Newly diagnosed with CLL: I am happy to... - CLL Support Assoc...

CLL Support Association
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Newly diagnosed with CLL

I am happy to have found this site. I was diagnosed December 2018; agent orange related. I am currently at stage 0. I started taking EGCG recently at the bottle's recommended dosage. Two capsules, 1340mg. From reading here, it seems I should be taking about 3 times that dosage. Is that correct:

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Welcome Bill!

I presume you are a vet and are aware that your CLL related expenses are covered due to Agent Orange being recognised as a likely cause of your CLL?

publichealth.va.gov/exposur...

From my observations of comments from those taking EGCG over the years, very few take anywhere near the dose established in the Mayo Clinic trials of 10 years ago. The Mayo Clinic Phase 1 trial showed that the response to EGCG (in those that responded) was dose related. The phase two trial settled on two grams of EGCG twice per day. With the usual green tea product, that equates to considerably more in capsule weight, because EGCG is only part of the encapsulated content.

From the discussion section of the Phase 2 study results paper: ncbi.nlm.nih.gov/pmc/articl... , bearing in mind that the trial was limited to 6 months: "~30% of patients experiencing a sustained decline in the ALC of ≥20% and ~70% of those with lymphadenopathy at study entry experiencing a ≥50% reduction in the sum of the nodal products during treatment.

:

The EGCG containing preparation used in the present study was a pharmaceutical grade product with a standardized and verified EGCG dose/content confirmed by the NCI and/or the pharmaceutical manufacturer. Accordingly it is unknown how the clinical effects reported here translate to use of over-the-counter, food supplement grade EGCG containing products that are not subject to stringent quality control." (My emphasis) Dr Neil Kay, one of the paper authors, later publicly re-enforced that recommendation, so you need a reputable supplier, given the potential issues of heavy metal, pesticide, fungal and bacterial contamination in the huge, unregulated US supplements market.

I hope you also read and took in the potential risk of damage to your liver from EGCG and have informed your medical team, so that your liver function is being monitored.

From the Toxicity and Tolerability section:

"During the 6 months of active treatment 13/42 (31%) of patients required a dose reduction. ... 6 patients were forced to discontinue treatment after experiencing ≥grade 2 transaminitis."

Many of us have a strong need to feel that we have some control over this illness (myself included). If you do continue with the taking EGCG, let everyone know how you go. Some have reported good results and others haven't noticed a difference.

Neil

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Thank you for your comments, Neil. I was granted a 100% disability status from the VA. I need to further evaluate the EGCG I am taking. Are you familiar with the Relentless Improvement brand? I bought it through Amazon, and it was highly rated, including by CLL sufferers. Obviously, I have a lot to learn.

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Sorry Bill, I'm not familiar with what's available in the USA. The capsules you are taking seem to be very high in green tea if true to label. Caffeine amount may be of concern.

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Thank you, it is decaffenated.

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BTW, where are you in Australia. I've been to Melbourne and Perth on business. What a beautiful country with beautiful people.

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HealthUnlocked has a "People near me" feature: support.healthunlocked.com/... :)

Thanks for your kind comments about my country and fellow Aussies. I'd like to think so!

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VA benefits can be tricky- we have a vet expert to help. Take a look at cllsociety.org/2018/06/into... I can help you connect with Bruce if you want. Stay strong. We are all in this together. Brian Koffman CLL Society.org

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Bill,Dr. Anthony Mato has written a nice review of ECGC and turmeric that is worth perusing.

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Would that be this paywalled article?

ncbi.nlm.nih.gov/pubmed/300...

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That is correct. I am on a backup computer now as mine is being repaired, so I can't cut and paste from the article, but the conclusions were little good clinical evidence of efficacy.

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Hi Neil,

Do you have to pay to read the article? When I clicked to read the entire article, it took me to Elsevier. I created an account but haven’t seen the article.

Thank you!

NW

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Yes, article internet access is currently only via a paid subscription, hence my use of the term 'paywalled'. You might be able to find a library - e.g. a university or hospital library that has an account, or gain access via a professional membership that has an account.

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Ok, thanks. I suspected that’s what you meant. I’ll check with my library, which has a lot of online resources.

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If you cannot get it I can email it if anyone wants it.

Otherwise try interlibrary loan

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Thank you. I would appreciate it if you would e-mail the article to me.

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Send your email address in a private message.

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Welcome Bill ... everyone is different, I realize ... but I took very high quality ECGC Decaffinated capsules M-F and vet high quality turmeric drops on Sat and Sun for a year and saw no change. I wonder if a very healthy diet and mild exercise does about as good as anything and we will each progress at our own rates ???

I also live in Texas.

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