Green Tea Extract and Curcumin: Hi All - I’ve... - CLL Support

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Green Tea Extract and Curcumin

LouisAmbrose profile image
29 Replies

Hi All - I’ve been taking green tea extract and curcumin capsules daily since I was diagnosed 18 months ago. I have no symptoms and my blood levels have been very stable. Has anyone had experience with those two supplements?

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LouisAmbrose profile image
LouisAmbrose
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29 Replies
seelel profile image
seelel

CLL is a mysterious and perplexing disorder. Science finds the areas that it can make standard statements about, but the rest is the variable of the individual genetic makeup and lifestyle. 'Heterogeneous' is the medical parlance.

I was diagnosed 14 years ago about the same age as you, but have never used the supplements you mention. My blood levels have also remained stable with the exception of the slow creep of lymphocytes and a slight drop in platelets.

So the take-away message is that we have to find what works for us and what doesn't, and not be afraid to say, 'I don't know'.

'Viva la difference'

cllady01 profile image
cllady01Former Volunteer

Welcome Louis, the following link is to a compilation of items that can be of help to you as a newly diagnosed CLL patient. There is info to help with navigating this site as well as information to help you be your healthiest self as you "watch and wait" with your Dr. for a time which could be for many years in the state of stability you have suggested in regard to your blood work.

healthunlocked.com/cllsuppo...

The following link will take you to numerous previous posts on the subject of Green Tea and Curcumin :

healthunlocked.com/cllsuppo...

LouisAmbrose profile image
LouisAmbrose in reply to cllady01

Thanks!

wizzard166 profile image
wizzard166

I have started taking super bio Curcumin which is a Tumeric Extract for that reason, in addition to Theaflavin for those reasons. I have a free membership to Life Extension, which anyone can have, and their research in the free monthly magazine is phenomenal. That is what turned me on to those two substances. After reading the research on their web site, I then searched a bit more and found this article:

sciencedirect.com/science/a...

After reading that article I began drinking a mug of Black Tea every day. I must admit the swollen lymph nodes in my neck have decreased quite a bit.

Hoffy profile image
Hoffy

Great,

If you take high levels make sure to work with a doctor to watch your liver enzymes AST and ALT. I have posted on this before.

If you have not also see the Mayo clinic CLL Study;

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

thanks,

Mark

CLLAdvocate profile image
CLLAdvocate in reply to Hoffy

Hi Hoffy. My husband’s ALC count was increasing quite quickly (doubling every 6 months) about 7 years ago. He started taking 1200mg EGCG daily and his ALC has remained stable since then. He also finds his fatigue has vastly improved. Liver enzyme counts continue to be in the normal range.

Hoffy profile image
Hoffy in reply to CLLAdvocate

Great !! Good to hear.

Do you know if he is mutated or unmuted? What cytotoxic genetic markers? like 13q deleted?

Hoffy

Justasheet1 profile image
Justasheet1

Here is a quote from Dr. Furman on this topic:

“There are no data of any supplements being able to help control or prevent CLL. Many have been studied, including resveratrol, curcumin, and ECGC (green tea). There was a change in the laws in the mid-90s that allows natural products to be marketed as food supplements instead of as pharmaceuticals. This allows claims to be made without having to substantiate them or obtain approval from the FDA. In essence, they can state that Frosted Flakes are great (Tony the Tiger) without proving it in a randomize controlled clinical trial.”

cllsociety.org/

Jeff

Hoffy profile image
Hoffy in reply to Justasheet1

What about the Mayo Clinic phase 2 trial with ECGC?

Hoffy

Justasheet1 profile image
Justasheet1 in reply to Hoffy

Send me the link. I’ll check it out but people have been gulping the green tea since I joined, hell I did too praying it would do something but I know that the only thing that reversed my CLL was treatment.

I’ll eat a truckload of leaves if it works but I only hear about this random cases prompted by people who hate traditional stuff.

My opinion.

Jeff

Justasheet1 profile image
Justasheet1 in reply to Hoffy

Oh and if it works, why aren’t the great minds which doesn’t include me prescribing it?

Hoffy profile image
Hoffy

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

Tell me what you think.

I think it works a bit but it’s not near as strong as the drugs.

I drink a lot of good quality green tea. Hopefully it works or if not it makes me feel like I’m doing something! I like the taste and energy anyways.

