EGCG for CLL?

[Canuck901]

Has anyone tried contacting mayo clinic about how to get a pharmaceutical grade of EGCG that they used in their trials ? Looks like EGCG kills CLL cells.

[Cllcanada Top Poster CURE Hero]

PolyphenonE the EGCG is not available, so your source is either green tea or supplements. Dr. Kay who ran the Mayo trial, does not recommend the use of OTC EGCG, because nobody knows what is actually in it or the dose.

Dr. Kay

patientpower.info/video/ask...

Yes EGCG does effect CLL in about 60% of very early staged CLL patients, its really a mild form of chemotherapy.. Topoisomerase 1/2

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

We used to be able to get PolyE in Canada back in 2005, but since it is a drug... the source was closed...

You might contact the company in Japan...

polyphenon.jp/en/

~chris

[Spacee in reply to Cllcanada]

Mild form of chemotherapy. So, if you are in the group (from fish testing) who does not respond to chemo. Perhaps, you would not respond to Green Tea. I realized, you personally, have not done studies on this but just asking a question since you do have a wealth of knowledge.

Thank you, Linda

[Cllcanada Top Poster CURE Hero in reply to Spacee]

17p- likely would have no responses ... this only showed some activity in Stage 0/1 CLL. This was also before we understood clonal evolution...

I would be cautious... get your liver monitored if you are approaching a therapeutic dose... otherwise enjoy your green tea... 😃

[Spacee in reply to Cllcanada]

Others enjoy their green tea. We are 17p-. Liver monitoring seems vital these days. My twin’s liver went bonkers with her statin, extra strength Tylenol and 2 evening cocktails. Took all that away and she

is doing better. Bonkers is over 300 when it should be just over 100.

Now it is just over 200 and going down.

Thanks for the information and everyone have your livers tested!!

Linda

[Canuck901 in reply to Cllcanada]

My dad has decent markers , just had his checkup today with CLL specialist ,

blood is good WBC is 23, if it stays the same in 3 months his W&W will be every 6 months. Veggie diet , no dairy , no red meat , iron supplement, no gluten no sugars seem to be helping! Now we want to get progressive and start trying to kill off the CLL cells

[Cllcanada Top Poster CURE Hero in reply to Canuck901]

Be certain to have his B12 , folate and 25(OH)D levels checked.

[Canuck901]

Thanks ! I was just reading this article A Case of Complete and Durable Molecular Remission of Chronic Lymphocytic Leukemia Following Treatment with Epigallocatechin-3-gallate, an Extract of Green Tea

Dawn Lemanne, Keith I Block, [...], and Jeffrey D White

I assume the person is Glen ncbi.nlm.nih.gov/pmc/articl...

[Lily_Pad_Master]

Hi, Canuck. I subscribe to Consumer Labs. They do rigorous testing of the validity of claims made by all kinds of supplement makers. I use "Green Tea EGCG 200" from Andrew Lessman's ProCaps Laboratories/All-Solar Manufacturing. Unbelievably, I believe I get it from the Home Shopping Network! I know. It sounds crazy, but it really is the best-rated one in terms of price/capsule/verified EGCG content. It was a little tough to find. Each capsule contains 200 mg EGCG, which makes it much less expensive than the one I had taken for several years before. I take two capsules in the morning and two in the afternoon. Take them with food. The next day, though, I don't take it and, instead, take Curcumin (Doctor's Best was highest-rated by Labdoor, which is where I get it from. Their price beats Amazon's by a mile). I alternate days as I read in a couple of studies (one of which was Mayo, I believe) that it's the best way to do it.

[Almot in reply to Lily_Pad_Master]

My first post here. I wish everybody long life and good outcome of treatment. May I ask, Lily_Pad_Master - how did EGCG work for you? 4 pills every other day adds up to 400mg a day. This is a tiny dose, 5 cups of strong decaf Green Tea would give you that much (and yet without caffeine). Also, if it's not a secret, why were you taking EGCG for several years before, ? Also, Now EGCG brand is a bit cheaper than Andrew's.

