CLL ASYMTOMATIC PT

[nehla]

DID ANY CLL PT TRIED EGCG AND CURCUMIN IN HIGH DOSE TO CURE CLL?

[stewie]

Hi nehla oh no it don't cure cll , there was some evidence that cll cells were destroyed in vitro which means in a test tube with increased levels of EGCG we can be found in green tea but I stress this is in vitro Some patients have said it slowed there WBC counts up , when first diagnosed I tried Green tea and Curcumin tablets But even though I did not need treatment for 6 years , which was probably due to the course of the disease it did not really slow my counts up and you also need to be careful how much you take , keep a eye on your liver function results if you start taking more than recommend BUT NO it don't cure cll but I don't want to put you off this because there may be health benefits by taking these tablets with in the recommended daily dosage

Take care

Stewie

[nehla in reply to stewie]

i am under care of oncologist , my lymphocyte count slowly going down , i am on it for last 2 month and still taking it.

[theclarksark in reply to nehla]

how much are you taking?

[nehla in reply to theclarksark]

4G EGCG +4G CURCUMIN DAILY

[Hidden]

I started green tea and turmeric at diagnosis in 2007

[BoomrangSuj]

I remember reading an academic article (don't remember the reference) that found that taking EGCH (green tea) and Curcumin (tumeric) alternative days (24 hours apart) gave the best results in vitro, and they nullified each other when taken together.

Here is another article (I think the same lead author) on this topic:

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

There weren't any follow up research and no human trials either, so I really can't say how effective this might be...

[nehla in reply to BoomrangSuj]

MY DR SAYA TAKE IT DAILY

[nehla in reply to nehla]

dr . SAYA DOES SHE TAKE EGCG & CURCUMIN , WHAT IS THE DOSE ON EACH?

[CLLAdvocate]

Hi nehla. About four years after his diagnosis of CLL at age 49, my husband’s ALC began increasing steadily. He began taking 1200mg EGCG daily and his ALC has been stable ever since, as have his other blood counts. It has now been seven years since initiating ECGC and he continues to feel well and has not needed treatment. The only other supplement he takes is 2000IU vitamin D3 daily.

[nehla in reply to CLLAdvocate]

i am taking EGCG andCURCUMIN 4GRAM EACH DAILY IN DIVIDED DOSES FOR more than 2 month , no side effects ,getting CBC & LIVER FUNCTION MONTHLY ,UNDER CARE OF ONCOLOGIST. MY ONCOLOGIST HAS WRITTEN BOOK ON MAN GOT CURED ON WITH ABOVE NATURAL MED.

[AussieNeil Partner Administrator in reply to nehla]

I suspect I know who you are talking about, in which case, the story is far more complex than simply taking EGCG and Curcumin. The person concerned had a splenectomy to reduce his tumour burden (a recommended treatment at M D Anderson back in the 1990s when we didn't have the excellent treatments now available) and maintained his fitness to the best of his ability, even when he was not well. Finally, he has IGHV mutated CLL and those with that favourable mutation, have about a 2% chance of spontaneous remission. I haven't had my spleen removed, but while I was on watch and wait, I did take ECGC daily and sometimes curcumin, kept myself fit, yet didn't cure my CLL. I did have to cut back on the EGCG, because the high dose, along with another natural med, was poisoning my liver (the medical term is transaminitis, or hypertransaminasemia). The EGCG used in the Mayo Clinical trial was a pharmaceutical grade product (no longer available) provided by Mitsui Norin for the trial. Unfortunately, we don't have long term data from the Mayo Clinic phase 1 and 2 trials, but after the trial, there was considerable CLL community interest in EGCG, which is why I used it. One of the Mayo Clinic CLL specialists, Dr Neil Kay, who is highly regarded in the CLL community, warned people with CLL that they should not buy over the counter EGCG, because we don't know what's in it. There are valid concerns about the level of cheaper fillers, pesticides, fungal, bacterial and heavy metal contamination in countries where there isn't adequate regulation of these products, in particular in the USA. I'm in a much more fortunate position, because Australia has much better, (but still inadequate) regulation and monitoring of herbal supplements.

By the way, typing in capitals is difficult to read, and is actually considered to be shouting. I recommend you use the new features provided by this site to emphasise any text you wish to highlight. Just select the text you wish to emphasise, then select the B, I or U below the text entry area to make your text Bold, Italic or Underlined. Everyone here will then find your replies much easier to read.

Thanks!

Neil

[nehla in reply to CLLAdvocate]

which brand & company you buy egcg , appriciate yor reply

[CLLAdvocate in reply to nehla]

NOW brand at Vitasave.ca

[nehla in reply to CLLAdvocate]

which BRAND of EGCG you buy

[CLLAdvocate in reply to nehla]

The brand is NOW.

[thompsonellen]

When first diagnosed, I explored alternative remedies (like many of us have) and quickly abandoned EGCG which gave me a bad reaction. I did everything I was "supposed" to do but have high risk CLL and was in treatment 6 months after diagnosis. I think 1 in 3 of us never need treatment and everyone needs to make their own decisions on this very personal journey, but I don't think there are any proven "silver bullets."

