I've just joined this forum, and am already amazed at the depth of knowledge that Neil has and your depth of compassion, Johne1. I'm currently reading about different mushrooms that apparently have anti-cancerous properties. Reshi and lion's mane look highly promising. However, for CLL sufferers, it appears that we should NOT take turkey tail or beta glutans, which, although having anti-cancer properties, are likely counter-productive, as they increase production of B-lymphocyte cells, which is opposite what we want to do at this stage of development.
Mushrooms and CLL: I've just joined this forum... - CLL Support
Mushrooms and CLL
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Pogee
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lankisterguyVolunteer
Hi Pogee,
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Welcome to the club none of us wanted to join. From your two postings on your first day with us, you seem to be well read and more experienced than most, soon after diagnosis.
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There is a very detailed set of responses to one of the "Pinned Posts" on this page.
healthunlocked.com/cllsuppo...
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I encourage you to read all the responses and follow the links to credible sources listed.
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All of us would like to take back control of our body and find effective "natural" treatments while our doctors want us to wait patiently for our cancer to get worse. But unfortunately most non prescription attempts only work on a small percentage of people (who we hear about often) and may be dangerous or fatal to others (who we never hear from).
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Len
Hey, Len—Many thanks for your reply. You may well be right with regard to non-Rx treatments, but it's possible that for some, if not many, who experience substantial side effects from the drugs that the non-Rx treatments might be a better alternative. At the very least, I think it's important to take control of my situation, instead of having my oncologist tell me to keep taking the drug and and then tell me to see a shrink because of my multiple adverse reactions, such as what I consider to be clinical depression resulting from the drug itself.
Here are a few important matters relevant to your research:
1) Non-prescription treatments are thus because they aren't particularly potent if taken as recommended. With potency comes an increased risk of side effects (adverse events), hence the need for medical oversight.
2) Side effects are off-target effects that can be efficacious in some circumstances. That's why some prescribed medications are used 'off-label' for the effective treatment of other conditions. I don't think there is an effective treatment for any condition that doesn't cause unpleasant or unwanted side effects in some of those using it. The promise of side effect free treatment promoted by some 'healers' is a con. If no one is experiencing side effects on a given 'treatment', then it is not actually doing anything! Extremely effective treatments with low side effect profiles can still make you ill, just from the impact on your body of all the cancer cells dying. Read up on Tumour Lysis Syndrome.
Finally, a few recent large studies have shown that people that avoid proven cancer treatments don't live as long as those that do. By all means use your CLL diagnosis as an incentive to improve your health and fitness. This will probably improve your quality of life and help you get through treatment better than if you don't do so. It may even extend the time until you need treatment - but remember that about 30% of us never need treatment anyway! Most importantly, if the time comes when you do need treatment, don't put off starting an approved treatment. Deferring treatment when needed increases your risk of not achieving what you want - a normal life expectancy.
Neil
You're a wise person, Good Sir! However, a couple of comments. First, I'm already on Imbruvica, and beginning to have what I consider to be serious, and increasing, side effects. Second, I don't want to increase the longevity of my life; it's the quality of life that's important to me. I'm finding the process of dying, however long it proves to be, intensely personal and, for the most part, private and very difficult to manage—although I'm truly grateful for people like you, who devote so much time, effort, research, and love of humanity into all you do. In sum, you're entirely right about potential side effects going hand-in-hand with potential benefits. However, except for fatigue, I was asymptomatic before being put on Imbruvica. Now, I have serious toxicity issues, I believe, and I'm now reading that there are potentially serious withdrawal symptoms from stopping this med. *** Do you have any non-medical advice with regard to what may be the most well-tolerated drug out there?
Hi Pogee,
Had you shared that you were taking Ibrutinib, I would have directed you to this post: healthunlocked.com/cllsuppo... and asked you if you were taking any supplements, in particular herbal supplements or drugs that could be contributing to your side effects. Many interfere with Ibrutinib, increasing the concentration and extending the time present in the blood, potentially worsening side effects. Others reduce the efficacy of Ibrutinib. You can find other important pinned posts on Ibrutinib that may assist you to improve your quality of life here: healthunlocked.com/cllsuppo...
Currently, there is no way to find out who is likely to have severe side effects on any CLL treatment. Some of us have little to no side effects on Ibrutinib, others manage on a reduced dose and some just can't tolerate it at all. A second generation version of Ibrutinib called Acalabrutinib or Calquence, which was approved by the FDA for CLL treatment in November 2019, has a lower side effect profile than Ibrutinib. If that can't be tolerated, then Venetoclax may suit you better.
