The National Center for Complementary and Alternative Medicine (NCCAM) has a mandate from the US Congress to investigate methods that are generally not accepted by the scientific medical community. In so doing, it has broad options as to which of hundreds of methods to study, and under which conditions. The NCCAM has chosen as one of its studies the protocol of Nicholas Gonzalez, a physician in New York City who claims that his method of special diet, supplements, and coffee enemas has resulted in pancreatic cancer patients living longer than normally expected. The NCCAM and the implementing institution, Columbia University, in sponsoring the study, lend an air of legitimacy to the protocol, which is recognized as ineffective by most oncologists. The physician investigators, in not giving patients informed opinion on the protocol background and the plausibility of its effectiveness, divert patients from more plausible studies and contribute to patient uncertainty and emotional distress.
While the untimely death of a loved one is not a unique circumstance, I hope that the following account of my recent experience with cancer, which involved both a highly regarded medical institution and an “alternative” medical protocol, will inform others and be of some benefit to readers.
In 2002, I was pursuing a PhD in mathematics at the City University of New York. On March 26, a close friend, the 46-year-old father of two boys, one of whom was my son’s best friend, discovered that he had stage IV pancreatic cancer. I, along with other friends and relatives, tried to help him and his wife get good medical advice, and I decided to devote my time to researching treatment of the illness.
His first scan had been at New York Hospital, where a small cyst was found on the tail of his pancreas. Exploratory surgery was recommended. The surgeon chosen by my friend was John Chabot MD, of Columbia Presbyterian Hospital, who has an outstanding reputation.
Every year, approximately 30 000 people are diagnosed with pancreatic cancer, and every year approximately 30 000 die. Many of them die within the same year. When my friend received the bad news that his cyst was, in fact, a cancer, that it had metastasized, and that no standard cure for his disease was yet available, we began to look for clinical trials that would give him the best possible chance of prolonging his life.
Initially, my friend consulted with various doctors in New York, including another highly regarded surgeon, Murray F. Brennan, FACS, at Memorial Sloan Kettering, who agreed that further surgery was not indicated. Dr O’Reilly, an oncologist at the same hospital, offered grim statistics: while a small percentage of patients (10%40%, depending on whom you ask) on chemotherapy achieve remissions that last 6 months to a year, ultimately metastasized pancreatic cancer returns and progresses.
My friend’s wife was a believer in homeopathic medicine. She and others in her community suggested that he look into a protocol run by Nicholas Gonzalez, MD, who advocates vitamins, enzymes, and coffee enemas as a possible cure for cancer. Dr Gonzalez claims that some patients of his lived up to 2 years after this same diagnosis. His protocol was being funded by the National Institutes of Health (NIH) and the National Center for Complementary and Alternative Medicine (NCCAM) and implemented at Columbia Presbyterian. My friend’s surgeon was one of the investigators.
While I broadened my inquiries about possible clinical trials, my friend decided that the Gonzalez protocol seemed to offer the most hope for survival. I had heard nothing about the doctor, so I had no opinion. My friend arranged to meet with Dr Gonzalez during the 2 weeks that followed his recovery from surgery to determine whether or not he was eligible for the trial. He was encouraged when he was found to be acceptable. Dr Gonzalez told him that in order to meet the criteria one had to be still strong enough to follow an arduous regimen: 150 vitamin and enzyme tablets and capsules, along with 1 to 2 coffee enemas daily for 16 days, followed by 5 days of rest. Diet was strictly controlled. Meats and most fats were eliminated for the 16 “on” days. During the “resting” days certain foods (strawberries and cream or specific oils, for example) were permitted, depending on Dr Gonzalez’s classification system. The trial investigator, Dr Chabot, advised him of this and other options. He also assured him that he could start the “alternative” protocol and drop out if he wanted to try chemotherapy.
By this time we had ascertained that standard combination chemotherapy involved gerncitabine and other drugs, and that there were no reports of any one protocol showing decided advantages over any other. My friend decided to try the Gonzalez protocol first, as one was no longer eligible for it if one had already had chemotherapy. He was anxious to begin some form of treatment and not lose other options.
