I’ve heard good things about soursop. Anyone else heard any first hand stories or tried it personally?
“Another test-tube study looked at the effects of soursop extract on leukemia cells, which was found to stop the growth and formation of cancer cells “
There are appropriate 'may' and 'could' mentions in the article. Importantly (and as is usually the case with positive media mentions of leukaemia treatment breakthroughs) the referenced leukaemia is Human Promyelocytic Leukemia (HL-60 cells), which is a myeloid blood cancer. ncbi.nlm.nih.gov/pmc/articl... CLL is a B- cell lymphoid blood cancer, more specifically, it's the most commonly diagnosed adult Non-Hodgkin's Lymphoma.
The study was in vitro, so even if activity against CLL is later established, there's still the CLL Tumour Micro-environment to overcome. 
healthunlocked.com/cllsuppo...
I'd be interesting in eating soursop, just for the experience, though I'd expect any health benefits would be an unlikely bonus.
Neil
I was drinking soursop leaf (leaf from a soursop tree) tea for a month until I discovered that I'm pregnant. My mom got fresh leafs for me and I store them in my refrigerator. My values dropped, but not significantly. I'll continue drinking the tea after pregnancy, mostly because for the peace of mind of my mom.
I have heard of this used in a tea to be useful in lowering my bilirubin number, which has to do with my liver. I wasn’t aware of it having cancer fighting properties as well. It wouldn’t hurt to give it a try. Look up Turkey Tail. It is also supposed to work against cancer cells. I have been taking it for the last month. I was told last week after a PET scan that I am now in remission. I don’t know if that had anything to do with it or not but I’m going to continue with it. Also, before trying anything new, make sure it won’t interact with any medications you are taking. Good luck and let me know if it works. Jan
I would be very cautious about taking Turkey Tail mushrooms when you have CLL, because there is research showing that they can boost B cell production - the last thing we need with CLL. There are over 100 different blood cancers of which CLL is one of the chronic (slow growing) kinds. With my emphasis, "Turkey tail extract was well-tolerated and was immunomodulatory at higher doses (6 g or 9 g) by increasing CD8+ T cells and CD19+ B cells." : ncbi.nlm.nih.gov/pmc/articl...
See also healthunlocked.com/cllsuppo....
Neil
I don’t have CLL, I have SLL. The cancer isn’t in my blood, only in my lymph nodes, but good advice for those with CLL.
CLL and SLL were classified as the same leukaemia/lymphoma by the World Health Organization back in 1994. They are treated with the same drugs, so what stimulates 'CLL' will stimulate 'SLL' . CLL/SLL is active in the nodes and dormant in the blood, but it spreads through the lymphatic and blood circulation systems. SLL starts in a node (and can be cured by radiotherapy if diagnosed early enough). CLL arises in the bone marrow.
I had enough CLL cells in my blood for a flow cytometry diagnosis, but didn't reach a high enough level of CLL/SLL cells in my blood until about 2 years after my diagnosis. My specialist accordingly diagnosed me with CLL/SLL.
The SLL/CLL threshold of 5.0, was arbitrarily set at a dinner meal by the CLL/SLL research scientists Professor Terry Hamlin from the UK (who identified the importance of IGHV mutation status), Dr Kanti Rai of New York (who developed the Rai staging system) and Professor Thomas J Kipps of UCSD, San Diego, California.
Neil
AussieNeil -
I would enjoy hearing about that dinner meal with Drs. Hamlin. Rai, and Kipps.
=seymour=
I couldn't find where Professor Hamlin commented about that dinner discussion, which indeed would have been fascinating occasion on which to be present and listen to their discussion. I'm fairly sure he made it in his blog, probably in a reply. However, here are his blogs sharing the processes by which researchers arrived at international agreements on how to differentiate between MBL vs CLL and MBL vs SLL respectively.
mutated-unmuated.blogspot.c... (July 2009)
Guidelines for the diagnosis of CLL were published in 1988 by a National Cancer Institute Working Group (NCI-WG) [8] and in 1989 by the International Workshop on CLL (IWCLL) [9]. The former required a lymphocytosis of >5 x 10^9/L but the latter a lymphocytosis of >10 x 10^9/L. This confusion was removed by the 1996 guidelines published by the NCI-WG [10] which settled on a lymphocytosis of >5 x 10^9/L but has been further complicated by the 2008 guidelines published by the IWCLL [11] which raise the threshold to a B-cell lymphocytosis (rather than a total lymphocytosis) of >5 x 10^9/L.
