Good article on navigating complementary cance... - CLL Support

CLL Support

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Good article on navigating complementary cancer treatments

Wordmonger profile image
25 Replies

I'm sharing this link to what I consider a balanced and helpful recent article about how persons with cancer can navigate all the information about complementary and alternative treatments out there. It was written by a naturopath trained in cancer care who practices at the Ottawa Integrative Cancer Centre in Ottawa, Canada. Hope some of you will find it useful.

thechi.ca/navigating-the-wo...

Admin update 10-Nov-2020. Link to article Navigating the world of complementary and alternative healthcare information By: Dr. Ellen McDonell, ND. updated.

Added 11th July 2022: Complementary and Alternative Therapies in Oncology, ncbi.nlm.nih.gov/pmc/articl... commences; "Given the popularity of CAM, better knowledge about these alternative practices may help oncologists discuss this issue with their patients. This article objectively reviews the most common unconventional therapies used by cancer patients". It concludes; "The common use of CAM methods in cancer care remains a challenging clinical and emotional issue."

Added 28th February 2024

Take Your Supplements With a Big Grain of Salt (Free registration required)

medpagetoday.com/opinion/pa...

"Written right there on the bottle for most of these things is that FDA disclaimer saying, "This product is not intended to diagnose, treat, cure, or prevent any disease."

Yet, that is what is being promised."

Interesting comments, particularly by RitaND, about the usefulness and limitations of Complementary and Alternative Medicine (CAM). RitaND: 'My experience with patients who have had herbal or supplements prescribed to them by doctors or dieticians not well educated in their use is that they often take inappropriate doses, the wrong supplements, and way too many supplements. And there are profiteers all over the world who just want to get on the bandwagon, as your patients are very interested in something "natural" when the drugs do not work or meet their expectations or are too expensive. And then there are the patients who are so afraid of having a serious disease that they won't get tested when they should. They often came to my office, and resisted when I suggested they see a specialist that their insurance covered for the appropriate diagnostic tests. Many chose to pay for tests themselves if they could rather than see someone who would not support their views. This is a complex patient dynamic.'

Common Health Scams

consumer.ftc.gov/articles/c...

People spend billions of dollars a year on products and treatments in the hope of improving their health and fitness. But a lot of that money goes to companies that make fake claims about those products and treatments, cheating people out of their money, their time — even their health. If you’re thinking about buying a health product or service, here are some things to keep in mind to get the best outcomes for you and your family.

- Admin

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PaulaS profile image
PaulaSVolunteer

Thanks for this link, Bleimsner. It's one of the most helpful and balanced articles on this subject that I've ever read (which is just what you said it was!). :-)

Paula

AussieNeil profile image
AussieNeilAdministrator

It's not a good article, it's excellent!

The referenced article should be required reading for anyone wanting to know how to evaluate the usefulness of claims regarding any treatments.

Be aware that for years, Facebook has been bombarding its members with ads for unproven treatments healthunlocked.com/cllsuppo...

Members share their experiences of delaying recommended treatment for their CLL

healthunlocked.com/cllsuppo...

This article Alternative Medicine Gurus Are Misleading Cancer Patients, from Integrative Oncology Essentials also provides useful background information on how to determine the best possible integrative care: integrativeoncology-essenti...

When Cancer meets the Internet, useful tips for assessing cancer cures

- healthunlocked.com/cllsuppo... , plus

- healthunlocked.com/cllsuppo...

Why claims of cancer cures need to be skeptically examined - and why something which is claimed to be effective against another blood cancer may not be effective against CLL

"What we like to call cancer is really a collection of vastly different diseases, with different causes, treatments, and outcomes, that we lump together for convenience because they all have a a few similarities. Saying that you can “cure cancer” is a nonsense statement — it’s like claiming to be able to cure all bacterial infections, or all chronic illness, with a single treatment.

:

Realistically, anyone who claims to be able to cure cancer is either ignorant of what cancer actually is, vastly overstating their claim, or is simply lying."

- medium.com/@gidmk/there-is-...

This post examines the evidence of how Chris (Wark) really beat cancer and the relevance of his approach to CLL

- healthunlocked.com/cllsuppo...

See also

- healthunlocked.com/cllsuppo...

The evidence based approach to managing CLL is to monitor the patient (watch and wait) until treatment is necessary. This is because early intervention was found to provide no increase in life expectancy compared to just monitoring the patient. There are risks associated with treatment - side effects, some permanent, the increased risk of secondary cancers from chemo based treatments and for all treatments (including alternative treatments, if effective), the very real risk of accelerating clonal evolution - thereby generating even tougher CLL clones to treat in the future (we relapse/become resistant/refractory to the treatment). With FCR there is now growing evidence that for the ~30% of us with the right genetics, we can achieve remissions beyond 15 years - which is effectively a cure. With the new non-chemo treatments such as Ibrutinib and Venetoclax, it is too soon to know if starting treatment earlier is now appropriate: healthunlocked.com/cllsuppo... For those with the 'wrong' CLL genetic errors, we'll just bring on drug resistance earlier and have to hope that there's another drug we can switch to...

Alternative medicine, fringe medicine, pseudomedicine or simply questionable medicine is promotion or use of practices which are unproven, disproven, impossible to prove, or excessively harmful in relation to their effect — in the attempt to achieve the healing effects of medicine. It differs from experimental medicine in that the latter employs responsible investigation, and is discarded when shown ineffective. The scientific consensus is that alternative therapies either do not, or cannot, work. In some cases laws of nature are violated by their basic claims; in others the treatment is so much worse that its use is unethical. Alternative practices, products, and therapies range from those which are simply ineffective to those having known harmful and toxic effects.

