#53921 07-11-2007 04:26 AM | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | moved from the Currently in Treatment thread: [quote]Kim P Member Member # 4466 posted July 11, 2007 11:17 AM i just read a whole bunch of stuff about a hospital in beijing that is curing patients with advance head and neck cancers. one guy was Richard Weissenborn and there also treating other cancers too with this GENDICINE. I found a whole bunch of contact info on the doctor doing it hes from john hopkins DR LI DINGGANG. well i hope this helps someone on here. -------------------- KIM P Posts: 3 | From: MICHIGAN | Registered: Jun 2007 | IP: Logged[/quote]Kim -- An article about the Chinese company that developed Gendicine was in the July 5 Washington Post. The drug, a gene-therapy treatment, is at the center of an intellectual property dispute, with a US drug company contending that, according to the article, "the Chinese drug is basically stolen property, rushed to market with inadequate testing and in violation of patent rights." The head of the Chinese company, a former researcher at UCLA, responds that the drug "is the latest accomplishment of Chinese genetic engineering, built on information publicly available in medical literature." Studies on the drug have so far been published only in Chinese-language medical literature. The director of the hospital where the treatment is offered, Li Dinggang, a former researcher at Johns Hopkins medical school, is quoted as saying that "no one can guarantee anything" -- patients, he says, come to his hospital when other options have been exhausted and their cancer is advanced. According to the Post, Weissenborn, who is from Houston, began treatment in Beijing last fall for cancer that had spread from his tongue to his lymph nodes and throat. Initial scans after treatment were clear, the article says, but the last paragraph notes that when he returned to Beijing for a checkup in March, it was found that his cancer had returned. -- 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.
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#53922 07-11-2007 09:52 AM | Joined: Aug 2006 Posts: 199 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Aug 2006 Posts: 199 | I think I'd be very wary of a drug "approved" in China after all the recent issues with Chinese imports (dog food, toothpaste, cough syrup, etc) and the recent execution of the former head of the food and drug safety agency.... who knows what side effects and other issues could surface...
Ginny M. SCC of Left lateral tongue Dx 04/06,Surgery MDACC 05/11/06: Partial glossectomy with selective neck dissection. T1N0M0 - no radiation. Phase III clinical trial ("EPOC" trial)04/07 thru 04/08 because tests showed a 65% chance of recurrence. 10 Year Survivor!
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#53923 07-11-2007 10:56 AM | Joined: Jun 2007 Posts: 33 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jun 2007 Posts: 33 | i just found a clinic in the bahamas that does the gendicine therapy.
KIM P
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#53924 07-11-2007 02:30 PM | 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 | Just so we keep perspective here, while this may or may not be a great thing, we have no idea LONG TERM what the implications and efficacy of the treatment are.
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. | | |
#53925 07-11-2007 10:51 PM | Joined: Jun 2007 Posts: 33 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jun 2007 Posts: 33 | i am sorry i did not mean to upset anyone i just found that yesterdaY. and it sounded good. a treatment when all else fails it just terrible that you have to go to china or the bahammas and get it. i don`t know about the bahamma one that might be a shady deal there. its a doctor kevin p. bethel that does it in the bahammas does anyone know how to find out about him? and the clinic there in the bahammas thats closer then china.
KIM P
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#53926 07-12-2007 02:25 PM | 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 | Everyone wants the silver bullet that does it all without side effects. When a US trial says it works, I'm all for it. Or if I have run out of options here, I have tried what we do have to work with, without complete resolution, and I feel that I still have good quality of life possible - but the docs are telling me I am not going to make it, I would consider something (not a clinic in Mexico) that had good science behind it but was not yet approved here.
It is not inconceivable that in the next ten years because of the myopic perspective our government has taken on stem cells etc. that many new things are going to show promise overseas before they are looked at here. As this plays out in the future, my personal (not necessarily the foundation's) opinions may change.
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. | | |
#53927 07-12-2007 03:37 PM | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | Quick clarification, for accuracy's sake: Most, but not all, of the studies of Gendicine have been published only in Chinese-language medical literature. The journal Human Gene Therapy published a study, in English, in September 2005 (available here -- click on the full text PDF link on the right for the whole thing). The study's author, Dr. Zhaohui Peng, is the head of the company that developed the drug (the former UCLA researcher mentioned above). Another English-language study -- of Gendicine's effect on one patient with a form of liver cancer -- was published that same month in Gut, the journal of the British Society of Gastroenterology. -- 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.