In 2002 Rawstron et al [12], using four-color flow cytometry of the dregs of blood samples taken for other reasons, discovered that 3.5% of the population over the age of 40 harbors a population of cells immunophenotypically similar to those of CLL and this has been confirmed by others, who emphasize that marginal zone lymphoma also exists in this pre-clinical form [13]. The prevalence of such cells rises with age, to 7.7% of people in their seventies. Recently the group from Salamanca, Spain, using a more highly sensitive multicolor flow technique have suggested that as many as 12% of the population over the age of 40 have a small population of CLL-like cells in heir blood [14].
An International Working Group [15] has designated this condition as Monoclonal B-cell Lymphocytosis (MBL) and laid down diagnostic criteria (Table 1). Of course, this new entity did not suddenly appear in 2002, and the International Group also reported on previous sightings of the condition under such names as ‘smoldering CLL’ and ‘benign monoclonal B-lymphocytosis’.
mutated-unmuated.blogspot.c... (May 2011)
The 2008 WHO Classification definition of CLL requires ≥5 x 10e9/L peripheral blood monoclonal B-cells with a CLL-phenotype. The 2008 IWCLL paper allows the diagnosis also to be made with lower MBC counts if the patient has cytopenias or symptoms attributable to the CLL. Patients who in the past would have been diagnosed with CLL but who no longer fulfil these new criteria are now classified as MBL with a CLL phenotype. Using highly sensitive flow cytometry techniques, MBL has been identified in up to 12% of adults with normal blood counts. While the vast majority of MBL patients maintain stable counts over time, a small proportion progress to CLL at a rate of approximately 1-2% per year. This figure is very dependent on the height of the B-cell count and the progression rate is very much smaller for those whose B-cell counts can only be detected by the most sensitive flow cytometry tests. Various studies have placed the B-cell thresholds that best predict the risk of progression, treatment-free survival and overall survival at from 1.2x10e9/L to 11x10e9/L.
It's great that his family have kept his blog on line since his untimely death over 12 years ago now.
Neil
I have no opinion, or knowledge in this matter, but would be curious to hear your view on whether you think it would be equally risky to supplement on something like this (Turkey Tail) if you are in uMRD…. Or, could it possibly be helpful to strengthen your B cells to perhaps provide a deeper remission if you only consume while uMRD. Or… do you believe it simultaneously helps strengthen both the good and bad. I would love to find something that would be helpful to nursing back the battered B cells post treatment. Always appreciate your insight and balance in these areas.
Kvb-Texas
Kvb-Texas, We had an interesting discussion recently, where someone calculated that even if we achieve uMRD6 (less than one CLL/SLL cell in one million white blood cells, given we have around 5 litres of blood, with around 3 billion white blood cells per litre, that still equates to upwards of 15,000 CLL/SLL cells in the blood, plus probably more still in the nodes and bone marrow. I suspect that we probably rely on unexhausted natural killer cells and other immune messenger signal driven responses in the tumour micro-environment to keep our CLL/SLL under control to some extent before it eventually again becomes dominant.
The 'evidence' by which suppliers claim supplements boost our immune system, typically rely on in vitro studies showing increased lymphocyte stimulation and proliferation. However, immunologists point out that increased activity of a particular part of our immune system doesn't actually correlate with an improvement in our immunity. Our immune system is extremely complex and has to work in a coordinated manner to fight off infections. (Antibody production requires CD4 helper T cells working with naive B cells to direct their maturity into immunoglobulin producing plasma cells, where the immunoglobulin is keyed to identifiable protein markers (epitopes) on the virus, bacterium, etc.)
To use an automobile analogy, it's like adding a premium (higher octane) fuel into your fuel tank. Unless your engine is designed to use that higher octane rating (a higher compression ratio), then you aren't going to gain any advantage from buying the higher octane fuel. More specifically, if the car is simply standing with the engine not running, then the octane boost isn't going to help you get any faster from A to B.