- en.wikipedia.org/wiki/Alter...

Unfortunately, many of the positive effects claimed by alternative medicine can often be explained simply as regression to the mean. This is the statistical observation that the next test result after a bad result is likely to be closer to the long term average. The 'improvement' can be incorrectly be attributed to the treatment. This is why comparative arms, often using a placebo, are so important in clinical trials.

- healthunlocked.com/cllsuppo...

Complicating matters, is that there's a 1 to 2% incidence of spontaneous remission in CLL.

- healthunlocked.com/cllsuppo...

But natural is safe, right?

theconversation.com/little-... (And this is only a list of Australian plants!)

Natural treatments can also interact with and increase the toxicity of prescribed drugs or decrease their effectiveness.

The Memorial Sloan Kettering Cancer Center provides an excellent on line database listing herbs used in Integrative Medicine, which notes common side effects and drug interactions along with the mechanism of action where known. Interactions can occur for a range of reasons: mskcc.org/cancer-care/diagn...

The University of Hawaii maintains "A current listing of potentially life-threatening, cancer-related dietary supplements (DSs; includes herbs) based on PubMed case reports was summarized in online tables that can now be updated continually to forewarn United States consumers, clinicians, and DS companies. Documented PubMed case reports were used to create a “Toxic Table” related to cancer (1966 to April 2016, and cross-referencing). Keywords included “herb” or “dietary supplement” combined with “cancer” as well as the specific herb “name” combined with “cancer” and sometimes “toxicity.” Excluded were herb combinations (some exceptions), Chinese herb mixtures, teas of mixed herb contents, fungi (mycotoxins from molds and mushrooms), poisonous plants, self-harm, excessive doses (except vitamins/minerals), legal or illegal drugs, drug–herb interactions, and confounders of drugs or diseases related to cancer. "

researchgate.net/publicatio...

A 2017 study showed that mortality was 2.5 times higher among patients with common cancers, who chose only alternative medicine instead of standard cancer treatments such as surgery, radiation, chemotherapy, immunotherapy, and hormone-based therapies! (Study referenced in this post): healthunlocked.com/cllsuppo...

Here's an Australian Epidemiologist's summary of a similar 2018 study of nearly 2 million individuals  who had cancer over a 20-year period. In this study they identified everyone who they could confirm had used alternative medicine, and compared them to a matched sample of people who had conventional cancer treatment: medium.com/@gidmk/complemen...

The study found that "people who had used complementary medicines were much worse off. Not only did they have a lower chance of surviving at 5-years, they were twice as likely to die. And it wasn’t just a large relative risk increase — less than 70% of people who used complementary medicines were alive at 7 years into the study, compared with more than 80% of the conventional medicine users." The study is discussed in this post: healthunlocked.com/cllsuppo...

If you wish to try alternative treatments, don't forgo proven therapies:

cancertherapyadvisor.com/ho...

Below is a growing summary of non-standard/alternative treatments for CLL/SLL, but first read Don’t believe the hype – 10 persistent cancer myths debunked

- scienceblog.cancerresearchu...

and Problems with Testimonials

- healthunlocked.com/cllsuppo...

Western herbal medicine – panacea or placebo? (Comments are very good too!)

theconversation.com/western...

Dietary Supplements Pose Real Dangers to Patients

This is a "Must Read" document, summarising the risks associated with taking dietary supplements.

- journals.sagepub.com/doi/10...

Supplements: the Wild, Wild West of Medicine

- medpagetoday.com/blogs/camp...

The Truth About Supplements: 5 Things You Should Know

Though many supplements are certainly beneficial to your health, evidence varies widely, and it’s important to know which can benefit your health and which may be harmful.

pennmedicine.org/updates/bl...

Alternative therapies: what’s the harm?

- scienceblog.cancerresearchu...

From Holistic Health Guru to Patient Advocate: The Importance of Respecting Evidence-Based Medicine - Patient Power video interview with Cherie Rineker, which tackles tough questions on Big Pharma, stigmas around clinical trials and cancer treatment, and explains how her perspective shifted while fighting for her own life with an aggressive form of myeloma.

- patientpower.info/video/fro...

Still no good evidence that most complementary medicine works

- healthunlocked.com/cllsuppo...

CLL Specialist Dr Nichole Lamanna Impacting CLL Management With Lifestyle Modification

From Cure Today: youtu.be/6nOKjGbGJtk

Alternative cancer therapies: the potential impact on survival

- scienceblog.cancerresearchu...

We'd all like a natural, side effect free treatment for CLL that could at least keep it under control and ideally cure us and we would all prefer to avoid what can be very dangerous side effects from approved treatments. Sadly biological realities are such that nothing is risk free. Any intervention has the potential for causing side effects and very importantly, potentially fatal interactions with drugs/supplements we are already taking: healthunlocked.com/cllsuppo... . Side effects are nothing more than interactions with body cells we don't want targeted. St John's Wort provides a good example of how a natural cure can interact with other drugs - importantly for many of us on Ibrutinib! healthunlocked.com/cllsuppo...

Other herbal supplements you shouldn't try

healthunlocked.com/cllsuppo...

