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Conferences DCA In The News Topic #8
Reading Topic #8
Jodie
Member since Mar-14-07
1 posts
Mar-14-07, 06:37 PM (PST)
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"newspaper article"
 
   I'm the health reporter with the Edmonton Journal. I've been keeping track of DCA discussions since January, since the main researcher of the Cancer Cell paper is from the University of Alberta in Edmonton, Canada.

I'm very interested in speaking with people who have decided to try DCA on their own. If you're willing and interested, please e-mail me at jsinnema@thejournal.canwest.com.

Thanks for your help.

Jodie


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newspaper article [View All], Jodie, 06:37 PM, Mar-14-07, (0)  
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Sandra
Member since Feb-27-07
434 posts
Mar-16-07, 03:01 PM (PST)
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1. "RE: newspaper article"
In response to message #0
 
From what was written in the paper this morning, it doesn't sound like you got any interviews. The only 'comments' were just taken from posts of people without permission. And it was not very 'unbiased'.


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rtshinn
Member since Mar-7-07
57 posts
Mar-16-07, 03:25 PM (PST)
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2. "RE: newspaper article"
In response to message #1
 
   I think the heading was more sensationalistic than the content. I'd rather go down swinging than give up, that's for sure!


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Sandra
Member since Feb-27-07
434 posts
Mar-16-07, 07:07 PM (PST)
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3. "RE: newspaper article"
In response to message #2
 
Except that no due diligence was done in trying to get permission from anyone whose name was used, nor did they mention until half way through that people have been using this for lactic acidosis for 30+ years. Tylenol is a more dangerous drug! It causes liver damage that is permanent.


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Sandra
Member since Feb-27-07
434 posts
Mar-16-07, 07:53 PM (PST)
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5. "RE: newspaper article"
In response to message #4
 
http://www.canada.com/edmontonjournal/story.html?id=1966dab6-3d79-4b78-965b-3eb1d226d1ce&k=88390


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banditoblake
Member since Feb-26-07
1 posts
Mar-16-07, 08:53 PM (PST)
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6. "RE: newspaper article"
In response to message #5
 
   Titled: Possibly fatal at $2 a pop?

Isn't a known side effect of chemotherapy spontaneous heart failure? How much is chemotherapy a "pop" again?

My guess is Jodie works as an outside consultant for glaxxowelcomesmithkline or whatever that perpetually merging pharmaceutical company is currently called.


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Sandra
Member since Feb-27-07
434 posts
Mar-16-07, 08:56 PM (PST)
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7. "RE: newspaper article"
In response to message #6
 
Yeah, I thought I saw the VULTURES circling when the 'offer for an interview' was posted. I was BANG ON!!


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Sandra
Member since Feb-27-07
434 posts
Mar-16-07, 09:03 PM (PST)
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8. "RE: newspaper article"
In response to message #7
 
Did you see the front page headline

"POSSIBLY FATAL - Cancer patients using compound that has only been tested on rats."

Well - we all know any cancer patient is a lab rat - just look at the side effects of chemo.

Hold on - I think I need to take something for my blood pressure!


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squareb
Member since Feb-26-07
50 posts
Mar-17-07, 02:33 AM (PST)
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9. "RE: newspaper article"
In response to message #8
 
   The title is unfairly sensational, though the article has some balance, including an interview with Jim of this website.

I think it is great that there is this website where people can exchange information on DCA.


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Helpn Hubby
unregistered user
Mar-17-07, 02:06 PM (PST)
 
10. "RE: newspaper article"
In response to message #9
 
   >The title is unfairly sensational, though the article has
>some balance, including an interview with Jim of this
>website.
>
>I think it is great that there is this website where people
>can exchange information on DCA.
Check out the EdmontonJournal web site, Michelakis has phoned Ron @ Downtown pharmacy & told him to STOP selling DCA!!! The articial appears balanced giving Ron's opinion. It states Health Canada @ this point of time has'nt told the supplier to stop selling the chemicials, but is it just a matter of time?
THIS WHOLE THING IS GOING TO EXPLODE!!!!!!!!!!
We need to sell it to our politicians that this will save the Health ministry $$$$$BILLIONS$$$$$ & set Canada up as the worlds most PROACTIVE country in conquering the ever escalating cost of fighting this disease. We need a politician that will run with this! (not a gerk like Gore thats only in it for his own profit!)
OOOO I think I'm getting started