Neil
Hello Neil - I don't think Turkey Tail Mushroom should be feared as an adjunct therapy. My husband started Turkey Tail mushroom and a modified Ketogenic diet (or clean Keto diet) as adjuncts to KEYTRUDA (Pembrolizumab) for Stage IV mCRC (metastatic Colorectal Cancer that was in the descending colon, liver, lymph, and peritoneum). He just had a PET scan showing he is in complete remission without a surgery in only 12 weeks AND he got the added bonus of the best blood test results since being diagnosed with CLL. His lymphocyte counts are the lowest they have been since 2021 and his RBC, hemoglobin, and platelets and are in the normal range for the first time since end of 2021.
Of course, when multiple therapies are carried out simultaneously, we cannot give credit to just one therapy. However, one thing that double blind studies cannot give us is proof of the synergistic effects of natural medicine. Therefore, it is just as important to keep an open mind and not fear the amazing adjunct herbal and nutritional therapies that are out there. They have these reputations because people have used them, they worked, and they told two friends, and so on. That is the beauty of this site, to share knowledge as well as experience, which gives us more than the science backed knowledge. On this site we have both science and experience which makes us smarter.
That's great news about your husband. Thank you for sharing.
I don't understand why you say though, "However, one thing that double blind studies cannot give us is proof of the synergistic effects of natural medicine." When you add in randomisation, any synergistic effect should be clearly apparent. Mayo clinic have actually patented EGCG from green tea for synergistic usage with proven blood cancer drugs and I've seen other clinical trial results for the synergistic use of herbal products.
Neil
Neil, is there a link to some of the synergistic results? What do you think of supplementing with EGCG? Currently I drink Matcha but I don’t think it has the potency required to see benefits.
Sorry, I haven't kept a record of reports of synergistic clinical trials. The concept is attractive, but there are challenges with respect to absorption, quality, strength, purity, etc., when supplementing with natural substances. The EGCG Mayo clinical trials actually used a pharmaceutical grade product Polyphenon-E made by Mitsui Norin, using a patented extraction process. The company achieved FDA approval for a topical application of a cream containing Polyphenon-E for genital warts, etc., but the company decided not to continue with Polyphenon-E for CLL treatment.
You are right about probably not getting enough EGCG through drinking Matcha tea; the Mayo clinical trial settled on 4 grams of EGCG daily. That equates to something like 20 to 30 cups of tea, depending on strength, brewing time and temperature and so on.
Neil
Thanks & at least matcha tastes good.
Excellent analogy. That makes a lot of sense. I also hadn’t thought a lot about the sensitivity of the uMRD test… that is a very good point. I wish there was more that could be done to boost those “natural killer cells”.
it's a subtle taste. Delis I had panacotta sour sap I don't think that's how it's spelled . I'm gonna try to make a crème brûlée with it. I don't take for medicinal reason but when in season it's great
Hi Rando ,, our pastor recommended I take soursop tea .. he had actually known of a couple of people in Micronesia who had hard cancer tumors who changed their diet and drank the tea and were cured of their cancer ----- when i was first diagnosed with CLL in April of 2021 .. I was already at stage 3/4 .----.my ONC. wanted me to start treatment with Calquence that very day .. my co-pay was $5000. for the first 2 months so I tried the soursop tea .. my wife dutifully made it for me everyday and I drank a pint of it twice a day for months with not much change in my CLL--.. these dear folks on HU helped me get a grant to pay for my co-pay -- by then I was so anemic and my other symptoms were not improving I decided to stop drinking the soursop and taking other supplements and take the pills .. the CAL. pills only worked for 8 months ... now I am on the O+V treatment and doing well .. hope you are too .. blessings , James
I like finding out what Andrew Weil, MD thinks about these types of things. To me he balances holistic and western medicine well. He says no to sour sop. So I went with that. He mentioned similar to Neil regarding the testing being in vitro...
What are some good things he said are good ideas?
I'm going out on a limb with a guess that's the same as most other doctors.
A well balanced diet of fresh food, free from processed foods with additives and exercise.
Google Dr Andrew Weil - treating cancer with integrative medicine … he has some good info and also wrote a book w Dr. Donald Abrams you may find good.
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