Each new generation of targeted CLL drugs aims to more specifically target just CLL cells, yet side effects persist, with serious side effects the reason some have to discontinue treatment. (But we need to remember that people are far more likely to post about challenging side effects than post about not having problems. Also, with approved treatments, there's a comprehensive list of side effects documented.) It is highly unrealistic to expect an alternative cure to just cure CLL with no adverse effects. Just researching the other uses for the treatment will quickly show that there are other effects; if the treatment works for other cancers as well as CLL, then for those cancers, a side effect would be a reduction in immunity due to B-lymphocytes also being targeted.

The high costs of approved treatments and the sometimes deservedly poor reputation of 'Big Pharma' are also disturbing to many of us. However, we need to bear in mind that anyone providing a service or product needs to live - alternative practitioners don't provide services free of cost and don't face the scrutiny of government organisations like the FDA, which account for much of the high cost of drug development - a cost NOT borne by alternative treatments. Don't fall for the myth that alternative medicine is a poor David fighting the Goliath of 'Big Pharma'. From the article referenced in this post: healthunlocked.com/cllsuppo... , alternative medicine is a $37 billion-a-year business!'

To kill cancerous cells, an effective treatment typically:

1) causes sufficient DNA damage to the cell so that the programmed cell death process, called apoptosis, is triggered (this is how chemotherapy drugs work). Importantly, healthy cells become cancerous when DNA damage prevents these apoptosis pathways from working - which is why TP53 mutation/17p deletion CLL doesn't respond well to chemotherapy based treatments.

2) flags the cell for destruction by our immune system (this is how monoclonal antibodies work)

3) inhibits one of the many 'stay alive' pathways in the cell, so that the cell dies (this is how inhibitor drugs work)

4) targets a (hopefully over-expressed in the cancer) cell receptor that triggers apoptopsis

The challenge is in finding some way to selectively target just the cancerous cells, or non-cancerous cells will also be killed. Sometimes cancerous cells 'over-express' some characteristic, so that treatments targeting that characteristic are more likely to kill the cancerous cells, hopefully sparing most of the healthy cells. Importantly, natural substances with known anticancer properties won't work against a specific cancer unless the cancerous cells have receptors or pathways targeted by the anticancer component. This is why so many alternative treatments that show promise for other cancers, even other leukaemias and lymphomas, often fail to show any effect in CLL. With CLL, there are so very many ways healthy B-lymphocytes can be transformed into CLL cells, that for some of us with CLL cells with the 'right' DNA damage, an alternative treatment may provide some benefit, but it won't universally work. Not even carefully designed drugs specifically made to target CLL cells work for 100% of patients - hence the reporting of Complete Response and Partial Response rates in studies, so it is unrealistic to expect that a natural cure that was claimed to worked for someone else with CLL will also work for you. Even in the best studied natural remedy for CLL - green tea, 31% of those in the trial didn't see a biologic response (i.e. they had no statistically significant reduction in lymphocyte count or node size).

CLL cells are more vulnerable than healthy B-cells and are easily destroyed in 'in vitro' (test-tube laboratory testing). Their fragile cell walls lead to them easily breaking during blood draws, which is why it is common to see the comment 'Smudge cells present' (i.e dead CLL cells from broken cell walls) on our blood test results. However, in our bodies, CLL cells manage their local environment to protect and nurture them, so very often substances shown to be active in vitro, fail to have any effect 'in vivo' or in the body. Be wary of natural remedies which are claimed to be active against CLL if the supporting research only shows in vitro evidence. Per: Targeting the tumor microenvironment in chronic lymphocytic leukemia, with my emphasis: doi.org/10.3324/haematol.20...

"The tumor microenvironment (TME) plays an essential role in the development, growth, and survival of the malignant B-cell clone in chronic lymphocytic leukemia (CLL). Within the proliferation niches of lymph nodes, bone marrow, and secondary lymphoid organs, a variety of phenotypically and functionally altered cell types, including T cells, natural killer cells, monocytes/macrophages, endothelial and mesenchymal stroma cells, provide crucial survival signals, along with CLL-cell-induced suppression of antitumor immune responses."

Another huge problem with determining whether something is likely to be active against CLL is the lack of CLL specific cell lines for in vitro testing. CLL is one of around 200 different human leukaemias/lymphomas: healthunlocked.com/cllsuppo...

This post references a very interesting 10 minute video (with transcript) of oncologists sharing their experiences of patient myths picked up from online communities: healthunlocked.com/cllsuppo...

Now to the evidence for other commonly recommended alternative/complementary treatments:

Diet - Should you be eating clean?sciencebasedmedicine.org/sh...

Most of us re-evaluate our diet after our diagnosis and improving a poor diet can help our body better fight our CLL. However the evidence for actually curing CLL through dietary changes is lacking: healthunlocked.com/cllsuppo... , in particular for Gerson Therapy (formulated nearly 80 years ago and well before our scientific understanding of cancer): rationalwiki.org/wiki/Gerso...

In March 2022, the UK Charity Commission removed the Gerson Support Group (GSG) from the UK's charity register, after the GSG "trustees acknowledged that the evidence around Gerson nutritional therapy, and its claims to treat cancer and its symptoms, would not now meet the Commission’s criteria for registration as a charity." gov.uk/government/news/orga...

Vegan diet

Is Dr Greger overselling the benefits of a vegan diet?

sciencebasedmedicine.org/de...

Forks over knives and The China Study

csicop.org/specialarticles/...

aicr.org/about/advocacy/the...

Note the acknowledged importance of a healthy weight and exercise and how this could confound the results of the studies behind Forks over knives and The China Study.

