Grouppe Kurosawa: Cancer - Anna's Story (print)

Anna's Story
1.6.2005

INTRODUCTION

One night while undressing after returning late from a charity function in the Winter of 1990 I noticed what appeared as an ever so slight indentation on the upper inside of my left breast. The morning light made evident the fact that what I had seen some eight hours prior was no mirage. When after two weeks the indentation became more prominent there was no denying the obvious. I knew then without doubt, as I think I had from the very first, that it was cancer.

I knew a lot about cancer. Members of my family were engaged in research, many of their colleagues were in the medical profession and I had grown up surrounded by those within the scientific community working in this area. As a young adult I found I seldom passed up an opportunity to question individual investigators on the various particulars of this disease to which so many of my friends and loved ones had succumbed. Furthermore, my own career in higher education had brought me into close contact with some of the best minds working in the field including those on the gene mapping project itself both here and abroad. I mention this because it was from these sources that I gained a fairly accurate picture at that time of where we actually stood with respect to what was termed “the war on cancer.” While advances were being made in small, very small, increments the overall result remained much the same. The standard protocol of surgery, radiation, and chemotherapy which had been used for years was still the rule of the day and the results not much better than they had been in the preceding two decades. This knowledge, coupled with the emotional and psychological effects of witnessing too many cancer deaths perhaps too soon, ultimately resulted in a personal conviction which penetrated my being to such a degree as to become virtually inviolate. I would never submit to this protocol.

My husband was supportive of my stance as well as my decision to keep all of this from everyone including family members. The only exceptions would be those care providers which I would choose.

And so the first leg of my odyssey began.

At first I read everything I could get my hands on which dealt with breast cancer, i.e. the different types, the staging, the treatment, the progression, recurrence, and last days. I then searched all clinical trials. That was a dead end. At the time in order to be eligible for a trial one had to have gone through the regular protocol with so many rounds of chemotherapy without success. Next I turned to what has come to be known as “alternative therapies.” They seemed endless and in almost all instances were based on the theory that the immune system, when properly functioning, could eradicate any type of cancer and was designed by nature to do just that. If one had cancer it meant the immune system was deficient, usually due to years of various bad habits. This situation would have to be reversed and that would entail, depending on the particular alternative therapy, a very restricted diet of one kind or another, internal cleansings, handfuls of vitamins, minerals, enzymes, etc. in addition to various herbal formulas, teas, tinctures, poultices, and so on.

I tried them all in one form or another. As to their effect it is hard to say. The cancer was growing but very slowly. The indentation finally became a small lump which was still about the size of a lima bean having broken open slightly while vacationing in the late Fall of 1995, over five years from that first wintry night.

Never once during this whole time had I ever experienced any pain nor was I ever sick. I had completed a doctorate on schedule and was now teaching on a regular basis. I was happy and doing exactly what I had always wanted to do. For the next three years I tried as best I could to stay healthy. The lesion had opened even further but it did not seem angry in any way. Instead of a lump I now had a hole in my chest about the size of a small walnut. It oozed which meant I had to keep it cleaned and bandaged but apart from that I went about my daily business with only occasional bouts of worry and frustration. In about 1998 I came across a website that claimed to have a formula that inhibited cancer by reducing its metabolic processes. Initially the site gave the names and phone numbers of people who had used this product with apparent success. My husband and I talked to several of them and decided to give it a try. For two years it seemed to help. The lesion stayed about the same though the oozing increased. At the same time I consulted with a few practitioners of acupuncture. Once they realized the degree of my problem, however, they refused to treat me unless I would agree to have the lesion officially diagnosed. We had a personal friend in this field who would have aided me, but I did not want him to know.

By 2000 aging parents were having severe health problems. They needed a lot of attention and lived in another state. I was traveling back and forth on a regular basis and continuing to teach. The schedule was taking its toll. The lesion was becoming larger. In addition, the wives of two of our closest friends had come down with cancer. They shared their experiences with me but I never said a word about myself. I began to feel somewhat like a fraud. Neighbors who we had known for years were also falling victim to this disease. It seemed everywhere.

In the beginning of 2001 I learned from a couple that ran a Life Extension store about a woman doctor who had been treating cancer patients for years and who was not opposed to alternative therapies. I saw her, liked her. She advised my having the lesion diagnosed in order to better my chances of discovering a successful treatment. That still did not appeal to me. But in the fall of that same year, while at a party, I broke the news to one of the wives of which I have spoken. I don’t know why. Perhaps the time was right. My husband had become more and more distressed and I knew he was hoping I would consult with a specialist in the field. Within two weeks I was being examined by an oncologist at a major HMO. At first she wasn’t sure what it was. The lesion measured 5 by 5 and one half centimeters. But the results of the biopsy were quite clear - locally advanced type four adenocarcinoma of the left breast, estrogen and progesterone receptor positive with a strong Her2nu overexpression. All bloodwork was normal and the CA 15-3 marker was well within normal range also, though I was told it often is even with cancer present.

