Thank you all for your insightful posts and support! I'm relatively new to this forum- diagnosed in April 2018 with 17P- CLL on abnormal bloodwork. Initially saw my internist, then a private hematologist. Subsequently had CT and new bloodwork at UC Health (Colorado) and on their recommendation, looked into early stage trials (I'm 54 and asymptomatic) at MD Anderson. Nearly 2 months elapsed on WnW, and from this forum I learned about Mayo Clinic's EGCG trials. I'm a health provider and engineer and WnW makes no sense to me-- waiting for a runaway process to cause destruction before intervention is difficult to accept, despite being asymptomatic. My questions:
1. In testing at MD Anderson, it was discovered that I have one normal 17th chromosome, which apparently happens in only 20% of 17P- cases. They could not tell me whether that is significant, but said it can't hurt. Does anyone know the significance of a normal 17th chromosome? Is some type of protection conferred via the normal 17th chromosome? Related to this, I was told at UCH that IGVH mutation status is irrelevant if you have 17P-. At MDA, they said not true- it's a much more important prognosticator than 17P-. Does anyone have info on that?
2. Between my bloodwork at UC Health and MD Anderson, I began to self-medicate with EGCG. First at 400mg three times a day. While on that dose, My total lymphocyte count dropped into the normal range (I was diagnosed very early-- with 13K total white count); and my monoclonal B lymphocyte count dropped from 9,000 to 8,000. Coincidence? Possibly. But I was encouraged by those results. I read Dr. Shanafelt et al, Mayo Clinic studies on EGCG and increased my dose to 1,200mg twice a day. I mapped out the plasma levels, based on a half-life of the drug of about 4 hours and reasoned that this 1,200mg dose would keep my plasma levels a bit higher, while allowing it to drop to almost zero just before waking (allowing the Liver some rest (?)). I took myself off EGCG at 3 months because of the reports of liver toxicity. But I'm still intrigued. It costs only $40 per month vs. $12-15K for Ibrutinib and Venetoclax. While it's hard to imagine that a concentrated green tea extract might be the missing link, it certainly seemed to be pointing the needle the right direction for me. Does anyone know what happened to the EGCG trials? They seemed to mysteriously disappear when Ibrutinib came on the scene.
3. As a Christian, I believe The Lord can restore my health if it is His will. I would like to find like minded people and please be assured that I am praying for every one of you.
Blessings,
Tom
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1) It is my understanding that 17p and IGHV status have different functions with respect to CLL: the 17p chromosome contains the coding for the cellular mechanisms that check DNA copy accuracy and self destruction of the cell if there are errors. Thus chemo treatments that rely on CLL cells damaged by the treatment to self destruct won't work. You would presumably still have some of that capability with one normal 17p chromosome half, presuming it is fully functional.
2) IGHV hypermutation status measures the maturity of the CLL cell. Those with 'mutated' IGVH genes have their B Cell Receptor specific to a given antigen; their CLL has developed later in the B-Lymphocyte lifecycle. This correlates with a longer time to treatment and a longer remission, even effectively a cure for about 60% of those treated with FCR.
The company that made the pharmaceutical grade polyphenon-E (EGCG) used in the Mayo Clinic trials withdrew this product from the market well before Ibrutinib was developed.
A drop in Lymphocyte Count from 9,000 to 8,000 is within the repeatability accuracy of the blood testing machine. I've seen far greater changes in my ALC when I have had frequent testing during hospital stays and when I was having monthly testing. At best you can conclude that your CLL is stable. That's not to say that the EGCG may have reduced any of your swollen nodes. I've been taking EGCG for 9 years and according to my specialist, my spleen is no more enlarged than it was 9 years ago and my nodes haven't enlarged detectable either, (though I don't have a second CT scan to accurately verify that).
Taking EGCG may have the risk of increasing selection pressure for more difficult to treat clones - we don't know. There's also valid concerns about the purity and quality of the supplied product in the unregulated supplements industry.
