In the Across the World Search for Cancer Treatments,
No Guarantees

Author’s Note: I wrote most of the following in early 2007 for a magazine. I was informed in early September 2007 that the magazine would not publish the piece. I want to include this article on my website (previously HealingFocus.org and now JeannineWalston.com). The content reveals some never before information about Robert Gorter and the Medical Center of Cologne. Most of all, I want the information in this article available to those researching Robert Gorter, MD. If the content of what I’ve written helps even one person make a more informed choice, then I deem it worthwhile. Please read the entire article in full. If you know anyone in the media, please consider sending them a link to my article. Additionally, please see information entitled Ode to Ode Magazine included after this article. 

“There are no conventional treatments that I’d recommend for you right now,” my neuro-oncologist told me in January 2006. She conveyed that despite my low-grade brain tumor, I was too healthy in her estimation for conventional treatments that had side effects. The known risks did not exceed the potential benefits at that time.

Since being informed of my recurrence in February 2004, I used alternative therapies piecemealed together through various practitioners. Brain scans indicated the tumor grew slightly over two years. Tumor growth, combined with my experience of feeling unhealthy, compelled me to research more comprehensive alternatives to give myself the best chance at a long life with an ongoing quality of life.

I contacted various health care consultants with expertise in brain tumors that use an evidence- based approach with their clients. These individuals are highly knowledgeable about conventional cancer care and help patients learn about the best of mainstream medicine. They also evaluate scientific evidence about experimental therapies and provide advice based on that information.

There is a population of cancer patients without mainstream treatment options. Some patients with advanced disease have exhausted conventional therapies. Others learn the risk-benefit equation does not warrant the pursuit of mainstream treatments. And some want to utilize medicine to treat the entire body, and not just the disease and symptoms.

I was told that immunotherapy, particularly in the form of dendritic cell vaccine therapy, represented one of the most promising treatments for my condition. Immunotherapies activate the immune system, which is the human body’s natural protector against disease. Although there are many immune cells, research indicates that dendritic cells initiative and control the overall immune response. Dendritic cells train T cells and their cellular subsets to recognize and attack tumor cells. T refers to thymus, which is considered the master gland of immunity. A dendritic cell vaccine provides patients with millions of their own dendritic cells to activate the immune system and fight cancerous cells.

Searching the National Institutes of Health (NIH) PubMed database, I discovered thousands of published research articles about dendritic cell vaccine therapy. Laboratory studies, case reports, and some clinical trial results associated vaccines with anti-tumor immune response, including against some brain tumors and many other types of cancer. Early phase trials in the United States tested cancer vaccines against advanced brain tumors in combination with conventional treatments.

I began exploring cancer treatments outside of the United States. Some clinics in Germany, Switzerland, and other locations offer experimental treatments such as dendritic cell vaccine therapy. These clinics reside in areas with laws not requiring traditional scientific testing and regulatory approval. Some of these clinics have treated thousands, and even tens of thousands, of cancer patients over decades.

My across the world search focused on the Medical Center of Cologne (MCC), Aeskulap Clinic, Leonardis Clinic, Lucas Clinic, Paracelsus Clinic, and a few others. I read any information I could find, including the experiences of former patients. I had email exchanges, telephone consultations, and compared treatment recommendations to therapies in the United States, Mexico, and England.

I eliminated several clinics not offering dendritic cell vaccines. Negative patient reports and impressions about the quality of care narrowed my search more. MCC in Cologne, Germany and the Aeskulap Clinic in Brunnen, Switzerland made my short list. One of my cancer consultants made a convincing argument for conducting site visits of these facilities. I did not want to spend the money, but felt strongly that an in person evaluation would allow me to make a better decision, and feel more confident about receiving treatments in a foreign land.

With fear, hope, and determination, I traveled to Europe in January 2006 for consultations with Robert Gorter, MD, PhD, of MCC, and Ben Pfiefer, MD, PhD of the Aeskulap Clinic. Both recommended treatments to repair and restore my immune system, attack the tumor, and address imbalances contributing to the disease state. Both protocols included dendritic cell vaccines, electromagnetic heat, intravenous infusions, and other therapies customized to my immune status and function.