I had to go on treatment since I am 17 P deleted unmutated. It was not strong enough for that but so far I plus V brought my disease into remission after a year and then I’ve been on nothing for 2 1/2 years.

Be well,

Hoffy

Justasheet1 profile image
Justasheet1 in reply to Hoffy

“It is unknown whether the modest clinical effects observed translate into a delay in disease progression or need for subsequent chemotherapy. It should also be emphasized that EGCG can in no way be considered a substitute for traditional chemotherapy and/or monoclonal antibody based treatment once need for treatment develops.22 The EGCG containing preparation used in the present study was a pharmaceutical grade product with a standardized and verified EGCG dose/content confirmed by the NCI and/or the pharmaceutical manufacturer. Accordingly it is unknown how the clinical effects reported here translate to use of over-the-counter, food supplement grade EGCG containing products that are not subject to stringent quality control. Further, some animal studies suggest that a mixture of polyphenols is needed for maximal anti-tumor effect35-37 and it is unknown whether the effects observed were related to polyphenols present in Polyphenon E other than EGCG or the specific composition of this EGCG-containing preparation.

Published online 2012 Jul 3. doi: 10.1002/cncr.27719“

This Phase 2 trial is almost 9 years old now. If it was the real deal, I’m sure that our doctors would be using it now.

I understand waiting to get sick is not something most people want to be told so they grab on to the first lifeline they see. If the doctor won’t do anything I will attitude is what I had. But in the end, the doctor knows best it seems.

Jeff

Hoffy profile image
Hoffy

The Mayo clinic study was actually funded by patients. The husband had 17 P deleted CLL and there were no treatments back then and she had a major website on CLL information.

In general there’s no real interest for major studies to be done on nutraceuticals given there is not much profit incentive.

Phase 2 study did show good results but like I said earlier I don’t think it is that strong and see new CLL drugs are much better.

I would be interested to hear of anyone else who has found good results with high-dose EGCG.

Thanks,

Hoffy

bennevisplace profile image
bennevisplace in reply to Hoffy

The results of that phase1/2 study were interesting. If EGCG was a patentable drug, a phase 3 trial would have ensued. But as you say, the profit motive was missing.

In the absence of RCTs, the benefit of loading up on polyphenols etc will remain questionable. Such "nutraceuticals" may help slow CLL progression in the initial clinical stage, while drugs are invariably deployed at a much later stage. Apples and pears.

AussieNeil profile image
AussieNeilAdministrator in reply to bennevisplace

Actually there are several EGCG patents related to its extraction held by Mitsui Norin, the supplier for those Mayo Clinic CLL clinical trials. Mayo Clinic also took out patents for its use in conjunction with chemotherapy drugs. There is also this one by Kyushu University (expired).

patents.google.com/patent/U...

Mitsu Norin found a profitable use of EGCG with the FDA approved use of it in a topical application for viral warts.

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

So perhaps, per the review by Antony Mato, et al, it just doesn't work as well for CLL as competing products?

Evidence for and Against Green Tea and Turmeric in the Management of Chronic Lymphocytic Leukemia

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

Conclusion

From the reported data, our current recommendation is to avoid green tea, both as EGCG and as an extract, usage by CLL patients, especially those with any history of liver or gastrointestinal disease or receiving CLL-directed therapy. The current research for green tea in CLL has demonstrated minimal activity in terms of objective responses, mostly in asymptomatic, early-stage patients who would not normally warrant CLL-directed therapy by the International working group CLL criteria.44 In addition, the current data support the occurrence of significant adverse events (even with limited exposure) associated with green tea, especially its extracts and EGCG. This is especially concerning when most patients who consume green tea extracts/EGCG are asymptomatic from the perspective of their underlying disease. At present, we could not identify ongoing trials for green tea or green tea extract in CLL patients.

:

Conclusion

At present, the evidence is insufficient to recommend the usage of turmeric or curcumin extracts as CLL-directed therapy. Although the treatment has very limited toxicity, no oral regimen has been shown to be tolerated and able to achieve the perceived therapeutic levels in serum.

This paper explains the curcumin bioavailability problem and progress made in improving it

pubs.acs.org/doi/10.1021/ac...

Neil

bennevisplace profile image
bennevisplace in reply to AussieNeil

Neil, thanks for pointing out the patents on EGCG. However, EGCG I submit is not a drug with sufficient profit potential to justify a phase 3 clinical trial. The review paper you reference, which concluded "At present, the evidence is insufficient to recommend the usage of turmeric or curcumin extracts as CLL-directed therapy" was unable to include the evidence from any RCT, because no such trial existed.