Hello , after reading this post I have to ask about this EGCG. Is this a pill form of green tea ? Neil you say you take it , at what milligram ? Would you recommend people with SLL on watch and wait take this or should I ask my Dr ? I’ve seen articles about the benefits of green tea but they say you would have Drink a lot of tea to see any benefits. Thanks John
It's my understanding that you couldn't possibly drink enough green tea to get the therapeutic dose. Dosages are discussed in the above article. If you're going to take it, definitely involve your physician and keep a close watch on your liver enzymes. In the Mayo studies, some of the patients developed transaminitis; and there are some reports of people taking dietary supplements containing EGCG causing severe liver damage and even death. Apparently these involve a low percentage of cases, but you want to be as careful as possible.
Thanks Tom I will definitely talk with my Dr about it as my liver enzymes have always been slightly elevated even before I was diagnosed with SLL. I’m new like yourself so I spend most of my day reading about this condition. Thank you for the link. John
Concentrated green tea can be supplied in compressed tablet of capsule format. The Mayo Clinic trial settled on 4 grams of EGCG per day. SLL and CLL treatment are the same and I started taking EGCG when my CLL was still technically SLL. Just be aware of the risk/benefit balance.
Oof! 4g seems like a lot. If the life of an average B lymphocyte is ~3 months, it seems like treating the monoclonal variety for about one life cycle would make sense— then do a fast to give the liver a break. All with zero data behind it.
I see the Mayo Clinic had a prescription version of the green tea , is that available still by a Dr script or just over the counter ? Again I will talk this over with my Dr before I make that decision. Thanks John
Thank you Chris .quick question what are your thoughts on apple cider vinegar with a 1/2 teaspoon of backing soda. I’ve been told by friends that cancer can’t grow in an alkaline body. I don’t buy that Theory. If it was true there would be no cancer. Thanks John
On Chris's behalf, this is just confused, 'half baked' pseudo-science. Apple cider vinegar is acidic and baking soda (in solution) is alkaline, which is easily confirmed by testing with a pH indicator, such as a litmus test strip. Mixing the two will give you a final pH somewhere between the acidity of the vinegar and the alkalinity of the baking soda depending on the proportions, with a PH of 7 being neutral. The fizz you see is from the released carbon dioxide from the acid and alkali reacting thus:
H+ (from the vinegar) and HCO3- (from the baking soda (NaHCO3) -> H2O and CO2
(It's the CO2 from this reaction that causes cakes to rise when baking soda is in the ingredients.)
If you were serious about trying to increase the alkalinity of your body, you'd just ingest baking soda, but due to our bodies use of homeostasis to keep us healthy, you'd be doomed to fail anyway: en.wikipedia.org/wiki/Homeo...
Our bodies just adjust by excreting more alkaline urine and sweat to maintain the ideal internal pH: sciencebasedpharmacy.wordpr...
Thanks for the rapid and detailed reply, Neil! I appreciate that very much. I agree- 2 data points (9K to 8K) don't define a trend; but was encouraged by the total white count dropping below 10K; and by the resumption of IgG production. The latter implied to me that I must still have normal B-lymphocytes doing their thing.
Any idea why the company that concentrated EGCG for the Mayo studies withdrew their product? I've been taking a 98% pure catechin product through Amazon that is supposedly 90% EGCG. The gentleman (whose name escapes me) who wrote "N of One" told me he takes a sustaining dose of 2g EGCG a day. I'll see if I can find out what product he uses. The recent Health Canada news story on evils of EGCG have me on caution regarding the product. Still, WnW seems flawed to me. I was told at MDA that I should not be in any clinical trials because I'm asymptomatic and the physician's oath is all about "Do no harm." Is there no harm in allowing a runaway process to progress?
The Ibrutinib and Venetoclax results are indeed promising. But their cost is staggering. I work for the University of Colorado, which is a self-insuring entity. Because of my position, I was present in a meeting in which there was a debate on whether or not the University could afford to provide benefits for these new targeted therapies (including I and V; and CAR-T). There was no conclusion. So I may find myself in a position of having to purchase the meds myself. That is clearly not sustainable outside the realm of insurance for the vast majority of patients. So an alternative that costs $40 per month looks pretty good-- if it's effective.
I was told I'm not a candidate for chemo (because I'm 17P-). OK by me-- the side effects seem horrendous... but then, you mentioned the possibility of being cured with FCR. Intriguing. I was under the assumption that FCR can actually cause 17P-. No?