There were also differences. Gorter added Newcastle disease virus. Pfeifer’s protocol included three weeks of Aeskulap’s detoxification program and several supplements with anti-cancer activity. Gorter suggested traveling back and forth monthly for treatments, or moving to Cologne temporarily. Pfeifer’s treatments had me in Brunnen for four to six weeks, including time in Germany for dendritic cell vaccine therapy. The Aeskulap Clinic would then ship my vaccines monthly to the United States. I also noted the respective personalities of both doctors. Gorter was eccentric. Pfeifer was measured.

I tape-recorded both consultations. I took notes. I listened to the tapes. I took more notes. My attention focused on the “success” rates. Although Gorter and Pfeifer were recommending fairly similar protocols, their efficacy rates were extremely different.

Gorter told me that 60 percent of his brain tumor patients with advanced disease experienced a partial response defined through disease shrinkage. Fifteen percent of these patients then eventually had a complete response. He clearly stated those results would be published in 2006, and that he would connect me with patients who responded to his treatments. Gorter explained he had less experience with low-grade disease, but emphasized there was consensus in the medical community that the smaller the tumor size, and the less aggressive the disease, the better. Since I had a fairly small low-grade tumor, youth, and vitality, I thought the likelihood I’d respond was higher compared to those with advanced disease.

Pfeifer did not provide any statistics about his patients’ response rates. He emphasized the goal should be to increase the length of my survival versus reducing or eradicating the tumor. He said it is much more important to hold the disease steady. He thought that his treatments would give me more time. Pfeifer conveyed that it was very unusual for patients to have treatment responses described by Gorter.

Tumor reduction. Tumor eradication. Gorter said what I wanted to hear. For those reasons and others, I chose to pursue treatments at MCC, and move my life to Cologne for six months. Staying in Cologne versus traveling back and forth would be cheaper. I also needed to get away, far away, from everything familiar to engage my healing journey on other levels. I wanted to create a new life, and find myself in the process.

I organized myself for an across the world adventure. At least that was how I was trying to view my leap into the unknown. Even though I was able to continue providing freelance writing services for some clients from Cologne, my estimated income was not enough to pay for my treatments. Gorter said the cost for my six-month treatment plan was over $35,000, for which my health insurance offered no coverage. After exhausting finances on my health care over eight years and accruing debt, I had to raise money for my treatments. I felt really uncomfortable, and even shameful, starting the fundraising process. Once it was underway, support came from many directions.

I packed up my belongings, moved most of them to a storage unit, and flew from San Francisco to Cologne. I rented an apartment, and bought a bicycle for transportation. Beginning my six- month immunotherapy protocol at MCC the middle of June, my initial treatments included biweekly hyperthermia, along with intravenous infusions of supplements, minerals, and homeopathics.

Hyperthermia exposes body tissue to high temperatures through localized, regional, or whole body treatments. Research indicates that hyperthermia activates the immune system and anti- cancer activity. Localized hyperthermia heated my tumor area with a device comprised of water and electromagnetic substances. Along with internal warming, my heart rate elevated, and I sometimes felt dizzy after treatments.

My dendritic cell vaccines were cultivated over seven days from my own blood, a process done monthly for six months, and then planned for every six months thereafter. Laboratory technology converted a specific type of immune cell called monocytes isolated from the blood into dendritic

cells. The dendritic cells were then injected into me with interferon alpha and gamma to help create an immune response. Dendritic cells use threadlike tentacles to crawl through the body seeking out disease-causing substances, and direct lymph nodes to mount an attack through activation of various T cells.

I was told an immune response through flu like symptoms after the vaccine indicated an increased potential for anti-cancer efficacy. I experienced aches throughout my body, fevers, and intense sensations around the tumor site during the twelve hours post-vaccine. Always fatigued and sometimes with headaches the next day, I needed one week to recover my stamina.

Some alternative cancer clinics perform various diagnostics to customize treatments. Gorter said he evaluated my immune system through laboratory diagnostics of my thymus and natural killer cells. My blood test results indicated my thymus and natural killer cell function needed significant support. Gorter said that all cancer patients need extra thymus support, which is why he included thymus peptides within infusions. I was also prescribed mistletoe, a parasitic plant that grows on trees with a long history of medical usage. Research indicates that mistletoe enhances natural killer cell and other T-cell functions. I injected mistletoe into my leg twice weekly— a schedule I was told to keep for five years. Sometimes swelling occurred around the injection site, and occasionally the area itched, but I did not notice other side effects.