It was decided that I must begin chemotherapy immediately followed by a modified radical mastectomy after which radiation and more chemotherapy would be administered. Even with all of this the chances of recurrence due to the Her2nu oncogenic over expression were greater than 65% within three to five years. I quietly but with resolve informed my oncologist that I would never undergo chemotherapy, surgery maybe. Three surgeons examined the lesion and were of one mind. Surgery was out. The lesion was too near the sternum, they could not gain clear margins and a skin graft which would be necessary would neither hold nor heal. The blood supply to the region was insufficient. Radiation was also eliminated as a possibility. Considering these results my oncologist insisted on a schedule of chemo. I refused, indicating that I was going to seek another opinion at a major teaching hospital affiliated with a well known breast cancer center. This I did. The physician assigned to me was very kind, had read my history, asked several questions and, while agreeing that the protocol outlined by my oncologist would be his first choice, did say that I could try one of the new aromatase inhibitor drugs. The one he recommended was Letrozole (Femara). They had found that some women who were estrogen receptor positive with localized breast cancer faired quite well. If it could shrink the lesion sufficiently then I might be a viable candidate for surgery which would be my best bet. Reluctantly, my oncologist agreed. I started on Letrozole in January of 2002.

At the same time I inquired about a monoclonal antibody the FDA had approved for Her2nu overexpression. It was called Herceptin. I was told that studies showed that this drug worked synergistically in conjunction with or subsequent to chemotherapy but not by itself. Since I refused chemo the subject was dropped.

I stayed on Letrozole for over eight months with the lesion showing little improvement. The only thing I experienced was acute joint pain in my neck, shoulders and arms and severe insomnia. A second bone scan showed what was diagnosed as metastasis to the 12th rib on the left side but again all bloodwork and the CA 15-3 marker were normal. Towards the end of September, still refusing chemo, it was suggested I try another aromatase inhibitor, Arimidex. A monthly IV of Zomata, a drug for bone lesions, was also strongly recommended. Not convinced of their diagnosis of the 12th rib, I decided to hold back. After a few months on Arimidex I realized that these drugs were ineffective in my case. Knowing the patience of my oncologist was running out as were my options I decided once again to hit the internet and the medical journals and did so with an intensity heretofore unequalled.

I checked out all the clinical trials. No luck there. I personally phoned and talked to researchers who were working in the field about what was coming down the pike. Nothing really that would be of any help to me in the near future. I contacted drug companies and biotech companies all to no avail. It was during this period that I first came across the Grouppe Kurosawa website. The contents intrigued me for many reasons. I decided to e-mail Dr. Martin and did so twice. No response. At about the same time I was told of a practitioner familiar with the latest high tech experimental cancer therapies worldwide. A consultation resulted in my being sent home with a pile of information. It was suggested that I apply for acceptance to as many of these therapies as possible after which it would be determined those most likely to succeed. They included, among others, whole body hyperthermia treatments near the Italian Alps, Haifu ultrasound therapy in China, individualized vaccine therapy from South America, so on and so on, all very expensive. The one I settled on was a form of photodynamic therapy, a protocol the Russians had been using for some time supposedly with a high degree of success and which was now available in Europe. It involved the infusion of an agent which, when taken up by cancer cells and activated by certain light frequencies, resulted in the formation of singlet oxygen which in turn caused the implosion of malignant cells. As my cancer was so near the surface and an open lesion I was considered a prime candidate.

Thus, in January of 2003 I left the country for ten days to undergo this therapy. I had informed my oncologist of my decision. She was not optimistic. But I felt I had to try something. There were twelve in my group, each suffering from some form of cancer, many quite ill. We became very close during those days as one might imagine. We took care of one another, ate all our meals together, went through therapy together, and learned of one another’s personal experiences. We ranged in age from twenty two to sixty one. When it was time to leave we were given a four month supply of agent to take orally and specifications for lights that we were to use for several hours each day. We were led to believe that those who had gone before us had achieved remarkable results and that we could expect the same. This was not the case. As the weeks and months passed and as one member after another of our group reached the end, we slowly learned the truth. The Russians had been experimenting with this procedure for some years but with only a modicum of success, usually with skin cancer which had required several treatments over many months. It was a bitter pill to swallow. Now with the Summer of 2003 approaching I was back to square one, tired, despondent and not knowing where to turn.

