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 informations.

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  • Thank you for the question. I am also very interested in this topic.

  • 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.

  • 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/

  • 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

  • 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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