EGCG: Hi everyone! Just wondering if anyone is... - CLL Support

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EGCG

GeriGi profile image
16 Replies

Hi everyone! Just wondering if anyone is seeing a benefit from taking EGCG? I would like to begin taking it, but I don't want it to lower my platelet count.

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GeriGi profile image
GeriGi
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16 Replies
Cllcanada profile image
CllcanadaTop Poster CURE Hero

Just consider that EGCG is a form of chemotherapy... a type 1/2 Topoisomerase.

en.m.wikipedia.org/wiki/Top...

The dose used at the Mayo trial was 2000mg of pharmecuetical grade EGCG taken twice a day... 29 of 42 patients show some response in Stage 0/1 CLL.

~chris

Hoffy profile image
Hoffy in reply to Cllcanada

Chris,

Interesting. Would this imply that Green tea might not be good if one is 17P deleted since it is a form of chemotherapy?

I am 17P deleted and Trisomy 12. The Mayo study said ECGC did not work well with Trisomy 12.

I like green tea and drink it. I do not take supplements anymore. It did not work for me. I am now on a clinical trial with Ibruvica and Venetoclax soon,

thanks,

Hoffy

AussieNeil profile image
AussieNeilAdministrator

How low is your platelet count? Mine is hovering around 100 and I'm taking several grams of EGCG daily with no bleeding issues. A greater issue is finding a reputable source of EGCG...

Peggy4 profile image
Peggy4 in reply to AussieNeil

So how do you go about finding a reputable source Neil?

AussieNeil profile image
AussieNeilAdministrator in reply to Peggy4

In Australia, it's a bit easier than most other countries, because there is a requirement to register herbal remedies and supplements with our Therapeutic Goods Administration or TGA (our equivalent of the USA's FDA). TGA do audit suppliers (but not enough) and can and do close down those that refuse to follow legal requirements, which stipulate which ingredients must not be sold due to safety concerns: healthunlocked.com/cllsuppo...

Elsewhere, I suspect all you can do is look for a supplier who will provide a Certificate of Analysis from an independent tester. The analysis should state the percentage of EGCG (what you want) and the concentrations of what you don't want, i.e. at a minimum:

Heavy metals in parts per million

Arsenic (As) in parts per million

Microbiological control information:

- Plate count

- Yeast and Mold

- E. Coli

- Samonella

Neil

GeriGi profile image
GeriGi in reply to AussieNeil

My platelets hover around 130. So still pretty good!

CLL 2004; 1/2 treatment FCR in 2014; no more CLL untill now..

Using EGCG since about 2005 and green tea (Chinese Sencha).

USING: 1.EGCG: (the best:) TEAVIGO (see internet) 150mg (94% egcg): 2 a day;

2.GREEN TEA: 2 cups a day.

Effective???? I never will know...but I don't dare to stop...

All the best to all CLL-patiënts!!

I forgot to say: BIOLOGIC Chinese Sencha!

JoanneIO profile image
JoanneIO

When I met with the evaluator at the NIH last month, I asked about green tea extract. He was a bit casual (no details, no precautions, etc) but said the Mayo Clinic studies looked good & go ahead & try it if I wanted.

He only warned to stop if I go into standard treatment.

CClaver27 profile image
CClaver27

Well it cant hurt other than in your pocketbook. I took it after getting diagnosed with about 2800 mg per day in 2009. Went through FCR in 2015 so it did not stop my progression but maybe slowed things down. Not sure. But i am still taking it even though i am in CR along with Tumuric 1000mg.

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

It can't hurt is a dangerous thing to say. You need to have your labs monitored if you are taking a high dose of green tea. Many believe it helps them. Some have found that, I in their case, it can cause harm.

GeriGi profile image
GeriGi

I do think we have to be careful taking high doses of any supplement. Our other organs can suffer. Kidneys especially. Thanks for your outlook!

Hoffy profile image
Hoffy

Below is information on Green tea I have posted in the past.

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.

GeriGi profile image
GeriGi in reply to Hoffy

Thank you for your information. Please keep us posted on your progress. I will pray for a complete response and rapid recovery for you.

Hoffy profile image
Hoffy in reply to GeriGi

Thank you ! You too.

Hoffy profile image
Hoffy in reply to Hoffy

BTW- Trisomy 12 had the worst response rate on the Phase II trial at 50%. There were no 17P people on the trial.

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