Ivermectin : Keep seeing on social media about... - CLL Support

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Ivermectin

MichelleM61 profile image
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Keep seeing on social media about Ivermectin and cancer. Has anyone tried Ivermectin?

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MichelleM61 profile image
MichelleM61
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AussieNeil profile image
AussieNeilPartnerAdministrator

There have been some in vitro and limited human observational studies using ivermectin in a synergistic manner with other cancer drugs in breast, colorectal cancers and chronic myeloid leukemia, but not CLL as far as I can tell. Note that CLL is a lymphoid blood cancer, not a myeloid blood cancer. Myeloid blood cells arise from a different stem cell progenitor, so generally there are different cellular pathways involved from those relevant for CLL.

It's always good to check what you come across on social media!

No, ivermectin isn’t being withheld as cancer ‘cure’

apnews.com/article/fact-che...

THE FACTS: A popular Facebook video is falsely suggesting that ivermectin, an approved antiparasitic drug that was peddled as an unproven treatment for COVID-19, is a known cure for cancer but is being withheld by officials.

“If you go to the NIH website and search for ivermectin and cancer, you will see that they have known for years — years, probably decades — that they have the cure for cancer,” a woman in the video claims. “And they had the cure for numerous other diseases and ailments and they’ve been hiding it from us.”

But experts say there is no data showing the drug is a “cure” for cancer.

A search on the NIH website for “ivermectin” and “cancer,” as the video instructs, simply shows that there have been early studies exploring if ivermectin can play a role in slowing cancer cell growth or treating tumors.

After a report of ivermectin in vitro COVID-19 research from a reputable Australian research laboratory regarding its effectiveness on kidney epithelial cells extracted from an African green monkey, there was a huge amount of what eventually turned out to be misdirected effort, spent investigating whether ivermectin could be used to protect against COVID-19 or speed recovery from it. The largest study skewing meta-analyses study results was found to include faked data, as were quite a few subsequent studies. See

healthunlocked.com/cllsuppo...

Ivermectin is cheap, but if this cancer research pans out, it seems its most likely use will be as way of reducing the dose needed of already approved cancer treatments. That could make cancer treatments easier to cope with side effect wise, but I doubt there would be much of a change cost wise, as you still need the cancer drugs.

Neil

MichelleM61 profile image
MichelleM61 in reply toAussieNeil

Thank you Neil for all this information. I read so much and don’t know who to trust.

CLLpa profile image
CLLpa in reply toMichelleM61

Hi MichelleM61

I share the same opinion with who to trust .

Skyshark profile image
Skyshark in reply toAussieNeil

The problem with reduced doses is reduced sales and profits. The only way to recoup the profit would be to have a high "profiteering" margin.

We could all reduce the dose of Venetoclax to a quarter by drinking 200ml of grapefruit juice 3 times a day and Zanubrutinib by half on 2 doses of grapefruit juice.

All research on CLL would stop as no one would invest in seeking new drugs or running clinical trials.

CLLBGone profile image
CLLBGone in reply toSkyshark

Somehow I missed the scientific studies and related evidence stating it's safe and effective to cut Vent & Zanu dosages and add Grapefruit juice.

SeymourB profile image
SeymourB in reply toSkyshark

Skyshark -

It's a bogus argument to claim that pharma is resisting dose reductions, because many countries can't afford these drugs, and are often the ones studying alternatives to save money. Pharma has funded dosage reduction studies, notably with many MRD driven trials. The age of BTKi monotherapy is ending, and everybody in pharma knows it. There are also valid and recognized issues for effective dosage based on studies.

The technique you describe with grapefruit juice is similar to what happens with Paxlovid, where ritonavir slows the liver's ability to metabolize the nirmatrelvir. How much of what brand of grapefruit juice? Have you tried this? How are your liver and kidney stats? There's certainly danger of TLS early in treatment. At what point is it safe to start this dosage modification?

