I am Japanese CLL patient, so I am sorry that my English is poor. I was diagnosed this year and stage A. My WBC is increasing at the rate of 1000~1500/month, and up to 27500 one month ago. So, I started to take concentrated green tea and polyphenol tablets (corresponding to several cups of tea; probably taking 500~600mg polyphenol every day). Fortunately, WBC decreased to 25500 in 1 weeks. However, the WBC again increased up to 26500 next week. So I increased dose (corresponding to 10 cups of green tea; may be 1000 mg polyphenols (approximately 500~600 mg EGCG contained). 1 week later, WBC count decreased to 23500. However, WBC increased up to 24500 next two weeks later. I expected that the effects of green tea continue at least several months. Unfortunately, green tea and polyphenol tablets seem to affect only 1~2 weeks in my case. The dose of polyphenol may not be enough. I do not want to take high dose of polyphenols, because it is not good for liver. Anyone have such experience? Please anyone tell me experience of green tea, polyphenol tablets. I hope to hear experiences who improved CLL by taking green tea extracts.
Miee
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Miee
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Your English is very good and you've clearly explained what you want to know.
There are two important points you need to understand:
1) Haematologists don't worry about changes in WBC (more correctly ALC - Absolute Lymphocyte Count) until the ALC climbs above 30 (or 30,000 in your units).
2) The variations in your WBC are most likely unrelated to your green tea consumption as you probably aren't taking a high enough dose. You may also fall into the minority of patients that don't see a benefit from green tea. The best way to work out if green tea is having an effect, is to compare your WBC average now (say over three or more blood test results) with what it was before you started taking the green tea (again over three or more results). Also, you should be looking at the overall trend in your WBC over many months, not looking at month to month changes. Finally, your WBC is only a small part of your tumour burden. Most of it is typically in lymph nodes and at later stages, your spleen and bone marrow. The green tea may also be reducing the size of your lymph nodes, which you can't easily determine without a CT scan comparison, unless you have some prominent nodes typically around your neck, in your armpits or in your groin.
Here are a couple of earlier posts on EGCG which include information on the liver tests you need to watch.
Have a read and please ask if you have any more questions.
Neil
PS Do you live in Japan? If so, have you found a good CLL specialist? I'm asking because CLL is fairly rare in the Asian population, perhaps because green tea is so popular there .
Thank you so much for a prompt response. In Japan, we have only 1000~2000 CLL patients. I guess that we have few CLL specialists, so I want to collect informations on CLL.
You wrote that green tea extract (EGCG) reduced size of lymph nodes . I also know because I read paper on phase II test of EGCG. I wish to know whether reduction of lymph nodes may continue, or it is temporary (again lymph nodes size increase despite continue to have EGCG ), if you have any information.
Finally, I appreciate if you could suggest me the best way to delay progress of CLL.
Miee, since you've read the Mayo Clinic Phase II trial paper, you know as much as I do about the long term use of EGCG. Sadly, Mayo Clinic haven't done a follow-up study on how the patients on that trial have fared. That's probably because:
(a) The Phase II trial funding came from donations provided to CLL Topics/Updates, who went out to tender for a CLL research group to do the trial and Mayo Clinic got the work. There were plans for a Phase III study, but it didn't happen.
b) The supplier of Polyphenol E (the EGCG formulation used by the trial participants) ceased providing Polyphenol E for CLL research. I understand some trial participants continued on with other sources of EGCG, but that was uncontrolled, making any follow up research of limited use.
As with other cancer treatments, it is reasonable to expect that CLL clonal evolution will result in EGCG becoming less effective over time. There are a number of different cell pathways disrupted by EGCG in CLL cells, so that may minimise the chances of clonal evolution developing, but we just don't know. I alternate taking EGCG with turmeric for that reason (trying to prevent clonal evolution), but that is purely something I am doing with minimal scientific research supporting that approach.
As to the best way to delay the progress of CLL, I wish I knew! Obviously getting the right CLL markers (like choosing your parents) works well . Seriously, all I can suggest is that you help your body fight progression by eating a wide range of healthy foods, get/keep fit, try to avoid infections and keep your weight in a healthy range and perhaps try a supplement like EGCG, where there is a scientifically proven benefit for a significant percentage of CLL patients. Just make sure you let your medical team know what you are taking so that they can monitor your liver function and advise you when you should stop taking a supplement if you are prescribed a drug which is not compatible with the supplement.
