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Tried dichloroacetate, Great energy return - But Chemical Taste to it

rodgergrummidge

Senior Member
Messages
124
hi @rodgergrummidge

great discussion indeed, thanks for sharing your view. It is surprising to me that the overall level is only marginally increased after years. Also, what you shared resonated with my experience: even after I stopped DCA I noticed the improvements remained.
Hi @sinas , Great you got some benefit. DCA is certainly is an interesting drug.

I come from a different background (being a cancer patient and maybe.... a cfs patient) - the few oncologists in Canada and Us that are actually using DCA recommend breaks (for instance 5 days on, 2 days off) You must be right in pointing out the different use for mitochondrial disorder... which is closer to CFS than cancer.

Are oncologists in the US and canada really using DCA for cancer? I wasnt aware that it was approved for the treatment of any cancer as yet. Are you sure they are actual clinical oncologists using DCA? I've heard that following some extravagant claims in the media that DCA is a wonder drug with anti-cancer activities that some 'alternative physicians' were treating cancer patients with DCA. It seems strange because the ability of DCA to increase mitochondrial metabolism may actually provide cancer cells with a growth advantage: something that should be avoided for any cancer therapy.

Have you tried DCA and if yes - did it help you?

No I havent..... yet. While my metabolic profile suggests that I have a mitochondrial metabolic defect, I'm still trying to identify exactly what it is. Some mitochondrial defects can masquerade as PDH defects, so I am being cautious. Given the potential toxicities of DCA, I dont want to take it unless I definitely know that DCA can be used to treat my particular defect.

ME/CFS, the most complicated disease known to medicine!!!!

Rodger
 
Messages
18
hi @rodgergrummidge

Seemingly the Canadian health system enables doctors and medical centers (at least in some cases) to take drugs that are approved (and known) against ANY disease - and re-use these against other diseases. I believe it is the same in the US. Definitely not in Europe.

http://medicorcancer.com/ - small Toronto based clinic that has been using DCA against various cancer types for years with moderate but statistically significant results - they had a few complete remission, most of the times it was helping but not curing

as to why and how it is useful against cancer;

https://www.cancertreatmentsresearch.com/dichloroacetate-dca-treatment-strategy/

(this is an unbiased cancer blog written by a knowledgeable guy with scientific background and not selling anything...)
 
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rodgergrummidge

Senior Member
Messages
124
hi @rodgergrummidge

Seemingly the Canadian health system enables doctors and medical centers (at least in some cases) to take drugs that are approved (and known) against ANY disease - and re-use these against other diseases. I believe it is the same in the US. Definitely not in Europe.

http://medicorcancer.com/ - small Toronto based clinic that has been using DCA against various cancer types for years with moderate but statistically significant results - they had a few complete remission, most of the times it was helping but not curing
Hi @sinas I think those guys treating cancer patients with DCA are probably exploiting patients with false promises. They claim to have treated over 2000 cancer patients and to have had remarkable percentage response rates (%RRs) including >60% response rates for some advanced cases. They also claim to have completely cured a significant number of patients. While they have published a few isolated case studies where DCA was given to cancer patients, unfortunately those studies appear in predatory journals that allow publication of weak, uncontrolled or even incorrect data.

Given that they have such high response rates, it is concerning that they have not published their results in a reputable scientific journal so that other scientists or oncologists could independently repeat the findings and support their claims.

They claim that they want to share their results openly by publishing them on their own website "so patients and physicians everywhere to benefit from this knowledge, and learn to use DCA safely and effectively." But their website’s ‘published’ results are uninterpretable. No physician examining their DCA data on their website would be able to interpret whether DCA is effective or ineffective. There is no indication of which drug combinations are used, how DCA compares to other treatments, no definitions of what a 'response' is and how it is measured, no statistical analysis of whether responses are significant, no indication of the time to first response, etc, etc, etc. It may be that the purpose of the ‘data’ posted on their website is not for convincing physicians but it is used as a marketing tool that provides a ‘sciencey look' in order to convince patients that the treatments are evidence-based.

They claim their ‘Observational Studies’ (eg. case-control studies, cohort studies and case series) shows that DCA has anti-cancer activity. This is not correct. 'Data’ published on a company website does not constitute an ‘Observational Study’.

Claims of full remissions and cures using DCA would be highly significant and exciting. However their explanation for why they do not submit their data for peer review and publication is somewhat strange. They suggest that they have embargoed their own research reports because if they were published they would “get headline news and the stampede that will happen will destroy our centers”.

Such potential stampedes have not prevented other groups from conducting DCA clinical trials. To date over 40 DCA human trials have been conducted including cancer trials (Invest New Drugs. 32:452; 33:603) and trials in metabolic diseases (Pediatrics. 117:1519). Importantly, the results from these trials have been published in reputable journals and findings can be validated or invalidated by independent researchers. The suggestion that investigating the anti-cancer activity of DCA has been blocked by those with a political agenda clearly hasnt stopped other investigators from publishing their results.