Also-- I was staged 0 (Rai) at MDA; but 1 at UCH. My CT showed some possible enlargement in two neck nodes. But they are not clinically palpable, so cannot be Rai 1. Also, I had just had a Moh's surgery done on my neck, which both physicians (MDA and UCH) stated could lead to the lymphadenopathy. My spleen and liver were normal clinically and on CT.
The CLL market is small and the company changed their focus to using it as a genital wart treatment: healthunlocked.com/cllsuppo...
Watch and Wait actually fits in very with 'Do no harm', because no improvement in life expectancy was observed with early treatment. (The risks associated with early treatment - side effects, reduced immunity leading to serious infections, were found to be outweigh the benefits. This was a while back now and there has recently been a trial to see if using Ibrutinib earlier is beneficial overall).
Any treatment relying on CLL cells to have intact mechanisms to self destruct (apoptosis) has the potential to select out sub-clones which are immune to the treatment, hence the increase of 17p- observed in patients treated with FCR (and possibly with EGCG, but we don't know because the trial wasn't long term and there wasn't a comparison assessment done to see if clonal evolution differed between those tacking EGCG and a control group). 17p- sub-clones can increase over time without treatment too. Obviously those who have very long remissions on FCR are unlikely to have developed 17p- clones.
Glenn Sabin is the author. The most important thing I read about his self study was in an interview done with him some time back. During the interview he warned that people should not try to duplicate his routine - that it could have consequences, including death.
Glenn worked very closely with doctors of traditional medicine as well as doctors of integrative medicine and other disciplines to develop his approach, and was very carefully monitored. He also had his spleen removed early in his CLL journey.
I doubt that you would find any good doctor who wouldn't agree that diet and exercise are important, period, not just for CLL patients. For those who want to pursue a plan involving a specific diet and / or combination of supplements, I think that Glenn would be the first person to tell you to find the best doctor you can to work with you, monitor your body's reaction to the course you choose, and help you tweak things if any of your test results start to show problems.
I wouldn’t take over the counter EGCG, you need a medical grade extract. And I would talk to your Dr before starting it but apparently it has melted away lymphocytes and put some people into remission but that’s the medical grade EGCG
Thanks Canuck901. The results I reported came from a product called "Relentless Improvement" Decaffeinated EGCG Green Tea Super-Potent Extract, obtained through Amazon. Oddly, the first two bottles I received (which lasted about a month) stated that the capsules contained >90% EGCG (>98% catechins). But this latest batch I received (same product name) contains >98% polyphenols (>85% catechins) and >60% EGCG. Such is the non-standardization of the dietary supplements industry. Not sure where to obtain medical grade EGCG... anyone got any ideas?
Tom, I do agree with you on being proactive about doing some sort of treatment to a disease that can cause all sorts of problems. But at the same time these treaments have to be proven so they do not cause more harm and add to the issues the disease could possibly bring. But having said that, these treatments should have been proven and brought to us as patients like YESTERDAY! I to go to MDA, the one in Houston. My doctor there is Dr. Weirda. He is top-notch. I have also talked with Dr. Keating and he is great as well. Can not say enough for the entire staff and MDA. My original Oncologist/Hematologist was a former Top Doc from MDA. He was great as well but did not care for his staff. He did provide me with alot of information. He did not believe in supplements or vitamins. He did preach exercise and eating healthy( Mediterranean diet). Also told me to fast 13 hours a day and gave me the book Anti-cancer- A New Way of Life by David Servan-schreiber. He was the first to tell me a cure for this terrible disease is in the air. As for the whole green tea thing. I show a great deal of respect for my liver. If treatment does come one day I do not want to give it anymore stress to deal with. I am good with just drinking Green Tea and decaffeinated at that. In the end, I want to say welcome to an amazing group. A group none of us want to belong to but glad it is here for Support, Education, Information, and Guidance. From a fellow Christian- Keep the FAITH and BELIEVE!! STAY STRONG AND REMEMBER THAT A CURE IS COMING SOONER THAN LATER J.R.
Wow great info JR. Many thanks! Agree on not challenging the liver now. Will check out the book- Thank you! I see a member of Dr. Weirda’s team as well. I agree, top notch. Blessings!