What the Health (2017)

This documentary film advocates for a plant-based diet by critiquing the health impact of meat and dairy products consumption, and questioning the practices of the leading health and pharmaceutical organizations. It's been "criticized by a number of medical doctors, dietitians, and investigative journalists for what they describe as confusing causation with correlation, cherry picking science studies, using biased sources, distorting study findings, and using "weak-to-non-existent data"

en.m.wikipedia.org/wiki/Wha...

Further "A meta-analysis of 61 studies including more than 1.9 million participants found that in the cohort studies, intake of fermented dairy significantly decreased the risk of cancer (odds ratio [OR], 0.86; 95% confidence interval [CI], 0.80-0.92). Yogurt significantly decreased cancer risk in the cohort studies (OR, 0.81; 95% CI, 0.74-0.88). When stratified by cancer type, fermented dairy significantly decreased the risk of bladder, colorectal, and esophageal cancers. Another meta-analysis, however, which included 11 cohort studies and over 700,00 participants, found no association between yogurt or cheese intake and cancer-specific mortality. Similarly, fermented food intake, which was primarily fermented dairy, was not associated with all-cause mortality or cancer-specific mortality in a large cohort study."

cancertherapyadvisor.com/ho...

Reducing Sugar

healthunlocked.com/cllsuppo...

CLL actually derives its energy from lipids (fats) not sugar!

healthunlocked.com/cllsuppo...

Intermittent Fasting/Water Fasting

Only human studies are limited to its use concurrently with approved treatments for some cancers, where some promising results have been reported. No specific CLL studies, but cyclophosphamide (the 'C' in FCR) is one of the cancer drugs showing synergistic benefit.

healthunlocked.com/cllsuppo...

EXERCISE has incredible evidence behind it, but few sing it's praises!

- healthunlocked.com/cllsuppo...

The Mediterranean Diet seems to regularly rate as the best diet health wise

- healthunlocked.com/cllsuppo...

Various 'Treatments'

Wikipedia maintains a list of unproven and disproven cancer treatments here: en.wikipedia.org/wiki/List_...

Acupuncture

- healthunlocked.com/cllsuppo...

Alkaline Water/Diets

Actually scientific evidence shows cancer cells proliferate slower than healthy cells in a more acid intracellular environment!

- sciencedaily.com/releases/2...

But you can't adjust your body pH by what you eat anyway!

- sciencebasedpharmacy.wordpr...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo....

Ayurvedic medicine for CLL/SLL - members reported only getting worse!

(CLL is rarest in Asian countries)

healthunlocked.com/cllsuppo...

Hydrogen Peroxide (H2O2) and Ozone Therapy

- forbes.com/sites/brittmarie...

- healthunlocked.com/cllsuppo...

- healthunlocked.com/cllsuppo...

Hyperbaric Oxygen Chamber Treatment

- healthunlocked.com/cllsuppo...

Herbal remedies, immunity boosters, vitamins, supplements

Medical studies consistently fail to show a level of benefit commensurate with how much society (in particular healthy individuals) spend on these. There are valid concerns about the lack of regulation of this huge industry, with effective lobby groups opposing regulation proposals aimed at ensuring customers get what they are paying for.

What is the state of supplement regulation in the USA?

strongerbyscience.com/suppl...

(Note that in 2019, the FDA began investigating changes it could make to further improve consumer health and safety.)

Dietary Supplements Pose Real Dangers to Patients (note the valid concerns about microbial and heavy metal contamination and unapproved pharmaceutical ingredients (the latter found in 20% of dietary supplements)

- journals.sagepub.com/doi/10...

- healthunlocked.com/cllsuppo...

- america.aljazeera.com/opini...

- refinery29.com/natural-supp...

- alternet.org/personal-healt...

- blog.euromonitor.com/2014/0...

The inclusion of undisclosed drugs to guarantee an effect is also an issue

- medpagetoday.com/publicheal...

The evidence for herbal and botanical remedies, Parts 1 and 2

mdedge.com/sites/default/fi...

mdedge.com/sites/default/fi...

Vitamin and Mineral Supplements - What Clinicians Need to Know

jamanetwork.com/journals/ja...

Remedies to boost your immunity are particularly problematic, because where there is good evidence that they work, they do so by boosting lymphocyte production - something we already have in over-abundance! Common ingredients are Astragalus and Beta-Glucans: From ncbi.nlm.nih.gov/pmc/articl... "In vivo, AM (Astragalus membranaceus) induced significant elevations in both total and specific leukocyte populations but changes remained within normal physiological limits. Specifically, CD3+, CD3+CD4+ and CD3+CD8+, and CD19+ lymphocyte populations were induced while natural killer (CD56+) cell populations were unchanged." (My emphasis/additions. CD19+ lymphocytes are B-lymphocytes and CLL cells are clonal B-lymphocytes!)

There's even one form of CLL where "CLL cells ... proliferate in response to β-(1,6)-glucan": ncbi.nlm.nih.gov/pubmed/232...

healthunlocked.com/cllsuppo...

There is however, strong evidence that many of us can benefit from a vitamin D3 supplement, particularly if our serum level is below the normal range, with many of us reporting significant reductions in fatigue. Per this meta-analysis

- ashpublications.org/bloodad... , Time to Treatment "TTT was significantly shorter in the group of patients with lower vitamin D status".

Vitamin B12/folate/iron may also help those of us with anaemia, provided that this is in part caused by our inability to absorb these nutrients.

- healthunlocked.com/cllsuppo......

- healthunlocked.com/cllsuppo...

- healthunlocked.com/cllsuppo...

The evidence for the potential usefulness of a number of natural substances is covered in this paper, authored by some well known CLL researchers/specialists Maintenance therapy for CLL Kay, O’Brien, et al: hematologyandoncology.net/f...