Another treatment marketed by the same group called "safe chemo" has been recently banned by the Canadian government because it was being offered to patients as a first-line treatment with insufficient clinical evidence.

as to why and how it is useful against cancer;
https://www.cancertreatmentsresearch.com/dichloroacetate-dca-treatment-strategy/
(this is an unbiased cancer blog written by a knowledgeable guy with scientific background and not selling anything...)

Unfortunately, the internet is a minefield in trying to evaluate the quality and reliability of medical information. sorting reliable from unreliable medical information is a nightmare. Today, anyone can write a blog on cancer treatments. Many are just complete rubbish. Just because a blogger seems unbiased is not selling a product, doesnt mean that they are able to provide an overview of a complex field in a knowledgable and accurate way.

For example, the blogger cites a number of papers that only examine the activity of DCA in vitro to support its anticancer activity. The blogger also cites the same papers published in the predatory journals that do not support the anti-cancer activity of DCA in patients.

There is no question that DCA is an interesting drug. It may well turn out to be an important drug that either directly kills cancer cells or indirectly increases the activity of other anti-cancer drugs. There are 8 clinical trials either recruiting, underway or completed at the moment. Results are coming. However, companies with no interest in providing evidence-based anti-cancer therapies will exploit jurisdictional grey areas so they can give unproven therapies to vulnerable cancer patients. Sometimes with disastrous outcomes.

I'm not sure what the answer is, but I guess it raises an interesting problem that is important to discuss in these forums.

How do we find high-quality reliable and evidence-based information so that we can select the best treatment plans for ME/CFS? How can we avoid opportunistic companies that charge excessive fees for ineffective treatments? Some of the most bizarre and far-fetched 'treatments' that some 'doctors' have recommended to me for ME/CFS were easy to spot. Cupping!?! Coffee enemas?!? But what if a treatment sounds valid? How do we work out if it has any evidence behind it or is complete rubbish?

Food for thought

Rodger
 
Messages
18
hi @rodgergrummidge

Re Medicor I agree with most of your remarks and i would not recommend them either.

Still, they also have published articles in reputable papers:

long term stabilisation of stage 4 colon cancer:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5067498/

Re the theory of how and why DCA works against cancer (because you stated you had thought it would be rather pro-cancer):

https://www.ncbi.nlm.nih.gov/pubmed/22495715

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2883702/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2567082/

Another cases:

remission of lymphoma, complete

https://www.ncbi.nlm.nih.gov/pubmed/20886020

long-term stabilisation of melanoma:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5554882/

remission of thyroid carcinoma

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3436382/

these are all well written articles by respected researches and peer-reviewed too

So there is scientific evidence behind its effectiveness - although more research is needed to understand why it works and why it doesn't .

I think the cancer page I referenced sums up the situation pretty well, please do read.
 

rodgergrummidge

Senior Member
Messages
124
Hi @sinas I am quite interested in DCA so I followed up the papers you said showed good clinical evidence of anti-cancer activity

hi @rodgergrummidge

long term stabilisation of stage 4 colon cancer:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5067498/
.
the paper above was published by the World Journal of Clinical Oncology which is published by the Baishideng Publishing Group and is identified as a 'predatory journal'. Predatory journals are defined by their i) readiness to publish work with little or no peer review, ii) willingness to publish substandard work of poor quality lacking essential controls, iii) high numbers of incorrect or misleading papers. One approach that has been used to determine whether a journal is a 'predatory journal' is whether they will readily publish hoax or nonsensical papers. Scientists who wish to publish high quality work avoid such journals for obvious reasons. Also of major concern is that the same person who is first author of this publication and has chosen a predatory journal to publish one (1) cancer patient, is also the Director of the company that has treated ~2000 cancer patients with DCA without producing any solid scientific evidence that it actually works. That alone should ring alarm bells.

this is a potentially an interesting paper, but unfortunately flawed. It is claimed by the author Flavin that the patient relapsed after conventional chemotherapy and that the patient cured themselves by self-administering DCA. But the author didnt even confirm that the reason for the lymph swelling and PET signals was due to lymphoma relapse prior to DCA treatment. No blood test. No biopsy. No lymphoma markers. The biggest artefact for PET hotspots in lymphoma patients are infection in lymph glands. Such sloppy science where the investigator did not perform the most basic analysis to confirm that the patient had lymphoma before DCA treatment means the data are simply uninterpretible. It may sound like I'm being pedantic, but poor quality science being used as evidence that DCA is an anti-cancer drug is at best misleading and falls well short of proving anything.

the above paper is also published in the World Journal of Clinical Oncology by the predatory Baishideng Publishing Group by the same lead author. Again the same lead author describes DCA activity in one (1) cancer patient, while directing a company that has treated ~2000 cancer patients with DCA without producing any published credible scientific evidence that it actually works.