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Sandra
Member since Feb-27-07
434 posts
Mar-17-07, 03:59 PM (PST)
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11. "RE: newspaper article"
In response to message #10
 
Here's the article!

http://www.canada.com/edmontonjournal/news/story.html?id=7875b934-48e4-4cb4-b9d0-7be687157b10&k=81346


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Sandra
Member since Feb-27-07
434 posts
Mar-17-07, 04:00 PM (PST)
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12. "RE: newspaper article"
In response to message #11
 
This it the pharmacy where I have my prescription for 6 months!! How can they revoke it NOW?!!!


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Sandra
Member since Feb-27-07
434 posts
Mar-17-07, 05:29 PM (PST)
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13. "RE: newspaper article"
In response to message #11
 
Thank you Jodie, for at least printing a cancer patient's point of view this time.

"I don't want my supply cut off because of some overzealous bureaucrats at Health Canada who have decided in this nanny state we live in that they know better than me what I'm supposed to be doing to myself," said the 51-year-old business owner, who has taken DCA since Feb. 14 in an effort to shrink a 25-centimetre-long tumour at the top of his pubic bone.

The man, who has done graduate work in biochemistry and microbiology, said he doesn't know when the drug effect will kick in. He is paying $1,200 every two months to have private MRI scans of his tumour, since he doesn't trust the public health-care system here. He isn't submitting his receipts for insurance purposes because he doesn't want to be tracked.

So far, he has suffered no ill effects.

"I have no concerns whatsoever," he said, noting that he's read many scientific articles about past clinical trials with DCA and is taking well below the amount given in studies.

"If you have six months left to live and doctors have told you to go home and die, what possible harm could there be in taking this?"



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Sandra
Member since Feb-27-07
434 posts
Mar-17-07, 05:33 PM (PST)
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14. "RE: newspaper article"
In response to message #11
 
It's obvious Bid Pharma is FREAKING OUT HUGE!!
They're trying to get the lid back on Pandora's Box! Imagine if DCA works! BILLIONS will be lost in obsolete chemo drugs - oncologists will all be out of work! No wonder word has gone out to SHUT THIS THING DOWN!!!!


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Sandra
Member since Feb-27-07
434 posts
Mar-17-07, 06:04 PM (PST)
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15. "RE: newspaper article"
In response to message #14
 
If we wait patiently for drug trials, Big Pharma can mess with the results (like they did with vitamin C) and either give too much (so it's ineffective) or not give enough (so the side effects are severe) and the drug that could have put them out of business will be shelved. HUGE MONEY to be lost by them if this works!!! BILLIONS


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squareb
Member since Feb-26-07
50 posts
Mar-17-07, 06:23 PM (PST)
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16. "RE: newspaper article"
In response to message #15
 
   I don't believe that big pharma is trying to prevent DCA from being put on the market. Even if DCA is not patentable, they can make a controlled release formulation that can be protected by patent. I am sure some pharmaceutical companies are working on it right now.

Oncologists will not be put out of business by DCA. You cannot take this drug on your own safely. It has a myriad of potentially serious side effects. You need an oncologist to monitor you.


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RJason
Member since Mar-15-07
79 posts
Mar-18-07, 11:53 AM (PST)
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20. "RE: newspaper article"
In response to message #16
 
>I don't believe that big pharma is trying to prevent DCA
>from being put on the market. Even if DCA is not patentable,
>they can make a controlled release formulation that can be
>protected by patent. I am sure some pharmaceutical companies
>are working on it right now.
>
>Oncologists will not be put out of business by DCA. You
>cannot take this drug on your own safely. It has a myriad of
>potentially serious side effects. You need an oncologist to
>monitor you.
---------------------------------

From what I've been reading, the best place to get prescribed and monitored would be from your GP (familt Doctor). DCA has been used for many years to treat Lactic acidosis, which is a side effect of many chemo treatments, or so some say. Whether the dca helps my wife or not at this point is not our main concern it is the harsh chemo treatments that have been continuous since july 2004.

