Hi - has anyone ever been recommended to take mushroom supplements, specifically Reishi Mushrooms? I’ve read a lot about their medical benefits and there’s quite a bit of reference to leukaemia, and some past reference to CLL.
My husband has recently started taking ibrutinib and so far so good, so I certainly wouldn’t want him to start taking anything that may interfere with treatment, but just asking out of curiosity really. I wish we had maybe tried it when he was on active monitoring.
Thanks all!!
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shellsb
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I reviewed the pages at this link and found no mention of the lymphoma family of conditions, excepting a reference to a 49-year-old man with non-Hodgkin’s lymphoma who developed difficult-to-treat diarrhea following prolonged consumption of powdered Reishi extract, and two instances of death based on Reishi toxicity for non-lymphoma cancer patients.
Memorial Sloan neither advocates for nor against use of this fungus ~ which has a long history within traditional Chinese medicine. Bottom line? There's inconclusive evidence of benefit to patients with cancer, except as a palliative in some end-stage disease.
Look at healthunlocked.com/cllsuppo... and other 'Related Posts' (right margin of your full-screen when you open this second link; but likely not seen in most 'phone-views') for additional information on the magic-of-mushrooms.
Shellsb, I have not tried nor heard of these mushrooms, but your question sent me searching for a viable source of information---there are many "sources" out there but not of the reliable sort. Most of what is written seems to be for commercial purposes of "integrative" medicine. The following Sloan-Kettering
article seems pretty thorough and the quote I have provided struck me as relevant to CLL and other B-cell cancers.
"An in vitro study reported that reishi mushroom extract has toxic effects in leukocytes (14). There are also a few documented cases of hepatotoxicity (24) (25). More research is therefore needed to determine its safety and effectiveness as an adjunctive cancer treatment."
While the linked article states there have been studies and there is purportedly some immune response to Reishi mushrooms and in small studies in regard to other cancers, the quote i have given would highly suggest the mushrooms would not be a good thing for CLL or other B-cell cancers in any situation, let alone the improbable usefulness with a treatment.
And, of course, it is paramount with anything added to a treatment regimen that the question be first raised with the CLL Dr.
I early on started taking AHCC, a super immune enhancer made from various mushrooms, scienfically tested, etc, but then read more about how it works, and I believe I read that, through its beta-glucans, it increases the number of b lymphocytes (and maybe t also, can't recall), which is not what I (or we with BCLL) want, so I quit, quit beta-glucans, and approach all "immune enhancers" with that concern in mind. To the extent I can, I try to find info on exactly how an immune enhancer works. If it works in an altogether different way, then it might be good, because of course we want our natural immune system to kick this stuff in the butt. But I'm just joining in to the possible reason for caution about "immune enhancers" and "beta glucans" -- know how it works first.
My own experience of taking mushroom supplements last year concluded that it is very possible that they accelerate ALC.
Having for some two years had my ALC rising at 50% every six months reaching 17.0, after switching to taking daily turmeric, in the next six months I had a stable ALC of 17.0. This led me to the conclusion that I should take my approach to supplements more seriously, so I went to a specialist cancer nutritionalist who recommended a whole range of additional supplements, including particularly a mushroom extract (in my case Blazei Murill) because “it boosts the immune system”. In the 2 months after I started taking these daily my ALC suddenly rose to just less than 22. I stopped immediately, principally because I read a post on health unlocked that advised that the “immunity boost” in the mushrooms might actually trigger a rise in ALC. Of course it could have been one of the other supplements (all of which I immediately stopped, and reverted to turmeric and vitamin D) but the mushrooms seemed like the most obvious offender. But that is just my experience.
Thanks for sharing your experience. I was wondering whether to mention this risk, because some of us do have sensitivity to fungal Beta Glucans as mentioned in Concluding Remarks section of the this paper:
As the Alzheimer's has just been diagnosed (last month) what I'm doing is learning about the pros & cons of different things - particularly slowing or stopping memory loss. Even though my sister gave me a jar of Lion's Mane I'll not take them-
The doctor who just did a prostate operation on me has recommend I talk to another doctor who had moved to Costa Rica from the US, as they will not let him do stem cell research there. He is studying how stem cells may be useful in healing the lesions in the brain that it is believed cause Alzheimer's. They definitely found lesions in the tests on me, so I'll be getting in touch with him next week. Having two diseases with no cure is two too many!!
I wouldn’t waste my time on the mushrooms. I’ve had CLL since 2002 and in the initial years I tried many diets and things that were supposed to “ heal” my CLL. No such luck ! Just eat right, exercise and enjoy life!
Being limited to my own experience and study, I have determined that improving CLL symptoms with supplements has not yet been validated clinically in the major study arena.
I believe that individual successes are possible, and I thought that I benefited from turmeric and green tea when used in accordance to a MAYO clinic study, however, the perspective benefit was early on, Rai stage 0 - 1. It seemed that as I progressed I felt better without the supplements.
As for mushrooms, they are high in purines including the reishi's. Purines are uric acid influencers, and CLL is not a friend to high levels of uric acid.
If your doctor does not object, it seems that there is very little risk and a possibly a benefit. If your measure does not qualify there is no loss of investment, and you can stop.
Mushrooms with leukemia Have questions sometimes regarding boosting the immune system which creates more B- Cells. Do you need mushrooms or find the question comes in more with supplements.
It appears the best evidence for fighting CLL come from green tea. It appears the best evidence for fighting CLL comes from green tea and TUrmeric extract.
I tried to hide those versions of these supplements before I started treatment and had elevated liver levels with the combined treatment.
Instead I drink a lot of high-quality green tea, Japanese green tea hand drink juice Tumeric. I like a green tea called Rishi super macho green. You can get it online .
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