There are dose reduction studies (without addition of metabolism slowing) for a variety of CLL drugs that show varying, but generally good effectiveness:

tandfonline.com/doi/full/10... Real-world outcomes following ibrutinib dose reduction in patients with chronic lymphocytic leukemia/small lymphocytic lymphoma Leukemia & Lymphoma Volume 66, 2025 - Issue 1

tandfonline.com/doi/full/10... Real-World Ibrutinib dose Reductions, Holds and Discontinuations in Chronic Lymphocytic Leukemia Future Oncology Volume 17, 2021 - Issue 35

pmc.ncbi.nlm.nih.gov/articl... Clinically indicated ibrutinib dose interruptions and reductions do not compromise long-term outcomes in CLL Blood. 2019 Mar 27;133(22):2452–2455.

pmc.ncbi.nlm.nih.gov/articl... The impact of early discontinuation/dose modification of venetoclax on outcomes in patients with relapsed/refractory chronic lymphocytic leukemia: post-hoc analyses from the phase III MURANO study Haematologica. 2020 Dec 17;107(1):134–142.

pmc.ncbi.nlm.nih.gov/articl... Tumor lysis, adverse events, and dose adjustments in 297 venetoclax treated CLL in routine clinical practice Clin Cancer Res (2019) 25 (14): 4264–4270.

The abstract below shows using ritonavir to achieve a dosage reduction with Venetoclax. Note that the following was published before the pandemic:

link.springer.com/article/1... Impact of ritonavir dose and schedule on CYP3A inhibition and venetoclax clinical pharmacokinetics European Journal of Clinical Pharmacology Volume 74, pages 413–421, (2018) (Abstract Only)

But all that precision may be for nought, because our genes determine how fast we metabolize:

pmc.ncbi.nlm.nih.gov/articl... Interindividual variability in CYP3A‐mediated venetoclax metabolism in vitro and in vivo in patients with chronic lymphocytic leukemia Clin Transl Sci. 2024 Dec 14;17(12):e70106.

There has been a call for better dosage testing in clinical trials in general, because the current method tests fewer patients in Phase 1 where dosage is determined:

ascopubs.org/doi/10.1200/ED... Moving Beyond 3+3: The Future of Clinical Trial Design American Society of Clinical Oncology Educational Book Volume

=seymour=

CLLBGone profile image
CLLBGone in reply toSeymourB

.... and sadly, now that it looks like cancer research, ongoing experiments, & NIH (USA) funding finds itself on the government chopping block, we can expect a to see the prevalence of more quackery, disinformation, and junk science masquerading as fact.

SeymourB profile image
SeymourB

MichelleM61 -

I see no studies catalogued by clinicaltrials.gov for CLL and ivermectin as the main drug or as an add-on for CLL:

clinicaltrials.gov/search?c...

A search of PubMed for "chronic lymphocytic leukemia" and "ivermectin" produces only a case report about a patient with a worm infection:

pubmed.ncbi.nlm.nih.gov/?te...

Ivermectin is very inexpensive. Higher doses have known liver toxicity. In vivo (animal and human) studies may show some effect on blood tests, especially in combination with existing therapies, but at what dose? Does that effect make a real-world difference in length of remission, or is it just moving cells into organs? Trials are needed to show marrow and long term effects.

Will a patient experimenting on themselves do regular blood tests to check for liver and kidney toxicity?

=seymour=

Bluesinthenight profile image
Bluesinthenight

There have been studies to evaluate different drugs, and even grapefruit juice, an inhibitor of the P450 enzymes, including P450 3A, for the purpose of boosting drug levels and/or reducing drug blood level variability. Here is a review of such studies:

onlinelibrary.wiley.com/doi... : Boosting the Oral Bioavailability of Anti-Cancer Drugs Through Intentional Drug-Drug Interactions.

Ivermectin is not on the list drugs that have been formally studied in this regard.

The Pitfalls of this approach are reviewed along with potential benefits for certain drug drug interactions. The cases of benefit are limited. One important limitation is changing not only the bioavailability of a specific anti-cancer or leukemia drug, but changing the availability and drug levels in the body of other drugs a person is taking that depend on the same enzyme for their metabolisms. This is why the approach has rarely been taken.

