green tea

[Nugent666]

I was told to drink lots of green tea when I was first diagnosed with CLL 9 months ago.But it seems like my spleen hurts more when I drink a cup of green tea or take a green tea capsule. Am I missing something?

[Big_Dee]

Hello Nugent666

Green tea extract EGCG was used in Mayo clinical study started in 2004 for possible management of CLL. The study was discontinued due to liver toxicity in some of the patients. The EGCG the Mayo Clinic used, was special Labatory grade no longer available. Drinking green tea would require drinking 26 cups a day for same dosage of EGCG. I tried green tea shortly after diagnose of CLL, it was waste of time. I did however develop a taste for decaffeinated green tea as a replacement for all the coffee I drank. Five years later I still drink couple cups a day of decaffeinated green tea which has not shown any effect on my CLL. Green tea extract EGCG is now being marketed as a weight loss drink, which has put several people in hospital with liver damage from over consumption.

[cujoe]

Nugent666 - In all due respects to Big_Dee, I think Mayo would disagree with his characterization of their research with EGCG. In fact, my understanding of the reason that the trial was not carried into Phase III was not due to lack of efficacy in Phase II, but to the fact the supplier of the EGCG compound used in the trial decided to stop producing it. See these links for more on the Mayo trial:

newsnetwork.mayoclinic.org/...

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

connect.mayoclinic.org/disc...

Be Safe /Stay Well (A couple of cups of green tea might even help you stay that way!),

Ciao - Captain K9

[cujoe]

The story about the Mayo EGCG trial is interesting for several reasons. First it was suggested by anecdotal patient reports in response to some basic research using green tea that was also done at Mayo. Their patients saw the research and starting drinking green tea (NOT 26 cups per day, BTW) and taking green tea extract tabs. When they started showing benefits in blood work and reduced lymphadenopathy during subsequent appointments, Mayo took notice. The second interesting aspect is that the trial was partially funded by the now-defunct patient support group, CLL Topics.

The results were definitely not earth-shattering, but did show benefit to untreated patients with more indolent profiles (see attached graphs below), including reduced lymph node expression and better blood work. As for the reason that this and most other research on natural compounds are not explored in a full clinical trial setting . . . no patentable substances to support the profits needed to pay for 3 phase clinical trials:

"A new study in 2020 estimated that the median cost of getting a new drug into the market was $985 million, and the average cost was $1.3 billion, which was much lower compared to previous studies, which have placed the average cost of drug development as $2.8 billion." (en.wikipedia.org/wiki/Cost_...

From my own n=1 perspective, I was diagnosed with CLL just when the Mayo trial was started and most likely learned of it via the old super-helpful CLL Topics patient support group (an inspirational CLL story in itself) that help fund the trial. At the time of diagnosis, I had numerous enlarged lymph nodes in my neck and clavical area and eventually one in an arm pit. My white count was doubling every 18 months and eventually reached 3 x normal upper bound. I started drinking green tea when I read about the Mayo trial and the patient results there. I have continued to do so continuously since. (Again, NOT 26 cups per day) and have also have taken some form of green tea/EGCG supplement for most of the 16 years since my diagnosis. I have never been treated and except for one tiny, but persistent clavical lymph node and lower that normal platelets, have now had normal range blood labs across the board for the last 2+ years.

Has drinking green tea and intermittently using modest-to-moderate amounts of EGCG helped me get to a near-remission status? No way for me or anyone else to determine that. However, my liver and kidney functions have remained perfectly normal for the entire time that I have taken EGCG and drank my couple of cups of green tea daily. Should anyone else with CLL do either? Not my place to say. As with my own 2 cancers, I do my own research and in consult with my docs (when appropriate) make my own decisions about anything non-SOC.

Cancer is a very heterogeneous disease and what is effective for one patient may even be harmful for another. Caution is always advised with any complementary and ALL alternative treatments. Science is still the foundation for our healthcare. Make your choices accordingly.

Be Safe / Stay Well,

Paz - K9

PS. A search today on PubMed returns 4,072 hits for "Green Tea", 942 for "Green Tea Extract", and 659 for "EGCG". Mayo Clinic Trial is just one of many sources for information on green tea/EGCG.

waterfall plots of patient response - Mayo Trial

[Big_Dee in reply to cujoe]

Hello cujoe

The 26 cups of green tea were the calculated amount equal to the quantity of green tea extract, as you stated I doubt anyone actually drank that much. As you mentioned you felt lack of labatory grade source extract was no longer available caused the discontinuation of the study. The issue still remains today with the store shelf green tea extract for personal consumption.

[Gardengirl44]

I was told to stay away from high doses of green tea. if you casually drink a cup per day that's fine but not to do a lot. My doctor also says no to tumeric in large quantities. Bad for liver and organs according to him.