Many people are thinking "What have I got to loose"

RJ

“Knowledge is Power”


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DCAsupporter
unregistered user
Mar-18-07, 01:57 AM (PST)
 
17. "RE: newspaper article"
In response to message #0
 
   I want to know what pharmaceutical company is paying you off to write a story with a sensational headline like that that is totally untrue!??

This drug may not have been used in Clinical trials yet with humans for Cancer but it has been used for 30+ yrs as an investigational drug in the US for mitochondrial disorders IN INFANTS AND CHILDREN WITH LITTLE OR NOT SIDE EFFECTS as long as the dosage is 25mg/kg/BID or lower and as long as patients are supplemented with Thiamine. US doctors can seek permission from the FDA for compassionate use for off-label uses such as cancer.It is FDA approves as an orphan investigational drug and can be procured by applying for an IND# thru the FDA as has been the case for the last 30+ yrs. If it were toxic and causing deaths of children do you really believe the FDA would allow it to be given for the last 30+ yrs? That being said to say it is toxic and causes death?? Where on earth do you get THAT?! That's just ridiculous and out and out disinformation. You obviously have not read the medical literature or you have picked and chosen articles in which very high dosages (100mg/kg BID or more) have been used in dogs for example. The only side effects noted at lower dosages were REVERSIBLE peripheral neuropathy and modestly elevated liver enzymes. Do you know how many millions of people on this planet with diabetes and other disorders live daily with peripheral neuropathy?? No one has died yet of that although it may be bothersome. People should be aware of that possible side effect and if they are dying and chose to take DCA and put up with that side effect it should be their choice.

People can die of taking too much aspirin but few do when following the appropriate dosages and precautions. Would you deny a dying person an aspirin just because overdosing on it can cause death? To do so would be likewise ridiculous. Dr Peter Stacpoole at the University of Florida, Gainsville, has been studying and using NaDCA in infants and children for 30+ yrs and his most recent study in Pediatrics (journal) last spring showed no side effects using 12.5mg/kg/BID. NO ONE DIED...not even the INFANTS in the study.

And as far as His royal highness Michelakis saying: "Even for those who say they have only six months to live and nothing to lose, it's not worth the risk." What a patronizing, condescending attitude toward patients. I do believe that is up to the individual patient who HAS 6 months to live ...NOT to Dr Michelakis.

His other point is also circumspect: "That's the worst nightmare in medicine, to start making judgments on whether a drug is good or bad based on what any patient will post on a blog. This is the death of medicine and organized research as we know it."

No, it is not. The real death of organized research happened long ago when Big Pharma got ahold of the medical journals, our legislators and the FDA. Big pharma, given the obvious postive results of DCA, have shown absolutely no interest whatsoever in persuing clinical trials. If they were really interested, as they say, in saving human lives they would have been all over this. Sadly, the reality is it would undercut their bottom line, the billions and trillions of dollars they can profit from chemotherapy blockbusters and drop their stock prices. This has left dying people with no other choice but to try to save their own lives with this potential miracle drug which has shown little or no side effects in when taken properly with thiamine supplementation.


What a pathetic excuse for science journalism. I suggest you go back to and get a real degree in biochemistry and then go work for big pharma right up front. Maybe theyll pay for your credits - you are already in their pocket.


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Sandra
Member since Feb-27-07
434 posts
Mar-18-07, 04:27 AM (PST)
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18. "RE: newspaper article"
In response to message #17
 
This is a cut and paste right off the U of A's website!