Neil
A blessing on your head, Good Sir! Yes, I take numerous vitamins and supplements. A couple of days ago, on my own, I stopped taking a number of them. One, I have just found out, is quercitin, which is listed as a potent inhibitor of the CYP3A4 enzyme. Another is gingko blob; however, that's listed as a weak inhibitor. I also stopped taking standardized hawthorn, standardized bilberry, glutathione, and CoQ10. , none of which are listed as inhibitors. But who knows??? For what it's worth, I'm still having sleepless nights, but a number of other serious side effects have mostly disappeared, including tingling and numbness of my arms and legs, a generalized internal nervousness, and severe anxiety.
Given you've been taking a few supplements including "quercitin, unknowingly, which may have contributed to some severe side effects associated with Ibrutinib.", I'll be very interested to hear if your side effects are considerably improved if you go back to a stronger dose of Ibrutinib. Thanks for sharing your experiences.
Neil
I started on a dose of 280mg, instead of the recommended 420mg, precisely because I was concerned about side effects. I've just cut that back to 140mg, and at this point I don't see any reason to increase the dose. Although it may well be true that my adverse reactions were due to the combination of drug and above noted supplements, and that they have for the most part abated, I'm leery of upping my dosage, considering how concerning my reactions were. Also, I have no problem with the lower dose, if I can remain relatively asymptomatic, even my WBC level and other indicators go down slower.
Be wary. You don't know if your CLL cells in your blood are going back into your nodes. Keep working with your doctor to make sure your CLL is being kept under control.
Thank you for this. I thought since I have enlarged nodes because of the CLL that there is ongoing transference of some sort from the malignant WBC cells in my bone marrow and my lymph nodes? Am I wrong?
No, that is exactly my point. There's a dynamic balance between places where CLL cells are found. Ibrutinib shifts the balance from the nodes to the blood and some things, like cannabis, shift it from the blood to the nodes. That's why it's important to assess changes in your total tumour burden when you try to reduce it - to ensure you aren't just redistributing it to where it propagates.
Neil
Bless you, Good Sir! I'll be mindful of this! However, on second thought, don't we want the CLL cells to remain in the bone marrow, confined captured, and treated as opposed to spreading to the lymph nodes, spleen, liver, etc., where treatment may be more difficult because they're spread out?
Unless you are undergoing radiotherapy (which can be used to shrink troubling swollen nodes, including the spleen), the spread of CLL isn't an issue, because it is treated through the blood supply. In fact, some CLL treatment drugs struggle to kill off CLL cells in the bone marrow, where they ensure they are very protected by establishing a supportive microenvironment.
I seem to be 180 degrees wrong about a couple of things. * I've also been advised that I'm wrong about inducers and inhibitors. I've been under the impression that an inducer magnifies the effect of a drug thru the CYP3A4 enzyme; however, Im just been advised that it's the inhibitor that does that by not allowing the liver to properly process the drug. Any thoughts on this? * As for the matter at hand to which you've responded, I thought one couldn't possibly be in remission if CLL cells are resident in the organs, even after treatment; however, it seems you're advising otherwise. I'm seriously confused!
You are forgetting the time dimension! You are delving into Pharmacodynamics (the study of the biochemical and physiologic effects of drugs) and Pharmacokinetics (determining the fate of substances administered to a living organism). Inducers and inhibitors change the peak serum level of a drug and the half life (the rate at which it is taken up and eliminated by the body, and hence the period of exposure). When pharmacy companies formulate a drug, they first work out where it is best absorbed in the body, changing how it is made and encapsulated to achieve that in order to maximise the targeting of cancer cells while minimising the side effect profile. (Ideally, you want to minimise the peak serum level to reduce adverse effects and extend the period of sufficient concentration to achieve maximum occupancy in CLL cells to block the BTK enzyme action, which CLL cells rely on to stay alive and multiply). You've been messing with the serum peaks and levels to your detriment through the supplements you've been taking.
With respect to what's meant by remission, that's defined in several reference documents used by specialists as outlined in this post: healthunlocked.com/cllsuppo...