These conclude that early treatments do more harm than wnw.
Also regarding your question about the 17p having one "normal" gene. Since our genes are in a double helix or pairs, when we talk about a "deletion" the usual is to have only one of the two with a defect. There are rare occasions with two deletions, called biallelic, but one bad and one good gene is the most common.
If you want to take EGCG your best bet would be to work with an integrative health practitioner that has experience in using nutraceuticals for CLL patients.
Welcome, and God bless you on your journey. My husband is 11Q deletion which is not good either....wait and watch was a short 2 years....He is a very healthy 65 year old, and started BR chemo last August and it failed as it put him into severe neutropenia for almost 5 months. He just began ibrutinib in May and his labs have been very positive this past week. Several things in the normal range, with few side effects from the drug. We are cautiously optimistic. Please pray for my husband Peter, as I believe strongly in the power of prayer!
Very good & informative responses to your post. I too have looked into EGCG supplements in great detail and depth. Agree with main message from responses which is use caution, especially at high doses. I would like to add there are 2 companies that independently analyze and test supplements available to public. One is Labdoor.com which is free. The second is consumerlab.com which charges a small annual fee. Both of these groups are great sources of info and are consumer supported. Labdoor tests for heavy metals and other important factors. Glen Sabin uses Life Extension decaf mega green tea extract which contains about 325 mg of EGCC per pill. I take one only per day while I’m on W & W. Best of luck to you & all that are fighting this disease.
I also was seen by Dr Zent in 2013 who was one of the authors of that green tea extract phase 2 clinical trial at the Mayo clinic. FYI, I think Dr. Zent is now practicing medicine in Rochester New York. Per that report, I am taking 2000mg of EGCG ( the active component of green tea extract) twice a day. I upped my dosage to that level this past January, 2018. In regards to possible liver damage, I have read that this is not really a significant concern if one gradually increases ones intake of EGCG/green tea extract and gets periodic liver blood tests. My oncologist is aware of what I am doing with nutritional supplements and I get blood tests every 3 months. There is a book out titled " N of 1" by Glenn Sabin who was apparently "cured" of CLL using only nutritional supplements; a quite interesting read. His book references the Mayo Clinic study on green tea. I also take curcumin and a hand full of other supplements which inhibit various inflammatory factors and are pro-apoptosis towards cancerous B-cells. The Life Extension Foundation " LEF.org " has a very good nutritional supplement protocol for CLL. You might want to check them out. I am not aware of any other clinical studies on green tea but I check " pubmed.com " monthly for any new medical research done in the area. FYI , was diagnosed in 2013 with CLL/SLL. My current WBC is 15.6 and my Absolute Lymphocyte Count is 8.6 K/uL and have only slightly increased since 2013. I really do think that the nutritional protocol which I am on is delaying the growth of my leukemia. I spend about $5,000/year on nutritional supplement but as you say, it is a lot less than what I would have to pay for traditional FDA approved medical treatments. My main concern with my leukemia is that my immunoglobulin IGG count continues to decrease and will likely need to go on transfusions of IGG starting next year for the rest of my life. Am not looking forward to that. Supplementing with CoQ10 and vitamin B6 is supposed to boost ones IGG count but so far, it does not seem to be working. Hope this helps.
CD38 negative, ZAP-70 negative, mutated IVgH, and deletion of 13q14.3, IGG count of 441. As I understand it, this combination results in a slow growing cancer but more difficult to treat and having a significant negative aspect to ones Immunoglobulin IGG count. In other words, I'll probably die of some kind of infection before the cancer ( high lymphocyte count) kills me. Don't let me leave you with the wrong impression; mentally I am in great spirits and am going to fight this to the end. Mark
Thanks Mark. We’re the same except for the chromosomal aspect. And I don’t believe either of us will die of this. Not in denial- just aware that we live in a new era of targeted therapies that appear to work. That we may require medication in the way a diabetic requires insulin; but not dying from this... keep the faith.
I don't see why you consider your combination makes you a more difficult to treat patient? You have both the chemoimmunotherapy and targeted therapy options available to you, with FCR offering you a 50% chance of a very long remission, even a cure! About half of us are unmutated IgHV and are likely to do poorly on chemoimmunotherapy, with some of us having no access to non-chemo targeted treatments because of where we live or our financial capacity to pay.
