Hi there! i finished my last infusion of the 6 cycles of R-CVP treatment in May 2020 which had been recommended for my CLL. my WBC count on 01-01-2021 was 11.8, Lymph- 9.7, Gran-1.6, HGB-13.8, RBC-4.32, PLT-221. my hematologist told me that there is no indication for treatment at this moment but appointed me for BR treatment if my condition deteriorates. I am trisomy 12 positive with unclear result of IGHV mutation status. The recent FISH test i had didn't tell if IGHV is mutated or not but stated " the test showed negative status" for IGHV mutation status. MY attending hematologists said this description is not clear. Anyway, i am stuck in the middle and my doctors want to continue with treatment of BR. but their decision didn't go well down my throat because of my suspicion on BR therapy for trisomy 12. until decision is reached with my doctors about whether or not BR is the right choice for my case, i would like to try EGCG and Curcumin traditional therapy. As we all know, these ingredients are extracted from green tea and turmeric. but i could only find green teabags and the crude turmeric powder people locally use for cooking spice. i cannot find commercially purified extracts at local level but forced to use green teabags for 3 days and turmeric powder for the next 2 days in order.i am using green teabags in boiled water with sugar and turmeric in boiled black tea with sugar. Any information on how i can use this products or get purified extracts from pharmaceuticals dealing with these products is highly appreciated.Thank you all for your kind response
amaagabg2020
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amaagabg2020
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Hello ama, there have been many green tea discussions on here. While there might be some arguable small benefit to turmeric and green tea, I do not think any credible Cll doctor in the world would suggest it as a substitute for traditional Cll treatments.
Your FISH test would not determine your IGHV status. If you are not responding to chemo treatments, then that would point to an unmutated status.
You can still get a benefit from a treatment like BR even if you are unmutated. Ibrutinib or venetoclax could be better options, but you might not have access to those options where you are.
Others on here would be better at giving green tea tips, there have been only a couple studies with no real clear results. There is some evidence that green tea can kill Cll cells in vitro, meaning in a test tube, but I could kill Cll cells with bleach and lots of other things in test tubes. I think one problem with green tea was that to get it to a therapeutic level people were having to take toxic amounts of EGCG.
You are asking good questions. If someone does suggest green tea as an alternative to regular treatment, another question you might ask that person is to show you a list of Cll doctors who would actually support that plan. I doubt any such list exists. My doctor advised me that I could drink green tea if I liked the taste of green tea, but not as any part of a plan to treat my Cll. Good luck to you.
Thank you for your informative response. is there any success story of trisomy 12 positive and IGHV mutated CLL patients treated with BR chemoimmunotherapy. i am very grateful for any information on this confusion
I appreciate your limited options in Ethiopia, but you won't get enough EGCG from drinking tea to make much of a difference. The Mayo Clinic phase 2 trial settled on 4 grams of pharmaceutical grade EGCG extract, marketed as Polyphenon E, made by the Japanese company Mitsui Norin and which is no longer produced in capsule form used in the phase 1 and 2 trials: polyphenon.jp/en/about/inde... You'd need to drink at least 20 to 40 cups of tea per day to get anywhere near that 4 grams of EGCG dose.
About a third on the trials didn't see a reduction in their nodes and lymphocyte counts, plus we don't know what happened long term, because the company switched to genital wart research. That eventually gained them FDA approval for an EGCG based ointment. The ointment approach avoided liver toxicity issues, which are real. You do need to have your doctor check your blood liver function tests to ensure you aren't damaging your liver when you are taking a dose high enough to hopefully have an effect. With a still low lymphocyte count of 9.7, I doubt you'll be able to see any change, but you might see the lymphocyte count stabilise or slow.
There have been no human trials of EGCG and turmeric combined, but an in vitro study showed that they did not work synergistically in combination. An Australian study of turmeric capsules enhanced for absorption was not all that impressive, indicating it might possibly work to slow down progression in a few people, but I have concerns about the study methodology. See: healthunlocked.com/cllsuppo...
The herbal supplements industry is not well regulated in most countries, so there are unfortunately valid concerns about the dose accuracy, product substitution and the level of contaminants, (e.g. bacterial, fungal, pesticides and heavy metals). So you need to seek a reputable brand, backed by independent laboratory testing.
If you decide to take both EGCG and turmeric, you should take the EGCG and turmeric 12 hours apart, to hopefully prevent one from interfering with the effect of the other. Both have fairly small half lives in blood serum concentration.
your information is always very educative to us and we are very lucky to have more experienced people like you on this post. I just embarked on this option of using EGCG and turmeric because of inaccessibility to better targeted drugs such as ibrutinib and acalubritinib in Ethiopia. the only option for people like me with trisomy 12 in Ethiopia is to accept docs' decision to take chemoimmunotherapy such as BR which is not helping in my case or look for other options like i am doing with turmeric and EGCG. if there are one or two alternative sites where to find these products(turmeric and EGCG) with full information on company's reputation, price and their address, i would be very grateful.
The EGCG that the Mayo Clinic used in trials was special lab grade, no longer available. Cllcanda calculated that you would have to drink 26 cups of green tea to get the same benefit as Mayo Clinic trial. Blessings.
I highly appreciate you for taking your time to respond. actually it seems a bit beyond the reach to drink these much cups of tea per day. anyway i will do my level best to meet the requirements.
Also be aware that the reason Mayo Clinic stopped the EGCG trials was due to liver damage in some patients from the large amounts of EGCG. As green tea extract has became the rage for weight loss, several people have been hospitalized with liver damage. problem with self medication is "if a little works, a whole lot works even better". I really understand your desire to combat your CLL. I tried green tea and turmeric, it did not even slow my CLL down. Blessings.
Sugar nourishes cancer. I would remove sugar from my diet. I have been taking green tea extract and tumeric for months. I get it from the local health food store. There is no change in my conditioning my situation to
More generally, trying to limit sugar (or more specifically carbohydrates, which our bodies turn into glucose to provide our body cells with energy), has the huge problem in that our body cells rely on glucose for their primary energy source, with our brains using 20% of what we produce. Typical Western diets contain too much processed, easy to digest carbohydrates, in particular sugar, so we are certainly better off reducing our intake to improve our general health, but cutting back on sugar is highly unlikely to make much of a difference in our cancer progression.
Thank you Neil. I am really more than happy to have an expert like you on my side at this turbulent time when i am busy looking for any expert help out there. I have read many of your previous posts on different topics of CLL and found it very very informative. thank you again and again for your lovely posts.
I purchased both at the health store. When I ran out of turmeric. I made my own with organic turmeric powder and black pepper. I had empty capsuls that i also have on hand if I run out again. The green tea extract comes in capsules. 8 also started drinking three to four cups 9f green tea every day.
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What Lipton green tea bags do you folks recommend? None of the boxes define the EGCG amounts.
NOTCH1 mutational status - high risk of transformation and poor outcome
Green tea extract? And vitamins?