"Also, because DCA has been used in both healthy people and sick patients with mitochondrial diseases, researchers already know that it is a relatively non-toxic molecule that can be immediately tested patients with cancer." http://www.depmed.ualberta.ca/dca/


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Sandra
Member since Feb-27-07
434 posts
Mar-18-07, 02:51 PM (PST)
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21. "RE: newspaper article"
In response to message #18
 
More News today
Patients tout database for drug treatment
Lay people can't assess risks of using unproven cancer remedy, experts warn
http://www.canada.com/edmontonjournal/news/story.html?id=118cf727-e51a-44b7-916e-a7c8bae1b2db&k=19734

Did they mention we have 4 doctors involved?!!!


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eitek1
Member since Feb-17-07
13 posts
Mar-18-07, 09:31 PM (PST)
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22. "RE: newspaper article"
In response to message #21
 
   Jodie,
did you ever ask anyone here why we would like to put together a database? I know my answer is to help anyone that I possibly can. I am sure that everyone here would say the same thing. Is this the same as a regulated study? Absolutely not. Does anyone here think that it is. I don't think so.

My fathers cancer is too advanced for conventional treatment. According to my dad's oncologist, if everything goes right and my dad is lucky he will wake up 133 more times. That's it,end of story. Most of those 133 days he will probably be in great pain and look forward to the end. Through all this the one request that he did have was that we would donate his body to science. Even in death my father wishes to serve the greater good.

Along comes DCA. I submitted my fathers name for the Alberta study but he will be dead before they ever start treating patients. That leaves us very few choices. Does my father think it will cure him, not really, but here is a small hope that it will do some good. He is willing to try this drug that has shown little side effect in the proper dosage on the off chance that it might cure him. Any help that he can be to anyone else along the way he is happy to provide. Hence the database. If something bad happens, so be it. One thing is for sure he is going to die and that day will be very soon without any intervention.

So go ahead and write another article that makes the people on this board look like a bunch of lunatics. We are between a rock and a hard place. Until someone can say that DCA causes certian death, it is still not as much of a risk as doing nothing.

Until you are put in the situation we are, I promise you that you can't understand. I hope you never have to learn either...


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rsf
unregistered user
Mar-19-07, 00:50 AM (PST)
 
23. "RE: newspaper article"
In response to message #22
 
   Hmmm...how can I get people to read my article?

"If it starts going badly, who is following you before it gets out of control? By the time you realize your liver is failing, you're in big trouble," Shanner said.
EXCUSE ME? Did Andrea in quoting Shanner do any objective research, or due diligence into the article before it was written, or was it put together in the haste of publishing deadlines and in the interest of jumping on the bandwagon of the newspaper subject/flavour of the last few days? (Some of the people using DCA have done exhaustive in depth research, and are making informed and personal choices).

"DCA has been known to cause peripheral neuropathy in humans -- reversible damage to peripheral nerves that causes imbalance and finger numbness -- as well as low sperm counts in animal tests"
And I would ask,does conventional cancer treatment have -0- side effects? Any or all reversible?

I myself am finding it difficult as a concerned non-participant of DCA treatment, not to get worked up about some of the content of news articles written over the past few days referred to in these posts. The only good thing is - good or bad press, one can only hope it brings attention and aggressive action as an alternative to Pharmaceutical company driven drug$, treatment$, & the current dollar driven health care(?)system available for those afflicted with any form of cancer.
Having said that, I must give heartfelt thanks to those Docs,researchers,and caregivers that are truly interested in helping all,from young to old alike, suffering from any form of cancer.


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Diana
unregistered user
Mar-22-07, 02:15 AM (PST)
 
29. "RE: newspaper article"
In response to message #22
 
   If I read Dr. M.'s annoucement right, people with advanced cancer are not eligible for trials. That's extremely bad news in my mind.


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Sandra
Member since Feb-27-07
434 posts
Mar-19-07, 03:42 PM (PST)
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24. "RE: newspaper article"
In response to message #21
 
Monday's Edmonton Journal News...

DYING PATIENT WARY OF SUSPECT CANCER REMEDY

Decides to trust doctor's advice and avoid drug

http://www.canada.com/edmontonjournal/news/story.html?id=aca3997c-68c9-4486-9105-ddf77f85b743&k=4756


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Sandra
Member since Feb-27-07
434 posts
Mar-19-07, 03:47 PM (PST)
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25. "RE: newspaper article"
In response to message #24
 
Check out my links between Big Pharma and cancer 'charities', posted under 'Topics OTHER than DCA' and all of this nonsense will become CRYSTAL clear!