The lesion now measured seven by seven and a half centimeters in diameter. The cancer had eaten deeper into the chest tissue and the oozing was almost continuous. I had to use several bandages a day and went through bottles of hydrogen peroxide trying to keep it clean. It had begun to bleed off and on, sometimes quite profusely. Each morning my gown was soaked even though the dressings were many layers thick. In addition, a terrible odor developed. Fear gripped me for the first time. Then one day while doing some banking I ran into a dear friend I hadn’t seen in many years. He seemed to sense that something was amiss. Before realizing it I had told him briefly of my situation. He, in turn, spoke of a physician, a nutritional oncologist, who was achieving some remarkable results with cancer patients and who had helped a colleague of his where others had given up. This doctor’s practice was about eighty miles away. At about the same time one of my group from Europe was visiting a relative not far from where I lived. We had lunch and I discovered that she had decided to go to South America to try the vaccine therapy. Since I was the one who had furnished her with information about this clinic she wanted me to come with her so we could offer each other support. My husband also wanted me to go but the price was over three times what I had spent on the European therapy and it would have meant a six month stay in a country whose language I did not speak not to mention undergoing a number of very gruesome procedures. I couldn’t face it. During that same luncheon my friend mentioned a doctor of Chinese medicine whose practice was nearby and geared mainly to breast cancer patients. I had known of him for some years and had even made an appointment to see him at one time but had to cancel. I can’t remember why nor my reason for not rescheduling.

Within two weeks I had secured appointments with both practitioners sometime around the first part of September and had taken a leave of absence from teaching. The doctor of Chinese medicine was running clinical trials at a major university on specific herbs purported to have strong anti-carcinogenic properties and was well known and respected by members of the medical establishment. Because he worked primarily with patients who had undergone the traditional protocol, I was not at all certain he would agree to treat me once he knew my position on the matter. I was wrong, although he made it quite clear that he held little hope that the herbs could effect a cure by themselves. The most I should expect realistically was containment.

By late November I had to face the fact that things were not improving. If anything they were worse. The lesion was angrier still, was becoming larger and deeper and now had developed black necrotic tissue in places. Infection had set in and I was on antibiotics and feeling not at all well. I was experiencing pain for the first time. My teaching was to resume the first of February, and I wondered if I would have the strength to see it through.

While pouring through my lecture materials one day shortly thereafter I came across the Grouppe Kurosawa essays which I had printed out over a year prior. As I reread them I began to wonder if the nutritional oncologist might help me to implement as many of the recommendations as possible having to do with cancer. He seemed interested in the essays I gave him and we decided to try some of the substances. Before we could do so, however, we needed more information which only Dr. Martin could supply which meant that I would have to try and contact him again. This time there came a reply. It was now early December 2003.

Dr. Martin informed me that the website had not been updated in some time because he had focused his attention on other projects. Consequently, in order to formulate a successful protocol for my situation he would need to obtain, assess and synthesize the latest research, especially that dealing with specific pathways. This he was willing to do on three conditions: one, that I follow his instructions; two, that I keep a journal; and three, that I provide detailed feedback on a regular basis. I agreed not knowing really what to expect but feeling thankful all the same. And that is how it began.

I managed to get through the holidays that year but my strength both physically and psychologically was ebbing. In January 2004 I had more bloodwork done. The results were not good and the cancer marker had spiked. My appointment with my regular oncologist was scheduled for the first of February. The lesion was worse than ever, ten by ten centimeters and three centimeters deep. I dreaded the meeting feeling certain she would give me an ultimatum or refuse me as a patient altogether.

I shall never forget that appointment. With my gown still closed I told her as she walked into the room that she was not going to be happy. She asked why and I explained. Then she asked to see the lesion. As I let the gown fall open she stood there staring. Slowly she put her hands to her face and turned away. I saw her body heave and heave again. She said she didn’t think she could bear it anymore. I got up, went to her and put my arms around her. There was a long silence. Then she turned and begged me to let her help me, begged me to do a few rounds of chemotherapy. She said the lesion was soon to penetrate the chest wall. I knew what that meant. With tears in my own eyes I explained that my refusal of chemotherapy was due neither to vanity nor obstinacy despite what she might think. It was something deep inside me as if the whole of my being was set against it. I told her that I would do Herceptin if she would agree. She reiterated that the data was quite clear. Herceptin alone had not achieved favorable results, but since we seemed to be at an impasse she reluctantly decided to allow me twelve infusions which were to be administered over a twelve week period just on the off chance. If there was to be any improvement it would be evident in that amount of time. I was to receive the initial loading dose on March first.

