CLL Support Association
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Good article on navigating complementary cancer treatments

I'msharing 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.

oicc.ca/en/blog/post/103?ut...

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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

6 likes
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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.

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 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 well past 10 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...

But natural is safe, right?

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

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...

Alternative therapies: what’s the harm?

- scienceblog.cancerresearchu...

Still no good evidence that most complementary medicine works

- healthunlocked.com/cllsuppo...

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. 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 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 deserved 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... It’s a $37 billion-a-year business.'

To kill cancerous cells, an effective treatment typically:

1) somehow 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)

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 for the anticancer ingredient. 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 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.

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 - Gerson Therapy

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).

- healthunlocked.com/cllsuppo...

Hydrogen Peroxide (H2O2) and Ozone Therapy

- healthunlocked.com/cllsuppo...

- healthunlocked.com/cllsuppo...

Alkaline Water

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...

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.

- healthunlocked.com/cllsuppo...

- america.aljazeera.com/opini...

- refinery29.com/natural-supp...

- alternet.org/personal-healt...

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

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. 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...

Some of the more frequently mentioned natural substances discussed on this forum include:

Green Tea/EGCG

I don't consider this alternative, given the phase II Mayo Clinic trial findings: ncbi.nlm.nih.gov/pmc/articl... The problem with using 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, plus high levels as used in the clinical trials can cause liver damage in some.

- healthunlocked.com/cllsuppo...

- healthunlocked.com/cllsuppo...

- healthunlocked.com/cllsuppo...

Turmeric/Curmumin

- healthunlocked.com/cllsuppo...

High dose vitamin C (Includes a reference to an earlier, interesting discussion)

- healthunlocked.com/cllsuppo...

Apricot Kernels, Amygdalin, Laetrile, Vitamin B17

- healthunlocked.com/cllsuppo...

- healthunlocked.com/cllsuppo...

Dichloroacetic acid, - DCA

- healthunlocked.com/cllsuppo...

Gc-MAF

- healthunlocked.com/cllsuppo...

Medical use of Marijuana, CBD, Rick Simpson's OilThis 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.

- Cannabis, cannabinoids and cancer – the evidence so far: scienceblog.cancerresearchu...

- 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)

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

- healthunlocked.com/cllsuppo...

- healthunlocked.com/cllsuppo...

- healthunlocked.com/cllsuppo...

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, CT scans and bone marrow changes) strongly encouraged.

Neil

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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.

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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!

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

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I add to my reply as new alternative/complementary cures are discussed, so you might be better off just bookmarking it.

Alternatively, you can copy and paste what you want into a word processing document, e.g. Microsoft Word, LibreOffice Writer. The links should be preserved, so you can just click on links in the document to go to the relevant references.

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Thanks Neil

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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

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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

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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.

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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...

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Link will no longer open ???

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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

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Hi Bleimsner,

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

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

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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

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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 !

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