were forced to discontinue treatment after experiencing ≥grade 2 transaminitis(5 during the first 6 cycles of treatment and 1 patient during continuation). Changes in ALC in 6 patients forced to discontinue treatment after experiencing to ≥grade 2 transaminitis are shown in Figure 1.
This is what happened to my ALT liver function test on half the Mayo Clinic phase II clinical trial dose (2 grams per day). My AST wasn't healthy either. Yet while I was in treatment with full dose acalabrutinib (a second generation version of ibrutinib), venetoclax, obinutuzumab, allopurinol, pain killers, antivirals, anti-emetics, etc, my ALT averaged 25 (maximum 48 - under half the level while taking EGCG)! The ECGC was purchased in Australia and registered with the Therapeutics Goods Administration, which oversights herbal remedies to ensure they are safe when used as directed.
Neil
Liver toxicity on ECGC supplement
thank you for your response. I'm a bit confused (BTW) it is my husband with CLL and was on ventoclax for ~ 2-3 yrs when his CLL returned). he is taking nothing else except a replacement for the allpurinol (he's allergic to that), no anti virals, no pain killers, anti-emetics etc. He has been on a dose of 2 instead of 3 pills a day with the ibrutinib for about 2 weeks now, plus he started EGCG several weeks ago (found a reputable source) and increased dose slowly over 3-4 weeks to a max of 8gr currently per reams of research and papers stating beneficial doses; opposite days he is on ~3500mg of curcumin (also good sources, high concentration with good phospholipids and other carries for absorption), Vit D, 2000iu/day, quercetin, glutathion. He was just told by his doc today that the EGCG can increase the toxicity of the ibrutinib which indicates to me that the liver is overburdened due the to ibrutinib. I'm not sure what you mean by the ALT - does that mean it decreased in a positive way? and do you mean you were in the Mayo trial with only 2g of EGCG?
I wasn't in the Mayo trial, which used a pharmaceutical grade EGCG product (polyphenon-E) made by Mitsu Norin, which they subsequently withdrew from manufacturing as a capsule. They moved to using it in a cream and gained FDA approval for genital wart treatment! I just took green tea capsules with my medical team's oversight to hopefully slow my CLL progression, because it had the best evidence of providing a benefit for some with CLL. Chris/CLLCanada, who has provided quite a few replies to this post was in the trial and reported no improvement in his CLL.
You should find the liver function tests (ALT, AST, ALP, etc) on the blood test metabolic panel, which your husband's doctor should be monitoring while he is taking anything which could damage his liver, kidneys, etc.
Is your husband taking 8 grams of ECGC or 8 grams of green tea concentrate? Either way, that's a very large dose and could be damaging his liver on its own. Per the Warnings section of the MSKCC integrative medicine entry on green tea:
mskcc.org/cancer-care/integ... "The United States Pharmacopeia included this cautionary labeling requirement in its Powdered Decaffeinated Green Tea Extract monograph: “Do not take on an empty stomach. Take with food. Do not use if you have a liver problem and discontinue use and consult a healthcare practitioner if you develop symptoms of liver trouble, such as abdominal pain, dark urine, or jaundice (yellowing of the skin or eyes)” (86)" There are plenty of case studies about people experiencing liver damage while taking EGCG for weight loss. I'm surprised your research didn't turn any up. See for example: advancedmolecularlabs.com/b...
and
abc.net.au/news/2016-02-14/...
More here:
Note that while green tea is generally considered safe in normal amounts, your husband is taking a massive dose. We need to be extremely cautious when taking any supplements with medications, because of how they can interact. The primary problem with BTK inhibitors like ibrutinib, is anything that can interfere with liver enzymes. This can cause all kinds of problems, as this can result in the treatment drug being metabolised before it inhibits the CLL, through to causing serious side effects, because the active ingredient(s) in the supplement(s) block the CYP 3A4 liver enzyme's ability to clear the treatment drug out of your body. The resulting high blood serum concentration increases the side effect and adverse event risk.