[forestblue]

From the Mayo Clinic website:

Green tea extracts for people with early-stage leukemia

A green tea extract has shown some promise in initial clinical trials for treating chronic lymphocytic leukemia. Laboratory research determined that a compound in green tea extract, called EGCG, can kill chronic lymphocytic leukemia cells. A study of people with early-stage chronic lymphocytic leukemia found that EGCG in pill form reduced some signs of the disease. But green tea trials haven't been conclusive, and this subject requires more study before doctors can agree on the merits of this treatment.

Quoted here: mayoclinic.org/diseases-con...

But the dose of ECGC was very high and can cause liver damage so you need medical monitoring to take it at that level.

[Big_Dee]

Hello nehla

The Mayo Clinic did an extensive trials with EGCG back in 2004 and according to their website no one with CLL as ever been cured by medical intervention. There are doctors who now feel 10 year remission is same as being cured.

The Mayo clinic also discontinued studies using a high lab purity EGCG which is not available. Study also determined that the EGCG could cause liver damage and not worth the risk. This has been born out by recent up swing of people taking EGCG to loose weight, resulting in some people being hospitalized with liver damage. Self medicating is not a good idea as " if a little works, a whole lot works even better". Blessings. did not want to step on your hope.

[BoomrangSuj]

Hi nehla,Here's the reference for the study on invitro effects of Curcumin and ECGC on CLL cells.

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

I do want to highlight the following text from the study (the italics are mine for emphasis):

The data also indicate that sequential treatment of B-CLL with EGCG followed by curcumin is preferable to simultaneous treatment, and is crucial to the efficacy of the combination of these two compounds. Simultaneous treatment of B-CLL cells with EGCG and curcumin resulted in antagonistic effects.

Here is another report by Dr. Ghosh about the effects of ECGC and Curcumin as standalone, simultaneous, and sequential.

researchgate.net/figure/Eff...

I will reiterate that there was no follow up study or even large scale in vitro trial, so I really cannot speak to the real benefit.

Here are Dr. Brain Koffman's views on the subject (including changes in diet):

cllsociety.org/2016/04/37-t...

Finally, the decision is yours, and your oncologist of choice is the person that you should heed to the most, so I recommend that you speak with Dr. Saya about taking ECGC and Curcumin simultaneously versus sequentially.

I followed the sequential regime for 4 years (taking both in their natural food grade format), and did not have to undergo treatment during that time. I am/was 17p del, so high risk markers. I however did not go beyond 4-5 cups of green tea, and ate the equivalent of 1 tablespoon of turmeric either with milk, or included in whatever was for lunch/dinner. I still had my regular liver and kidney function tests as part of my bloodwork.

Four years later, I had RT and abandoned all 'natural' products and as I was prescribed medication and did not want any supplements to interfere with my chemo/BTK inhibitors.

Here is another case report from 2018 with a much happier outcome (15+ years of staying on W&W with only integrative medicines). Note that there is no mention of her markers, and there are many other cases of indolent CLL that did not need treatment for 20+ years.

europepmc.org/article/pmc/6...

Again, a sample on 1 is not conclusive of anything, and as you might have gathered by now, CLL is such a heterogenous affliction, that we all might be a sample of 1 about disease progression, and what might help in slowing down the progression.

So till the time you don't have to start treatment, in my opinion, doing whatever makes you feel good and is discussed with your primary oncologist, is worth a shot!

Tea and turmeric were part of my diet anyways, so just spacing them 24 hours apart wasn't much of a chore... as for a silver bullet, I have it along with rainbows and unicorns in my 'hope and dream' closet

😀

Best for your CLL journey!

[AussieNeil Partner Administrator in reply to BoomrangSuj]

Good summary Sujitur!

I see the case study you referenced as basically advertising for the George Washington Center for Integrative Medicine, where the patient self-referred.

Per the Biographies

• Gregory Haskin is a current student at Drexel Medical center and a graduate of the Complementary and Alternative Medicine Program in the Department of Physiology and Biophysics, Georgetown University, in Washington, DC.

• Mikhail Kogan, MD, is the medical director of the George Washington Center for Integrative Medicine in Washington, DC.

I find it frustrating, as you noted, that the woman's markers were not stated, despite the case study noting their importance. All we know is that she had a 'normal' karyotype. An episode of splenomegaly is mentioned, but no measurements are provided. There is no mention of changes in her lymph node sizes. Her WBC count only looks at part of her tumour burden. Figure 3, the plot of her WBC over time, includes "Of note, the sharp drop in 2008 and mid 2015, both correlate with acute infections. Pneumonia in 2008 and upper respiratory infection, turned into bronchitis in the second part of 2015." There's no mention of why those changes may have occurred, but many drugs, including IV antibiotics, can cause this, as I've personally observed in some hospital stays for febrile neutropenia.

Mention of the importance of lifestyle changes is made throughout the case study, but without giving particulars. I'll give you one guess why more detail isn't provided.

There's just not enough information to show why this case study is any different to those mentioned in this case study of the Spontaneous regression of chronic lymphocytic leukemia: clinical and biologic features of 9 cases

ashpublications.org/blood/a...

Neil