In addition, I had been working with Dr. Martin as his experimental mouse the whole month of January. Slowly the various protocols, both oral and topical were tried, assessed and revised again and again based on my feedback. He was well aware of the gravity of the situation. By the beginning of February he had produced a treatment program in line with the latest medical findings. It was during this period also that he told me that the program advised by the nutritional oncologist was incompatible with his protocol. I would need to choose. I chose Dr. Martin’s treatment protocol. Next, I visited my herbalist and informed him what was occurring on all fronts and asked if he would be willing to prescribe the strongest anticancer herbs he could in the hope that they might act as a support for what I was about to undergo. He was pleased with the decisions I had made and agreed to help but like Dr. Martin held little hope that Herceptin by itself would produce the desired result.

On March 5th I saw my oncologist again. When she viewed the lesion this time a smile came across her face. In the region near the sternum a small portion of new tissue had developed within the lesion and other parts looked better overall. The lesion was definitely less angry, the strong odor had completely abated and the discharge had decreased. She said she could not imagine Herceptin working this fast. I told her it was not the Herceptin. She asked what I meant by that statement. I informed her that I had not started Herceptin, that they were too busy and had to reschedule my start date for the 11th of March. She seemed taken aback. She knew that I was doing other “stuff” but made it quite clear that she put no stock in any of it. Thus, no questions were asked nor did I volunteer any information. I was to see her again in a month’s time.

By July 2004, three months later, the lesion was about 90% healed. Some regions were thick and lumpy but they had closed nevertheless. I had followed Dr. Martin’s instructions faithfully and I did complete the 12 weeks of Herceptin and continued with it at my oncologist’s insistence. She claimed she had never seen such a drastic reversal with Herceptin but was convinced it was doing the trick. She even took photos to show the oncology board. My herbalist too was amazed but reiterated that Herceptin just doesn’t do this by itself. He knew what else I was doing. Dr. Martin also was overjoyed, not so much by the outcome, however, which he expected as by the speed with which it had occurred.

As the end of August approached, and as the lesion was now almost completely healed, I felt the need for a break. The weekly IVs were beginning to get to me along with the various other protocols. I had started teaching again, I had a heavy load and I needed time to get everything properly underway. Besides, all my bloodwork and other tests were fine. In addition, I thought I deserved some time off. I had been diligent and had worked hard and I just needed to get away from everything to do with cancer for a bit. Dr. Martin, believing the lumpiness of the healed lesion was most likely scar tissue, understood. My oncologist was not convinced about those regions but since she had to be away for a month she decided to allow me the time off but with the proviso that I continue to have my blood tested and to resume the Herceptin if anything changed. She would leave a standing order. My herbalist, on the other hand, was not happy with my decision and was convinced that the lumpiness was cancer. He tried his best to convince me to continue with everything for a few more months at least before taking a break. I reiterated that this was something I needed for my mental health if nothing else.

Consequently, I went off of all treatments for approximately five weeks. During that time I was working with Dr. Martin to try and soften what we thought was scar tissue. Looking back now the break was a mistake. The results of my bloodwork on the 27th of September confirmed as much. My CA 15-3 had jumped considerably. Other test results were not that great and the lesion had opened in three relatively small areas. I was devastated. I resumed the Herceptin on October 6. Dr. Martin in response designed an even stronger version of the protocol I was on. But as the days and weeks passed nothing seemed to be working as it had before. Except for the center section everything had broken open again. I was becoming more and more distraught without realizing it, but even so I continued with everything as directed and reported on a daily basis. About the middle of December, however, after discussing the matter in greater detail with Dr. Martin, he decided upon a different course of action, a completely new topical and enhanced oral protocol. Within a few days I noticed that the lesion was beginning to respond. Although it has been slow going this time the healing is again taking place. The CA 15-3 is down and the rest of my bloodwork is normal. Most of the cancer “bumps” are shrinking and drying up. So this is my current status as I enter the new year 2005.

I offer this account to all those who continue to suffer from this terrible disease. I do so not as a course of action to be imitated, recognizing that each individual situation is unique, but as a source of hope and encouragement to those still navigating these dark waters. To the many who have prayed for me and have contributed to my care during these past years I remain forever grateful. But I am most grateful and indebted to my dear friend Dr. Stephen Martin whose selfless commitment and ongoing research has resulted in the development of protocols based on natural substances which are proving effective in the fight against a variety of life threatening illnesses. Without his continual work on my behalf, his insights, devotion, and good humor, as well as his initial willingness to take a chance on me, it is my firm conviction that the results I have experienced and continue to experience could never have been achieved.

May God speed you on your own journey.

Love,Anna