Traditional Chinese Medicine (TCM)

- healthunlocked.com/cllsuppo...

- nccih.nih.gov/health/whatis...

and from a Hong Kong doctor working in both the allopathic and TCM fields

- healthunlocked.com/cllsuppo...

Other natural substances discussed on this forum include:

Bovine Colostrum

(To hopefully boost immunoglobulins)

- healthunlocked.com/cllsuppo...

Chaga Tea/Chaga mushrooms

- healthunlocked.com/cllsuppo...

Essiac Tea

- cancerresearchuk.org/about-...

Elderberry/Sambucol is promoted as a lymphocyte stimulant, not what you want when you already have too many!

healthunlocked.com/cllsuppo...

Turkey tail, Shitake and other mushrooms can stimulate lymphocyte production!

- healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo...

healthunlocked.com/cllsuppo....

Green Tea/EGCG

I don't consider this alternative, given the phase II Mayo Clinic trial findings: ncbi.nlm.nih.gov/pmc/articl... However, I note that Mayo Clinic now states on their website:- "A study of people with early-stage chronic lymphocytic leukemia found that EGCG in pill form reduced some signs of the disease. But green tea trials haven't been conclusive, and this subject requires more study before doctors can agree on the merits of this treatment." mayoclinic.org/diseases-con....

Further to the above, the problem with taking EGCG, is in finding a reliable supplier able to provide capsules with the guaranteed high concentration of EGCG with low levels of pesticides, heavy metals and other contaminants (e.g. bacterial and fungal). Also the high levels of EGCG which were used in the clinical trials can cause liver damage in some people.

- healthunlocked.com/cllsuppo...

- healthunlocked.com/cllsuppo...

- healthunlocked.com/cllsuppo...

Papaya Leaf Extract to boost platelets

healthunlocked.com/cllsuppo...

Turmeric/Curmumin

This post includes plots of the absolute lymphocyte count of 21 study participants taking a proprietary blend of curcumin and lecithin for increased bio-availability. I think the best that can be said is that curcumin may slow progression in a few of us.

- healthunlocked.com/cllsuppo...

- healthunlocked.com/cllsuppo...

- healthunlocked.com/cllsuppo...

- curetoday.com/articles/curc...

- healthunlocked.com/cllsuppo...

Resveratrol

Looks promising, but insufficient serum levels can cause B-cell proliferation! healthunlocked.com/cllsuppo...

High dose vitamin C

Vitamin C has been shown to enhance the proliferation of T-cells and possibly B-cells (which includes CLL), but the evidence is not conclusive in humans. We need human in vivo studies to truly know the effects

- healthunlocked.com/cllsuppo...

- healthunlocked.com/cllsuppo...

- healthunlocked.com/cllsuppo...

- healthunlocked.com/cllsuppo...

- Antioxidants, such as vitamin C and E

theconversation.com/health-...

Apricot Kernels, Amygdalin, Laetrile, Vitamin B17

Per this 1982 trial, "No substantive benefit was observed in terms of cure, improvement or stabilization of cancer, improvement of symptoms related to cancer, or extension of life span. The hazards of amygdalin therapy were evidenced in several patients by symptoms of cyanide toxicity or by blood cyanide levels approaching the lethal range. Patients exposed to this agent should be instructed about the danger of cyanide poisoning, and their blood cyanide levels should be carefully monitored. Amygdalin (Laetrile) is a toxic drug that is not effective as a cancer treatment."

- pubmed.ncbi.nlm.nih.gov/703...

- - healthunlocked.com/cllsuppo...

- rationalwiki.org/wiki/Laetrile

Dichloroacetic acid, - DCA

- healthunlocked.com/cllsuppo...

Gc-MAF

- healthunlocked.com/cllsuppo...

Neem Leaf Extract

healthunlocked.com/cllsuppo...

Noni Juice

- healthunlocked.com/cllsuppo...

Rigvir, another unproven and dubious cancer therapy to be avoided according to Science Based Medicine

- sciencebasedmedicine.org/ri...

It's certainly got an interesting and long (50 year) history, so why isn't it better known if it is as effective as claimed?

Wheat Grass

- healthunlocked.com/cllsuppo...

Medical use of Marijuana, CBD, Rick Simpson's Oil This large section reflects the disproportionate amount of interest shown in a substance which shows so little evidence of usefulness with CLL other than in reducing nausea during treatment and possibly in pain management when other options prove ineffective.

In July 2019, the FDA published a consumer update on its website ( fda.gov/consumers/consumer-... ) that addresses some of the many claims surrounding this prevalent cannabinoid and attempts to dispel the notion that it is some kind of risk-free miracle drug.

Update: FDA Warning Letters and Test Results for Cannabidiol-Related Products - Dec 2020

Over the past several years, FDA has issued several warning letters to firms that market unapproved new drugs that allegedly contain cannabidiol (CBD). As part of these actions, FDA has tested the chemical content of cannabinoid compounds in some of the products, and many were found to not contain the levels of CBD they claimed to contain. It is important to note that these products are not approved by FDA for the diagnosis, cure, mitigation, treatment, or prevention of any disease. Consumers should beware purchasing and using any such products.

fda.gov/news-events/public-...

CBD has over 530 drug interactions, including BTK inhibitors, such as Acalabrutinib, Ibrutinib, etc - see below. Several of these interactions are "major" and can lead to serious harm or even death.

- drugs.com/drug-interactions...

