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Chronic Lymphocytic Leukemia: Study of green tea extract inconclusive
I just want to tell my story about CLL. I was diagnosed in December 2012 with it and my son found your report on a study you had done with EGCG and Vitamin D3. I printed it out and read it and started on those 2 things immediately. I've been taking them every since and I haven't had to be treated for CLL yet. I see my cancer doctor twice a year and have blood tests twice a year and while my white cell count is high, I haven't had to be treated for CLL yet. I'm so thankful for your study and that my son found it and told me about it. I am 76 years old and have had over 8 more years than I thought I would when I was diagnosed and I think you should broadcast to the world about that study. I realize not everyone will respond the way I have but you could be saving lots of lives and helping lots of others to find a way to help themselves. Thank you so much for your studies.
UPDATE FROM THE COMMUNITY DIRECTOR
Mayo Clinic cannot recommend that EGCG be used by CLL patients. Green tea trials haven't been conclusive, and this subject requires more study before doctors can agree on the merits of this treatment.
– Evidence for and Against Green Tea and Turmeric in the Management of Chronic Lymphocytic Leukemia https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7397615/
"From the reported data, our current recommendation is to avoid green tea, both as EGCG and as an extract, usage by CLL patients, especially those with any history of liver or gastrointestinal disease or receiving CLL-directed therapy. The current research for green tea in CLL has demonstrated minimal activity in terms of objective responses, mostly in asymptomatic, early-stage patients who would not normally warrant CLL-directed therapy by the International working group CLL criteria.44 In addition, the current data support the occurrence of significant adverse events (even with limited exposure) associated with green tea, especially its extracts and EGCG. This is especially concerning when most patients who consume green tea extracts/EGCG are asymptomatic from the perspective of their underlying disease. At present, we could not identify ongoing trials for green tea or green tea extract in CLL patients."
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Welcome @graildon. I noticed that you wished to post a URL to an article with your post. You will be able to add URLs to your posts in a few days. There is a brief period where new members can't post links. We do this to deter spammers and keep the community safe. Clearly the link you wanted to post is not spam. Please allow me to post it for you.
- Effects of Green Tea on Various Types of Indolent Low Grade B-Cell Lymphomas https://www.sciencedirect.com/science/article/pii/S0006497118729753
It’s important to note the doses cited in the article. High doses of green tea extract (EGCG) of 2000-4000mg showed to also have serious side effects and dangerous liver toxicity as members who were part of the original study have shared here.
The article above seems to suggest that low doses may also show positive results. In short, high doses are not recommended. It is advised to discuss with your oncologist.
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4 ReactionsThis article seems to concentrate on asymptomatic patients. Have their been studies for symptomatic patients with CLL?
What dosage of EGCG and which product?
Early stage. No treatment. I asked about EGCG and the Mayo Clinic trial -- she said "yes" I could take the supplements. I need guidance re safe supplements/products and dosage. I see 1800 mg but same lists 200mg EGCG -- kinda confusing.
Can you provide any guidance on the over the counter supplements that align with those used in the Mayo trial?
Thank you -- m.
"Following a case series publication by Dr. Shanafelt, the National Cancer Institute sponsored clinical trials through the Mayo Clinic, evaluating EGCG in 42 patients with asymptomatic CLL. Patients received 2000mg EGCG twice daily for 6 months."
What did you take? Dosage level and which product? So many out there but not sure which to trust, etc.
Thank you. m.
Hi @mmpopovich I encourage you to read this discussion that I’m posting below regarding EGCG and the comments posted by other members. There are potential side effects to taking this product and members on Connect cannot prescribe medications or supplements.
https://connect.mayoclinic.org/discussion/chronic-lyphocetic-leukemia/
This from @minnesotajim, who was part of the Mayo Study:
https://connect.mayoclinic.org/comment/679404/
If your oncologist said it was ok to take the supplements, did she give you a dosage suggestion?
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2 ReactionsShe didn't suggest a dosage - said it was okay to take as per Mayo trial but I have not been able to find clear info about specific dosage.
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Hello @tlb, some how I missed your entry into our forum so I want to properly welcome you to Connect. Since you were relatively new in your diagnosis with CLL in January, how are you feeling now that it’s August? Have you learned more about your condition and taking any treatments? Or are you in active surveillance mode?
Thanks so much. Yes, I’m in active surveillance with my local hemo/onc, with a standing invitation to go back to Mayo if my numbers ever start creeping. The Mayo CLL specialist tells me I’m a risk factor 0-1 on that 10pt scale. I have so much appreciation for the Mayo docs and their advanced knowledge and experience. Not to mention the possibilities of study participation down the road. I’m so privileged to be within easy driving distance of Mayo and have my health insurance cover there.
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1 ReactionI have been taking 4000 mg a day (2000 mg in the AM and 2000mg in the PM). I get blood drawn every 2 months and am watching my kidneys and liver. My oncologist knows I am taking EGCG and is ok with it. My intent is to delay therapy as long as possible.