Importantly, ibrutinib interferes with the blood clotting process. With low platelet counts often low with CLL, that means an increased risk of bleeds when taking anything that 'thins the blood'. Turmeric has a reputation in this regard: pubmed.ncbi.nlm.nih.gov/225... so if your husband is experiencing any bruising, petechiae (pin head blood spots under the skin), I would be very cautious about the turmeric, particularly given it only seems to help very few people with CLL per that research I referenced earlier.
Here's a pinned post on drug interactions with ibrutinib:
healthunlocked.com/cllsuppo...
You'll find more in our Pinned Posts section here:
healthunlocked.com/cllsuppo...
Neil
Sorry seeing these out of order . I agree that the EGCG can interfere or limit liver enzymes etc. or make it hard to control the dose for Ibrutinib. we have been watching closely for adverse effects, darker urine, red spots etc. I do agree that the Ibrutinib severely impacts the liver and blood clotting ability of the body. Also know curcumin can cause bloodthinning /anti coagulant properties. You cited ridiculous stories about people using EGCG to lose weight, yeah there’s lots of idiots out there who take poorly controlled, poor quality supplements who don’t know what they’re doing. Source, quality, careful administration is important. I’m not an expert in cancer but I am educated and a naturopath and very careful. Have taken this all under advisement . The one big struggle is finding a doc that uses integrative treatments who can better monitor and regulate and direct proper usage of therapeutics and drugs. Thank you for your input
A f/up comment, as stated above, curcumin is indeed poorly metabolized and absorbed into the bloodstream unless it is formulated with phospholipids or black pepper extract (phospholipid being the better). This aids in the liver being able to better/more easily metabolize. In addition the standardized level of curcuminoids is very important and the quality/source is equally important. Taking a couple of pills of turmeric per day will not be effective at all. Therapeutic levels start at 3500mg/day. During this process of starting on EGCG and curcumin, lower does were started to the Max with no apparent effects observed. Recent blood test 1 1/2 wks ago indicated no increase on negative liver performance however his wbc had skyrocketed, so he started the Ibrutinib. I believe due to the doctor stopping the ventaclax all at once citing it was not working, thus a rebound effect w cll. That’s the nasty hidden truth, that the body will always return to its predrug activity with more virulence because the drug did not deal with the underlying cause. Also, studies I have read indicate using curcumin at least, can be used with chemo making the chemo more effective and at lower doses
With respect to "That’s the nasty hidden truth, that the body will always return to its predrug activity with more virulence because the drug did not deal with the underlying cause.", this is not a hidden truth as many in our community can attest. If you can't detect CLL in the blood or even better in the bone marrow, (uMRD) then it is possible to go for many years without CLL returning. About 55% of mutated IGHV CLL patients from the early FCR trials have not seen a return of their CLL in 15+ years! It is also well recognised that CLL is always developing sub-clones. During treatment - and it doesn't matter if it's herbal or pharmaceutical, CLL cells with a tolerance to the treatment will multiply over time and will be resistant to whatever was first used.
I've not heard of curcumin being specifically used in synergistic conjunction with CLL drugs, but Mayo Clinic took out patents on synergistic use of EGCG with proven CLL drugs.