There is one published study with grapefruit juice, but the approach was taken with one drug, Etoposide, and it had limited effect, not worth pursuing. On the other hand, having people take itraconazole, a potent P450 3A inhibitor (and anti fungal agent) along with ibrutinib, increased serum ibrutinib levels 10 times higher than with ibrutinib alone.

I personally experienced what happens when taking a p450 inhibitor (Voraconazole) with ibrutinib while being treated for aspergillus in my liver. I was taking the standard dose of ibrutinib. I developed severe toxicity that required lowering the Ibrutinib dose to 140 mg per day from the usual 420 mg per day.

The intentional drug-drug interaction (DDI) approach, has in general, not been used.

Reference link edited ( For references to work, make certain that there are spaces or new lines front and back of any reference )

- Admin

Skyshark profile image
Skyshark

The link with a ":" fails.

onlinelibrary.wiley.com/doi...

One report from China of Venetoclax cost reduction using grapefruit juice. It has to be noted that the patient was carefully monitored for blood concentration of Venetoclax.

frontiersin.org/journals/on...

As we recently discovered from JerrysGirl3 posts about unexpected changes to treatment, the reduction of Venetoclax to 100mg dose is a routine part of the AML protocol for Azacitidine and Venetoclax when an antifungal is used. The antifungal is only withdrawn and the full 400mg Venetoclax dose used when the patient is intolerant of the antifungal (as was the case for JerrysGirl3).

ashpublications.org/blood/a...

This is a one dosing strategy fits all, without blood concentration testing. If it was critical there would be ample scope for dose modification as Venetoclax is available in 20mg, 50mg and 100mg tablets. Doses could easily be adjusted to 80mg/90mg/100mg/110mg/120mg depending on patient uptake. The antifungal may be worse than the treatment.

Star fruit could be particularly dangerous as it is 2 orders of magnitude greater inhibitor of CYP3A than grape fruit juice. 600ml of white grapefruit juice is about 2 whole grapefruit, while 6ml of star fruit maybe a couple of slices. It's not included in the listed foods to avoid in any cBTKi drug patient info leaflets but is for Venetoclax and Pirtobrutinib.

researchgate.net/publicatio...

Fruits CYP3A
Bluesinthenight profile image
Bluesinthenight in reply toSkyshark

The link works fine on my computer.

The starfish fruit paper cited contains several caveats discussed by the authors about interpreting their in vitro data, including the absence of in vivo or human studies of starfish fruit consumption on p450 inhibition. Also, they tried isolating components of starfish juice as has been done for grapefruit juice, looking for a mechanism of p450 inhibition. Unlike similar studies for grapefruit juice, the investigators did not find any chemical components in the filtered starfish juice that inhibited p450 3A. They suggest that something may have been lost in filtering the juice, a necessary step for trying to isolate individual components in these studies. Also mentioned for interpreting in vitro studies of food substances including fruit on hepatic p450 activity is the possibility of them being altered during or after ingestion and absorption in a way that removes the inhibitory activity seen in vitro.

This is likely why avoiding starfish fruit consumption is not mentioned in many of the drug trials (and in package inserts) for not only BTK inhibitors, but probably numerous other medications. Definitely worthy of further study, though.

Ellieoak profile image
Ellieoak

it is NOT FOR CLL. DONT BE AN IDIOT.

Spike62 profile image
Spike62

To answer your question, yes, I am in the middle of "trying it" with the oversight of a functional health MD. I finished a 12mg BID x 14 day protocol about a month ago and am 2 weeks into a 18mg BID, 3 times a week x 5 weeks routine.. After a blood draw after the first 3 week cycle, my liver values were fine, and my Lymphocytes dropped from 17 to 12. I realize that with my generally lower WBC level (for a CLL'er) and more favorable markers (13q, mutated), that kind of drop could be anything and am not drawing any conclusions. I will repeat a CBC in another month to see if I can start to make out a trend. I will update my post at that time. I should add that this protocol is in addition to an ongoing regimen of EGCG (roughly 2+ grams) and some other supplements that I initiated at diagnosis several years ago..

in reply toSpike62

Hi there-I didn't see your comment before I posted mine. Glad to see someone else here who was willing to try ivm and had success with it.

