Am new to this website as of today. Am 66, male - diagnosed with CLL/SLL in March 2013. Am at stage 0-1. CD38 negative, ZAP-70 negative, mutated IgVH with deletion of 13q14.3. WBC is currently 15.6 K/uL and absolute lymphocyte is 8.6 K/uL. My main concern at the moment is my immunoglobulin IGG count is 441. Once this IGG count goes below 400, I need to start a discussion with my oncologist about starting a periodic IGG transfusion program. Have not had any infections, colds, etc. Have been taking green tea extract , curcumin and other nutritional supplements since the beginning of my diagnosis. Currently am taking 2000 mg of EGCG ( the active component of green tea) twice per day and 2,400 mg of curcumin twice per day, along with some other pro-apoptosis and anti-inflammatory nutritional.supplements. My oncologist is fully aware of my supplement protocol and get blood tests every 3 months to check for possible liver problems. Have been seen by Dr. Zent at the Mayo Clinic in 2013 who was one of the authors of the phase 2 green tea clinical study. Based on a clinical study I found on pubmed.com concerning how taking CoQ10 and vitamin B6 might be able to increase ones IGG count, I have not had much luck with this protocol. But I will continue to give it a try for another 6 months. Much rather do this protocol versus a monthly IGG infusion program for the rest of my live. I am under no illusion that taking a few supplements will cure me. All i am hoping for is that doing such might delay first time to treatment. I think this nutritional protocol is indeed having a positive effect in keeping my lymphocyte count down and inducing apoptosis in my cancerous B-cells. I do a review on Pubmed.com monthly to determine whether any new research has been conducted on both nutritional supplement treatment protocols and traditional western medicine treatments. The only places I have found who will utilize nutritional supplements in regards to CLL treatment is the Life Extension Foundation LEF.org and the Block Center for Integrative Cancer Treatment & Wellness. The LEF has a very good nutritional supplement protocol on CLL on their website which is fully reference by medical research reports which demonstrates effectiveness. For members, the LEF has oncologists ( real doctors) on call which you can talk to for free. Recently, I have started to question whether my initial diagnosis of having CLL/SLL was correct. My last Cytometry Flow test in June 2018 suggests that my underlining disease might not be CLL/SLL but may be something called "Monoclonal B cell Lymphocytosis" (MBCL), which, as I understand it, is like a pre-cancerous disease, which mutates into CLL at a slow rate over a period of time. Both CLL and MBCL have very similar Cytometry Flow test markers.
Am new member: have CLL/SLL since 2013 - CLL Support
Am new member: have CLL/SLL since 2013
Hi Markjeep51
Welcome to the group, looking at your blood results you have the desirable 13q mutated status which with Cll offers the best possible outcome in terms of remission from treatments. There could be a possibility from FCR you could exceed a remission of 10 years or more or possible a cure as some with the same results have reached up to 20 years plus.
The Mayo clinic is world renown for Cll so your definitely in the best hands but I can’t answer your question in regard do you have Cll or MBCL, there are others in the site who you could discuss your results in more detail and might be able to help you further.
Stuart
Hi Markjeep51 and welcome!
With an absolute lymphocyte count (ANC) of 8.6, you have passed the MBL to CLL threshold of 5.0. This post by CLL specialist Dr Sharman explains more: healthunlocked.com/cllsuppo...
As Hidden notes, you have the most desirable prognostic CLL markers and have a good likelihood of not requiring treatment for a long while.
I'm not sure why you are so concerned about avoiding IgG infusions should they ever be needed. For starters, a low IgG count does not mean that you need IgG infusions; even below reference range results are able to keep some of us healthy. It's when we both have low counts and several episodes of severe infections that IgG infusions can be a very effective way of keeping us healthy. That's particularly important with CLL, given it's infections that are likely to cause our death rather than the impact of CLL on our blood counts, etc. More here on things we can do: healthunlocked.com/cllsuppo...
With regard to your use of EGCG and turmeric, only EGCG has been tested in clinical trials at Mayo; we have no evidence of the effectiveness of turmeric in vivo. However, one research paper found that in vivo, taking the two supplements at the same time reduced their effectiveness and they worked best taken alternatively: clincancerres.aacrjournals....
Neil
I fully and totally agree with everything you have said. Am aware of the EGCG and curcumin negative interaction so I take the curcumin first thing in the morning and then take the EGCG about 3-4 hrs later. Thanks for the website suggestions !!!! I was only aware of MBL as of yesterday and am still learning about it. As you say, maybe I should not be so concerned about IGG infusions. Once again, thank you for your concern I really appreciate it. Mark
Is anyone really sure (a) if there is an apoptotic effect of using EGCG and Curcumin? For three years, I took them all at the same time (clinical trial dosage of ECGC) and 4000mg curcumin, every day. All tests fine. Then, I re-read (more closely) suggestions about alternating them. Now, I take them on opposite days. I split the doses, half in the morning, half in the evening. My numbers went down three months after making the change, but I'm willing to bet the drop was within the range of either sampling error or daily variation. Still, I'm sticking with it. My CLL specialist recommended EGCG (and possibly curcumin) back when I was diagnosed in 2013.
