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Omega3
Member since Feb-15-07
15 posts
Mar-16-07, 08:22 PM (PST)
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"Online DCA Patient research Database Formation"
 
   After reading the post by Dr. Strum an extremely well respected researcher and clinician: I got to thinking that his suggestion that we make the most use of this Internet community which has been forming of the last few months. We should organize a section of this DCA site into an online study database. I think it would severe a greater purpose if we had all new users of DCA register and answer a medical intake form consistent with what is done in standardized studies. The data would be compiled in flow sheet available for all members to read. With conclusion to treatment being formed after periodic evolution of patient repots. The DCA users will be ask to fill out follow up forms every 3 or 4 weeks notating adverse effects, blood test results, imaging studies, dosages. Administration timing, DCA source, and quality of life questions etc.

This way we may be able to make a contribution to the welfare of others and seek true understanding on whether this drug DCA works. The results from any trials done by the UofA will take 2 years from start up date. If done analytically with no predetermined agenda I think this board could become a powerful research tool instead of a group of antidotal reports, which is much less meaningful. At some point after enough information can be collected to even be published. My wish is we can a group of intelligent very motivated individuals that we have gathered on this board and work collectively to produce some meaningful information be it positive or negative on DCA which has the potential to open up a whole new class of anticancer drugs based on the inhibition of tumor metabolism.
I will gladly donate whatever time it takes to get the medical intake forms developed but I will need help since my computer skills are limited I know there others whom have discussed this if we can come together this could be powerful way of helping everyone not feel so alone.

I would like to try and get a list of people willing to help and what expertise they may have to assist in this endeavor.


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Sandra
Member since Feb-27-07
380 posts
Mar-16-07, 08:34 PM (PST)
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1. "RE: Online DCA Patient research Database Formation"
In response to message #0
 
Hi Omega3

Susan1 is heading that up and already has a rough one set up. So excited that you're on board with this. So far I was their only patient!


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squareb
Member since Feb-26-07
50 posts
Mar-17-07, 01:23 AM (PST)
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2. "RE: Online DCA Patient research Database Formation"
In response to message #1
 
   I would be willing to participate in this study. I assume the participants would remain anonymous.


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Sandra
Member since Feb-27-07
380 posts
Mar-17-07, 01:48 AM (PST)
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3. "RE: Online DCA Patient research Database Formation"
In response to message #0
 
I PM'd you Omega3, with contact information for Susan and myself. Please email one or both of us, and Squareb please email us also.
Thanks,
Sandra


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eitek1
Member since Feb-17-07
13 posts
Mar-17-07, 12:04 PM (PST)
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4. "RE: Online DCA Patient research Database Formation"
In response to message #3
 
   I already emailed Susan. I am a computer nerd and also volunteer any time or resources at my disposal. Here I am, use me as you will.
My email is eitek1@hotmail.com


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Machado
unregistered user
Mar-17-07, 12:19 PM (PST)
 
5. "RE: Online DCA Patient research Database Formation"
In response to message #0
 
   Hello,

I've followed all your efforts since DCA news appeared with great interest. I'm willing to help in anyway i can. I'm a web developer pretty confortable with web applications, databases and general web interfaces so if there is anything you need to get this started, do contact me.

Regards,
Machado


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Dave
Member since Mar-5-07
33 posts
Mar-17-07, 02:04 PM (PST)
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6. "RE: Online DCA Patient research Database Formation"
In response to message #0
 
   I'll supply the coffee and donuts...Oops I mean green tea and raspberries (ellagic acid - look it up). I do have some time on my hands. If you need some grunt work done let me know. I can work my way around spreadsheets and databases. I tend to do my best work out of the limelight.


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Omega3
Member since Feb-15-07
15 posts
Mar-17-07, 09:19 PM (PST)
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7. "RE: Online DCA Patient research Database Formation"
In response to message #6
 
   I can be reached at Omega3MD@gmail.com

I know that Sandra and Susan1 have started something. If I can be emailed and told what so far has been done then I maybe able to have some input. I hope by doing this with a more scientific approach we can glean a better picture sooner concerning the efficacy of DCA use on humans.


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Sandra
Member since Feb-27-07
380 posts
Mar-17-07, 09:39 PM (PST)
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8. "RE: Online DCA Patient research Database Formation"
In response to message #7
 
Awesome! I've been so busy following the newspaper stuff (it's like a war zone in Edmonton right now) that I missed all these posts 'til now! This is sooo exciting!


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susan1
Member since Mar-11-07
11 posts
Mar-18-07, 00:17 AM (PST)
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9. "RE: Online DCA Patient research Database Formation"
In response to message #8
 
   I agree. I am excited at this response from all of you! Sandra put it so beautifully in an email she sent to me; she spoke of how we are like survivors in a plane crash all reaching out to help each other and how inspiring it is to have front row seats in what may be the cure for cancer.

Please be patient. There are several members of this site already working on putting together a database that will help all of us track how effective DCA is in treating cancer. And we certainly need help - at this point the challenge is to figure how to coordinate our online volunteers - a community of very smart people with big hearts. The programmer who set up this website has volunteered to help, so for those of you with database and computer skills I think it makes sense to form a technical team to help us with ideas on the design of the database. If you are interested in being part of the technical team can you please contact me.

