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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DX: CLL 2010 - watch and wait. 2010 left knee replacement. 11/21 left knee went septic - WBC 235,000 with RBC plummeting. CLL kicked in with problems. Flew to Mayo Clinic; Jacksonville FL; Feb 2022.....Dr Tun and "team" recommended Calquence for the CLL/WBC etc. Started taking it in March when I flew back home. Spring 2023, I quit taking Calquence - my WBC, RBC were in the normal or very close to that (as directed by Dr Tun). I want to give a shout out to Dr Tun and team, and to all the other medical folks along the way. The road has been rough - but doable. Today 8/18/23, at 71 - I still have life and more abundantly. Thank you Lord and all medical personnel involved.
How are you now. How about your liver?
I am having blood tests done every 2 months and I see my Oncologist every 6 months. My bi-monthly liver blood tests have been good and my Oncologist started me on 300mg daily of Alloperinol to help prevent issues with my liver.
I was diagnosed with CLL 2011. Started decaffeinated mega green tea extract 725mg (std to 98% polyphenols, 45% EGCG) in 2012. It was cleared with my oncologist whom I see every 6 months. She also orders liver function tests which have been normal. Plus I always have LFTs with my internist yearly and they have been normal. At one point in around 2020, I decided to decrease the amount by 1/3. My WBC, usually 11,000-14,000
increased to 18,000 after 3 months on the decreased amount. So I resumed the higher dose. After 3-6 months it was back to 11,000 to 14,000. Monitoring by an oncologist is imperative if trying out this treatment as liver and kidney function can be affected. Be sure the green tea is decaffeinated. Probably can't recommend my green tea source but if the product is entered on the web, it will come up.
Update to last entry. I take 4300mg of green tea extract daily 2150mg twice a day.
I am fortunate to have the least aggressive form of CLL. What works for one person may not work for all. In taking the 4 grams of green tea extract since 2012, I have encountered a couple side effects for me. One is upset stomach. I always take my capsules on a full stomach especially in the morning. If I do have stomach upset I have a hard candy (like a Jolly Roger) which I keep in my purse and it subsides. The other issue I noticed is that, for me, the dosage I take has an anticoagulant affect. More bruising on my arms, etc. So I have to stop it at least 2 weeks before surgery or any invasive procedures.
Is it safe to assume your lymphocyte level is also holding steady? My WBC level has a very slight downward trend while my lymphocytes have a slight upward trend. No green tea or other supplements aimed at the cll.
Both WBC and Lymphs are elevated but seem to be stable.
Saw my oncologist this morning. Blood work ordered for Aug and I am to see her again next March. Being stable is wonderful. BTW, my CLL was discovered in 2022.