Neil
I appreciate your response but clearly what you cite essentially underscores my point, that unless you treat the body and the underlying cause to the disease, as you state, cll mutates or develops sub clones. I’m not familiar with FCR treatment. But I do know the first IV chemo my husband was on damaged his previously healthy kidneys AND he developed skin cancer due to the crap they used that was also used in the formulation of mustard gas. What frigging sicko would think, after studying the bodies and blood of people killed or harmed by mustard gas (i.e. wbcs were destroyed) would then think it would be good for treating leukemia? As far as not hearing about use of naturopathic remedies in conjunction with chemo is probably because the only studies you continue to cite are those done by the Mayo Clinic and from what I have been able to find is they did a study or two several years ago and stopped there. Whereas I have seen study after study of the very effective impact that EGCG and curcumin have on the destruction of cancer cells (causing apoptosis because they interrupt the cancer behavior pathways). In all of these studies I have not seen any indications that cll becomes immune to curcumin or EGCG. Not saying that’s not possible or that a person will need to maintain certain levels of these therapeutics. Based on everything you have posted, it’s clear to me that you are against the use of naturopathic remedies and that you believe the human body is incapable of healing itself. I don’t believe that and refuse to accept that mindset. Not easy to accomplish with this kind of disease but it’s not about taking a few drugs and sitting back helplessly waiting for them to kill your cancer and every other cell in your body. Treatment has to include many pieces, from serious nutrition, removing things from your diet that help cancer to grow, therapeutic natural medicines and also certain drugs. Most doctors say take this pill, then we’ll give this one to stop your body from producing uric acid, then this one to stop that, then another and another- all creating their own disease pathologies. Never once did my husband’s doc tell him to eliminate caffeine which contributes to uric acid production or eliminate processed carbs and sugar which cancer thrives on or have him take vit D at the very least, antioxidants, glutathione, quercetine. So thanks but I’ll keep using all possible remedies that bring healing.
You are quite right to consider all that your husband is consuming to ensure his optimum health. Whether something is artificially made or produced by nature, our cells still respond to the molecules, salts, etc derived from what we consume and those molecules can directly interact or interact with other molecules (e.g. liver enzymes) which also has an effect.
I recommend that you read the excellent book "The Emperor of all Maladies", or watch the TV series as this goes into the research of natural substances that led to a cure of childhood leukaemia. It also covers why the effect of mustard gas led to successful treatments for leukaemia. Many people in this community have had good remissions from Bendamustine + Rituximab.
There have been no long term clinical trials of EGCG or turmeric on CLL, hence there is no information on CLL becoming immune to them. However, given nearly everyone continues to progress on EGCG or turmeric, they don't control CLL either.
CLL thrives on lipids, not sugar (glucose)
healthunlocked.com/cllsuppo...
healthunlocked.com/cllsuppo...
CLL has a reputation of being incurable - for good reasons.
By the way, congratulations on reading "everything I have posted" within a day of joining our community.
Neil
PS I took EGCG and turmeric for 10 years and it didn't cure my CLL
Thank you I will look into that series; sarcasm noted throughout all of your posts but understand where it’s coming from. Today was not the first day I have read your posts but nice try 😊. Some of your information is substantive, you’re very good at quoting studies, terms, graphs, etc but clearly slanted to the cancer medical community and their use of pharmaceuticals. Cancer “treatment “ is a multi billion $$ industry which big pharma continues to drive and profit from. I would not call using the chemicals in mustard gas as successful when it made my husband extremely ill, caused liver damage and skin cancer. That’s not the picture of success, it’s poison. Yeah it killed the cancer cells and everything else with it and then he still had to go on ventaclax and now the Ibrutinib- all with serious side effects much worse than natural treatments.
Cll thrives on a particular kind of lipid already found in the body and the cancer uses it in a way that inhibits the correct pathways for energy, enzyme and ATP production in the mitochondria (very oversimplified).
ALL cancer thrives in a high carbohydrate/high sugar environment which contributes to high acidity = disease pathology, uric acid increase, etc.
If you took EGCG and turmeric (instead of curcumin) without proper standardization and appropriate vehicles for metabolism such as phospholipids, and at high enough concentrations then you’re right it did nothing. And I would have to say what you did and used 7 years ago is not the same as what’s used and available and known today. There are some very good, pure, high quality EGCG and curcumin supplements available now. Again, source and quality extremely important.
As I appreciate your information but will take it with a grain of salt. You are quite the “arrogant snob” with all of the medical stuff you cite, you’ve clearly had years to compile it but always with a prejudice and dismissal arrogance of other therapies. Perhaps the reason why you continue to suffer from cll, pain, nausea and high does of Ibrutinib
I was trying to assess the reason for your unnecessary cruelty but decided to not waste the effort.
