Lions Mane Mushroom

[startdoing]

Might anyone have any experience using the above for CLL? I am also on Eliquis. Lions Mane is said to also have blood thinning properties. If the Lions Mane is beneficial might some combination of the two work?

[InFlorida]

I, for one, am not a believer in supplements. Obviously others are and I’m guessing my comment will be taken to task.

My thoughts are that few can scientifically prove their claims. If they could, their use would become mainstream. Some can do more harm than good so until the science proves they are helpful, I stay clear of self medicating.

[cajunjeff in reply to InFlorida]

I agree with your response. It would have taken me seven longer paragraphs to say the same thing as you did in two. Lol. My wit has no soul. 😎

[InFlorida in reply to cajunjeff]

Thanks, brevity has typically never been my long suit. Especially, if you get me on the phone…… 😜😜.

BTW, I saw your snow post. I thought I left those behind in CO then we get it in Florida. Funny thing was no one I knew owned a snow shovel (me included).

[AussieNeil Partner Administrator]

Welcome to our community!

You note an interest in CLL in your bio, but I couldn't find any research with respect to CLL and Hericium erinaceus (Lion's Mane). With respect to blood thinning properties, WebMD notes webmd.com/vitamins/ai/ingre... notes;

Bleeding conditions: Lion's mane mushroom might slow blood clotting. This might increase the chances of bruising and bleeding in people with bleeding conditions.

So with respect to CLL, I'd be very wary about the potential increased risk of bleeding from taking Lion's Mane, particularly if you are already taking equilis. That's because our platelet counts tend to drop as CLL progresses (a sufficiently low platelet count triggers the need for treatment), so you'd potentially be increasing the risk of what could be a fatal internal bleed. Also, CLL treatments initially lower platelet counts before recovery. Anyone taking a BTKi (acalabrutinib, ibrutinib, picobrutinib, zanubrutinib, etc., needs to be very careful about anything that works to lower their risk of clotting, because an off target effect of BTKis on kinase in platelets also reduces clotting effectiveness. That's why people taking these drugs often report increased bruising.

Our last post on this topic was a couple of years ago, healthunlocked.com/cllsuppo... With respect to cancer, there's this more recent summary; What the Evidence Says About Lion’s Mane Mushroom for Patients With Cancer Oncology Nursing Society (ONS) November 2024)

ons.org/publications-resear...

What the Research Tells Us

Mechanistic studies show that lion’s mane’s bioactive compounds, hericenones and erinacines, promote the synthesis and secretion of nerve growth factor, as well as neuroprotective, antineuroinflammatory, and cognition-improving effects. In the context of oncology, lion’s mane showed anticancer effects in preclinical studies, but no human studies support the findings. (My emphasis).

Table 1 in this paper lists the research into Hericium erinaceus

Medicinal mushrooms as an attractive new source of natural compounds for future cancer therapy (2018)

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

As you can see, just as the ONS article states, the research is mostly mouse and rat studies and a few human cell line studies - there are no live (in vivo) human studies mentioned. The human cell lines mentioned are U937 human monocytic leukemia cells and human promyelocytic leukemia (HL-60, NB-4). These aren't blood cancers derived from the lymphoid stem cell line, like CLL, but from the myeloid stem cell line, from which we get our platelets, red blood cells and white blood cells other than our lymphocytes.

As the ONS article concludes;

"Small studies suggest that lion’s mane may help reduce stress and depression as well as improve cognition. Larger, well-designed trials are warranted to expand the evidence base.

Lion’s mane is generally well tolerated. However, oncology nurses should be aware of its potential side effects and encourage patients to discuss the source of supplementation with their oncology and integrative medicine teams, particularly pharmacists, to make informed decisions."

Neil

[startdoing in reply to AussieNeil]

As I am fairly new to CLL, Q13 deleted, are there any beneficial supplements to help to help keep the markers in check? I am, taking no medication at this time and was told many of those with Q13 deleted never need any.

[BigfootT in reply to startdoing]

The Mayo clinic CLL/SLL lifestyle and diet recommendations/suggestions are located here:

mcpress.mayoclinic.org/chro...

Bigfoot

[AussieNeil Partner Administrator in reply to startdoing]

Being FISH 13q del is actually the best FISH test result you can have - even better than FISH testing reporting 'normal karyotype', that is, none of the common genetic damage markers found. Other good markers are being IGHV mutated, CD38 negative (CD38 status is usually reported on the diagnosing Flow Cytometry test), not being TP53/17p del and having a low B2M result.

The best evidence for a beneficial supplement to slow CLL/SLL progression is probably for vitamin D, per this post healthunlocked.com/cllsuppo...

The benefits of ensuring our vitamin D serum level is within the normal range, were recognised in a precursor post to this one on 30 tips for living well with CLL, around 10 years ago.

healthunlocked.com/cllsuppo......