As I understand it, only one phase 2 clinical study on EGCG has been performed that demonstrated evidence of apoptosis. I would suggest you perform a search into the Federal databse called Pubmed.com for medical research reports into the effects of curcumin on CLL. You will find a lot of research reports on promoting cell arrest which induce mitochondria repair actions and inhibiting various CLL inflammatory proteins ( for example , curcumin Is a COX-2, 5-LOX, NF-kB and a TNF-alpha inhibitor) but no reports summarizing "clinical" studies on humans. As far as I can tell, Just a variety of test tube and animal studies; no human clinical studies to date. Note that most of the reports in Pubmed.com require one to pay for the "full" report. But most have a long abstract available which is generally quite easy to understand and is typically all ones needs to know. If I really am interested in getting a hold of a full text report, I simply go to my doctor and ask his office to get it, since they are typically already paying members of the organizations that publish such reports. Note that I also take some Milk Thistle and Pomegranate which inhibits many of the inflammatory proteins which curcumin and EGCG do. You can find such reports ( i.e various test tube studies on CLL cells) on Milk Thistle & Pomegranate also on Pubmed.com . Since I am an engineer by training, I enjoy doing experiments on myself to try and determine whether any of these other nutritional supplements might have a positive effect on my CLL. One supplement I had to stop taking was fish oil, since it was having a significant negative effects on my hemorrhoids. Ever year, I fine tune what supplements I take for both cost and effectiveness reasons. I have also limited my intake of vitamin C to 2000mg a day due to the possibility of increasing the probability of one getting kidney stones; according to a Mayo Clinic report. Note that the LEF.org foundation has a very good nutritional supplement protocol on their website for the various leukemia's; which is all properly referenced by published research reports.
I am a little confused on one small point you make. I have recently read the CLL summary article by Dr. Sharman which you suggested above. It was a great and informative article. But in regards to the whether I probably have CLL or MBL, I think my absolute lymphocyte count provides evidence that my primary disease is more likely to be MBL or SLL at the moment and not CLL.
To be specific, my lymphocyte count is 8600 per uL; which consists of both B cells and T cells. This reading would then suggest that the number of monoclonal B lymphocyte cells is at most around 860 per uL; assuming that 100% of my B cell lymphocytes are cancerous. This 860 count was calculated at being at most, 10% of my absolute lymphocyte count according to Dr. Sharman's article since around 90 % of my lymphocytes are T cells. So since this 860 count is well below the 5000 per uL criteria count for clonal cells, I probably do not have a CLL or a significant amount of CLL cells. So as I interpret all of this, I either have 860 per uL of CLL cancer cells or 860 of MBL pre-cancerous cells or something in between. This approach is exactly how Dr. Sharman calculates ones monoclonal B lymphocyte count. Do you agree or am I missing something ? Now I may have SLL to some limited extent but it is unclear how one would really determine such. My lymph nodes and spleen are swollen a very little bit which would suggest, along with supportive Flow Test results, that I may have SLL to some extent. Note that according to my Flow Test, my CD19+ B cell count was measured at 23 % of total cells. ( note that i don't know what is meant by " total cells") . As I understand it, the CD19+ protein marker is attached to CLL or MBL cells. So it might be logically to assume that only 23% of my B cells are CLL or MBL cells. Therefore, if my interpretation is correct, my monoclonal B lymphocyte count may be closer to 197 per uL ( = 23% times 860) and not 860 per uL. Would you or someone comment on my analysis.
With my emphasis via underlining, as Dr Sharman says in his article, In normal physiology, individuals may have a white blood cell count of 4-11 thousand with 20-40% being lymphocytes. So at the upper range there may be about 4000 lymphocytes and about 10% (around 400 cells) should be B cells. These are ballpark estimates and can be fairly variable.
In MBL an individual may have up to 5000 monoclonal B lymphocytes per microliter. They should also not have enlarged lymph nodes, a big spleen, or other symptoms of lymphoma / CLL. If the numbers are higher or the nodes / spleen are enlarged there is something more going on."
With an absolute lympocyte count of 8,600 per uL, you have over double the normal number of lymphocytes and they are most likely clonal B-lymphocytes. You don't have normal physiology, so you can't apply the 10% rule! If the over-abundance of ~4,600 lymphocytes (assuming that you were at the top of the lymphocyte reference range when you were healthy), what else could these excessive lymphocytes be? Using Dr Sharman's figures, you probably have at most (4,000 - 400 = 3,600) non B-lymphocytes or 8,600 -3,600 or 5,000 B-lymphocytes, of which around 4,600 (minimum) are monoclonal.
The latest iWCLL guidelines state "in the absence of lymphadenopathy or organomegaly (as detected by physical examination or imaging studies), or of disease-related cytopenias or disease-related symptoms, the presence of < 5.000 B-lymphocytes per μL blood is defined as “monoclonal B-lymphocytosis” (MBL).