Your last paragraph is completely unnecessary and cruel. Neil has tried to provide balanced and helpful replies to you so please be courteous and kind.
You are correct. I was harsh and I bristled a bit at some of his comments. He does provide information but leaves no room for opposing information. No intention of being cruel or unkind. But let’s be honest, he was quite sarcastic as well and just a tad condescending don’t you think and not just in comments towards me. Frankly, he is giving advice and although he can cite studies, he should be careful with that
You are a new member and don’t know Neil so try not to be so quick to judge people.
I’m not sure what you mean by not leaving room for opposing information. Is that because Neil's evidence is compelling? Discussing and debating is what we do here
Please bear in mind that Neil is not giving advice. He is providing you with some information, evidence and his own experience. How you interpret that and what you do with it is your decision.
• in reply toHerbsyes
Taking curcumin at therapeutic doses with Ibrutinib could be risky. Curcumin is an inhibitor of P-450 enzymes. Ibrutinib is affected by P-450 enzymes, in particular CYP3A4.
ncbi.nlm.nih.gov/pmc/articl...
Strong CYP3A4 inhibitors can increase the effective amount of Ibrutinib ( as AUC (area under the curve)) by 24 times.
pubmed.ncbi.nlm.nih.gov/273...
Be careful.
Herbsyes• in reply to
Understood. Again this study relates to the use of chemo drugs along w curcuminoids which is the issue. Also, they used some synthetic sources of specific isolated curcuminoids which is a huge problem and how it behaves. Everyone cites these studies and the “danger “ w EGCG and curcumin but totally ignore the efficacy of these substances in support of drugs that have far more serious impact and damage to the body. Not saying this information is not valid, but these studies use very isolated techniques with very limited applications. Thanks for the information
With green tea it is all about the EGCG strength. I have been taking 600 units three times a day but to me honest I do not know how much value there is in it. Personally I would be extremely interested in finding out all the details that you get from your doctor. I am sure there are many of us who are very interested in this subject.
Me too theEXTREMEone. I am all for being proactive but of course being smart about it too. When I read about this it all started with a pin on Pinterest about Curcumin and inflammation and then I linked to something about not absorbing the Curcumin unless you add bkack pepper. That sounded crazy to me but it seems to be true. Then I read the massive amount to take and that seemed undoable. Then I read about Manuka Honey...which by the way I think we can all benefit from learning about this one particular kind of honey.. anyway I read the honey mixed with Curcumin made into a paste was how to take it to absorb and get it working right where you want it. Then I read the MD Anderson study lab tests on real CLL patients and found you don't have to ingest a ton of Curcumin that Curcumin C3 Complex eliminates the need for massive dose because your body is able to absorb the Curcumin in this form.
what is 600 units o EGCG? do you mean 600mg?
One more thought on experimentation with Curcumin and EGCG. The Mayo clinic did studies evaluating both Curcumin and EGCG on CLL cells In Vitro and although they experimented with a coculture of CL cells and stromal cells in an attempt to study efficacy in the microenvironment it was still in Vitro and not in Vivo studies. Mayo also reports antagonism between Curcumin and EGCG when administered together. If anyone chooses the path of self experimentation at least alternate days of which supplement one is taking to avoid this antagonism. See link <clincancerres.aacrjournals....
It has been said that Curcumin absorption is increased by intake with pepperine.
Be proactive but be smart about it.
WWW
Hi again Www....I read that too. Have to take them separately. I wrote it down but don't have the notes handy on which one they say to take before the other. If I remember right its the EGCG first then the Curcumin C3 Complex.
Dosing is critical...you may want to read more research... but it is all in vitro... in a petri dish...
'sequence of administration also seemed to impact efficacy, wherein EGCG followed by curcumin induced more cell death than the reverse sequence'
Talk to your doctor before you try this...