In early August, I received Newcastle disease virus daily for two weeks, and then weekly for another four weeks. N ewcastle disease virus is a viral infection that primarily infects poultry and potentially fatal in birds. Along with causing an immune response in humans, research suggests that Newcastle targets cancer cells, replicates, and then kills the cells. Different strains of Newcastle exist to treat cancer. MCC uses their own version cultured on human cancer cells.

Between the poking, prodding, and internal assimilation of therapies, I felt weary, tired, and irritable during my first few months of treatments. I also had a rash, itchiness, and low blood pressure in late July and August. The low blood pressure continued throughout the course of my treatments. I asked my doctors to address it, but felt the responsibility always resided with me to ensure follow up. I could not always be both a patient, and an advocate for myself. This I could only see in the aftermath of my six-month protocol.

In mid-September, my treatment schedule changed from twice weekly to two to four times monthly. I began feeling more energetic than I had in several years. I continued supporting my healing through diet, meditation, exercise, acupuncture, colonics, chiropractic, and self-inquiry. I explored my self-imposed mental constructs that were not aligned with my highest state of health. I strove to create an internal dialogue of self-love, trust, and connection. I also visualized tumor cells dying.

“Remember me at your 88th birthday,” said Gorter. “I want to give you the Christmas present of a clear MRI scan.” Gorter also explained that low-grade tumors sometimes take longer to respond to immunotherapy treatments compared to advanced cancer. He then expressed confidence that my condition could be reversed with time. My hope became increasingly mixed with an expectation, and confusion about what was realistic.

In early November, my immune tests were repeated. My natural killer cell function improved, but my thymus appeared unchanged. After my last treatment, Gorter suggested I wait several weeks before having a scan. I sat with my expectations. I danced with my fear. I reminded myself it was just a test.

No tumor shrinkage was visible on my scan. According to the black and white blurry image of my brain, there were no measurable changes to my brain tumor. Along with disappointment, Gorter expressed relief that my tumor had not transformed from low to high grade, which seemed directly contrary to his previous remarks anticipating a clear scan.

I was absolutely devastated. I spent the next two days in bed. I could not get up. I did not want to get up. I felt like I had reached a dead end with nowhere to turn. In the midst of my confusion, sense of chaos, and internal reminders that progress is not always visible when progress has been gained, I began re-evaluating treatment strategies. I considered where to go next. And I thought long and hard about how I had arrived at my current destination.

According to Gorter’s statistics, less than half of his cancer patients do not have a measurable tumor response to MCC treatments. Reflecting on Gorter’s numbers, I had too many unanswered questions.

I asked Gorter once again about his 60 percent partial response and 15 percent complete response in his brain tumor patients with advanced disease. When I interviewed Gorter in January 2006, he told me that those were his patients. In December 2006, Gorter said he pools patient data with the University of Göttingen and the Institute of Tumor Therapy (ITT) in Germany, as well as the University of Vienna in Austria. He said that his brain tumor statistics came from an interim analysis of group data. However, Henrich Peters, MD, of the University of Göttingen and Thomas Nesselhut, MD, PhD of ITT reported no current or recent collaborations with Gorter, including sharing patient data for group analysis. Wolfgang Koestler, MD of the University of Vienna could not be reached for comment.

The August 2006 issue of Ode Magazine featured an article about Gorter that reported he discovered how to develop dendritic cell vaccine therapy with Peters and Koestler. According to Peters, Gorter did not participate in dendritic cell vaccine therapy development. Peters, who is now retired from the University of Göttingen and works as a consultant to ITT, discovered how to isolate monocytes from dendritic cells and cultivate vaccines in the 1990s. Gorter pays one of ITT’s laboratories to manufacture MCC patient vaccines.

Gorter stated that 60 percent of his cancer patients experience partial response, and 7 percent complete remission in an October 2006 Dutch newspaper article. He was quoted saying that he has not published his research results about cancer patient outcomes treated with MCC combination immunotherapies because he prefers to focus on patient care. Gorter said he is first a doctor, then a scientist. A February 2007 PubMed search for scientific literature authored by Gorter produced 16 published papers from 1991 to 2005, including about mistletoe, lead and

copper containing ointments, and cannabis.