CLL is not a solid tumour, you can't cut it out. CLL cells can be found everywhere in our bodies except our corneas (no blood supply). CLL is a very tenacious cancer with a reputation of being incurable. That's because it is so very hard to eliminate. Even just a few remaining cells can eventually expand and again result in the need for further treatment. All we can hope for with current treatments is to eliminate as many CLL cells as possible and reach Undetectable Minimal Residual Disease (uMRD). As detection systems improve, we can look at a larger and larger sample of lymphocytes and hope not to find any CLL cells, so you get uMRD4 - no CLL cells in 10,000 cells, uMRD6, no CLL cells in 1,000,000 cells and so on,but there could still be one CLL cell in 10,000,000 cells that could survive and again impact on our health. That cell has likely survived, because it has picked up the means to become resistant to treatment through a DNA copy error, so when CLL comes back it will be resistant to treatment by the same drug and you will not get as good a response to treatment by another drug. We know that well from studies on how Relapsed/Refractory patients go on second, third, fourth, etc., lines of treatment.
The initial use of Ibrutinib was different that earlier drugs used to treat CLL, where rather than trying to eliminate CLL, we just keep taking the drug to stop the CLL cells from dividing, so called maintenance therapy. Only 10% of those in an early Ibruitinib trial reached Minimal Residual Disease after 4 years on Ibrutinib. Most of the rest of the trial group had their CLL kept under control. They saw a recovery of their blood counts and their nodes and spleen shrink, but if they stopped taking Ibrutinib, they risked a return of their CLL. You've been messing with the degree of control provided by Ibrutinib and risking the development of tougher sub-clones that will be harder to treat.
Neil
With regard to Acalabrutinib, my oncologist and I yesterday went over its potential side effects, and it would appear, at first blush, that they could be far worse than those associated with Ibrutinib, there apparently being a far higher incidence of Stage 3 reactions with serious consequences. Since I didn't actually review any clinical studies myself, I'm taking his word, and also his word that I would be better off moving to Venetoclax, if I don't remain on Ibrutinib. Hopefully, I'll be able to stay where I am; however, I won't hesitate to immerse myself in research, as necessary—with your active and wise guidance! Blessings on your head, Good Sir!
Where could the grade 3 or greater side effects for Acalabrutinib be "far worse than those associated with Ibrutinib"? Check out sections 6.1 of these two FDA documents, where the total incidence of all grades and grade 3 or 4 side effects are summarised. Be sure to look at the tables for CLL, not MCL:
Acalabrutinib (last updated November 2019) : accessdata.fda.gov/drugsatf...
Ibrutinib (last updated April 2020) : accessdata.fda.gov/drugsatf...
Infections grade 3+ Ibrutinib 26% (Study 1102) 18% (RESONATE), vs Acalabrutinib 14% (ELEVATE trial) and 15% on ASCEND trial). Importantly, the incidence of grade 3+ pneumonia was 10 or 12% with Ibrutinib and 4.5% with Acalabrutinib. The major difference in favour of Ibrutinib that I could see was grade 3+ anaemia, which was 10% with Acalabrutinib vs 0% with Ibrutinib.
Perhaps your oncologist was looking at the side effects he thought you were most likely to have?
Neil
Thank you for providing this comparison. Interestingly, pneumonia is one of my biggest fears, as last year I was hospitalized with double pneumonia, and I've had it several times previously. I'll check out your links. In the meantime, it seems I'm tolerating ibrutinib well again, so I'll likely stay with it at a 1/2 dose level, at least temporarily. I'll also review any recent fda data for Venetoclax, which my oncologist recommends over acalabrutinib. Thank you again!
Pogee,
In 1997 I had to have brain surgery. The procedure interrupted the normal process of the absorption by a presynaptic nerve ending of a neurotransmitter that it has secreted - "reuptake". This interruption is deemed a form of "clinical depression", however when treated by credible neuroscience practitioners aka shrinks at the Mayo clinic, my ability to measure and disseminate thoughts that were unpleasant, disapointing or confusing greatly improved. Or at least, I think so.
Clinical depression is sometimes presented to us as patients in a way that we perceive it to be a diagnosis of shame because in times past it was often used in cases where persons who's abnormal and scientifically unexplainable behavior was deemed depression by a psychological theory rather than proven explainable and measured observations. These people were then sedated or institutionalized as a way to manage them and thus the image of depression was born.
The brain is ground zero "command control" for our entire existence. The function of all of our organs, the beginning and end of every cell, everything in between and beyond is meaningless without the brain. All of the receiving, transmitting, interpretive, and response that we participate in is processed and managed by the brain. The credible study of clinical depression and understanding the relationship for healing cannot be over expressed.
For me to ponder the thought of experiencing CLL with the addition of the condition that I mentioned above is past frightening.