Miee, one of the frustrations with CLL is that it varies so much between individuals and within an individual over time. That makes it very hard to say on the basis of my experience whether what I've spent a great amount on over the years has done me any good. It is also why people with CLL are so easy to convince that some alternative treatment is doing them good. That's why the only way to really test potential treatments out is by trials with a significant number of patients on the trial.
Having said the above, it was an investigation into quickly worsening neutropenia that led to my SLL diagnosis almost 6 years ago. I got down to an ANC of 0.4 or grade 4 neutropenia which put me at severe risk of infection. My ANC recovered to grade 2 before I started on the EGCG and has gradually dropped to between grade 3 and 4 this year. My enlarged spleen hasn't become any more enlarged according to my haematologist and my lymph nodes aren't much bigger as far as we can tell. My once sceptical haematologist has told me to stay on the green tea capsules. But perhaps this is the path that my CLL would have followed without me taking green tea and turmeric? I've have mild arthritis in my hands - diagnosed by my doctor. I do find that the turmeric helps with that - well I think it does as I gather arthritis can come and go too. Anyway, it is quite some time since my hands have had any discomfort from arthritis. Turmeric is known for its anti-inflammatory properties; perhaps that's helped with the CLL too? But this is all conjecture on my part.
From what little work has been done on turmeric and CLL, it is hard to see how high enough blood serum levels of the active ingredient can be achieved to have any positive effect on CLL. You'll see turmeric sold in various formulations, typically including black pepper/piperine to boost the absorption into the blood stream. Taking it with soy milk or a fatty meal is also supposed to assist the absorption.
As Chris (Cllcanada) has warned elsewhere, in the majority of countries, supplement manufacture and sale is not regulated, so you don't know what strength dose you are getting or what other ingredients (some of which can be quite harmful) are included. In Australia the supplement industry is regulated and the regulating body can and does put companies out of business that do not have processes in place to verify what they sell in Australia matches the claimed ingredient quantities. I don't know what the situation is in Japan.
I totally agree... the problem I have with early quasi treatments is that it 'might' be picking off the low hanging B cells...
New research has confirmed that CLL is an ever changing scene... when the weak B cells are gone in treatment ... the very agressive B cells take over...
This is well documented by Catherine Wu and others...
Know what you are doing... and do NOTHING without your doctor's approval.
Thank you so much for details. Turmeric, interesting.
I have a chronic prostatitis for several years, and sometimes became worse. I guess that because it is a kind of inflammation, CLL will progress concomitantly. I will think about turmeric.
Miee, it is important that you don't try more than one thing at the same time or you won't know what is helping you.
Further, turmeric and green tea have been shown to work better alternated rather than together against CLL. I alternate 5 days on green tea and two days on turmeric.
The suffix ' itis' after an organ in English means 'inflammation of' that organ, but it could be dangerous to take something like turmeric in an attempt to treat your prostatisis without understanding the underlying cause of the inflammation.
Hi, I'm fairly new to all this having been diagnosed with CLL stage A in October with a low count (whatever that might mean), anyway I too asked about Green tea & dosages. In the replies I received it seemed those taking it are on anything from 1000mg up to 3000mg, although it was generally recommended that I should discuss with my Dr, because of the potential problem with liver damage. I'm currently taking 350mg tablets & will discuss further with my Dr when I next see him in April, to see if they have any advice on this topic & whether I should get closer to the dosage the used in Mayo Phase 2 which seems to be 2000mg.
From the many posts I have read & what the Dr's have told me, staying generally fit & health, exercising regularly, avoiding bad doses of the flu, shingles or other infections seem to be the best way of trying to slow the progress of the condition down.
However, you need your doctor to monitor your liver on a regular basis...EGCG in these doses can cause liver problems...
Dr. Neil Kay one of the trial docs no longer recommends the use of over the counter supplements of EGCG, because quality varies and nobody knows for certain the dose or adulterations or toxicities...
Just a few more ideas re delaying the progress of CLL...
I've heard that anything that causes inflammation in your body, can make CLL get worse. This could be allergies like hay fever, being overweight, asthma, infections, any foods that your body doesn't react well to, things that irritate your guts or skin, etc. So it's worthwhile trying to avoid these sorts of things.
As others have already said, anything that improves our general health is good - like exercise, eating well and avoiding infections. It's a good idea to keep up with any vaccinations, especially in the early stages of the disease, because as it gets worse, our bodies are less capable of producing the helpful antibodies from vaccinations. Check with your doctors though, re which vaccinations are safe for people with CLL. ("Live" vaccines such as the one for Shingles are NOT recommended).