I started Green Tea 2 weeks ago, after being diagnosed with Follicular lymphoma. 3 regular caps, and 2 decaf later in the day. Noticed a lot of diuretic effect

[Lily_Pad_Master in reply to Almot]

Hi! The EGCG capsules are something like 90% EGCG. It’s not green tea. It’s been a while, but as I recall, each capsule is something like 32 cups of tea worth of EGCG. Maybe someone can verify. Can’t remember if it was 32 for one capsule or 4. Either way, much more than can be gotten by drinking green tea. Also, took only decaffeinated EGCG. No hard data on how well it worked. I tolerated it fine and was on watch and wait for five years, which was slightly better than predicted for my variant of CLL.

[Almot in reply to Lily_Pad_Master]

Thanks!

You took on average 2 pills = 400mg EGCG a day (4 pills, skip a day, repeat).

1 pill = 2.5 cups (simmer 5 minutes, this is important). Lipton Green Tea, when simmered 5 minutes = 80mg EGCG per cup.

5 cups of regular Lipton Green Tea = 400mg (same as your daily dose in pills!), but it might be hard to drink 5 cups of regular because of caffeine. I drink 2-3 regular before noon and 2-3 Decaf in afternoon - don't know how it will work for me, I have just begun.

Decaf gives the same 80mg, some authors say Decaf is 40mg.

Anyway, 400mg EGCG a day doesn't look like a dangerous dose. Some Japanese drink more than 5 cups (= more than 400mg). Glad it helped you. Positive spirit, feeling of doing the right thing very likely helped too! Stress is a killer.

[AussieNeil Partner Administrator in reply to Almot]

How much EGCG your liver can tolerate is highly individual. I developed transaminase (high liver function readings) on about 2 grams per day and I'm not a drinker. Transaminase was a common side effect in the Mayo clinical trial and is well recognised as a concern with high dose green tea.

[Hoffy]

See my past post:

Below is information on Green tea I have posted in the past. See my recent posts as well,

Make sure to work with a Doctor 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 brand "Matcha super green" from a flavor standpoint They are out of Milwaukee, WI . 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 super 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 found 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.

Make sure to work with a Doctor if you go to high doses.

I am on a trial with Imbruvica and Venteoclax and doing well so far. MRD negative in the bone marrow after 14 months,

Be well,

Hoffy

[Canuck901 in reply to Hoffy]

Hi Hoffy. Thanks for the info , I think drinking green tea is a waste you would have to drink 10-20cups a day to get the amount of EGCG they used in the mayo clinic study and what Glen Sabin used. You need a high quality grade of EGCG a green tea extract

Like polygon E

[Hoffy]

I did both. Green tea is healthly in general and can't hurt - if you like to drink it...

Hoffy

[Canuck901]

Yes but green tea itself doesn’t have enough EGCG, and the quality just isn’t there. The best would be the one that Mayo clinic used

[livinglifewell]

I did this high-dose green tea extract for six months. When I first read about it in a study I reached out to the doc leading the study. I went to Mayo Clinic for a 2nd opinion and arranged to meet with her. I was not eligible to join the study because of my advanced stage, but she was receptive to helping me arrange a regimen. She told me what my dose would be based on my height/weight. The company producing the product was based in Germany and they refused to sell us the product. My husband found a company in Vermont who was producing it. (It must be pure, de-caffeinated, and reliable.) The protocol was to have a CT scan prior to the start of the EGCG and repeated upon completion six months later, monthly labs to test for liver enzymes to make sure I wasn't overdosing and it was being processed. I took 1,875 mg daily in one dose for six months. EVERY FRIGGING lymph node shrunk in measurable amounts. My oncologist was extremely reluctant to participate but I convinced her that she wasn't administering the drug, but only overseeing me and ordering the tests. The reality of it actually revealed that I had an advanced second cancer which I had suspected and kept asking a prior oncologist to check out, but nonetheless, the regimen was impressive.

[Canuck901]

Awesome news , thanks for sharing , where in Vermont ? I wonder why the company from Germany wouldn’t sell it

[Hidden]

It doesn’t kill them, it encourages cell death of the cancer cells (apoptosis). I don’t think anyone really understands the process of EGCG as it’s not really been studied. The problem with pharma is they don’t want to spend time studying something that won’t make them profit.

[Canuck901 in reply to Hidden]

Yeah big pharma doesn’t want something natural and Inexpensive to compete with their expensive drugs