I had contacted other well-known institutions: Dana Farber, the M. D. Anderson Clinic, the Mayo Clinic, and the University of California, San Francisco, among others. By April 8 I had found that at Johns Hopkins in Baltimore, patients were being accrued to start a Phase II trial for a vaccine targeting metastatic pancreatic cancer. The results from the Phase I trial of the vaccine looked promising, but Phase II was not to start until May. I accepted an invitation to visit the research facility, which I was to do on April 18, bringing a specimen of my friend’s tumor to the laboratory.
During this time I also investigated the Gonzalez protocol. I had obtained a copy of an article by Michael Specter in the February 5, 2001, issue of the New Yorker magazine. The article seemed to indicate that although this protocol had been funded by the NIH, was some debate as to its value by physicians at Columbia Presbyterian. I was disturbed to read that Dr Gonzalez had been successfully sued and that New York State had made attempts to remove his license. On Monday, April 14, I placed a call to Dr Chabot’s office. It was not returned. I proceeded to place a call to every physician mentioned in the article, and also spoke to Michael Specter.
On April 15 I placed two calls to Pierre Guesry, PhD, an advocate for Dr Gonzalez, at his office at the Centre des Researches Scientifiques for the Nestle Company near Lausanne, Switzerland. He said he thought that Dr Gonzalez’s results were extraordinary and that experiments were being conducted on ferrets at the University of Nebraska in order to study them further. When I asked him under whose direction, he said that the information was confidential, and hurried off the telephone.
Dr Gonzalez advised my friend to have fillings from his teeth removed by a dentist in Connecticut, which he did on April 16. He had just begun the vitamin and enzyme protocol, which was very time-consuming. He had also contacted doctors at Johns Hopkins, but decided not to accompany me on my visit. He planned to go there nearer the time when the vaccine trial started. His wife was by that time already extremely busy obtaining all the pills and foods that were required for the Gonzalez regimen.
That same day, I called Karen Antman, MD, head of oncology at Columbia Presbyterian, whom I had met when I was diagnosed with breast cancer. She had given me excellent advice at the time. This time she said that my friend had been offered many different treatment options, and had chosen the Gonzalez one. She encouraged me to do further research.
On April 17 I once again called Dr Chabot’s office and spoke with his secretary, saying that I had some questions about the Gonzalez trial. I was informed that I should speak to Michelle Gabay, the nurse who was running the protocol, but that she would not be able to return my call until the following day. As I was to be in Baltimore, it would be a few more days until we spoke. When we did, she had no answers to my questions about Gonzalez protocol results.
By April 17 I succeeded in contacting Tony Hollingsworth, PhD, the recipient of the grant for cancer research at the University of Nebraska. at their facility. He informed me that to his knowledge there were no animal models for pancreatic cancer under study at the University of Nebraska or anywhere else. I also spoke with other physicians—one at Columbia Presbyterian, William Sherman, MD, who expressed great skepticism about the Gonzalez protocol.
My friend was determined to try as hard as he could to maintain the regimen, which is extremely difficult. He had been told that pain might be an indication that the tumors were being dissolved, and that he could expect weight loss as he was detoxifying his body. I saw him on April 26, when he told me that he was in more pain. It was obvious that he had lost a significant amount of weight. In the next few weeks he was to describe himself to his mother as looking like “a concentration camp victim from Auschwitz.”
He was having difficulty sleeping. Whether this was because of coffee enema stimulation or because he was experiencing ever-increasing pain and stress, I do not know. I told him that I had been impressed by what I had learned about Hopkins. He was interested, but said that he was going to stick with this regimen until the next appointment, when he would get the results. He was determined to give it his utmost effort.
I told him that I was going to attend the annual conference of the American Society of Clinical Oncology (ASCO) and would report on other options to him. Once at ASCO, I learned quickly and definitively that the Gonzalez protocol was a fraud; no mainstream doctors believed it was anything else and they were surprised that anyone with education would be on it.
Despite this, I had spoken with Dr Chabot and asked him to speak with my friend about his appointment being moved ahead, as he was not doing well. Dr Chabot said that I was free to speak to my friend, if I wished, and said his secretary took care of appointments.