So as you appreciate, calculating your count of monoclonal B-lymphocytes is besides the point if you have SLL (Small Lymphocytic Lymphoma, which you may have, given you have slightly swollen nodes and spleen. How do you know that your spleen is swollen, via CT scan or is it 'tippable', i.e does it protrude below the ribs? My spleen was tippable at diagnosis and while I had a normal lymphocyte count, there were enough CLL cells to test positive on a Flow Cytometry test. Many with SLL require a node biopsy to confirm CLL/SLL.
What's important is whether you have CLL/SLL or MBL. There's no discernible difference between CLL and SLL cells, though eventually we will probably find why in those with 'SLL' CLL/SLL cells prefer to congregate in nodes and aren't significantly present in the blood.
(I find that talking in percentages when there's an unbalanced presentation of cell types less than helpful, because the over-abundance of one cell type distorts the percentages due to the over-abundance of that cell type. We really need to look at absolute counts, which is what you are trying to establish, but on the false assumption that percentages stay constant - they don't!)
Neil
I now understand and Fully agree with your logic. After I sent my question to you, I had the same thoughts as you and immediately started to question my own argument . I really do appreciate the time you spent educating me. I fully agree now that talking in percentages when there is an unbalance of cell types is less than helpful, as you say above. Once again, thanks for educating me!!!!!!!!!!!!!!!! Mark
MBL is considered a precursor to CLL...apparently loads of people have MBL and only a small percentage of MBL cases progress to actual CLL every year. I think around 2% or 3%. I am not sure what separates MBL from CLL in clinical terms.
What you say is my understanding also. Thanks Mark
Welcome to the club markjeep51. Loads of friends, wisdom and support. Hope you stay stage 0 for years! Which part of the world are you in?
UK Sparky
I live in Tennessee, USA.
Hello Markjeep51,
I'm new to CLL diagnosis (April 2018) in Stage 0, I'm told, and relatively new to this site. I've been very curious about nutritional efforts and want to do all I can to impact my length of time until I need treatment. (I'm 13q deletion and unmutated.) I tried to look for the LEG.org you mentioned, but was confused by my googling results. I've consulted with Cleveland Clinic Integrative Medicine Dept, and have recommendations about what to increase and what to avoid, but this was more generic and not specific to CLL. Could you clarify the resources I might find useful? And how did you get the EGCG and high dose curcumin?
Thanks for posting! I find this site to be very informative and helpful...
Lynn
The web site is LEF.org ; not LEG.org. I suggest you call them on the phone and ask to speak with a "wellness specialist", requesting that they forward you , via email, their website address of the "CLL nutritional supplement protocol". Their protocol is fully annotated with medical research references, which can either be accessed and read via PubMed.com or the LEF.org foundation is typically willing to email you the websites that corresponds to the referenced research reports. My main complaint with their protocol is that I think it is a couple of years behind the times not as up-to-date as it could be. But as you may have read on this blog, the only nutritional supplement which has gone thru a phase 2 clinical study ( which is a study using live humans) for CLL, as far as I can tell is green tea extract. The remaining research is based on test tube ( which is applying a nutritional supplement to cancer cells within a test tube in the laboratory) or animal studies (giving an animal with cancer a nutritional supplement and seeing how it reacts). Also, as indicated by some of the people on this blog, using nutritional supplements in combination with chemotherapy may be dangerous because of the unknowns associated with doing such. But is some cases, there is medical documentations that doing such, for some specific cancers, may be a good idea to reduce chemo induced nausea or it may enhance the effectiveness of the chemo treatment. But before you embark on such a tract, I suggest you make sure you and your oncologist are in full agreement.
As you can probably see from my past postings, I am not the kind of guy to just Wait & Watch (WW), as the situation slowly worsens. There are, in my opinion , a few common sense things one might want to consider during this WW ( non chemo treatment) period. The main nutritional supplements I take during my WW period is green tea extract, curcumin, pomegranate, and resveratrol. All are well documented relative to their impact( either proven via clinical studies or theoretical) . But you will need to make sure you are getting the highest quality product; they are not cheap.
Note that I have not found a doctor who will comment on my nutritional supplement list. At Vanderbilt in Tennessee, it is my understanding that it is the policy of the hospital to forbid their doctors to comment on nutritional supplements. I have also personally found that the Mayo Clinic in Rochester Minn, also is quite tight lipped on nutritional supplements. I have also found that many hospitals are now advertising that they offer "Integrative medicine"; implying that their treatments utilize a combination of western medicine practices , meditation, various scents/aromas, exercise, and nutritional supplements. And when it comes to nutritional supplements, they are typically used in the contexts of minimizing the nausea effects of chemo treatments and Not towards any pro-apoptosis ( cancer cell killing) approaches. So be careful when selecting a hospital. I have also contacted hospitals like MD Anderson and the Univ of Pennsylvania and they were also not willing to provide me their opinion of nutritional supplement applications during my WW period; so I cancelled my appointment plans. I did however get the impressions that both of these hospitals may be doing some research into the application of nutritional supplement application and cancer. Hope this helps. Mark
Thank you for the very informative and helpful reply! It seems sad that in the medical world there are camps with any need for rejection of other camps... I 'm a fan of keeping options open and hoping for research to occur in the world outside of that which benefits the pharmaceutical industry... Thank you again!
Lynn
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