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Jimmoderator
unregistered user
Mar-25-07, 11:45 PM (PST)
 
"Are individuals a risk to clinical trials?"
 
   Will people taking DCA outside of clinical trials endanger clinical trials? Dr. Michelakis is of the opinion that if anyone gets sick taking DCA outside of clinical trials, the future of clinical trials of DCA will be compromised. What do you think?

Should terminally ill cancer patients be denied the right to try DCA during this period of "proper process?" If it takes 2 years to get DCA approved as a cancer treatment, more than 1.5 million people in North America alone will die of cancer; should they have a chance to try DCA or other unapproved therapies that might save their lives?


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Are individuals a risk to clinical trials? [View All], Jim , 11:45 PM, Mar-25-07, (0)  
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RJason
Member since Mar-15-07
79 posts
Mar-25-07, 11:47 PM (PST)
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1. "RE: Are individuals a risk to clinical trials?"
In response to message #0
 
>Will people taking DCA outside of clinical trials endanger
>clinical trials?

I believe that to be false. Trials aren't effected by efforts outside of the trial.

>Dr. Michelakis is of the opinion that if
>anyone gets sick taking DCA outside of clinical trials, the
>future of clinical trials of DCA will be compromised. What
>do you think?

How could it compromise the trials? The good doctor didn't give any details how this would or could effect future clinical trials.
>
>Should terminally ill cancer patients be denied the right to
>try DCA during this period of "proper process?"

No! I believe these patients have a right to do what they feel is best for them. I also believe a doctor should help them in this decision, to assist them with the medical attention needed to pursue their desire to try any experimental option available.

>If it takes 2 years to get DCA approved as a cancer treatment, 1.5
>million people in North America alone will die of cancer;
>should they have a choice to use an alternative therapy that
>might save their lives?

They should have the Right to!

Very good topic, Thank you

RJ

“Knowledge is Power”


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RJason
Member since Mar-15-07
79 posts
Mar-27-07, 00:43 AM (PST)
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4. "RE: Are individuals a risk to clinical trials?"
In response to message #3
 
First off The doctor has no right to call it illegal, he has No authority in this matter. The FDA must investigate before any action can be taken, which takes alot of time and documentation that the substance in question is a threat to the public safety and has No health benifits at all.

One example is discribed here;

http://www.cfsan.fda.gov/~lrd/fpephed6.html

I hope the FDA doesn't over step their authority in this, they are there to protect NOT dictate medical opinion. IF they can PROVE it to be such a threat, then so be it.

If DCA was such a threat it would have been controlled long ago!

Just my humble opinion,

RJ

“Knowledge is Power”


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Sandra
Member since Feb-27-07
434 posts
Mar-30-07, 06:22 AM (PST)
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5. "RE: Are individuals a risk to clinical trials?"
In response to message #0
 
It really bugs me that Michelakis thinks he is the only one capable of conducting a clinical trial. Why is he doing everything humanly possible to prevent doctors from prescribing and documenting the progress of their cancer patients. If compiled, wouldn't the information from this be as useful as a clinical trial? This way, millions wouldn't have to die waiting. Who's cancer is going to wait for a clinical trial?

Reports covering this story keep dragging up the comment about 'desperate cancer patients thinking they have nothing left to lose'. First of all it's insulting - many people have done mountains of research before trying DCA. Secondly, for me, it's not about 'what do I have to lose' at all. IT'S ABOUT WHAT I HAVE TO GAIN! Imagine for a moment what it might be like to be cancer-free again - what would you do for that? Would you let ANYTHING stand in your way for a chance at it?


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Pavette
unregistered user
Apr-04-07, 01:16 AM (PST)
 
6. "RE: Are individuals a risk to clinical trials?"
In response to message #5
 
   First of all wonderful thread...I for one am fortunate to be cancer free...for now...we never know what our future holds...to say an individual is desperate is demeaning..I totally agree. These wonderful people are no different than any one suffering from an aliment that effects the length and quality of their life. Everyone who has forge forward with trying DCA in my opinion is a hero...not just for trying but also for living with cancer day to day. There have never been any advancements without pioneers who are willing to take the risk.
If the good doctor didn't want anyone to experiment to improve or try to improve their quality of life, then good doctor should not have gone to the media and produce the findings he did.
My two cents!!


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Loni Labrum
Member since Feb-17-07
6 posts
Apr-09-07, 08:19 PM (PST)
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7. "RE: Are individuals a risk to clinical trials?"
In response to message #0
 
   Yes, I believe people have the right to try what they choose. No, I can't see that patients taking it now will affect clinical trials. Unfortunately there are enough of us cancer patients to go around!

