Beta glucan: Here is a study you may find... - CLL Support

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Beta glucan

tom9676 profile image
10 Replies

Here is a study you may find interesting

ncbi.nlm.nih.gov/pmc/articl...

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tom9676 profile image
tom9676
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AussieNeil profile image
AussieNeilAdministrator

Mayo Clinic have a reputation for exploring the use of natural substances, sometimes in synergy as here and when they patented the use of EGCG from green tea with drugs recognised for their effectiveness in treating CLL. However it looks like the authors missed this 2013 paper

A Mutated B Cell Chronic Lymphocytic Leukemia Subset That Recognizes and Responds to Fungi

pubmed.ncbi.nlm.nih.gov/232...

Their paper suggests 0.3% of us are susceptible to having our CLL growth being increased by exposure to Beta Glucans, e.g. from eating mushrooms or using mushroom supplements. I though it was a higher proportion.

Neil

Sushibruno profile image
Sushibruno in reply to AussieNeil

Does this mean no more eating mushrooms?

AussieNeil profile image
AussieNeilAdministrator in reply to Sushibruno

A small proportion of us would find that eating mushrooms boosts their CLL. Thankfully I'm not in that category as I love mushrooms!

Neil

Sushibruno profile image
Sushibruno in reply to AussieNeil

How would i know that? I love them too😊.

AussieNeil profile image
AussieNeilAdministrator in reply to Sushibruno

See if your node sizes and ALC increase when you eat lots!

Sushibruno profile image
Sushibruno in reply to AussieNeil

Got it, thank you Neil😊.

bhayes84 profile image
bhayes84 in reply to AussieNeil

So why shouldn't I try this?

The study found 2 out 3 patients had 'complete responses' = no detectable disease (?)

while chances of increasing CLL is 3 in 1000.

And it's only about $25 / month for the 250mg / day for my weight.

It's cheap to have a CBC to get ALC every 3 or 4 weeks and monitor progress.

Bill

AussieNeil profile image
AussieNeilAdministrator in reply to bhayes84

Because the study reports the results of treatment with alemtuzumab, rituximab, and PGG beta glucan, not PGG beta glucan on its own. Most of the response would be due to alemtuzumab and rituximab. Don't forget rituximab is sometimes used as a monotherapy treatment :) . PGG beta glucan is being used for its synergistic effects, specifically by how it increases the cytotoxic capacity of the innate immune system. It certainly wouldn't cause a complete response in 2 out of 3 people using it.

Neil

bhayes84 profile image
bhayes84 in reply to AussieNeil

True. OTOH I’m on Acalabrutinib, though that’s not really cytotoxic so there might not be any synergism there.

Identiy profile image
Identiy

Thanks

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