You are right not to accept the influence of a "Shrink", possibly someone who may suggest a drug to depress clinical depression, Yet if you have the resources of a credible neuroscience clinic that can verify a treatable condition, they may even verify that your Onc is a "Quack".
Did your oncologist actually use the word shrink?
Weird?
JM
He used the terms psychologist and psychiatrist. The problem is that it was relayed to me through his nurse, without either or both of them ever considering that my depression might go away if the underlying issues were significantly addressed. Therefore, under the circumstances, they were both playing the game Telephone and failing miserably at it. However, after pursuing the matter, earlier today I had a long conversation with my oncologist, who was more understanding and willing to let me cut my dosage in half, to 140mg, and modify my schedule of when I take it and vitamins, as well as to substantially increase my water intake—and I'm feeling quite well, all things considered.
The anti infammatory agents that help solid tumors are not good for CLL, as they increase lymphocytes a LOT as others have detailed. People think oh, you have cancer, you need all these supplements, etc but they don't realize the difference between blood cancer and a solid tumor.
Pogee in reply to
Please be good enough to advise which anti-inflammatory agents you're referring to. From what I've read, many, such as Reischi, may be quite helpful, whereas turkey's tail, specifically, could cause increased proliferation of malignant white blood cells.
in reply to Pogee
Beta Glucans is present in mushrooms including Reishi. It may help drive CLL cell lymphocyte proliferation.
healthunlocked.com/cllsuppo...
Pogee in reply to
Thank you!
My dad was diagnosed with cll in 1965 and he lived for 3 years. Treatment was basic and he had blood transfusions to change his blood.
I was diagnosed at the same age as he was 43. I didnt need treatment for 9 years. That was chemo fcr. The R was rituximab and it was thought to be life changing.
I had remission for 5 years and 3 years watch and wait. Ibrutinib was a wonder drug and in a year my numbers are perfect. Nearly 20 years.
The things that caused change looking back were stress and worry. At the moment covid is causing a lot of misery and its hard to do things to take our minds off our worries.
We need to be thankful that there are treatments because my poor Dad really suffered. Dying at 45.
I dont know how much ibrutinib has added to the pain I am in because I had pain before but we have to be realistic. There have been others on this site who have tried alternative treatments and they havent worked. After 20 years I dont know how many years I have left but we have no choice. I know I sound harsh. Its hard to accept and come to terms with and scientists are helping us not intending to poison us but the cll. It affects us mentally as well as physically.
Anne uk
Yes Aussie Neil is a wealth of knowledge and I suspect his occupation was or is something to do with medical things. I could be wrong but I for one am indebted to him for his information about who is the best specialist here in aus with CLL. You could say Neil has probably prolonged my life with the knowledge I once gained from one of his posts
AussieNeil rocks! He has
“incredible patience and knowledge” which those of us on this site for even a short while recognize.
Thank you, Neil! Stay well!
~ Yuck
I take beta glucan every day. Used to take 200mg per day but have taken 500mg daily for last 5 years. This seems to increase my well being and does not affect my counts in a detrimental way
Beta glucans are potent inducers of the liver enzyme CYP3A4 which processes many "things" in your body. This means that it magnifies the effect of things, such as drugs, such as Imbruvica.
in reply to Pogee
Actually, the opposite.
CYP3A4 Inducers induce higher clearance through the liver, thus reducing amounts of the substance in question, and diminishing the effects; in this case ibrutinib.
Inhibitors inhibit clearance, thus the body retains more of the substance,
You have multiple posts concerning playing around with both CYP3A4 inhibitors and inducers while taking Ibrutinib. You are playing with fire.
Pogee in reply to
I need to more carefully consider my thinking on this. Thank you. If you're correct, I would also have given misinformation through other posts. Do you know what AussieNeil thinks about this?
in reply to Pogee
Aussie Neil knows what Aussie Neil thinks.
However, regarding CYP3A4, no doubt about it, I am correct.
While I do not have the detailed knowledge that Neil does, I have been around the block on this. I research to death everything having to do with my health. I tried everything I could to inhibit progression of CLL (and potentially prostate cancer) through use of supplements and specific diet prior to it overcoming me and having to start treatment. This included diet, antioxidants, mushrooms, curcumin, quercetin, NAC, various vitamins, sulphorophane, EGCG, pomegranate etc.
Once you investigate deeply enough, and need actual treatment, you enter a different universe where every food, supplement, vitamin etc becomes a potential problem that can either stimulate CLL cell growth, interfere with anti cancer drug action or synergize side effects, some of them potentially life threatening.
