Phase 2 Trial of Daily, Oral Polyphenon E in Patients with Asymptomatic, Rai Stage 0-II Chronic Lymphocytic Leukemia(CLL)
Tait D. Shanafelt, Tim G. Call, Clive S. Zent, Jose F. Leis, Betsy LaPlant, Deborah A. Bowen, Michelle Roos, Kristina Laumann, Asish K. Ghosh, Connie Lesnick, Mao-Jung Lee, Chung S. Yang, Diane F. Jelinek, Charles Erlichman, Neil E. Kay
The difficulty is that the pharmaceutical grade Polyphenon-E is no longer available and in most countries, what is actually in green tea supplements is not guaranteed with respect to dosage and contaminants, such as pesticides and heavy metals. Further, most supplements are low in EGCG - the active ingredient and to achieve any worthwhile effect, based on the Mayo Clinic trials, you need to be taking around 4 grams per day of EGCG.
You'll find plenty of previous discussions on green tea/EGCG and I've been taking it for 8 years. (Thankfully Australia regulates supplements to some extent.) Whether it is doing me any good is hard to say; my blood counts are trending closer to needing treatment, but my spleen hasn't enlarged further in that time and my nodes seem to be stable to the extent I can determine without a CT scan.
Thanks Neil for supplying the above info. Interesting read. I am always slightly sceptical about trials etc, but I guess when a loved one has any type of "cancer" you tend to grab at straws.
I also thought Egcg, why not try it? I took one capsule a day for 6 months and then I had a consult with a CLL specialist. While my ALC was slightly higher than in the past he said I was most likely one of the fortunate ones with indolent CLL and that my numbers were stable. Because of his comments and the risk of side effects of the Egcg I quit taking my daily dose. Now 6 months later and my ALC is lower than when I went in to see the specialist. So does that mean "not taking" the Egcg lowered my ALC? Probably not, but this scientific study of one person's experience doesn't suggest it helped either. And obviously I was not taking a high dose so that is probably why too.
Clinical trials may not be perfect, but they are recognised as the best way to determine the effectiveness of what's under trial. Grabbing at straws is quite understandable in desperate situations, but thankfully with CLL, it is rare that there's an urgent need to 'do something'. Some of us do have a strong need to be doing something and thereby giving ourselves some sense of remaining in control, which is why I started taking EGCG. There are quite a few effective strategies we can undertake however, as collected in this three part series:
I've been taking Green tea for EGCG for 8 years. For the last few years I've been taking the tea capsules during the week and turmeric on the weekends. As I said above 'Whether it is doing me any good is hard to say; my blood counts are trending closer to needing treatment, but my spleen hasn't enlarged further in that time and my nodes seem to be stable to the extent I can determine without a CT scan.' So I'd say that the EGCG is not having much effect on my bone marrow infiltration. That's not at all surprising, because even some clinically trial tested drugs have show poor efficacy against CLL cells in the bone marrow, where they are well protected.
So do may patients (grasp at straws) - some with absolutely no benefit or harmful. There are some who swear by green tea, but if it isn't regulated and you have no idea what you are getting, plus the problem of pesticides or radiation, it just seems like too much of a risk to me. In Australia it is regulated, and Brian Koffman drinks copious amounts every day, but he is very thorough about checking his sources. Be sure to have your husband's liver values checked regularly if he decides to try it.
I think it's more important to make sure that your Vitamin D and B levels are in a healthy range. Have your husband have them tested to determine whether he needs to supplement.
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