I was dx in 2000 with WBC of 20,000. In just about 2 years it was over 50,000. I started making my own green tea capsules and taking curcumin. Within months my WBC dropped to 8,000. It stayed there and hovered up to 15,000 until I ran out of the good EGCG tea that I got from a very reliable source. (I never found that tea again.) My WBC began to climb immediately and in about 4 years it was 274,000. I am now on ibrutinib 3 months and it is down to 111. I had no side effect from green tea and curcumin regimen (and red wine, btw) and my liver fared well. The problem with the whole regimen is that I had no idea what my dosage was, so it was a bit scary. My doctor monitored me with that in mind. —Fran
Thanks guys for a really interesting series of posts.
So looks like I'm eating my breakfast in the wrong order then, I need to drink the green tea first, before eating the breakfast with Turmeric 
Had heard about Turmeric in other fields e.g. colon, but not before in field of CLL.
Dosage and purity (and now sequencing) together with liver &kidney function seem to be the main issues.
Some scientific trials in real patients would be interesting.
P.S. We have discussed potential dangers and issues of high dose EGCG / green tea extract previously on HU (just google for that).
Ernest.
I highly doubt that you can DRINK enough green tea to make any difference in your chemistry.
Mayo: As for the green tea trial at Mayo, it was started by Chaya and many of us contributed our own $$ for it. Many benefitted from the trial. Unfortunately there is not a lot of money to be made from green tea so what pharma is going to develop it as a treatment? In fact, try to purchase any of that green tea today. I couldn't. You can read about the 2008 green tea orphan "drug" approved by the FDA here: reuters.com/article/2008/07.... I believe the Japanese company is trying to hook up with another drug company to create a combo that makes $$ for it. I believe I read something about a herpes condition. It's been a few years and I don't remember the details of my "surfing." —Fran
Genital warts, caused by HPV...
medigene.com/products-pipel...
FDA approval application...
accessdata.fda.gov/drugsatf...
More
Thanks for jogging my memory. I have not looked at my myriad of notes in a long time. No more tea for me while in a trial.
Here though, is a Mayo reference to their trial/study: mayoclinic.org/diseases-con...
CllcanadaTop Poster CURE Hero
Dr. Neil Kay one of the principle investigators of the Mayo Clinic EGCG, does not recommend the use of commercial grade OTC extracts...
'How do you respond to patients that want to take EGCG for CLL?
I cannot recommend this because I do not know what is in the over the counter products they are buying. On the other hand if they want to just drink green tea instead we would estimate that they would have to drink more than 15 cups a day to reach an effective dose level of EGCG.
What we do recommend is vitamin D. We have found that vitamin D insufficiency is associated with a faster time to need for therapy and overall survival in CLL patients. We are now conducting a phase III clinical trial normalizing vitamin D levels in deficient CLL patients to see if this will truly improve their clinical outcome.'
cllglobal.org/Resource_File...
Patient Power Video 2013
patientpower.info/video/ask...
Patient Power Video 2011
patientpower.info/video/can...
Many thanks Fran and Chris and all.
I only manage about 6 cups max on a "good" day when I work at home, and think you need very approx 16+ to get the right level from past discussions.
I have got some of the pills 315mg but not the courage (with the risks involved) to take them. Neil's suggestion to suck them is probably the best way to minimise the effect on the stomach, but I still worry about the liver and kidneys (and I've got one mechanically damaged kidney already). I'm thinking at least drinking the stuff helps flush the system out and might help reduce the risks.
Would be interesting to do a poll if we don't have one to see how many of us are doing EGCG and method and dose. Also do the same for vit D. Also perhaps Turmeric ? ( I imagine going for a consultation with the spice men ... )
Thanks,
Ernest
Before you throw a bottle or jar of Manuka Honey into your basket at the health food store, be sure you know the price. I almost choked when I saw what it cost. I like honey, but not that much. I don't do green tea or turmeric/curcumin, but did start to supplement my D3 and B12 when I tested as very low, and do think getting both (monitored carefully by my doctor) into a healthy range has had a definite effect on the way I feel. No proof, but I'm sticking with it.
I'm using greentea extracts and curcumin bio active and getting results lymph glands are smaller and blood count we down
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