More specifically with relation to cancer and CLL in particular

- healthunlocked.com/cllsuppo... which concludes that cannabis may encourage the movement of CLL cells from the blood into the nodes, spleen and bone marrow, where they propagate and interfere with blood cell production!

Cannabis, cannabinoids and cancer – the evidence so far:

- scienceblog.cancerresearchu...

- thepharmafist.com/cannabis/

- Cannabinoid Receptors Are Overexpressed in CLL but of Limited Potential for Therapeutic Exploitation, from PLOS1, June 2016: journals.plos.org/plosone/a...

From the Discussion section: "While we did find that cannabinoids reduced viability of CLL primary cells considerably independent of CNR mRNA expression, we found healthy cells to be affected to the same degree. Thus—and in contrast to other malignancies—our data suggest cannabinoids to be of poor therapeutic potential for treatment of CLL although CNR1 mRNA expression could be determined as novel prognostic marker. Their role in CLL notwithstanding, cannabinoids may still proof useful for anti-tumor therapy in other, selected hematologic malignancies and solid tumors in which the potential of cannabinoids will have to be studied accordingly." (My emphasis)

With respect to two areas where cannabis does appear to help; nausea and pain relief, from The Newyorker:

"...smoking pot is widely supposed to diminish the nausea associated with chemotherapy. But, the panel pointed out, “there are no good-quality randomized trials investigating this option.” We have evidence for marijuana as a treatment for pain, but “very little is known about the efficacy, dose, routes of administration, or side effects of commonly used and commercially available cannabis products in the United States.”

:

Figuring out the “dose-response relationship” of a new compound is something a pharmaceutical company does from the start of trials in human subjects, as it prepares a new drug application for the F.D.A. Too little of a powerful drug means that it won’t work. Too much means that it might do more harm than good. The amount of active ingredient in a pill and the metabolic path that the ingredient takes after it enters your body—these are things that drugmakers will have painstakingly mapped out before the product comes on the market, with a tractor-trailer full of supporting documentation."

newyorker.com/magazine/2019...

medscape.com/viewarticle/90...

CBD oil can interfere with BTK inhibitors (Acalabrutinib, Ibrutinib, etc) and other prescription drugs, including prednisone. That's because CBD oil is a potent inhibitor of CYP3A4, medicinalgenomics.com/wp-co... the Cytochrome P 450 liver enzyme responsible for metabolizing many drugs. Using CBD can effectively cause overdosing on various prescription drugs that use that pathway, thereby increasing the associated side effects of those drugs.

healthunlocked.com/cllsuppo...

mdedge.com/rheumatology/art...

Previous HealthUnlocked posts on Marijuana, CBD, Rick Simpson's Oil

- healthunlocked.com/cllsuppo...

- healthunlocked.com/cllsuppo...

- healthunlocked.com/cllsuppo...

- healthunlocked.com/cllsuppo...

- healthunlocked.com/cllsuppo...

Finally, "Americans for Safe Access recently issued the Patient’s Guide to CBD to provide background on cannabidiol and recommendations regarding its dosing and handling.

The Americans for Safe Access is an organization consisting of medical professionals, scientists, patients and others who promote safe and legal access to cannabis for therapeutic uses and research, according to the guide. Researchers used data gleaned from nearly 100 journal articles, committee opinions and websites to come up with the guide’s contents."

healio.com/primary-care/pai...

Note particularly the points about both a too low or too high dose not being effective and the significant discrepancies between the claimed and actual concentrations, plus the warning about the potential for an effect on liver function and "CBD is metabolized by the P450 system in the liver. So ingesting CBD can prolong the half-life of other drugs. Patients on antiplatelet agents or blood-thinning agents who want to take CBD should be particularly mindful of this."

Finally note:

“Due to a current lack of adequate governmental regulation with regard to hemp-derived CBD products, consumers purchasing CBD products from a source other than a medical cannabis dispensary must be wary of unscrupulous actors and poor production processes. It should also be noted that not all medical cannabis dispensaries are the same."

Homeopathy is a pseudo-science for which there is little evidence of effectiveness

healthunlocked.com/cllsuppo...

Can the liver be cleansed by a detox diet or supplement?

healthunlocked.com/cllsuppo...

and finally: healthunlocked.com/cllsuppo...

Other discussions on alternative treatments can be found via the Site Search.

Please bear in mind that this community's guidelines ask that members not promote alternative treatments, because the administrators and volunteers aim to keep the content of this community evidence based. Members are welcome to share their experiences on alternative medicine, with factual evidence (blood tests, node and spleen changes, CT scans and bone marrow changes) strongly encouraged.

Updated 8th June 2022

Added reference to post on Ayurvedic medicine for CLL/SLL

Updated 30th June 2022

Added references to a post about studies showing Facebook targets unproven treatment ads to those with cancer and a post where members share what can happen if you delay recommended CLL treatment.

Neil

in reply to AussieNeil

Right after I was diagnosed 8 years ago I saw a naturopath and began to take the green tea extract and other supplements. I felt great. However on my next dr visit my lymphocyte numbers had doubled. Dr asked if I’d changed anything and when I told him he said to stop all supplements even a multivitamin. His reasoning was since we don’t know what causes cll by takin supplements I might be feeding the white cells. Today I take vitamin d as my levels were dangerously low and omega 3 for dry eye syndrome

Thank you for you insightful post.

lorna222 profile image
lorna222 in reply to

Thank you for that information. I feel like we are constantly bombarded with supplements to take for this and that, the whole thing makes my head hurt! So many sellers prey on our fear....I will leave well enough alone, thanks!

