#87476 01-07-2009 02:40 PM | Joined: Jan 2009 Posts: 18 Member | OP Member Joined: Jan 2009 Posts: 18 | If someone of You haerd about Antineoplaston therapy??And about Burzynski Clinic??? | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Alternative treatments are exactly that......alternative. Personally, I do not have faith in things like that. Conventional treatments are what I credit to my being here today. Everyone has their own opinions, I wont risk my life cuz of one small clinic that does things differently. To me if they have successful treatments then why arent they readily available? ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Yes I have heard of it from well meaning but stupid and gullible friends. The doctor is a total fraud, but very very clever in his misuse of the legal system and FDA arcane systems. Basically his patients DIE. For a nuanced and subtle debunking, Here is Dr Andrew Weil's far too kind expose: Over the years, Dr. Burzynski claims to have treated more than 8,000 patients, but his success rates are unknown. His Web site states only that he has helped "many" people. If antineoplaston therapy works, we should have scientific studies showing what percentage of patients treated have survived and for how long, as well as evidence showing how Dr. Burzynski's method stacks up against conventional cancer treatment. The only study I know that documents how Dr. Burzynski's patients have fared was done in Canada in 1985. It found that of 36 patients treated, 32 died without showing signs of improvements. One patient died after slight improvement, another died after being stable for a year and, at the time of the study, the other two had widespread cancer.
The cost of antineoplaston therapy at Dr. Burzynski's clinic reportedly ranges from $30,000 to $60,000 per year. After initial treatment there, patients may be able to continue therapy at home with follow up clinic visits every two months. 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: May 2008 Posts: 551 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2008 Posts: 551 | I have never heard of it, but the American Cancer Society has a web page about it: http://www.cancer.org/docroot/ETO/content/ETO_5_3X_Antineoplaston_Therapy.asp
Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08 Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016 Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
| | | | Joined: Jan 2009 Posts: 18 Member | OP Member Joined: Jan 2009 Posts: 18 | I also heard that this therapy is very very expensive,and you don't have warranty that after this therapy You will be fine.Christine You have right:)
Last edited by Magdalena; 01-07-2009 06:03 PM.
| | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | Hmm, we could set up a clinic for our own version of this sort of treatment and make some real money for OCF to fund some real research -- We would call ours Hospice, of course...
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | Joined: Jan 2013 Posts: 11 Member | Member Joined: Jan 2013 Posts: 11 | He is absolutely not a fraud!! Yes, people must pay for hi trials but that is because a trial costa over 40 million dollars which the FDA will not fund. Just as we pay for our care. His statistics are remarkable and yes, his patients die, he never claimed to be able to cure everyone. My neighbor went to him when she was 14 and she is alive today living without cancer when she was given 3 months to live.
Last edited by luvwellrx; 03-16-2013 01:41 AM. Reason: Left some info out
Caregiver to SO, Ari-52 yrs. 6/2008:Stage IV SCC BOT+MET neck HPV + 8/2008:TX TORS+RND+RAD+PEG 6/2011:Stage IV Laryngeal TX chemo+RAD he had 2 Rec to nodes in neck RX RAD 6/2012:Total Laryngectomy 9/2012: DX Hypopharyngeal cancer stage IV TX 3 Chemo,Erbitux 3/2013: MET LUNGS begins trial 3/11/13
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | But wait, as they say on TV, there is more. Not content with just being a cancer fraud, now this quack is curing old age. Yes it is remarkable that in the only confirmed study, 32 out out of his 36 patients died. Please read my post above I was pretty restrained then, and will just repeat that this doctor is a total fraud. Worse, his clinical trials are a sham that he uses to skirt around the FDA protection since his treatment does not work. 30 years of clinical trials and no proof yet. Since I wrote that post, other commentators have said it better and in more detail [quote]Trials are not designed so that they can ever answer the question of whether the real drug, namely sodium phenylbutyrate, is effective, either alone in combination, against cancer, and, if it is, against which cancers. Rather, they appear custom-designed so that Dr. Burzynski can keep administering antineoplastons (which, remember, are nothing more than the metabolic breakdown products of sodium phenylbutyrate) to patients. It�s also incredibly unethical science in that Dr. Burzynski is requiring patients to pay huge amounts of money out-of-pocket for unvalidated combinations of targeted therapies thrown together with (these days, at least) sodium phenylbutyrate and sold as �personalized gene-targeted cancer therapy.� As for his clinical trials, he has been warned by the FDA about lax Institutional Review Board procedures that fail to protect human subjects, fail to guarantee adequate informed consent, do not adequately monitor studies with ongoing reviews, and fail to report conflicts of interest of IRB members. In other words, not only does Dr. Burzynski do �personalized targeted therapy� badly; he does clinical trials badly as well. Unfortunately, it�s not even clear to me that Dr. Burzynski�s cured a single cancer. In fact, Skeptical Humanities has been tallying publicly available cases of patients who went to Burzynski and did not survive. It�s a depressing read, and these are stories we don�t see, even from much of the mainstream press. In the process, the harm he is doing is incalculable as he tarnishes the reputation of a perfectly fine experimental anticancer drug (phenylbutyrate) and the very concept of �personalized cancer therapy� with the stench of quackery. Certainly, it doesn�t help that of late he�s branched out into dubious anti-aging remedies, forming a new division of his clinic called AminoCare.
Unfortunately, what we have here is a case of crank magnetism, and the people who pay the price are the desperate patients enticed to spend tens of thousands of dollars for a combination of chemotherapy, thrown-together targeted therapies, and an orphan drug sold as something unique and brilliant. [/quote] Just another fraudlent doctor- neoplaston
Last edited by Charm2017; 03-16-2013 03:51 AM. Reason: toned it down
65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: May 2010 Posts: 638 "OCF Down Under" "Above & Beyond" Member (500+ posts) | "OCF Down Under" "Above & Beyond" Member (500+ posts) Joined: May 2010 Posts: 638 | Last time I looked, the FDA does not fund any trials - that is the responsibility of the inventor/originator. Also the Dr doesn't have any reliable statistics on treatment success - that is the whole issue!! Representatives of the clinic are well known for threatening the critics with ligitigation though, including blogs and posts such as this. Let's not tell them about Charm's day job 
Karen Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes Dx March 2010 51yrs. Unresectable. HPV+ve Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31 Chemoradiation (IMRTx35 + weekly cisplatin) Finish Aug 27 Return to work 2 years on 3 years out Aug 27 2013 NED  Still underweight
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