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Diana
unregistered user
Mar-19-07, 06:11 PM (PST)
 
26. "RE: Dr. Michelakis email for Monday, March 19th. 2007"
In response to message #25
 
  


DCA and Cancer Patients

Linda.Webster@capitalhealth.ca

Hi to everyone,

Please be informed that the University of Alberta site for DCA has been updated with a personal letter from myself. Stay tuned for continuing updates

http://www.depmed.ualberta.ca/dca

Sincerely

Dr. E. Michelakis
University of Alberta


The University of Alberta’s DCA Research Team is set to launch clinical trials on humans in the spring of 2007 pending government approval. Knowing that thousands of cancer patients die weekly while waiting for a cure, Dr. Michelakis and his team are working at accelerated speed, condensing research that usually takes years into months. Fundraisers at the University of Alberta are determined to raise the money to allow this next phase of research to begin. Once Health Canada grants formal approval, the University of Alberta’s Research Team will begin testing DCA on patients living with cancer. Results with regards to the safety and efficacy of treatment should be known late this year.

“If there were a magic bullet, though, it might be something like dichloroacetate, or DCA…”
Newsweek, January 23, 2007


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adminadmin
Member since Feb-7-07
176 posts
Mar-19-07, 07:46 PM (PST)
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28. "RE: Dr. Michelakis email for Monday, March 19th. 2007"
In response to message #26
 
LAST EDITED ON Jul-11-07 AT 00:20 AM (PST)
 
Two things:

(1) We are working on a database for inputting information on those folks who are taking DCA.

(2) About the article, we were sent this link instead of the one you mentioned above: http://www.canada.com/topics/bodyandhealth/story.html?id=22ac1a32-4a50-406b-8f24-ff50422665cb&k=54715

Heather, Forum Moderator


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Sandra
Member since Feb-27-07
434 posts
Mar-19-07, 06:22 PM (PST)
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27. "RE: newspaper article"
In response to message #24
 
Here's one from the Edmonton Sun

Patients 'desperate' for drugs buying medicine intended for animals.

http://www.edmontonsun.com/News/Alberta/2007/03/19/3782214-sun.html


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Diana
Member since Mar-22-07
5 posts
Aug-07-07, 10:56 AM (PST)
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30. "RE: Newspaper Article on Janet"
In response to message #24
 
  
My Mother, Janet Brown, passed away on July 27th, 2007 from Advanced Lung Cancer. My mother & I were the people in this Edmonton Sun Article in March 2007. Our hope was to exhibit that DCA seekers were not on the level of Moonies, but rather, truely loving and desparate families wanting to have every chance. Both myself and my sister actually purchased DCA but in the end, mom did not want to try it. She did participated in 3 Palliative Care Chemo's and she lived 1 full year after her original doctor told her to "why torture yourself with chemo", ... "Just enjoy your last two months". Mom didn't listen and went to someone else. She saw her 70th birthday and her 3rd grandchild.

If there ever was a cure for cancer, do you think that they would really let us know? I don't.

My website in program.
http://janet-mary-brown.memory-of.com/


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Sandra
Member since Feb-27-07
434 posts
Aug-07-07, 05:15 PM (PST)
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31. "RE: Newspaper Article on Janet"
In response to message #30
 
Diana,

I'm sooo sorry for the loss of your mom... My heart goes out to you and your family.

Take care, hugs,
Sandra


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adminadmin
Member since Feb-7-07
176 posts
Aug-07-07, 08:54 PM (PST)
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32. "RE: Newspaper Article on Janet"
In response to message #30
 
Diana,

Your family and you are in my thoughts. I am glad your mother lived well beyond the doctor's forecast, good for her! Thank you for being a part of our forum here. Please take care of yourself and feel free to stay in touch.

Heather, Forum Moderator


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