And as always, the most important part of this effort is the participation of the pioneers who are using DCA. Please consider joining our study. Be assured that the database that we set up will maintain your privacy. Some of the people working on this effort will be participating in the study and I believe that will help insure that it serves both the interests of people using DCA and of those people with advanced cancer who are considering using DCA.

If you want to join our effort, please contact me at:
hirasawa@comcast.net

Thank you,
Susan


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Diana
unregistered user
Mar-19-07, 03:42 AM (PST)
 
13. "RE: Online DCA Patient research Database Formation"
In response to message #8
 
   Sandra, are there a lot of articles? I had a link to one.
The media attention, negative or positive, the more likely that Health Canada will take notice and try to figure out how to fast track DCAna.
g_generis@hotmail.com.


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Jesus Bortoni
Member since Feb-8-07
7 posts
Mar-18-07, 04:50 AM (PST)
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10. "RE: Online DCA Patient research Database Formation"
In response to message #0
 
   The Marine Corp taught me never to volunteer for anything but this one is well worth the effort. Though I am unable to offer much in the way of computer skills, I can't sit back and watch everyone else
raise their hand. Especially since Monday morning I get the results of a PET/CT scan to confirm or negate any fears my wife and I are going through re:cancer.
Omega3 and SquareB, I'm in. I will write and see what I can provide that will be useful.
Smper Fi.


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Sandra
Member since Feb-27-07
380 posts
Mar-18-07, 02:53 PM (PST)
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11. "RE: Online DCA Patient research Database Formation"
In response to message #10
 
The Edmonton Journal's News for 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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RJ
unregistered user
Mar-18-07, 03:33 PM (PST)
 
12. "RE: Online DCA Patient research Database Formation"
In response to message #11
 
   so what is the point here, dangerous? Approved Chemo drugs are damaging also, if not more so than DCA. Yes caution should be a major issue, but that also is where doctors Should at the very least try to speed up the process. after all it isn't like this DCA has NEVER been used on humans before. ITS ALL ABOUT MONEY!!!!


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Diana
unregistered user
Mar-19-07, 03:53 AM (PST)
 
14. "RE: DCA study on Geriatric Patients."
In response to message #11
 
   Hi Sandra,

Thank you for that link, as it is good to know its really being tested in other illness, such as geriatric cardio-patients in Edmonton. Having looked up DCA research, its difficult to find these studies. Is Jim going to go on the radio?

I forget if this has come up yet. Is DCA illegal to sell through pharmacies in Canada for off-label? Is there a risk that the Vet DCA supply will disappear? I ask that b/c if I need more, I hate to see this source eliminated. It seems from this article that Cardio is planning on supplying it on a consistent basis.


Diana


>The Edmonton Journal's News for 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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susan1
Member since Mar-11-07
11 posts
Mar-19-07, 05:05 PM (PST)
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15. "RE: Online DCA Patient research Database Formation"
In response to message #11
 
   This article and the whole controversy about creating an online database are eye-opening. I think that all of us involved in the effort to set up a database realize that it will not be perfect. We are not in the controlled setting of a clinical trial, however we are a group of people who have made reasonable decisions about a treatment option and we recognize that our chances of success are greatly increased if we can share information.

Those of us with advanced cancer live in a very different world from those people, however well-intentioned, who are warning us against DCA. "Perfect" and "total control" are not a part of my life, but "hope", "determination" and "informed advocacy" are at the center of each day.
Susan


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margaret
unregistered user
Mar-19-07, 07:31 PM (PST)
 
16. "RE: Online DCA Patient research Database Formation"
In response to message #0
 
   I have been following the DCA news as well as this forum’s communication for some time now. I am impressed by the enthusiasm and grass roots approach that has evolved through its participants. I have to say, some of the most courageous and caring people I have ever met are cancer sufferers. My husband is one of these people, a survivor of metastatic colon cancer since 2003.

My husband has exhausted all conventional cancer treatments, surgeries, and some non-standard (e.g. gene therapy in Beijing, China). We have never lost hope and continue to expect to find something that will extend his life (although our doctors have told him to go home and do nothing).

Over the past four years we have acquired first hand experience with many cancer treatments and extensive disease knowledge through cancer research. We have learned the deviousness of this disease and experienced the many frustrations associated with our medical establishments with their inadequate and imperfect treatments.

My husband will try DCA (self medicated or physician guided) and will contribute the experience and all results to this forum / database. He likens himself to a
‘Flight 93’ passenger, favoring to go down fighting, while ignoring his doctors’ recommendations.

I am a business PM with many technical skills which I will bring to bare for this forum. Please advise how we can participate, and/or assist in a meaningful way. Margaret.Rattenbury@shaw.ca
"Life is mostly froth and bubble
Two stand like stone
Kindness in another's trouble
Courage in one's own"


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adminadmin
Member since Feb-7-07
117 posts
Mar-22-07, 11:13 PM (PST)
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18. "RE: Online DCA Patient research Database Formation"
In response to message #16
 
LAST EDITED ON Jul-11-07 AT 00:21 AM (PST)
 
Thank you all for offering your time & services to our forum!
I appreciate it all. I will keep your information for future reference. We are doing good now with what we have, but thank you again for the offers! Please stay in touch.

Heather, Forum Moderator


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