There's also ever growing evidence for the benefits of exercising

healthunlocked.com/cllsuppo...

You may find other helpful posts in our Pinned Posts section here: healthunlocked.com/cllsuppo...



Added; When you search online for information on supplements that may slow CLL progression, you are most likely to find research studies for blood cancers that form in the myeloid progenitor line, not the lymphoid progenitor line. (See diagram). That's because unlike most cancers, CLL cells don't live forever, but just die at a slower rate than they propagate. So it's been very hard to develop immortal CLL cell lines that can be grown for laboratory studies, hence researchers nearly always do their research on laboratory cell lines for myeloid blood cancers, because those research cell lines are readily available. The cellular signalling is generally different in myeloid compared to lymphoid cancers, which is why it's uncommon to see the same approved treatment drugs used. To have a good likelihood of supplements being active against CLL, studies need to be on human CLL cells or CLL mouse model research. Even then, because CLL cells in our bodies surround themselves with a nurturing tumor micro-environment, what's observed in microscope studies (in vitro) of CLL cells exposed to the substance under investigation, rarely translates to human trial (in vivo) success. Firstly, it can be difficult to get a high enough blood serum concentration of the active ingredient without causing adverse effects on other cells. You have to get sufficient absorption through the gut wall without the digestive system destroying it, then not have the liver quickly destroy it (such as happens with curcumin in turmeric). Finally, the CLL cells have a greater chance of survival than in in vitro tests, because of their nurturing tumor micro-environment.



Observational Studies vs Randomised Clinical Trials

healthunlocked.com/cllsuppo...

WHY ‘TRYING IT FOR YOURSELF’ IS A BAD IDEA - Dr Harriet Hall

healthunlocked.com/cllsuppo...

*CLL/SLL is the most common adult Non-Hodgkin's Lymphoma. The Small Lymphocytic Lymphoma (SLL) expression of CLL/SLL, where there is little to no leukaemia presentation comprises only a few percent of those diagnosed with CLL/SLL.

CLL arises in the lymphoid progenitor stem cell line (right) not myeloid (left)

[startdoing in reply to AussieNeil]

Thanks. Much needed info well stated.

Was going to give low dose melatonin a try to help with sleep. Herbatonin .3mg. is low does and plant based. The package had a warning for those with lymphoproliferative disorder. Speak to a healthcare provider before taking. Another individual asked on another site as to whether he could take 1mg. of melatonin at night. The reply was that dose should be ok and without any side effect. He went on to say the warnings for CLL and melatonin were there because of the high doses 3-10mg. that many people were taking. It was also stated that ongoing studies with CLL and melatonin point to a possible benefit at a low dose. Your thoughts? Ok to take or not?

[AussieNeil Partner Administrator in reply to startdoing]

According to Melatonin: does it have utility in the treatment of haematological neoplasms (2017)

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

Serum melatonin levels were remarkably low in CLL subjects compared to healthy controls, and levels were still lower in shift‐workers compared to non‐shift‐workers in CLL group.

However, that association doesn't mean that there's a causative association or that increasing melatonin might slow CLL.

There's also an older paper, where melatonin was used as a possible adjuvant (effectiveness enhancer) with a proven treatment drug - cyclophosphamide.

Chronic lymphocytic leukemia: long-lasting remission with combination of cyclophosphamide, somatostatin, bromocriptine, retinoids, melatonin, and ACTH

pubmed.ncbi.nlm.nih.gov/195...

Unfortunately, as there was no control arm in what was a very small trial, there's no way of knowing whether or not the melatonin helped improve the outcome.

In situations like this, if you want to take melatonin, it's best to inform your doctor and CLL specialist, so that they can monitor your health for anything untoward. Bear in mind that the CLL tumour load is commonly distributed in the blood, spleen, nodes, bone marrow and sometimes other organs, such as the liver. How what we do affects our CLL needs to be assessed by monitoring changes accordingly. If the CLL infiltration of our bone marrow is reduced, then our blood counts should show an improvement, with platelet and red blood cell counts and haemoglobin plus possibly neutrophil counts rising.

Neil

[miskin86]

I am not heard of Lions Mane but I heard of Cordyceps. I did not try this yet because I have some liver enzyme issues but I am willing to in the future. As others already mentioned self medicating could be dangerous. thankyouglennandjeff.com/

[LeoPa]

What plant chemicals does it contain? What other plants do you consume? How will the mix of all the chemicals you ingest affect your health and CLL? This is what I'd be asking myself.

[Bobby9toes]

I’m taking Acalabrutinib and had heard the same as you that it is beneficial in treating cancer. I asked my pharmacist and he advised against taking it. Always check with your doctor or pharmacist before taking any supplements. So many of them can interfere with medications you are on.

[CLLCalifornia-USA]

I always discuss all things with my specialist. Without his consent, I’m not interested. He has kept me informed and healthy. Good luck. Sally