Your IgG count is not a factor in your treatment choice, though you may be at a slightly higher risk of infection if you get to the stage of needing treatment. If you are having serious infections before needing treatment, then IgG infusions can mitigate that risk. There are other members with lower IgG counts than yours who are remaining healthy. You need to bear in mind that IgG is made up of perhaps millions of antibodies for different antigens you have encountered in the past. How effective they are in keeping you healthy depends on whether you have them for pathogens you are being exposed to now and how healthy the rest of your immune system is in responding to pathogens labeled for destruction by your antibodies.
I am 17p deleted. See my posts on ECGC and my Imbruvica plus Venetoclax trial.
The Mayo Clinic trial was sort of crowd funded.
The advantage of ww is the weaker clones take food from the stronger clones thus allowing slower progression.
That is why FCR is very bad with 17p delete md people like us.
There is good information on green tea and other subjects on the CLLSociety web site.
You can also post questions for Dr. Furman and they will give you answer pretty quick.
Based on many sources I have become Vegan. There are great meat substitutes based on plants now. Beyond burgers are very good. They serve them at the veggie grill and TGIfridays.
I am now nearing the third anniversary of my 17p- CLL diagnosis. Since my original post on EGCG I have modified the regimen twice, both to good effect; and I have learned a few things. First, in the Mayo study, there were no participants who were 17p-. Second, they were taking the EGCG with food. Third, EGCG is poorly absorbed in the gut. Fourth, EGCG is not very stable in the plasma, being broken down rapidly to inactive metabolites by a variety of processes. And fifth, it has a half-life in plasma of about 3.5-4 hours.
Based on the above I did further research on EGCG. I learned that it shouldn’t be taken with food for best absorption. Wait at least 30-60 min after your last meal. Second, from the Journal of Molecular Medicine I learned that piperine significantly improves its absorption from the gut. The best source of this is fresh ground black pepper, and the correct amount is about 1/4 teaspoon per 800mg EGCG. Now once it’s in the bloodstream, how to stabilize it for maximum efficacy? From the Journal of Nutrition I learned that plain old Vitamin C will bind and protect EGCG from being broken down quickly to inactive metabolites. 200mg Vit C is the right amount per 800mg of EGCG. Take more and it will simply enrich your urine as it will be excreted.
The half life of EGCG is important. If you were to take a megadose of 4g, it will not be fully cleared from the plasma 24h later when you take the next dose. Over several months time its plasma concentration may have increased enough to cause liver enzyme issues like those observed in the study. I am hypothesizing about that, but because I believe it, one day per week, I don’t take any EGCG. This should allow the level to drop to a safe level before taking the next dose.
So my results were these: 6 months after I began this regimen, my ALC had dropped 30%. Not in remission but close. Over the next several months it remained pretty flat but increased slightly. Last summer I developed a kidney stone that required surgery for a rupture that developed. In that timeframe my white count again rose due to infection. A month later it had dropped slightly. I began a slightly different regimen. Every other day I take 1600mg EGCG with 1/2 tsp of crushed black pepper and 400mg Vit C. On alternating days I take 800/0.25/200 respectively. On Sunday I take none. So Monday is “one day.” Tuesday is “twos day.” Wednesday is “Onesday...” etc. to Sunday is “noneday.” Since I started this my ALC has again dropped 25%.
I think that there is definitely something to EGCG in the treatment of CLL, at least my form (which was again not studied) and at my stage. I post this now in the hope that others may want to try this and let me know how it works for you.
Finally, I have my blood tested every six months. Liver enzymes are being monitored and are stable. I barely qualify for the CLL diagnosis now (TEC 12.3, ALC 8). On the advice of my oncology nutritionist I use the Source Naturals brand of EGCG. I had been on a pretty strict Mediterranean diet but found that spinach and walnuts which I ate a lot of are both very high in oxalate— the most common type of kidney stone is calcium oxalate. Plus we have been without a real kitchen for 5 months as we undertook a significant renovation on our home— so the diet went out the window. It must be the EGCG then... and perhaps the prayers of others.
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