#75318 06-07-2008 06:05 AM | Joined: Jun 2007 Posts: 33 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2007 Posts: 33 | okay here i go again i found this it is being used in china to treat head and neck cancer is this a faker to or does this help? because there is a story of a man they cured with it and he did not have to have the surgery they also offer chemo and other stuff as well. okay i know there has been bad storys coming from china so don`t get me on that one please
KIM P
| | | | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 63 | The only things that can be considered viable to work would be a drug, protocol, or procedure that had been done by several independent institutions, in controlled studies. Do you want to do have something done that was used on a person that you might never be able to track down, described perhaps by a doctor whose credentials you cannot verify, and which has not been replicated at any other institution, and which you found anecdotally reported in some place where half truths and lies survive, as opposed to a journal in which you peers have to verify that what you say is true? I can't believe that you think any of this is productive for your friend.
Since the people on this board have had conventional treatments that are the culmination of scientific inquiry that has stood the test of many trials and been done in a critical manner, asking them about something that happened in China isn't a question that they are going to be able to answer for you.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Jun 2007 Posts: 33 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2007 Posts: 33 | brian we do not tell him about these things he is already schuled for surgery again and is doing the conventional treatment we haven`t started milking rattle snakes yet.
KIM P
| | | | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | Kim -- This was discussed last year as well. Here is that thread. -- Leslie
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
| | | | Joined: Jun 2007 Posts: 33 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2007 Posts: 33 | that was my girlfriend she must of already researched it
KIM P
| | | | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 63 | Kim, I do not mean to seem rude or to brush you off, but if you are really interested in these kinds of alternative ideas there are a ton of web sites out there where these ideas are promoted, discussed, advocated for, and even have some people posting that have tried them. As you can see we don't have a population of alternative treatment people here. For these kinds of questions I suggest that you post them on one of the other forums around the web. The OCF web site itself has information that is vetted by doctors on our science advisory board. http://www.oralcancerfoundation.org/about/advisory.htm This forum (in the background) is watched by 6 different doctors and 4 different oncology nurses, who while not contributors (liability issues and the grey area of medical advice giving) help ensure that the volunteer's advise and information here is useful, not harmful, and without correcting every little MINOR discrepancy - accurate. While I get criticized frequently for being the one that jumps into a discussion to correct people, and some like to take me to task for that... it is often because one of the background monitors has brought the thread to my attention. (Sorry David, it is not me alone that is the forum posting Nazi.) That does not even include the doctors we have here who have been patients themselves. So we run a "open public forum" that has limits. It is not a democracy, nor can people say anything they wish here. Therein (combined with the fact that some of what you are asking has already been covered before -use the search engine first) lies why you will not find many reply's to your queries. I do not know how many different ways I can state this to you. It is also why Gary uses the delete button for posters and posts when necessary. You will not find a lot of support in the forum or answers from people about this, because as a group we generally believe in engaging in treatments that have proven track records, though some of the time we wish these track records were better.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Jun 2007 Posts: 33 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jun 2007 Posts: 33 | NO BRIAN YOU ARE RIGHT I WENT THRU SOME OF THE STORIES AND READ THE PAIN AND DEPRESSION I READ ABOUT AND I COME ON HERE SPOUTING ABOUT DUMB CRAP I AM SORRY I DIDN`T THINK ABOUT THE HELL MOST EVERY ONE ON HERE HAS BEEN THRU AND I AM SORRY FOR THAT I SHOULD HAVE READ SOME STORIES FIRST I HOPE EVERYONE CAN FOREGIVE ME FOR BEING A BUTT.
KIM P
| | | | Joined: Mar 2002 Posts: 4,916 Likes: 63 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,916 Likes: 63 | No forgiveness necessary. But we remain here to answer questions that may help your friend.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | | | Joined: Dec 2009 Posts: 6 Member | Member Joined: Dec 2009 Posts: 6 | Hello All,
I went to China with my mum who had a recurrent SCC floor of mouth +lateral tongue. It was quite an experience! The hospital was quite clearly duping the poor terminally ill patients into handing over substantial amounts of money for bogus claims of a cure. They showed no compassion and would trick even parents of young children into turning up there.
Gendicine however probably does have some benefit for HNSCC, but only if it is localised and can be accessed directly. The US bio-pharm company Introgen had the same product and managed to get to stage 2 trials but failed stage 3 and the I think they have now filed for insolvency. I think they are now trying to get it trialled in EMEA.
So for my Mum ..she had about a week of Gendicine injections and her tumour did shrink, plus the infected 2 lymph nodes ended up being benign despite her oncologist being convinced they were metastasis.
We went there hoping for salvage surgery and Gendicine but when we saw the surgical site ..OMG! was like a 3rd world refugee campus ..so we fled to Adelaide Australia and mum had a complete ressection. I do know of Richard Winterborn who had some media coverage of his Gendicine treatment .. I do know that he was a real patient because my newly made friends who stayed behind while we fled gave me updates on him and he later sent me his before and after scans .. I have no idea how he is doing now.
| | | | Joined: Dec 2009 Posts: 6 Member | Member Joined: Dec 2009 Posts: 6 | Oh I forgot to add ..Gendicine was approved by the Chinese FDA despite not having any peer-peer reviews. They later shot the head of their FDA for corruption, approving drugs in exchange for money. | | |
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