During the following month, my friend lost 3040 pounds and became so weak that he could no longer walk his dog around the block. The pain was becoming unbearable, and he was eager to be evaluated and have another scan.
I went to the hospital on May 30 to ascertain when he would be scanned. We were eager for the scan as he needed explanation for his symptoms, and to make the next treatment decision. The sooner he got chemotherapy, the better were his chances at achieving a remission, and he had already lost 45 days.
My friend was not scanned until Sunday, June 2, when he received bad news. The tumors had progressed. The Gonzalez regimen had not worked.
On Monday he made an urgent appointment with Dr Sherman, the oncologist at Columbia Presbyterian, whom I had spoken with and recommended.
By this time my friend was extremely thin and weak. He was given prescriptions for pain medication and chemotherapy, and scheduled for additional intravenous therapy the following week.
At one point I said to him, “You are not ever going to feel as bad as you felt last month (while on the Gonzalez protocol), from here on,” and he said, “I think you’re right.” He felt better in June. I continued to look for hope, attending a conference in Houston given by the M. D. Anderson Tumor Institute. Although my friend started eating regular food and sipping concentrated food supplements, he was unable to regain weight and did not show an obvious early response to his 3 chemotherapy treatments during the month of June.
Over the Fourth of July weekend, between chemotherapies, his lungs filled with fluid. He was rushed to a hospital near his home and then transferred to Columbia Presbyterian hospital on the following Monday. Over the course of that month he stabilized somewhat, but he continued to weaken. He went home on Friday, July 26, intending to talk to his doctor, who had been away that week. He did not live to have the conversation. During that week, he also asked me if he could try the vaccine on a compassionate basis, but I had been told by the doctors at Hopkins that he was no longer eligible, and that the trial there had been delayed.
By Sunday, hospice care was called in and he died a few days later, in the early morning of August 1, 2002. That he died was not surprising, as pancreatic cancer is a terminal disease. That he died as quickly and as brutally as he did, however, is tragic.
The care he received did not reflect the reputation of the institution he turned to. Specifically, neither the surgeon nor the medical oncologist involved in the Gonzalez study told the full truth about Dr Gonzalez or his therapy. The information given was “neutral”; the protocol being described as neither good nor bad, reasonable nor unreasonable, or whether positive results were plausible or not. If the surgeon had such information, he did not share it, referring us to the protocol nurse, who could not answer penetrating questions. Only Dr Sherman, the oncologist we consulted, gave us usable information and confirmed what I had found on my own.
This situation irretrievably affected my friend’s access to treatment options, the quality of his life in his last days, and his ability to enjoy his remaining time with family and friends. My friend was not in denial, and did not go in search of false hope. He did not seek out Dr Gonzalez because he was unwilling to confront the possibility that treatment might not work and might have side effects. A graduate of Harvard, he was an intelligent and courageous individual who believed what that he would get honest answers when he went to the mainstream medical community.
He was an artist—a painter and a sculptor—and he had little scientific knowledge. When Dr Chabot was neutral about the Gonzalez protocol, and when Dr Antman said nothing adverse about it, my friend assumed that they must genuinely believe that the treatment could work.
We had many conversations about treatment options, and he intended to meet with the doctors at Johns Hopkins, but the Gonzalez protocol quickly overwhelmed him; first by being impossibly time-consuming and then by being so physically debilitating. Had he realized this in early April, he would have had a real chance to examine his options. But once the decision was made to begin the Gonzalez protocol, with the apparent support of those involved in his care at Columbia Presbyterian, he became committed to it.
By remaining neutral about the Gonzalez regimen, physicians at Columbia Presbyterian who place patients in this trial effectively preclude them from starting other options, because of the demands it places on patients and their families. If physicians believe they are truly being neutral by not fully explaining the Gonzalez protocol’s nature to cancer patients, it is they who are in denial.
This article was published in the Fall-Winter 2003-2004 issue of The Scientific Review of Alternative Medicine. At the time it was written, Susan Gurney was a Ph.D. candidate in the mathematics department of the City University of New York. The NCCAM-funded study to which this article refers demonstrated that Gonzalez’s treatment did not prolong survival and lowered quality of life. Gonzalez died in 2015.