The World Health Organization defines stable disease as no change in disease size for more than 3 months, and partial response as 50 percent or more reduction in the tumor size. Gorter told me in December 2006 that his parameters for partial response include both stable disease and disease shrinkage for an undefined length of time.

Gorter never gave me the name of a brain tumor patient with a partial or complete response that began MCC treatments before 2006. However, I spoke with some MCC patients, all from Gorter’s native Holland, who had measurable disease response. After receiving surgery,

radiation, and chemotherapy, in August 2006 a man with a small, advanced brain tumor began MCC treatments, and had a clear scan three months later. A man with extensive liver cancer, without conventional treatment options due to the advanced stage of his disease, started MCC treatments in September 2006 and had no cancer in a scan three months later. A man with Stage IIIB metastatic small cell lung cancer declined conventional therapies and started MCC treatments in June 2004. No longer with measurable metastatic disease, the activity in his main tumor has slowed. A woman with Stage IV breast cancer used MCC treatments since October 2004 combined with hormone therapy. Her disease progressed one year later, but after more frequent MCC treatments, her cancer size reduced by about 25 percent. Some of these individuals reported other factors that might have contributed to their disease response such as physical fitness, incorporation of a cancer diet, and other alternative therapies.

Some MCC patients who initially experience significant health improvements ultimately die of their disease. The Ode article featured the positive response to MCC treatments of a pancreatic cancer patient they called Joe. Without conventional options and extremely debilitated when he began MCC treatment in March 2006, Joe’s quality of life quickly improved and his disease markers decreased for a short period of time. Joe passed away in November.

In the aftermath of the Ode article, Americans and Canadians with advanced cancer flocked to MCC for a therapy Gorter described in the magazine as producing remission in 10 percent of 171 breast cancer patients. “No other treatment offers similar results,” Gorter said in Ode. Gorter also sent a standard email response to some people that inquired about his therapies after Ode stating, “ We have had significant responses in the treatment of patients, living with all kinds of cancers, with dendritic cell vaccinations, often in combination with hyperthermia. Also, the literature is positive in cases like yours.”

Almost all of the 15 Americans and Canadians I personally met that pursued MCC therapies after reading Ode’s article had no tumor response to Gorter’s therapies. In fact, I watched many of these people die. Due to their disease, most of them may have died anyway. However, many struggled being away from home, with physical pain in unfamiliar environments, and financial sacrifices to pay for MCC therapies averaging between $30,000 and $40,000 for six months. A few caregivers also believed that adverse effects from Gorter’s therapies accelerated their loved ones demise.

An American woman had stage 4 appendiceal cancer almost completely removed surgically in August 2006. She was told there was a 90 percent chance of recurrence without chemotherapy. As a result of her interest in immunotherapies, she consulted with Gorter who recommended MCC treatments, which she began in October. Gorter, who is not an oncologist as stated in Ode, says he incorporates chemosensitivity testing, localized chemotherapy, and laser therapy into patient protocols when appropriate. However, he did not recommend chemotherapy for her. In late November and mid-December, this woman complained to Gorter several times of “something growing” in her intestinal area. Gorter examined her twice, but did not order any diagnostic tests. With severe pain, she was hospitalized in Cologne for 5 days. She returned home to discover that after almost four months of MCC treatments, her cancer metastasized to her large and small intestines resulting in almost complete blockage. She had another surgery and chemotherapy. Her surgeon noted some tumor nodules had disappeared in parts of her colon, which he speculated could have been from MCC therapies.

After no benefits from conventional treatments over two years, an American woman with stage 4 uterine cancer began MCC treatments in September 2006. She told Gorter of a stint in her right kidney that had caused manageable bleeding previously. After one week of localized

hyperthermia and infusions, she had several emergency surgeries in a Cologne hospital for extensive clotting and bleeding appearing to result from hyperthermia. Back home, she wrote Gorter a letter describing her concerns for his therapies and inadequate patient care. With disease progression and other complications, this woman died in January.