Here is my experience with ivermectin, Fenben, and DMSO. In 2023, my sister told me about two guys she knew in high school who had cured prostate and pancreatic cancer with ivermectin and fenbendazole, so I began taking 25mg of ivm, and 500mg of fenben every day. After 2 months, ALC had dropped from 13.3 to 10.8, almost 19%. It had never been lower than 12 since 2017, and that was 3 years before I was diagnosed with CLL in 2020. (Two idiot doctors before that told me "you must have a cut" when they saw my elevated lymph count.) Anyway, I continued to take both for 8 more months, getting 2 other tests that were also 10.8. Then I stopped taking them to see what happened. Next test was 14.5. By then, I had heard about DMSO, so decided to try it, ingesting 15ml/day for 2 months. ALC back down to 10.9. Will test again in another month. I do have 71% smudge cells, which had increased 15% from the 62% I had before starting the ivm and Fenben. The % is not supposed to change nearly that much, but it did for me. And 3 different AI platforms say that smudge cells should be subtracted from the ALC, so that puts mine at 3!

I have probably the most indolent form of CLL there can be-mutated 6.7%, normal TP53, no abnormal markers at all, never any symptoms-so maybe that's why those things worked for me?

AussieNeil profile image
AussieNeilPartnerAdministrator in reply to

From 16 years of looking into alternative cures for CLL, I'd say your supposition in your last paragraph is most likely correct. Enjoy your luck and thanks for sharing that you have very enviable markers.

Neil

Rooster925 profile image
Rooster925

I was diagnosed in December 2021 at stage 3B. After 2 years of watch and wait with slowly declining health and still no treatment being offered, I started Florida Sharkmans protocol in June of 2024, which uses a combination of ivermectin, doxycycline, Fenbendazole with gamma Vitamin E and Berberine, following protocols AV, then B, then repeat after 2 weeks rest. Today, my lymph nodes, some of which were the size of limes, are now normal sized and all blood work indicates within normal range - nothing elevated. I have tons of energy and don’t feel sick at all. Previously I was so fatigued I needed to rest after walking 50 feet. I posted this information before and the mods alll ridiculed me, saying it was a placebo effect and I am still sick and harming myself by following the protocols. My take is this board is operated by big Pharma.

in reply toRooster925

I agree that it does seem like that. I gave up on this site before for that same reason. What you did sounds a lot like the Joe Tippens protocal. It's fantastic that you have apparently cured yourself!

AussieNeil profile image
AussieNeilPartnerAdministrator in reply to

Rooster925 and Pepperjackson, this board is NOT in any way funded or supported by pharmaceutical companies. The support team for this community provide their time voluntarily, with no incentives from drug companies.

Rooster, you have only written 3 replies to this forum. You say "I posted this information before and the mods alll ridiculed me, saying it was a placebo effect and I am still sick and harming myself by following the protocols", but I can't see where any moderator has done that. Perhaps you have confused communities? It's great that you are feeling much better and it is possible to undergo a spontaneous remission with CLL. It happens in around 2% of those with IGHV mutated CLL, so around a 1 in 50 chance. A placebo effect would not shrink swollen nodes.

I note that the Joe Tippens protocol was initially used for lung cancer. It also includes CBD oil and curcumin/turmeric. The only human study I know of using turmeric for CLL was an Australian study done 10 years ago. The researchers reported very poor success, even with a treatment protocol that used the statistical property of regression to the mean to show an effect that really wasn't there! See healthunlocked.com/cllsuppo...

Likewise there is reasonable evidence that CBD oil encourages the movement of CLL cells from the blood to the nodes and spleen. See: healthunlocked.com/cllsuppo... That can give the appearance of slowing CLL progression if you just monitor lymphocyte count changes, while actually accelerating CLL progression, because CLL is dormant in the blood and active elsewhere.

Of note, I took a high dose of turmeric for much of my watch and wait and didn't see any benefit.

Neil

SofiaDeo profile image
SofiaDeo in reply toRooster925

You also radically changed your diet, correct?

Spike62 profile image
Spike62 in reply toRooster925

That is fantastic. Well done.

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