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#53928 07-12-2007 04:41 PM | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 666 | Remember Avandia? At one point this was in the race for SCC treatment/chemoprotection. This was not a new drug and many people have taken it you would have expected that is should have been safe! This is a big problem with a lot of chemoprotectants. Pretty much any drug has side effects, ultimately this depends on the risk vs beenefit. For that you either want old drugs that have been around for a long time and/or large and long term studies. (The effects if they exist at all unlikely to be huge). Unless one NEEDS drugs for a good reason, stay away from them, it still is not candy. In that respect I find the drug commercials unbelievable. The better a drug/treatment is established with documented trials the more you can believe it. This does not necessarily mean a US trial (in my view ... the funding of the FDA being one reason). But it is fair to say that even if stuff was not developed here, it will get here simply because here is a huge market that no sane pharmceutical industry will ignore. There are exception to this for political/religious reasons (stem cells amongst others) or there are simply too few cases. The other problem is that unless a drug is approved for a specific use the insurance will not pay for it, example being Celebrex as an adjuvant for SCC (radiosensitizer/chemoprotectant). This is currently being studied (Phase I believe). You can argue that this is too soon to be used. However, I would be really very apprehensive to leave a developed country to get a poorly documented, not regulated treatment for which the claims do not have be related to fact and which you have to pay yourself. BTW I am not xenophobic. If the treatment fails and the patient dies.... would this be made public here, or would this just end up on a website? On the other hand remember the gene therapy death at UPenn in 1999?
Markus
Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
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#53929 07-13-2007 01:39 AM | Joined: Jun 2007 Posts: 33 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jun 2007 Posts: 33 | i would not just jump on a plane and fly to china either but i just wish the fda would study things more closly when they seem to be working there are 5000 people getting treated with that gendicine from the us, and the cost is 20,000.00 per treatment thats alot of money leaving this country and going over there.but if they tell you you have no chance of survival you become desperate and if this stuff is not for real and they are lieing about its affects then the us could expose it. and brian whats wrong with mexico? is there bad things happening over there? what do you think about the clinic in the bahammas is that a shady place to?
KIM P
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#53930 07-13-2007 03:01 AM | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | OP "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | Gene therapy is being tested in the US, but very carefully because of some well-publicized adverse reactions. Markus mentions the case of a teenager with a rare genetic disorder who received an experimental gene therapy at the University of Pennsylvania in 1999 and died four days later. In 2002 a worldwide clinical trial of gene therapy for children with "bubble boy" disease (born without a functioning immune system) ended after a boy in France developed an illness similar to leukemia; two other French children came down with the same ailment over the next three years, and one died. On a happier note, scientists from the National Cancer Institute reported last September of using gene therapy to successfully treat advanced melanoma in two patients (though the treatment failed in 15 other patients in the study). For those of you with access to Lexis/Nexis or Factiva, an article in the Los Angeles Times on Aug. 28, 2006, provided a thorough overview of gene therapy. A short sidebar noted the promise of gene therapy in treating cancer and cited Advexin, a drug using the same p53 gene that is in Gendicine. Advexin was developed by Introgen Therapeutics of Austin, Texas -- the same company that says the Chinese developers of Gendicine basically stole its technology and rushed it to market (an allegation the Chinese deny). Introgen is working with Colgate-Palmolive to incorporate gene therapy into mouthwashes and gels to treat or prevent oral cancer, the sidebar says. (MD Anderson is currently conducting a clinical trial of a p53 oral rinse for people with dysplasia or SCC in situ.) If you go to the search engine for the main OCF site (just click on the Search link at the bottom of these pages) and search for Advexin, you'll get five pages of results. According to information provided by the company, "the FDA has selected Advexin for its fast track program to fill an unmet medical need and has designated Advexin for orphan drug use for recurrent head and neck cancer." So, Kim, things may be moving more slowly than we all would like, but there is certainly no lack of interest by US researchers in gene therapy. -- 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.
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