Some cancer patients seeking dendritic cell vaccines may receive the therapy through research studies at mainstream medical centers in the United States and other parts of the world. A February 2007 search of the NIH database ClinicalTrials.gov revealed over 50 recruiting dendritic cell vaccine studies, with additional trials evaluating other types of immunotherapy vaccines. The majority of the studies are phase I and II assessing safety and tolerability. Few studies have compared conventional cancer treatments to dendritic cell vaccines. However, a phase III trial at the German Cancer Research Center and University Hospital in Mannheim suggested that standard chemotherapy for stage IV melanoma was not more effective than dendritic cell vaccine therapy.

Biotech companies, including Denderon, Northwest Biotherapeutics, and IDM, have developed dendritic cell vaccines for evaluation in cancer patients. Northwest Biotherapeutics is sponsoring a phase II trial testing a vaccine made with glioblastoma multiforme (GBM) patient’s dendritic and tumor cells building on phase I data by UCLA’s Linda Liau, MD, PhD, suggesting immune response, delayed disease growth, and increased survival time for GBM patients. Other research centers, such as Rockefeller University, are also conducting dendritic cell vaccine cancer studies.

Scientists debate the efficacy of vaccines made without tumor cells or another type of substance to instruct the dendritic cells to locate the cancer. ITT, which was one of the first clinics in the world to use dendritic cell vaccines against cancer, treats the majority of their patients with vaccines made without tumor cells. ITT says their dendritic cell vaccines are created with the patient’s own blood that contain tumor markers, which direct the dendritic cells to the cancer. Carl Figdor, PhD, of the Radboud University Medical Center in Nijmegen, Holland, advocates that vaccines that are not primed with tumor cells or derivatives such as protein, peptides, or RNA likely lack anti-cancer efficacy. Based on his own research results over the last 10 years on tumor immunology and dendritic cell vaccines, Figdor also believes Gorter makes unrealistic promises to his patients.

Private cancer clinics in Europe and other parts of the world often provide dendritic cell vaccines in combination with other types of immunotherapies, which may impact some varied response rates between facilities. ITT reported that they have treated over 2,000 cancer patients since 1999. Since 2004, ITT has presented research results in the general poster session each year at the American Society of Clinical Oncology meeting. Of note, Gorter’s name appears on ITT research abstracts from 2004 and 2005 when he worked for the Immunological Oncologic Center of Cologne, a collaborating organization with ITT.

Published results about tumor response and survival provide people affected by cancer with peer-reviewed, scientifically validated information to facilitate their treatment decision-making process. Some cancer clinics do not communicate statistics about their treatments based on their small number of patients, combined with the lack of predictability of individual patient outcomes. Response rates defined in statistics provide information about a treatment’s potential in a limited group of patients.

Tremendous variability exists between cancer clinics in Europe, and many facilities appear to offer a high quality of care. However, people in vulnerable situations seeking life-saving cancer

therapies need to know that appearances can be very deceiving. Despite asking all of the right questions during the research process, the answers can be misleading. And even with the most promising treatments, there is no way to predict the outcome for each individual. No guarantees aside, there are options for people affected by cancer.

During the research process into treatments, along with questions for doctors, patients and their loved ones might consider inquiring within about their personal values and ambitions, especially regarding treatment success. What defines treatment success? Is it disease shrinkage or eradication? Is it stable disease? Is it increasing survival time? Is it maintaining a high quality of life? Ultimately, individuals must define their own version of success.

As for my healing journey, I will continue my search with the goal of no stone unturned.

 

Ode to Ode Magazine

June 3, 2008

Since I continue to have people contact me that have read the September 2006 “Vaccine Against Cancer” by Tina Touber in Ode Magazine featuring information about Robert Gorter and the Medical Center of Cologne, I need to express the following.

As you might have read in my September 2007 blog “In the Across the World Search for Cancer Treatments, No Guarantees,” Ode’s “Vaccine Against Cancer” article contains a number of significant inaccuracies about Robert Gorter and the Medical Center of Cologne. Ode Magazine needs to issue corrections to false information in their “Vaccine Against Cancer” article.

In November 2007, I contacted Ode’s Editor-in-Chief Jurriaan Kamp by letter and followed up with two voicemail messages about inaccuracies in “Vaccine Against Cancer”. I received no response. I know other people that have also contacted Ode about the Gorter article. They, too, received no response.