Again Flavin publishes a paper that, like the one above, falls well short of showing DCA induced remission in an lymphoma patient. Again, Flavin claims that 'after 5 months of DCA administration, the PET scan showed a noteworthy reduction in tumor numbers and sizes.' However, no actual quantification of tumor numbers, sizes or intensity is provided. Most concerning is that the anti-cancer claims in teh abstract are completely contrary to the actual PET scans presented. The PET scan after DCA treatment clearly shows strong labelling of multiple tumors so the patient is clearly not in remission. In fact some PET signals are stronger, some are weaker and some are unchanged from the PET scan prior to DCA. Again, the claim that DCA has caused the remission is not supported by the data.

these are all well written articles by respected researches and peer-reviewed too

So there is scientific evidence behind its effectiveness

Unfortunately no. Overall, the major deficiencies outlined under each paper above are significant. But it is particularly alarming if these papers are being used as the supporting evidence for treating cancer patients with DCA. Much of the evidence posted on blogs and wellness clinics use the very DCA papers listed above suggesting that such papers are being used to lure cancer patients into trying DCA.

the theory of how and why DCA works against cancer (because you stated you had thought it would be rather pro-cancer):

My main point is that no-one can say whether DCA has i) anti-cancer activity, ii) no anti-cancer activity or iii) pro-cancer activity because there simply isnt any clear scientific evidence to support any such activities in patients.

But dont get me wrong. I am not anti-DCA. If there was a paper that published tomorrow that demonstrated good scientific evidence that DCA was found to act as a anti-cancer drug in patients, I would (by my own criteria) have to agree with you. But in the meantime, the current evidence being used to recruit cancer patients is just marketing dressed up to look like scientific evidence. As I mentioned earlier, trials are ongoing and it would be wonderful if DCA was proved to be effective even in subsets of cancers. But treating 100s patients with DCA based on the current evidence in my opinion is simply unethical.

Hopefully we are not getting off track in this thread, but its a great discussion about a fascinating compound.

Rodger
 
Messages
18
hi @rodgergrummidge

i dont get you wrong, and i like your due diligence

but what about the in vitro studies and the summary from Prof Michelakis?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2567082/

I am not saying that patients should self-administer DCA or go to Medicor based on mice or in vitro studies (we know the limitations in terms of drawing consequences) but these indicate it is likely to be helping rather than boosting cancer - but yes, more research is needed in humans - especially some cancer types seem to be very sensitive to it in lab. they could focus on those.
 

rodgergrummidge

Senior Member
Messages
124
hi @rodgergrummidge

i dont get you wrong, and i like your due diligence

but what about the in vitro studies and the summary from Prof Michelakis?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2567082/

I am not saying that patients should self-administer DCA or go to Medicor based on mice or in vitro studies (we know the limitations in terms of drawing consequences) but these indicate it is likely to be helping rather than boosting cancer - but yes, more research is needed in humans - especially some cancer types seem to be very sensitive to it in lab. they could focus on those.
Hi @sinas , yes I wholeheartedly agree.

Rodger
 
Messages
763
Location
Israel
Since this thread last started, has anyone had help from dichoroacetate and if you have, how long does it take to work?
 
Messages
12
hi All,

I am glad somebody opened this topic.

First of all: I am unsure if have CFS / ME (on top of my hopefully beaten cancer) but its very likely in my view. my story here:
http://forums.phoenixrising.me/index.php?threads/cfs-me-in-addition-to-cancer.54331/

Second: it is a toxic drug. Although the neuropathy caused is reversible. you need to be careful and start with a very low dose. Many people take 15mg per kg per day but i am not saying it is safe as it depends on the individual. Consult your doctor. It is a potentially DANGEROUS drug.....

When I took DCA (against cancer...) i noticed that:
- my back pain became milder in 3 days
- the amount of fasciculations was drastically decreased (to appr 10% of the previous frequency) This decrease was permanent which makes me wonder....

After like 3 months I did not notice any further improvement so I stopped to avoid the side effects. I am considering now again.

I dont have major fatigue but I noticed I was more active during the weeks I took DCA. Maybe it was placebo though. The above impact was NOT for sure.

DCA is known to restore the enzyme PDH which is required for the mitochondria to work. Although the PDH inhibition is a consequence in CFS and not a cause, seemingly restoring the PDH can actually help.

sinas

What is dangerous about it? Is it just the neuropathy? I haven’t found information on anything else
 

Rufous McKinney

Senior Member
Messages
13,363
Since this thread last started, has anyone had help from dichoroacetate and if you have, how long does it take to work?

In Jan of 2020, I purchased three bottles of DCA at the recommendation of a Japanese research study on COVID- or something COVID related.

It said- take DCA, l-carnitine, and a third thing not available in this country.

Early in our COVID mess- I decided to buy it, and also thought I'd someday try the DCA experiment. 99.9% pure, from Lithuania..unoh: an expiration date of 11/22.

Well, I'm too scared of it to try it. I probably wasted the money. Its on shelves wiht other COVID banishing supplies (melatonin, aspirin, chinese pills).