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CLL Support Association
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Anyone attend Mayo clinic phase II trial of EGCG on CLL?

We know the good results from Mayo clinic phase II trial of EGCG on CLL patients. However, the trial finished in 6 months, so we do not know the results after the trial finished. I hear that some people continued to take EGCG after trial finished. I wish to ask someone attend this trial whether or not CLL progression remains to stop or go slowly when continued to take EGCG more than 6 months. Also I am afraid that strong rebound (progression enhanced) occur when stop taking EGCG . This is my experience, and also described in paper on the phase II trial. I appreciate if someone might give us information.

Plot shows probable effect of ~2 grams per day of EGCG on ALT liver function blood test counts, followed by EGCG dose reduction. Dotted red line is upper reference range. AST showed a similar spike of 70% above average to just under the upper reference range, which also recovered. If you take EGCG you should have your ALT and AST liver function counts monitored regularly - Admin

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I know, that mayo cl.. ended the trial. but not why.

I take ecgc for about 18 years now plus curcumine pepperini. I'am feeling good with no problems. but you never know what it should have been without these supplements.

I live a quiet life, walk every day at least 2 hours with the dogs, in the hills and work on my land.

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The Mayo Trial was supported by Mitsui Norin Co. of Japan and also contributions from CLL patients through CLLTOPICS.

Mitsui Norin Co., decided to pursuit other areas of EGCG research and developed a cream for HPV genital warts...

livestrong.com/article/1092...

polyphenon.jp/en/about/

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Hi frenchman:

It is very nice of quiet life for us.

Are you 'watch and wait' for 18 years? Without any treatments? If so , it is very good. Anyway, I wonder that you are taking EGCG for 18 years, because 18 years ago, no one knew the effect of EGCG on CLL. How much dose of EGCG are you taking?

Miee

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Which brand of EGCG and how much do you take? I'm looking for a good brand.

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The Mayo Clinic researchers have maintained an interest in EGCG since the Phase II trial. This is not surprising, since they have shown that EGCG is capable of slowing CLL progression on the majority of those in the trial and historically, chemotherapy research involved exposing cancer cells in vitro to a range of substances and trying to find what would kill cancerous cells with minimal effect on healthy cells. The active ingredient of promising candidates was isolated and formulated for maximum effect on the cancer cells while minimising damage to healthy cells and the best way to administer the new drug determined. Then it was a matter of working out how to mass produce it for use in trials and hopefully standard use if the trial was successful and the drug could be made profitably. With EGCG, we are still at the early stage; we know it works for some CLL patients, but the active ingredient isolation and reformulation, etc, hasn't been done.

Last May, Tait Shanafelt and Neil Kay from Mayo Clinic, filed a patent with the US Patent Office for a green tea and drug combination for the treatment of a hematologic cancer, with CLL and ALL specifically mentioned. It was accepted 3 months ago by the patent office.

From the US Patent Office: freepatentsonline.com/y2014...

What is claimed is:

" A method of treating a hematologic cancer in a subject comprising the steps of: (a) administering to the subject an effective amount of EGCG, or a pharmaceutically acceptable salt or derivative thereof; and (b) administering to the subject an effective amount of one or more of a purine nucleoside analog, or a pharmaceutically acceptable salt or derivative thereof, and an alkylating agent, or a pharmaceutically acceptable salt or derivative thereof."

Thanks to Dick (Kwenda) for informing me of that US Patent filing.

As Chris has pointed out elsewhere, Neil Kay has specifically said "I cannot recommend this (taking green tea - Neil) 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."

I started taking green tea because while was stage IV and my CLL had dramatically affected my immunity, treatment was not recommended for me and I wanted to try something to improve my quality of life. If you are at an early stage with little or no CLL symptoms, then you need to seriously consider whether the risks outweigh the potential benefits.

I also asked my haematologist to check my vitamin D level and it was below normal limits. Getting that back into the normal range coincided with me being able to do enough exercise without hitting a fatigue barrier that negated the benefit of the exercise. We are still eagerly waiting for the results from the Mayo Clinic vitamin D trial. There's a risk that perhaps the reason for low vitamin D in CLL patients is because the CLL is drawing down the vitamin D and increasing vitamin D serum levels will just feed the CLL.

Related articles:

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

(Includes the quote mentioned above)

Neil

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I was diagnosed with CLL in 2010. I knew nothing about EGCG nor Vit. D and their relationships to CLL. These posts have been very informative. In 2010 I was coincidentily diagnosed with low vit D., I have no test records prior to that. I have been on Vit. D supplements ever since. I definitely get sick less if at all since then. I am still stage 0, My lymphoctes had gradually and relatively steadily increased from 4800 to 7800. As I read that green tea can slow CLL progression, I started, about 6 months ago, taking a teaspoon+ of Japanese Matcha every day. My most recent bloodwork came back with a Lymphocyte count of 5800(lowest in 2 years). I have no idea if this is significant and certainly 1 data point may not be indicative of any trend or result. Also based on some of the posts I read here started a regimen or 5 days matcha and 2 days tumeric. Does anyone have any feedback that would indicate there are risks risks to this approach?

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Per the Mayo Clinic EGCG trials, the reduction in tumour burden for those in the phase 1 trial which saw a response, was dose related. Phase 2 settled on 2 grams of EGCG twice a day, i.e. a total of 4 grams EGCG per day. Have you worked out how many grams of EGCG you get in one teaspoon? I would estimate somewhere around 1 gram, so you would need to take around four times as much per day, but check with scales or counting out the number of teaspoons in a known weight.

The risk of liver damage from green tea is real (see plot above) and with the inadequate regulation of the supplements market, you may not be getting what you pay for, or have unacceptable levels of pesticides, heavy metals, mold, etc.The plot above shows what I personally observed when taking about 2 grams of EGCG per day, though I was also unadvisedly taking an over the counter supplement that purported to improve my immunity (I later found such supplements - if they work at all, do so by boosting lymphocyte growth and activity).

Your lymphocyte change is well within what's seen in natural variation. My lymphocyte count has continued to climb in the past 10 years while I've been taking about 2 grams of EGCG per day, but my spleen (swollen at diagnosis) and nodes have not further enlarged.

The only experimental evidence of alternating green tea and turmeric was in vitro testing, alternating daily. I just decided on the 5+2 day protocol to make it easier to remember what to take when. There's good evidence that turmeric is anti-inflammatory, but there are potential side effects: webmd.com/vitamins/ai/ingre...

Approved effective non-chemo treatments weren't available when I started taking green tea. Clonal evolution (the development of more aggressive, tougher to treat CLL clones from selective pressure from any treatment) wasn't understood back then. I suspect, but have no evidence, that the multiple apoptosis pathways targeted by both EGCG and turmeric may protect against clonal evolution to some degree. I haven't seen a change in the tempo of my CLL progression, but I have a 'normal' karyotype CLL and am probably IgHV mutated. I don't know how someone with a complex karyotype would go. EGCG does at least have far more specific to Cll clinical trial evidence than any other non FDA approved treatment if you want to do more than just watch and wait.

Neil

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Thanks, really appreciate your taking the time to post such a comprehensive reply!

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