Just to be clear, I am not advocating the use of either green tea or curcumin in treating CLL, neither am I pouring scorn on the idea.

However, if anyone hopes to retard their CLL progression by swallowing curcumin, unless it is a high-tech (thus high-priced) product with enhanced bioavailabilty, they're probably wasting time and money. I don't know if the pre-2015 version of the curcumin extract Meriva, used in the study discussed in the above review paper, would have been enhanced thus. But the authors do highlight the issue:

"In vitro studies of curcumin have shown that a mean serum level of 5.5 μM and a 24- to 48-hour period of constant exposure was required to induce apoptosis of CLL cells. Owing to its low bioavailability, poor absorption, low water solubility, and rapid metabolism by hepatic and intestinal glucuronidation, large oral doses of curcumin are required to achieve even transient serum levels of 1 μM. One study of 12 healthy human volunteers consuming 10 to 12 g of curcumin found that only 1 subject had a detectable free curcumin level at any of the time points assessed (range, 0.25–72 hours)"

AussieNeil profile image
AussieNeilAdministrator in reply to bennevisplace

It was common to include piperine (black pepper) or a fat/oil e. g. lecithin, to improve curcumin absorption well before 2015.

Even the enhanced bioavailability of the Meriva supplement wasn't able to demonstrate effectiveness against CLL, as pointed out in the above review by Mato, et al, despite the study design being constructed to magnify any effect by using the statistical property of "Regression toward the mean".

healthunlocked.com/cllsuppo...

We still don't have any randomised controlled trials for EGCG or turmeric/curcumin and the randomisation is critical to determine whether they actually do have an effect. "This is because the act of randomization balances participant characteristics (both observed and unobserved) between the groups allowing attribution of any differences in outcome to the study intervention. This is not possible with any other study design."

healthunlocked.com/cllsuppo...

bennevisplace profile image
bennevisplace in reply to AussieNeil

Ah yes, I remember it well. Piperine, that is. In 2006 I bought some to go with the curcumin extract I'd started taking, having read about the bioavailability issue. I figured it would be more effective to dissolve the powder in oil and rub it on the skin, so for a few years I did just that.

I never came across second-generation attempts to enhance bioavailability, like Meriva, or the current crop of third generation products.

Google threw up this paper, a comprehensive review of the various formulations of curcumin and how each performed in studies (including clinical trials and to my surprise the odd RCT) pubs.acs.org/doi/10.1021/ac...

Too much to digest at one sitting!

Hoffy profile image
Hoffy in reply to bennevisplace

Thansk,

I still drink many cups per day of high quality green tea.

Hopefully it helps get my CLL down but the real drugs do the heavy lifting when needed!

I did have liver enzyme issues when when I was taking the high does supplements. So I had to stop.

Be well,

Hoffy

Jrugg profile image
Jrugg

hi there, I was diagnosed in 2019. I haven’t done anything other than healthy eating and exercise and my levels have remained stable too.

I was afraid to really do much research and dive into this as I didn’t want it to consume me. I finally reached a point of realizing that it is up to me to find an early treatment solution as the doctors just want to wait and watch for it to get bad enough that they have to give me more severe treatments. I am curious about your green tea and curcumin. I was also considering researching the fenbendazole

AussieNeil profile image
AussieNeilAdministrator in reply to Jrugg

I've never heard of fenbendazole with respect to CLL management, though one study mentioned its effect on myeloid, not lymphoid white blood cells. The issue is its human toxicity.

From Anthelmintics as Potential Anti-Cancer Drugs?

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

There is no definite evidence of anti-cancer effects in human patients so far. Clinical trial with fenbendazole is impossible, because it is not permitted for human use due to toxicities.

SAFETY ISSUES

Food and Drug Administration (FDA) and European Medicines Agency (EMA) prohibit fenbendazole for human use. Recommended dosage for animal is 5 mg/kg, which is more than 100 fold acceptable daily intake for human safety (40 micrograms per kilogram body weight). The decision was based on toxicity and teratogenicity studies conducted in Hoechst Research Laboratories (NADA 128-620).5 Actual toxicities, such as acute hepatitis, following self-administration of fenbendazole are reported.