Luckyliss profile image
Luckyliss in reply to AussieNeil

Neil how do I save this lengthy and amazing source of information ?????

AussieNeil profile image
AussieNeilAdministrator in reply to Luckyliss

Continuation of my reply (I've exceeded the word limit in my above reply: healthunlocked.com/cllsuppo... )

Lead, mercury, and arsenic in US- and Indian-manufactured Ayurvedic medicines sold via the Internet (2008)

pubmed.ncbi.nlm.nih.gov/187...

Conclusion: One-fifth of both US-manufactured and Indian-manufactured Ayurvedic medicines purchased via the Internet contain detectable lead, mercury, or arsenic.

Apparently, in some countries lead is added to provide extra weight in dry products to stretch out the supply! Lead Chromate is added to turmeric in Bangladesh for a brighter yellow!

Approved medicines vs supplements

Epidemiologist Gideon Meyerowitz-Katz (HealthNerd on X - formerly Twitter)

"Don't like pharmaceutical companies because they've done bad things?

Supplement sellers do the EXACT SAME stuff, but with less regulation! Also, they're often owned by pharma!"

New rules for natural health products will increase costs, reduce choice, Edmonton critics warn

- Health Canada says regulations will ensure products are safe and effective

cbc.ca/news/canada/edmonton...

"If natural health products are so safe and important for people's health then why is the industry so opposed to regulations that protect consumers and demand efficacy data?"

Supplements May Lead to Financial, Adherence Issues in Breast Cancer

One quarter (25%) of participants reported high out-of-pocket costs from supplements.

curetoday.com/view/suppleme...

Natural Doesn't Necessarily Mean Safer, or Better

- A lot of people believe that when it comes to medicine, “natural” is better, healthier, and safer than “unnatural” or synthetic drugs.

Nature has been good to us. Nature gave us aspirin and morphine, and other medicines derived from plants. The use of plants as medicines has a long history in the treatment of disease, and plants have played an important role in improving our health.

But not all products from nature have been shown to be effective.

nccih.nih.gov/health/know-s...

The Fallacy of the Appeal to Nature

youtu.be/lI9hp8kZahw

- The appeal to nature fallacy occurs when something is assumed to be good because it’s considered natural, or bad because it’s considered to be unnatural. Examples where the fallacy occurs include skincare products, cancer treatments, and viruses.

Myths and Facts About CLL Treatment

webmd.com/cancer/lymphoma/c...

Antineoplastons Dr Stanislaw Burzynski/Burzynski Clinic

Unproven after 25 years of research

healthunlocked.com/cllsuppo...

Joe Tippens Protocol - Fenbendazole

Per How cancer patients get fake cancer information: From TV to YouTube, a qualitative study focusing on fenbendazole scandle ncbi.nlm.nih.gov/pmc/articl... "Joe Tippens was a participant in the Kitruda clinical trial at the MD Anderson Cancer Center, and his improvement was likely to be the effect of immuno-cancer drugs."

The study ncbi.nlm.nih.gov/pmc/articl... referenced here: fenbendazole.org/2019/12/19... states under the White Cell section; "There was a trend (P = 0.06) toward increased total white cell count and a significantly increased lymphocyte count (P = 0.009) in the fenbendazole-only group compared with controls." (My emphasis) In the discussion section the authors note "Fenbendazole has had immunomodulatory effects in sheep and mice and stimulated proliferation of T and B cells in healthy mice," CLL is a B cell cancer; you don't want to stimulate it!

Per healthunlocked.com/cllsuppo... CLL thrives on fats, not glucose, which is why CLL doesn't show up on PET scans, so fenbendazole won't slow the growth of CLL via the second point on how it should theoretically slow cancer, per fenbendazole.org/fenbendazo... "2) Inhibition of glucose uptake in cancer cells. Malignant cells are known to have an enormous glucose uptake. Cancer cells normally consume glucose 200 times faster than ordinary cells due to aerobic glycolysis (Warburg effect). This can be seen in PET scans – the metabolically active sites, which use more radioactive glucose can be clearly seen and are generally thought to be cancerous tumors or sites of inflammation."

Finally, there's no evidence of a cancer cure from the Joe Tippens Protocol per: fullfact.org/health/fenbend...

Supportive Oligonucleotide Therapy (SOT)

Only tested on a maximum of 15 leukaemia and lymphoma patients. No specific information on CLL.

healthunlocked.com/cllsuppo...

Report from 2016, on the use of 200mg per day of green tea catechins (which would mainly be EGCG) in a prostate cancer clinical trial

Randomized, placebo-controlled trial evaluating the safety of one-year administration of green tea catechins

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

Note from the introduction; ".. several preclinical studies and case reports have reported liver toxicities and acute gastrointestinal bleeding. Based on these observations, regulatory bodies have required stringent inclusion criteria with frequent, excessive toxicity monitoring and early stopping rules in clinical trials."

This clinical trial used 200mg per day, compared to the 4 grams (4,000mg) per day used in the CLL trials. I've included this study to increase awareness of the importance of working with your medical team if you decide to try green tea extracts, particularly in high doses, to try and slow CLL progression. Natural isn't necessarily safe.

More on Fasting - again no CLL specific studies and Mouse Model experiments indicate it could drive CLL into the bone marrow and reduce immunity

healthunlocked.com/cllsuppo...

Iron supplements

(Not an "alternative" treatment, but why it may not be an appropriate treatment for anaemia when we have CLL)

healthunlocked.com/cllsuppo...

More on mushrooms

healthunlocked.com/cllsuppo...

