Turkey tail mushroom while not taking TKIs

[denmanjemima]

I am on a one year break from alcalabrutinib and I was wondering if taking any immune supportive supplements like turkey tale encourage the growth of immature ineffective cancerous white blood cell growth or support the production of heathy white blood cells. Basically should we still trying to inhibit the growth of a stronger immune system? Confusing issue.

[AussieNeil Partner Administrator]

So if I understand you correctly, you are wondering if there is anything that can selectively boost our immune system to fight our CLL, while not boosting our CLL?

I don't know of any approved treatments, or for that matter, any treatments in clinical trials that can selectively kill CLL cells while totally sparing healthy lymphocytes. There was some (dashed) hope for ROR-1 inhibitors as well as lenalidomide (Revlimid), but the adverse event risk was deemed too high in CLL clinical trials. With venetoclax and BTKi drugs, CLL cells are more susceptible to these targeted therapies, because they can over-express the drug targets, but healthy B cells still suffer, which is why we don't tend to make much in the way of antibodies/immunoglobulins while in treatment.

With respect to mushrooms, this 2014 paper summarises the Immune Modulation From Five Major Mushrooms: Application to Integrative Oncology

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

Table 4 Cellular Immune Response to Cancer, references a phase 1 breast cancer clinical trial, which shows how B cells can increase in response to a medium dose of an extract from "Trametes Versicolor: The Colorful Turkey Tail Mushroom". pubmed.ncbi.nlm.nih.gov/227... You can see from the attached graph that the dose is very important - there seems to be an optimum level for the extract. Of note, of the 18 entries in Table 4, only two are for in-vivo human trials - tests on living people with cancer (but not CLL, or for any blood cancer for that matter). The rest are in-vitro human (effect of extracts on human cell lines observed under a microscope) or in-vitro or in-vivo mice trials, which usually don't work out in human trials. So we have no idea whether a specific dose might increase healthy B cells more than CLL cells, the reverse, or all equally.

The only mushroom recommended in the 2014 paper for lymphoma is Cordyceps, but that recommendation is based on a 2009 trial for a T cell lymphoma in a mouse model. Likewise the recommendation for reishi is for a myeloma leukaemia from a mouse model study. So there's nothing in that paper specific to B cell lymphoma (CLL is a non-Hodgkins B cell Lymphoma).

The other matter to be wary of when it comes to mushroom extracts that claim to boost our immunity, is that fungi cell walls incorporate Beta Glucans and some of us (in the order of a percent) have CLL B cell receptors that are stimulated to clone by fungal Beta Glucans. Weirdly, CLL B cell receptors aren't random; due to what's termed stereotypy, they are more often sensitive to a limited range of antigens.

Neil

B cell lymphocyte increase with turkey tail mushrooms in phase 1 breast cancer trial

[HeatherW71 in reply to AussieNeil]

Wow Neil! We are all so fortunate to have you as a resource on this board. Thank you for your knowledge and your time. ❤️

[papayabirdy in reply to AussieNeil]

So are we referring to only mushroom extracts or would it be prudent to eliminate mushrooms as a food source from our diets?

[AussieNeil Partner Administrator in reply to papayabirdy]

If we regularly enjoy mushrooms in our diet and are concerned at how rapidly our CLL is progressing, then it could be worth seeing if excluding mushrooms from our diet noticeably slowed our progression.

We've only had one member who mentioned suspecting that commencing a mushroom supplement correlated with an unexpected shortened time to treatment, but given the evidence for their immune boosting claims is generally from observing increases in lymphocyte counts, I would suggest it would be prudent to avoid mushroom supplements and extracts.

Neil

[papayabirdy in reply to AussieNeil]

Okay thanks Neil.

I'm not using mushroom extracts but have lately been eating a few crimini mushrooms a day for the taste.

No reason to chance it though so will stop eating them.

~jill

[MisfitK in reply to papayabirdy]

Mushrooms are such a nutritional powerhouse and your level of intake is so small (compared to mushroom supplements and extracts) that I doubt that a couple mushrooms a day intake would have any negative effect on your CLL, and instead it is probably having a beneficial effect on your gut health and vitamin D level.

This is to say - if you like them, keep having a few a day or every couple days - if you're not allergic/intolerant/sensitive to them, they can probably only help.

[papayabirdy in reply to MisfitK]

Thanks! I think they're high in zinc which could be a helpful trace mineral too. And I get locally grown, organic ones right now so I try to take advantage of that while they're available...

[denmanjemima in reply to AussieNeil]

Thank you so much Neil for your excellent answer. I am a nurse and send these questions to google and have not had success but your answer gives me a much clearer picture. It is, as I suspected, that with CLL (non-Hogkins B cell lymphoma) there is no ability to know whether any treatment to increase B cell production will be able to inspire specifically healthy non cancerous cells rather than the cancerous CLL ones. Hopefully I have that right. I know they do claim some success with other cancers like breast and the dose graph is quite fascinating. Thank you.

[AussieNeil Partner Administrator in reply to denmanjemima]

It's possible to determine whether the increase in B lymphocytes is due to an increase in clonal CLL cells or healthy B cells by using flow cytometry immunophenotyping to separately count the two groups. That still leaves the problem of what cellular mechanism would favour stimulation of healthy B cells, which eventually undergo apoptosis, while not favouring CLL cells, which are much slower at undergoing apoptosis and hence gradually increase in number. The non-linear dose response is another challenge - how do you work out the optimal dose for different body weights etc., with such a heterogeneous cancer such as CLL?

Neil

[denmanjemima in reply to AussieNeil]

Thanks Neil. I asked my oncologist and he agreed with your comments. I so appreciate detailed unbiased analysis.

[Vlaminck in reply to AussieNeil]

Wow, had to go into 5th gear brain power to make it through that interesting article, Neil. Although much was clearly beyond me, I did note that turkey tail seemed to have what I'd assume are harmful affects for us, increasing leukocytes, increasing CD 19, etc. So for our cancer specifically, turkey tail wouldn't appear to be the ticket. I wish they had evaluated shitake mushrooms. I'd be curious.