Does anyone have experience or advice about using these mushrooms? They are pretty expensive….
Thanks!
Agaricus Blazeii Murilli: Does anyone have... - CLL Support
Agaricus Blazeii Murilli
Written by
romarin
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8 Replies
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AussieNeilPartnerAdministrator
Hi Romarin,
I CAN tell you that these mushrooms are included in the FDA list of 187 Fake Cancer "Cures" Consumers Should Avoid:
fda.gov/drugs/guidancecompl...
I notice that they are available from a couple of firms in that listing.
The difficulty with CLL, is that the disease generally progresses slowly, but can vary in activity (more or less night sweats, nodes swelling and shrinking, variable fatigue and so on), which makes it very hard to work out on a sample of one (you), whether something you are doing or taking is having any effect. With the inevitable placebo effect plus the understandably willing belief that what you are spending a lot of money on MUST be doing you some good, that's an excellent recipe to make you poorer and those selling these products wealthy at your expense, without even doing you any good (and possibly some harm).
It's tough being on watch and wait and feeling helpless at not being able to do anything yourself to at least slow the disease progression...
Neil
Hi Romarin,
Thank you for this question as so many of us, myself included, are unsatisfied with W&W and search for ways to improve our condition leading us to alternative pathways. The idea of using Beta Glucan found in mushrooms and yeast to boost the immune response to cancers in general and CLL in specific is not new or without merit in concept. Read - link.springer.com/article/1...
The problem is with CLL, as Neil has pointed out, being chronic in nature makes it an ideal medium for scams to proliferate. Any good scammer will use a foundation of logical truth knowing that it will get magnified by the desire of the scammee. There was an actual Clinical Trial to explore the use of Beta Glucan on CLL patients at a Cancer Clinic in Louisville Kentucky in the US that I looked into, I believe in 2008. The trial never attained recruitment levels to begin.
One can purchase Beta Glucan as a supplement but it is best to work with your Doctor on any Alternative path you want to try. Beta Glucan never slowed my progression after six months of use. It is also not cheap as most of these things tend to be. Most useful in slimming down wallets though
WWW
We don't recommend that people with pain in their legs do high intensity jogging - at least not till we know more about the pain. The same applies with cancer.
One of the things I worry about with CLL is whether nutritional supplements intended to boost the immune system will boost the function of the bad clones more than the good ones. All the different types of immune cells work together. The only sure way to find out is to test. Since CLL is one name for dozens of different mutations, there's much more testing needed for CLL and nutrition than for some simpler types of cancer. So get to know more about what mutations you have.
For example. I have trisomy 12. This means that my bad clones produce more of whatever functioning genes that are on chromosome 12 than a normal B-cell would. That chromosome has over a thousand genes. There's currently 500 or so genes on that chromosome that are connected to one sort of cancer or another:
atlasgeneticsoncology.org/I...
Most of those genes are probably not expressed in B-Cells. But some obviously are (CLLU1 and CLLU1OS), plus others with Leuko in their name. But this is all so over my head, and over the heads of some of the best microbiologists in the world, I am skeptical about any untested medicine - and even some of the tested ones!
Each gene has a complicated metabolic pathway - the map that shows how it connects to body and cellular processes, including nutrients. For most genes, that pathway is not fully known. Feeding some of those genes more of what they use might actually be bad.
So until I see a study focused on nutrition and my particular mutation, I'm going to try to eat normally as possible, while avoiding known inflammatory foods. Plus, while watching and waiting, I know there's other things I could die of unrelated to the CLL.
Once this dawned on me, my doomed Watching and Waiting changed to focusing on my bucket list and the things I value in my relationships with other people. Despite the trisomy and it's intermediate prognosis statistically, I realized that those relationships could actually help me be on the long end of the bell curve. People who have the support of friends and relatives almost always do better. People who do art, music, or a hobby do better as well. I don't party like it's 1999, but I do smell the roses, watch the sunset, and rock some babies to sleep.
In fact, I would recommend a visit to the maternity ward nursery for any cancer patient. There's usually a window. Just looking at babies, and wondering what their lives will be makes me feel so hopeful.
=seymour=
Very well put Seymour. Early on, I asked my haematologist what I could eat/take to boost my immunity (an investigation into my neutropenia led to my SLL diagnosis) and was told "Nothing". From what I've since learnt, that was very good advice for the reasons Seymour has so well explained above.
Neil
Many thanks for wise replies. The notion that boosting immunity could boost the bad guys is very foxing. What to do?!
Hi Romarin,
I agree it's very puzzling... But I think Neil's haematologist was being over pessimistic when he said "nothing" can boost immunity.
As Seymour B says, people who have good friends and family tend to do better. And those who do art, music, or have a hobby. (For me, photography and photo-enhancing is a great hobby). We can also smell roses, watch sunsets, and rock some babies to sleep. Be careful the babies don't have snuffly noses though - kids can be pools of infection 
I guess anything that lowers our stress levels, helps our immunity - Including physical activity as long as we don't overdo it...
Paula
P.S. On the packet of the porrage I have for breakfast, it tells me that porrage oats are a good source of Beta Glucans. Not sure if that's a good thing or bad thing now 
I believe that it is now proven that a healthy diet and exercise will boost your immunity..
This view is supported by Dr Susan LeClair, one of the world’s leading experts in blood disorders.
Susan in her Andrew Schorr video, stated:-
‘ Note that new Neutrophils when they have just left the bone marrow will marginate.
This means that they will line up along the blood vessels. Which is why some gentle exercise is good as this will loosen the neutrophils and get them circulating in the blood stream and thus going to work to find and kill bacteria.
A good reason for exercise..’
Then from Wikipedia..
‘ The average lifespan of (non-activated human) neutrophils in the circulation is about 5.4 days. Upon activation, they marginate (position themselves adjacent to the blood vessel endothelium), and undergo selectin-dependent capture followed by integrin-dependent adhesion in most cases, after which they migrate into tissues, where they survive for 1–2 days.
Neutrophils are much more numerous than the longer-lived monocyte/macrophage phagocytes. A pathogen (disease-causing microorganism or virus) is likely to first encounter a neutrophil.’
Surely then WE CAN improve our immune function by diet and exercise…
Dick
