I earned a degree in Electrical Engineering from the University of California, Berkeley.
Worked in Silicon Valley for several years and managed to join a start up company prior to it going public that was very successful.
During 2015 I started seeing a Naturopathic doctor and became impressed with her approach to health. Normal office visit was 50 minutes.
A Hematologist diagnosed me during December 2021 with CLL while having night sweats, weight loss and WBC of 26,400 and LDH of 431.
Hematologist put me in a WATCH and WAIT protocol and stated that she would "start a pharmeceutical intervention" when my WBC was over 30.,000
My 1st ND referred me to an ND who treats cancer patients who IMMEDIATELY implemented an EGCG and Vitamin E based protocol that erased my night sweats and weight loss in LESS THAN a month.
Adding Low Dose Naltrexone to my protocol.
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leftysfsl1945
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You've repeated much of the information in your post above, which was in your earlier reply of 18th March 2024, but back then you didn't respond to my I reply, healthunlocked.com/cllsuppo... so I've copied it below. As I noted then, I'm sure many will be interested in knowing more about your experiences with your particular CLL, so please, could you share a bit more as I requested? Of note, a haematologist stating that 'she would start a pharmeceutical intervention" when my WBC was over 30.,000', is not following NCCN or iwCLL guidelines. Also there are many other possible reasons for a high LDH than active CLL. A one off high result is most often due to poor blood taking, transport or processing, plus there can be biological causes other than active CLL.
Neil
~~~~~~~~~~~ My earlier reply ~~~~~~~~~~
I'm sure that there are many members very interested in your CLL journey, so why not share more of it in your profile, (including your prognostic markers if known) and provide regular updates in your own post? Here you have tantalising shared that "Despite the fact that my EGCG based regimen eliminated night sweats and weight loss (197 pounds to 167 pounds) in less than a month AND my WBC dropped from 26,400 to less than 13,000 (with ZERO side effects) my Hematologist suggested that I SUBSTITUTE ibrutinib".
- that "according to the National Comprehensive Cancer Network (NCCN) guidelines I am in Partial Remission (PR)."
- and a "Very high probability I will be in CR before the end of the year."
Sadly, we know from CLL Society reported studies; confirmed by many shared examples to our community, that some oncologists and hematologists do recommend treatment before it is required per the NCCN or iwCLL guidelines, unless they specialise in treating those with CLL. Given your familiarity with the NCCN guidelines, what were your specific triggers per the NCCN or iwCLL guidelines that it was time for you to start treatment and why do you consider you have a very high probability of a CR this year? (For those interested, this pinned post contains links to the NCCN and iwCLL CLL guidelines healthunlocked.com/cllsuppo... )
You have shared a change in your WBC, but given that's not an accurate measure of your CLL blood tumour level (a quarter to a half of your WBC could be due to neutrophil and other WBC counts and hence responsible for much of your improvement), nor is it particularly high (we have members with WBCs of several hundred thousand in watch and wait), given your confidence of achieving CR this year, I presume you are tracking other tumour load indications, (spleen and node size, haemoglobin, platelet counts etc. and are seeing encouraging improvements.
Personally, early in my CLL journey, when I was taking EGCG and turmeric, I saw occasional significant drops in my ALC, including one from 20,000 to 8,000 (see attached). My ALC even stabilised in the last 3 years of my watch and wait period, but the overall trend was upwards. Like yours, my ALC also wasn't all that high, as my CLL started as SLL. My problem was that my platelets and haemoglobin just kept trending down, due to bone marrow infiltration, plus my spleen and nodes slowly kept enlarging. With CLL, given your understanding of how a CR is assessed, you know that we need to monitor changes in the total CLL burden. We also need to keep in mind that it is possible to change the signalling directing the distribution of CLL cells between the blood, nodes and bone marrow, such as with cannabis (incidentally something along with IV vitamin C that Dr Winters is studying and which have not shown effectiveness with CLL. Her other interest, mistletoe, which you are using, does have this intriguing meta-analysis paper showing a possible effect on cancer (not specifically CLL).