Phosphoethanolamine

healthunlocked.com/cllsuppo...

Thinking of trying a detox? Here’s what you need to know first

healthunlocked.com/cllsuppo...

Last updated 15th February 2024

Neil

Luckyliss profile image
Luckyliss in reply to AussieNeil

Thanks Neil

debralynn profile image
debralynn in reply to AussieNeil

I can't figure out how to bookmark. Can you help, Neil? Thanks much.

AussieNeil profile image
AussieNeilAdministrator in reply to debralynn

How you bookmark a location depends on your browser. You can always find this post in the top few posts of our pinned posts section:

healthunlocked.com/cllsuppo...

Pinned posts are located to the right of any post you are reading on a computer and some tablets and below any post on other devices.

Neil

debralynn profile image
debralynn in reply to AussieNeil

This is outstanding, thank you.

Awyn profile image
Awyn in reply to AussieNeil

WOW! Adding so much to my daily read! WOW!

Fowey2009 profile image
Fowey2009

Excellent article. I do have a concern about those who wax lyrical about their alternative medicines, healthy diet and exercise regime. They often show little empathy for those whose cll has progressed for whatever reason. Of course it is good to stay as healthy as possible but don't go on about it to the extent that other people feel like failures or that they have not been doing the 'right' things. (Similar message to the 'avoid FCR at all costs' people!!). In my experience cancer of every type is no respecter of person or lifestyle. Beryl

Newdawn profile image
NewdawnAdministrator in reply to Fowey2009

Very well said Fowey! I respect all ways of trying to tame this beast but echo your sentiments that no-one should feel lectured or feel a failure for not following the often untested methods of others.

Newdawn

debralynn profile image
debralynn in reply to Newdawn

My doctor breathed terror and guilt into me recently for failure to see him every six months, even though I was following with my local oncologist and my general practitioner. He may have had a point but the way he spoke with me, the things he said to me, were unnecessarily stress-inducing. I'm on the search now for a new oncologist who can be a good clinician and a humanitarian.

Wordmonger profile image
Wordmonger

i agree that anyone who seems to "blame" those whose disease has progressed to treatment on lifestyle or somehow not "doing the right thing" is misguided indeed. I emphasize greatly with those who have required treatment, including my own sister. It's a genetic lotto we have involuntarily been dealt tickets for.

That said, for me, investigating ways to improve overall health rather than watching and waiting has been empowering and even possibly delayed the need for treatment.

AussieNeil profile image
AussieNeilAdministrator

I came across these related articles on Integrative Medicine that may be of interest to those exploring this topic;

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

pbs.org/newshour/rundown/to...

CLLmoxie profile image
CLLmoxie

Link will no longer open ???

lankisterguy profile image
lankisterguyVolunteer in reply to CLLmoxie

They work for me on Google Chrome and Internet Explorer with all cookies and pop ups blocked.

Suggest you restart your computer and "copy link address" to paste in your browser vs. just clicking the blue link.

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

pbs.org/newshour/health/top...

Len

Oleboyredw-uk profile image
Oleboyredw-uk

Hi Wordmonger ,

Thank you for sharing, a very interesting article. A couple of things in it particularly hit home (no testimonials for failures and cherry picking) to me, relating to my previous life when at work. Thought it was well balanced.

Then I scrolled down to the small selection of links AussieNeil added, do you have time to sleep? I'm afraid it is going to take me a while to work through them.

So, thank you both for bringing these together.

best to all, rob

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

Wow! I missed this when it first came out, and the many great links added to it. Thank you, Bleimsner for getting it going!

kathymac5252 profile image
kathymac5252

Thanks to all who have posted this valuable information. We have well meaning relatives who have said some very hurtful things to my husband and me about how he should fast for 3 days to jump start his neutrophils after he already lost 25 pounds that he could ill afford to, how he needs to cut out all sugar, how he needs to go gluten free, etc.....how our diet caused this.....on and on....We have learned just to nod and take it all in....It helps to have research based evidence to fall back on......I will need to take time to click on the links....thank you again

Luckyliss profile image
Luckyliss in reply to kathymac5252

I’ve had the same things said to me and want to punch people in the face but instead just started saying thanks so much I appreciate your kindness and am bit overwhelmed w so much information and will look into your ideas when I have more time !

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

Neil has left out one group in his list of those swearing by alternative approaches - those who Chris labeled as the group in de Nile - just floating down the river.

MsLockYourPosts profile image
MsLockYourPostsPassed Volunteer

Ironic that this popped up as the first post tonight for me. I don't see a new comment that would have bumped it up, but it certainly is worth a read or reread. The irony, for me, is that a friend, well educated, intelligent, and very caring, just messaged me about the Budwig Diet, with a testimonial and several links. Just like Noni Juice, which someone tried to sell me on when I was new at this, the Budwig diet will cure any health issue that you or your pets are dealing with! NOT!!!!!

I haven't figured out how to respond to her yet. Unlike the Noni Juice lady, who quickly became a former friend when she started telling me that my doctors were trying to kill me with treatment (by the way, she just happened to be a distributor for Noni Juice) this woman sincerely wants to help me. It's hard for people to understand that, yes, I have cancer, but right now the best approach for me is to accept that watch and wait is the best approach for me.

Vlaminck profile image
Vlaminck

Thank you for link. My husband's wonderful oncologist (who knew I was researching everything for his stage 4) pointed out to look for "in vivo" rather than "in vitro" (petri dish). When I google, I put "ncbi" in the search so that I just come up with actual medical articles.