In the last 6 years that I have been battling a recurrence, the doctor treats the symptoms i.e. when I am experiencing bone pain, a scan is done, tumor diagnosed, 5 more shots of radiation in that area. And don't get me wrong I am so grateful for the 6 years that these treatments have afforded me, but all the same, preventative treatment doesn't appear to be available. Thus far I have had 5 areas treated over the course of the last 6 years.

Should DCA be successful I see it as not only treating whatever cancer may be "active" but also a means of preventing further activity.

I am extremely grateful to Jim for making DCA available. A BC pharmacy quoted $1200 for a 27 day supply .... I've ordered a 6 month supply from Jim for aroung $270 Cdn and I intend to take it that length of time barring any extreme side effects.

Loni


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Living lymphoma
Member since Apr-13-07
1 posts
Apr-13-07, 04:09 PM (PST)
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8. "RE: Are individuals a risk to clinical trials?"
In response to message #7
 
   I have just read a very long warning type message from the internet that in essence says people with cancer should not self-treat with DCA for two main reasons:

They can suffer neuropathy and they can injure their livers.

But that reasoning makes no sense to me since a great many "offical" approved methods of treating cancer have those same risks and more. One treatment is so dangerous and toxic that it is initiated in the hospital intensive care unit!

Possible neuropathy and liver damage are par for the course with many standard chemotherapies. Radiation can injure or destroy skin, nerves and arteries.

So why is such a fuss being made over people with cancer self-treating with DCA?

Answer: BECAUSE THEY ARE SELF-TREATING, and WITH AN UNPATENTED DRUG NOT BEING SOLD BY ANY DRUG COMPANY, which means that the Cancer Industry LOSES SOME CONTROL and LOSES SOME MONEY. THOSE are the reasons, in my opinion, that such a fuss is being made about people self-treating themselves with DCA.

Though I hope otherwise, I personally do not think DCA is going to turn out to be any miracle drug.

But I certainly DO NOT discourage anyone who properly investigates for themselves the possibility of taking DCA, and who does so cautiously and reasonably, and if possible, under the guidance of a monitoring oncologist or other physician, from doing so.

To sum up: I believe there are plenty of cancer treatments that are as dangerous or more dangerous than DCA, and I believe any furor over the possible dangers of people self-treating with DCA is mostly due to the Cancer Industry---that is, the Drug Companies, the AMA, the NCI and the FDA---losing money and losing control. I therefore see little reason for people who wish to do so in an intelligent, cautious manner, not to try DCA.


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rtshinn
Member since Mar-7-07
57 posts
Apr-13-07, 04:12 PM (PST)
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9. "RE: Are individuals a risk to clinical trials?"
In response to message #8
 
   Amen!


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Sandra
Member since Feb-27-07
434 posts
Apr-13-07, 05:25 PM (PST)
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10. "RE: Are individuals a risk to clinical trials?"
In response to message #8
 
Absolutely!

As far as DCA being 'dangerous', one only need examine the initial media releases posted on the University of Alberta's website. http://www.depmed.ualberta.ca/dca/media.asp Every single one speaks of how safe DCA is. They are even able to skip clinical trials for toxicity.

When did DCA become 'dangerous'? It was when Dr. Michelekis got word that people were sourcing it, ahead of HIS clinical trials.

Now I read in the paper, that the very people Dr. Michelakis has been trying to prevent from using DCA (the really 'desperate ones') are ineligible for his trials anyway - so what purpose has been served?!

I WONDER HOW MANY PEOPLE HAVE DIED BECAUSE THEY COULDN'T ACCESS DCA.

http://www.canada.com/edmontonjournal/news/story.html?id=19249f32-4a06-49cc-a3a8-b7495ae5044e


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Living Lymphoma
unregistered user
Apr-14-07, 01:49 AM (PST)
 
11. "RE: Are individuals a risk to clinical trials?"
In response to message #10
 
   This is not only about DCA. This is about having FREE access to whatever we wish to try with regard to healing ourselves from cancer or from any sickness.

We are not children. We do not need and do not want the FDA/Big Pharma/NCI/AMA (medical "Big Brother") to tell us what kinds of medicine we can and cannot use.

I would very much like to see an organized, national movement of US citizens come together to oppose what Big Pharma/AMA/NCI/FDA are perpetrating. It truly is time, ESPECIALLY since the kinds of things those organizations are telling us to take for cancer and other degenerative illness work poorly and even cause serious harm.

It truly is time to let those who have set themselves up as highly profitable "Medical Authorities" that we are wise to them and that we aren't going to stand for what they're doing any longer.


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Informed
unregistered user
Apr-15-07, 10:24 PM (PST)
 
12. "RE: Are individuals a risk to clinical trials?"
In response to message #0
 
   From a research stand point yes.

http://www.thedcasite.com/dcaforum/DCForumID11/7.html


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