Survival of cancer patients treated with mistletoe extract (Iscador): a systematic literature review (with my emphasis)
Conclusions: Pooled analysis of clinical studies suggests that adjuvant treatment of cancer patients with the mistletoe extract Iscador is associated with a better survival. Despite obvious limitations, and strong hints for a publication bias which limits the evidence found in this meta-analysis, one can not ignore the fact that studies with positive effects of VA-E on survival of cancer patients are accumulating.
From the results:-
The majority of studies reported positive effects in favour of the Iscador application. Heterogeneity of study results was moderate (I2 = 38.3%, p < 0.0001). The funnel plots were considerably skewed, indicating a publication bias, a notion which is corroborated by statistical means (AC = -1.3, CI: -1.9 to -0.6, p <= 0.0001). A random effect meta-analysis estimated the overall hazard ratio at HR = 0.59 (CI: 0.53 to 0.66, p < 0.0001). Randomized studies showed less effects than non-randomized studies (ratio of HRs: 1.24, CI: 0.79 to 1.92, p = 0.35), and matched-pair studies gave significantly better results than others (ratio of HRs: 0.33; CI: 0.17 to 0.65, p = 0.0012).
Note that these studies are with respect to Viscum album (VA-E), the European white-berry mistletoe. I was recently surprised to learn that Australia has nearly 100 different species of mistletoe!
With respect to vitamin E, I'd be interested in any studies behind this recommendation; I can find positive studies regarding the effect on transaminitis with non-alcoholic fatty liver disease and rheumatic arthritis, but not cancer.
I hope you do achieve a CR, but given we strive to be an evidence based community, providing more evidence of your progress would be welcome.
Neil
My ALC was also low, but could jump around significantly - without supplement influence
You have shared in your bio that you reside in the USA. Therefore you have the best access to prognostic marker testing in the world.
All of us should have our flow cytometry results available - it's how our CLL diagnosis is confirmed by the specific CD markers, with CD38 status providing a good indication of CLL progression rate. The next most commonly available markers, are FISH results (a check for the common genetic changes 13q del, etc., in the CLL genome). The most useful marker is the IGHV mutation status. It rarely changes over time and is most strongly indicative of whether a particular case of CLL is likely to be indolent or aggressive. Other fairly commonly checked markers are B2M and LDH (though as I mentioned before, a high LDH result can often be due to causes other than active CLL). Prognostic markers are only a statistical guide of the likely path our CLL journey will take. It's trends in our CBC results that give a better indication of our likely time to treatment. In importance, I'd suggest it's the trend in haemoglobin, platelets and finally lymphocyte count (specifically the doubling time).
Engineers commonly measure and track changes in factors that influence the effectiveness of their designs and to determine when maintenance is required, so I would expect that you would have sought and recorded much of this, particularly given you have opted for a non-conventional approach to managing the health of what should be very important to you, your healthy life.
Previously you mentioned attending NCCN facilities concerning your CLL. The NCCN CLL guidelines for specialists specify flow cytometry as essential and FISH (including checking for complex karyotype), TP53 and IGHV mutation status as informative for prognostic and/or therapy determination, so I would expect you would have these.
Your bio is empty. Would you share more about your markers etc? Careful with synthetic vitamin E it's very dangerous to overdo it. What dose of egcg do you use? Do they monitor your liver? It can be damaged by high doses of egcg.
I take CARLSON Gamma E-Gems-Gamma Tocopherol-465 mg.
I DO NOT have liver problems.
Please see NATUROPATHIC ONCOLOGY (4th Edition -2020) by Dr. Neil McKinney who on page 162 explains that he only prescribes "mixed tocopherols' Vitamin E.
Cool, thanks. Please keep the community informed periodically about how you are doing on this regimen. I will be very interested to see the long-term trend of your cll.