4 g EGCG ( we buy it from Healthy Origins TEAVIGO brand more than 90 % purity ) + 8g Curcimin C3 complex with bioperine + 10000 units Vitamin D3 .Response seems to be dose dependent
Yes, my husband takes these doses every day. These are the doses used per day in the MAYO clinical trials. Also a diet rich in soy products { rich in genistein ) and 6 ounces watercress ( rich in phenyl isothiocyanates ). He started 3 months ago when he was diagnosed. We don't know yet how well it works.
Hello Ileana, how is your husband doing now? I hope EGCG, Curcumin, Vit D3 and the diet change have fared well. Mine is newly diagnosed and I'm so scared of what ahead.
Hi Yvonne, my husband is well. His genetic markers are high risk ( IGVH unmutated andNOTCH1 ) but the supplements helped keep the malignant cells out of his lymph nodes even though his ALC has been going up. He just finished a clinical trial at OSU with Dr Byrd with ibrutinib given to early high risk CLL that otherwise would be in w/w. Ibrutinib worked very well for him. He took it early in his disease but now he is off it and back to supplements.
Ileana, it's awesome to hear that your husband is doing well! That's just great. I read about the phase III ECOG Ibrutinib + Rituximab combo trial. Was that what your husband finished? We are considering EGCG, Curcumin and Vit D3 supplements but wouldn't want to damage hubby's liver. How long was your husband on the high dosage supplements? Are you working with an integrative doctor for the optimal supplement dosages?
I don't know much about CLL generic markers. Here is what's on his flow cytometry - expressing CD19, CD5, dim CD45, partial / dim CD20, CD23, dim CD22. Greater than 90% of abnormal B cells expressing CD23.
Thank you for very interesting story. I hope that you will post on PDE inhibitor story. Recently Japanese scientist and colleagues found that a combination of EGCG and PDE inhibitor extremely killed CLL cells cultured in petri dishes. Which kinds of PDE inhibitors did you have? Sildenafil? Did you have a combination of EGCG and PDE inhibitor (at the same time)? In your case, was it effective for suppressing CLL progression?
Thank you so much for a detail. I have read this article. In experiments using CLL cells cultured in petri dishes, a combination of EGCG and PDE inhibitor have excellent results.
Our clonal (cancerous) B-CLL cells are fragile and easy to kill in a test tube (in vitro) with a wide range of substances. (That's why it is so common to see 'smudge cells present' comments on blood test results.) The difficulty comes in proving that something that works 'in vitro' also works 'in vivo' or in your body. There's a lot of science in working out the best way to achieve a high enough blood concentration of the 'in vitro' active substance 'in vivo' to have any clinical effect. Do you inject or deliver the substance orally? How do you prepare the substance so that it survives the digestion process and is absorbed into the blood stream? Can you be sure that the substance isn't neutralised by your body or that affected B-cells aren't able to engage assistance to overcome the effects of the substance? That's why we need properly conducted clinical trials...
Thank you for your experience and valuable comments on in vitro and in vivo experiments. I understand very well what Neil wrote. I am a scientist working on intracellular signal transduction, so I have many experiences on difference between in vitro and in vivo experiments. I have done experiments using PDE inhibitor, so I was quite interested in a signaling pathway inducing apoptosis of CLL cells that is activated by 67 kDa EGCG receptor (cell surface receptor). I believe that clinical EGCG effect is probably mainly due to an apoptosis of CLL cells through 67 kDa EGCG receptor, because EGCG affects cell surface receptor (in other cases of inhibiting intracellular target molecules, much more higher plasma EGCG concentration is needed) . This pathway is strongly enhanced by PDE 5 inhibitor such as vardenafil. Vardenafil is now clinically used in other therapy and its effective concentration for inhibiting PDE 5 is not harmful. Now we know that EGCG is clinically effective for CLL and vardenafil also effective in other therapy, and they are basically safe (although high concentration of EGCG has several side effects). Unfortunately, we do not know whether or not a combination of EGCG and vardenafil may be safe. That is why I asked informations if someone have tried to take a combination of EGCG and PDE 5 inhibitor, because clinical trial will be many years later. I guess that even mouse experiments have not been completed.
The median age at diagnosis for CLL was 72 years in 2000 , now SEER data says 71 yo, the Germans use a 69 year median... the demographics haven't shifted much... I was 52 at diagnosis in 1998...
Same world.. just looks different on the internet...
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