For me it became somewhat maddening and disempowering when researching deeply that all of these things (except I haven' t found detailed references to sulphorophane) can interfere with treatment. I still struggle with it. I want to DO SOMETHING on my own behalf, but really, this pursuit of supplements and alternatives while on CLL treatment is playing with fire.
I'll also add here, though it really is a response to one of your other discussions:
Individual doctors have different amounts of tolerance and acceptance for patient's choices outside of their specific recommendations for care.
My CLL specialist (Not a general oncologist, a niche specialist) staunchly forbids any supplement which has not been researched specifically for its effect on CLL. But we had one such discussion last appointment, and she leveled with me, by saying that said that specialists can be easily swayed by patient input, and at times it is not worth their while to fight with a patient over it. Physicians can not force a patient into any treatment or deny them the choice of taking whatever they please. People like us with strong will can easily sway or overrun their decisions and recommendation... to our own peril.
Please be careful.
EDIT: I'll add this: mskcc.org/cancer-care/diagn...
It is not exhaustive, but begins to discuss this topic. The video is worthwhile, as is the database (alphabetical index at bottom of page)
I agree with Hidden that you have been playing with fire with all that you have been doing. You have a cancer that can kill you if you don't have treatment. By your actions, you have acknowledged that you have probably increased the severity of your side effects and you were contemplating further reducing your dose, putting you at risk of losing control over your cancer and possibly becoming resistant to the best understood new treatment that has given early users of the drug 10 years and counting of getting their lives back. If your CLL progresses on Ibrutinib, you'll have to switch to another drug with less collective experience behind it. Taking the standard dose without the complications of taking supplements that can confound the outcome is the safest path. The manufacturers have invested a huge amount of research and testing into making the capsules the way they have to ensure optimum uptake while minimising the side effect profile. They employed people with the relevant training and experience that neither of us have to come up with a very well tested and documented way to take this drug optimally. They have tested how and where Ibrutinib gets absorbed when the capsule is taken whole and how it is processed and excreted by our bodies with very clever technology not available to us. Thousands of patients have taken a risk with their lives, through participating in phase 1, 2 , 3 and subsequent trials to establish a safety profile that you have deliberately ignored to your detriment.
You only have one life. Use it wisely, which includes accepting the combined knowledge of researchers, specialists and patients who have given years of their time to determine the best way to use Ibrutinib to extend the lives of those with CLL while maximising their quality of life.
Neil
No, Sir, I believe you misunderstand. I most sincerely appreciate your deep concern. However, please note that I haven't done anything. I've only engaged in some research that appears to show potent inhibitors and inducers. I haven't taken anything other than my ibrutinib and my usual vitamin regimen, which I had been having for years. When, after 3+ months of280mg of ibrutinib, I began to have adverse reactions, I engaged in some research. That research led me to conclude that I needed to cut my ibrutinib in half, stop all my vitamins, substantially increase my water intake, and, as best as possible, try to get a good night's sleep. Period. End. In fact, over the past three days I've been feeling VERY well. I plan to continue this regimen until feeling less than well, likely due to loss of select vitamins, at which time I'll try one at a time to assess its impact. More than likely I'll first increase my ibrutinib level back to 280mg.
country76 in reply to
I can attest to that, I almost killed myself eating real black licorice. Metabolized by the same enzyme CYP3A4.
That likely had to do with licorice being a potent inducer—one or two people have advised that I have this mixed up—which would have the effect of increasing the effect of the ibrutinib. Clearly, I'm no expert, so please seek advise from others far more knowledgeable. But good luck to you.
This site says Reishi mushrooms are very effective against leukemia: pubmed.ncbi.nlm.nih.gov/164...
Any thoughts?
The six most sensitive cell lines identified from testing with a Ganoderma lucidum extract in vitro (under a microscope) were:-
BLIN-1 (Diffuse Large Cell Lymphoma; Non-Hodgkin's B Cell)
HL-60 (acute promyelocytic leukemia)
K562 (myelogenous leukemia of the erythroleukemia type, a rare acute myeloid leukaemia)
Nalm-6 (acute lymphoblastic leukemia)
RPMI 8226 (B lymphocytes derived from a plasmacytoma patient)
U-937 (histiocytic monoblast-like lymphoma)
The conclusion states this extract "may be a novel adjunctive therapy for the treatment of hematologic malignancies"
So nothing specific to CLL and no testing on people.
Neil
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