👍. Focusing on WBC numbers as an indicator of what one's CLL is doing is a bit misguided and suggests that the patient came to the right place to expand his knowledge about this specific blood disorder and along with having an open mind and a willingness to learn is in for a dose of real knowledge coming his way! Now if this isn't the longest sentence I ever constructed I don't know which one is 😁
I Googled it and checked with Mayo clinic post and let’s say I won’t be rushing to buy it. Only available in U.K. with a prescription for specific medical issues, none of which are CLL.
We need some studies on it. There are solid reasons behind the rationale to use it, but no clinical trials. The journal "Expert Review of Anticancer Therapy published this in 2022:
MSK talks mostly about its use for pain states. There's a mention of several other diseases it shows some promise for, including "cancer". A potential problem is the liver enzymes it affects, include the ones many of our CLL drugs also use. So what, if any, interactions would need to be ascertained.
An earlier 2021 publication notes the cancer types this drug seems most likely to help with. "lymph nodes" are among the types of cancers listed, but "blood cancers" or "leukemias" are not, so IDK if this would actually include CLL.
I think my naturopath helped me a lot as well. I received a poor prognosis in 2008, I had huge lymph nodes and fatigue, I followed the naturopath's advice and read a lot of things about diet, made dietary and other life style changes, and I am still doing well. I also have an oncologist whom I love, but I have not been given drugs for the CLL yet. I changed my diet and drink a lot of sencha green tea, which was one of the things recommended by the naturopath. He also recommended curcumin, found in turmeric. My wbc count was near 70,000 and climbing when I was diagnosed. I was found to be unmutated and ZAP70 positive as well. Thank you for sharing. I appreciate your approach and that you have shared this information. I hope some of our community will be able to see the goodness in what you are saying.
Curcumin has to be encapsulated in lipids to have adequate uptake into blood. Even so you may not be able to consume enough curcumin to reach a therapeutic dose, 50% on trial had gastric issues that led to discontinuation.
Of note, only 3 of the 21 CLL patients in a clinical trial of an enhanced bioavailable turmeric preparation, had a lower absolute lymphocyte count at the end of the trial than at the beginning, which could be equally explainable by chance.
Afternoon of 3/27 picked up 63 1.5 mg capsules of Low Dose Naltrexone (LDN) prescribed by my Naturopathic doctor from a compounding pharmacy.
Nite of 3/27 took one LDN capsule before going to bed and will do this for seven days.
2nd week take two LDN capsules before bed.
3rd week take three LDN, after seven days see Naturopathic doctor to discuss side effects and next dose.
So far, no side effects.
Hematologist is "OK" with LDN.
From page 264 of NATUROPATHIC ONCOLOGY - 4th Edition (2020) by Dr. Neil McKinney:
LDN initially suppresses, then up-regulates production of beta-endorphins and meta-5 enkephalins which in turn regulate immune response and cell growth. Endorphins increase Natural Killer cell number and activity, activate cytotoxic CD8+ T-cells and may induce apoptosis via increased number and density of tumor cell endorphin receptors. It may alter cold agglutinins. D-LDN is a TLR4 antagonist, binding to NFkb and cytokine receptors, blocking IL-6, IL-12, TNFa release, for a potent anti-inflammatory effect. LDN also inhibits opioid growth factor.
For EGCG, Reishi, Vitamin D, Vitamin E, Vitamin C, Zinc, Quercetin, Curcumin and many others, Dr. McKinney discussess their impact on CLL in a manner similar to his aforementioned discussion of LDN's impact on CLL.
LDN, EGCG, Reishi etc are PRIMARY AGENTS, not supplements.
LDN, EGCG, Reshi etc are not SUPPLEMENTING anything, they provide the PRIMARY solutions for my CLL.
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$106 per month for LDN versus $2500 oer month for ibrutinib.
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Sinusitis and bronchitis and cough that won't go away
Flow Cytometry To rule out CLL
Anyone have CLL get 'jumpstarted / activated' by undergoing unrelated surgery?
Needing advice and support
Any ideas on sleep issues