Neil

ASUgrad2021 profile image
ASUgrad2021 in reply to Jrugg

I was diagnosed in 2021 and I’m on your exact wavelength in terms of holistic approaches. I’m on several Facebook groups with the aforementioned protocols you mentioned. If you’d like send me an email and I am Happy to share what I have found so far. There’s a few herbalists I have found intriguing as well.

Be well,

Stacey

AussieNeil profile image
AussieNeilAdministrator in reply to ASUgrad2021

Hi Stacey,

For your privacy and protection, HealthUnlocked advise against sharing your email address in posts and replies. Given this is an unlocked post, discoverable via an internet search, your email address can be harvested and sold to spammers, which is why I have removed it.

I see you have only recently joined us, so I'll refer you to this pinned post, which covers the guidelines on the safe usage of HealthUnlocked:

healthunlocked.com/cllsuppo...

HealthUnlocked provides a chat messaging process for private communications as covered in these references.

support.healthunlocked.com/...

support.healthunlocked.com/...

However, open replies are encouraged, as all community members can join in and learn from the discussion.

Neil

ASUgrad2021 profile image
ASUgrad2021 in reply to AussieNeil

Thank you so much ! I appreciate it! I didn’t think about that

Jrugg profile image
Jrugg

Thanks for the reply and the info Louis,

I also am unsure about Fenben for CLL. I got the idea as we have had two family friends that both had different types of terminal cancer diagnoses.

One has lung cancer, he had gone thru treatment, and had surgery on his lung. He was recovering well, his doc recommended he take the C-19 vaccine in 2021 for obvious reasons, unfortunately the cancer came back in full force immediately after and was given 6 months to live.

He has been taking the Fenben protocol and here we entering 2024, and he continues to get better.

My studies had not yet shown it as a known treatment option for CLL, though those studies have brought me here, which I am thankful for.

This is the group I have been connected with that are dealing with CLL also.

Curious three plus years in , if you feel that the green tea extract and cur cumin are helping slow the rise of lymphocytes?

Have a great day all

Justin

CycleWonder profile image
CycleWonder

Those of us who have lived with CLL longer (and many on here have been living with it for more than my ten years) would like to see a treatment for CLL that could be started early and be effective.

It was not fun to morph over a period of six months from an athlete to someone who needed a lot of help with daily living just before I started treatment.

The reason doctors in the past and presently do not treat CLL is that early treatment has not helped. It has been better to wait until the patient needs treatment.

There are changes afoot in treatments, particularly with stopping treatment once CLL has been almost eradicated.

It is frustrating to be diagnosed and then be told to wait. We all want to do something. That is our nature - to take charge.

But just beware that some people with CLL never need treatment. And most will need treatment. And when I needed treatment, I was profoundly grateful there were options for my treatment.

Since I started treatment, my ALC dropped from 275k to 4.9k. All other blood test results are normal with the exception of my immunoglobulins which are now low.

I feel pretty good but I notice when I get sick, such as with a cold, I can go from feeling strong to weak with 24 hours and my recovery time is longer.

Jrugg profile image
Jrugg in reply to CycleWonder

Cycle Wonder,

Thank you for the information. That is almost exactly what my doctor has recently told me also. When you refer to your ACL # , which one is that?

Yes I am a helicopter tech and my career is spent troubleshooting and fixing before it becomes fatal. So it is very un-natural to wait and watch.

I have always been a fan of alternative medicines so I am drawn to research these options , including hydrogen peroxide.

I got to spend some quality time with a very well known doctor, he suggested Hydroxy Eurea.

CycleWonder profile image
CycleWonder in reply to Jrugg

ALC is the absolute lymphocyte count. When your ALC is really high, there’s not much daylight between the ALC and the white blood count (WBC). But with lower numbers, the WBC might increase due to other factors than lymphocytes since lymphocytes represent only some of the white blood cells.

It is odd to be diagnosed and then wait. But there are drawbacks to starting treatment too early.

When I was diagnosed, my CLL specialized warned me to not take any supplement without asking because some supplements help the cancer more than me. I was given the go ahead for a daily vitamin, Vitamin D, calcium, zinc, and recently NAC.

For what I could do, it was suggested I eat a healthy diet (which we do), and exercise. So recently retired, we ramped up our favorite exercises which were hiking and cycling (the pedal variety).

Life throws many curve balls as we age and not everything has a treatment. We try to focus on what we can do and have adventures!

Patti

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