Advice for Burzynski Patients

Based on the over 500 stories we’ve compiled and discussions with former patients who claim they have been wronged, if cancer patients still truly, truly believe that the Burzynski Clinic offers them their only hope, we encourage them to take the following protective measures for their and their families’ sakes:

1) If you are a cancer patient but do not have a brain tumor, YOU ARE NOT ELIGIBLE FOR ANTINEOPLASTON TRIALS. Patients like Kathy B. (breast cancer) get to the clinic, go through consultation with physicians believing that they will be put on antineoplastons, and as soon as they pay that massive deposit, they learn that they will be on chemotherapy. Don’t be fooled. Almost all of Burzynski’s patients are on conventional chemotherapy (though they are given it off label). Watch as Burzynski’s son and heir apparent does not tell Kathy that she is not eligible for the treatment she thinks she is paying for. Further, the antineoplaston treatments are on hold and unlikely to be restarted. According to an SEC filing, the drug may have killed a child. Additionally, in December 2013, the FDA issued warning letters to Burzynski in his capacity as investigator and to his Institutional Review Board.

2) If you end up on the “gene-targeted therapy,” you will be receiving cocktails of various chemotherapies that have not been tested with one another for safety and which in all probability have not been demonstrated to be effective on your type of cancer. This is why so many doctors refuse to participate. They consider these weird, untested combinations to be unethical and expose their patients to an unacceptable risk.

3) You do not have to purchase Burzynski’s medications in house, even the phenylbutyrate capsules, in his in-house pharmacy. An equivalent is available through Ucyclyd Pharma in Hunt Valley, USA. (You will notice that the FDA required product description on Burzynski’s AmPolGen site is identical to the NIH’s description of the drug sold by Ucycld (contact information available on that sheet).

4) Get everything in writing. Do not accept verbal agreements. Do not allow what happened to Denise D. to happen to you.

5) Demand and keep a running copy of itemized charges. Do not ever leave the office without the most recent one. Save them all.

6) Keep copies of every communication, brochure, email, and interaction that you have with the clinic.

7) Tell the clinic staff that you are going to MAKE AN AUDIO RECORDING of all dealings that you have with them. (You must disclose the fact you are recording to conform to all applicable state and federal recording laws, especially when when you are communicating over the phone in between states.) Then make those recordings, especially when you are in consultation with the doctors and ABOVE ALL when you are meeting with the staff who deal with patient accounts and billing. Don’t allow what happened to Kathy B. to happen to you. When you call the clinic, be sure to mark down the time and the fact that YOU initiated the call.

8) Burzynski’s patients need a doctor back home who is willing to monitor the patient’s progress. Any MD can do this, however only an ONCOLOGIST can give you a worthwhile second opinion. Have all of your scans interpreted independently by a completely independent radiologist, oncologist, or pediatric neuro-radiologist (whichever is most appropriate to your particular condition). In the occasion that the Burzynski Clinic and the local MD/radiologist’s interpretations conflict, GET A THIRD OPINION rather than merely accept the one that makes you happier.

8) If you are told that worsening symptoms are signs of getting better, GET A SECOND OPINION. This site has endless accounts of patients believing that worsening symptoms are signs of getting better, and the patient declines and dies. Some patients actually believe that the tumor is “getting better so fast that it’s killing them.” See the cases of Evan W., Justin B., Georgia M., Cody G.,  Leslie S., Domenica P., Chase S.,  Kiwi L.,  John D., Leo D., and Edward P.

9) A related point, if you are told that a solid tumor is “breaking down on the inside” or that a cyst is opening in the middle, what is being described is most likely ischemia, tumor necrosis that occurs when the tumor has outgrown its blood supply. It is far more likely that this is an indicator that the tumor is growing than it is that the tumor is “breaking up.” See the case of poor Amelia S., a child with a brain tumor whose parents were fed this line exactly. She died a month later.