It is unfortunate that the media can report whatever they choose and not be held responsible for inaccuracies. Any factual errors by the media require corrections. The public deserves this level of integrity and accountability. As a freelance writer, I understand this principle, and know from first hand experience the challenges of crafting balanced articles. I’ve also experienced editors that sometimes, and perhaps unknowingly, create hype from how they choose to frame information for readers. I also recognize that I might be criticized by varied parties, including potential employers within the media, since I’ve been very outspoken about the Ode article. My interests here are truth, justice, and not deceiving vulnerable people affected by cancer.

The following text comes from the letter I wrote to Mr. Kamp in November 2007. And if you have not already, you may wish to read my September 2007 blog “In the Across the World Search for Cancer Treatments, No Guarantees” for additional information.

I am contacting you about the Ode September 2006 article “Vaccine Against Cancer” by Tina Touber about Robert Gorter and the Medical Center of Cologne (MCC).

Ode needs to be aware of the false information in the article, especially since “Vaccine

Against Cancer” had a detrimental impact on a number of readers affected by cancer. Vulnerable and desperate patients and their loved ones have decided to pursue Gorter’s treatments based on the content of “Vaccine Against Cancer.” People affected by cancer continue to read the Ode article and contact Gorter about his treatments.

Mr. Kamp, I will be very honest with you and convey that I’ve been extremely frustrated about the content of the Ode article about Gorter. I have now moved beyond that anger and feel compassion for Ode’s intentions to spread hope into the world. With that said, the consequences of the Gorter article, especially due to the factual errors and inappropriate tone about Gorter having fantastically effective therapies for cancer, go far beyond what I think Ode is really about.

I have listed some of the inaccuracies as follows.

1. Ode wrote, “oncologist Robert Gorter.”

Correction: Robert Gorter is not an oncologist.

2. Ode wrote, “Gorter developed the cancer treatment using dendritic cells in co-operation with Professor Wolfgang Köstler of the University of Vienna in Austria and Professor Hinrich Peters of the University of Göttingen in Germany.”

Corrections: Robert Gorter did not develop dendritic cell vaccine therapy with Köstler or Peters. According to Peters, Gorter did not participate in dendritic cell vaccine development. Peters, who retired from the University of Göttingen and now consults with the Institute for Tumor Therapy (ITT), discovered how to isolate monocytes from dendritic cells and cultivate vaccines in the 1990s. Gorter pays a private laboratory to manufacture MCC patient vaccines.

3. Ode wrote, “He tested his findings in a study involving 171 women with metastasized breast cancer who had undergone many forms of chemotherapy and radiation treatment and were considered hopeless cases. Following Gorter’s treatment, about 10 percent of the patients were in remission—a surprising result in patients considered terminal. In 60 percent of the women, the treatment greatly extended and enhanced the quality of their lives although they did not recover. According to Gorter, no other treatment offers similar results.”

Corrections: Robert Gorter’s success rates communicated in Ode are unsubstantiated, and severely inflammatory. His results are not published, and he cannot produce any evidence to support such tremendous success.

4. Ode wrote, “Whether he’s in San Francisco, where he is a professor at the University of California, or one of the clinics he heads in Cape Town, Istanbul, Cologne or (shortly) Dubai and Shanghai—he is always on hand to help.”

Corrections: Robert Gorter is an associate clinical professor at the University of California at San Francisco as of May 2007. He does not have clinics in Cape Town, Istanbul, Dubai, or Shanghai.

5. Ode wrote, “Germany’s High Court in Karlsruhe ruled unanimously that qualified physicians have complete freedom to treat seriously ill patients as they see fit and that insurers must pay for the prescribed treatments.”

Corrections: Physicians in Germany do not have complete freedom to treat seriously ill patients as they see fit. Most insurers do not pay for the prescribed treatments.

6. Ode wrote, “So Joe Pacini flew from the U.S. to Germany. After a single treatment, he was able to walk a little. Two days later, he no longer needed any pain medication. On the third day, Gorter suggested they might be celebrating his 80th birthday together.”

Question and Clarification: Is it appropriate for any physician to suggest after three days of treatment that the patient might be celebrating their 80th birthday? Sadly, this patient Ode called Joe died in November 2006.

7. Ode wrote, “When, at the age of 26, he was diagnosed with an aggressive form of cancer that had spread to his stomach and lungs, he decided to heal himself.”

Question: Does Ode have any evidence that Robert Gorter indeed had cancer?