I’m launching a research-focused consulting service for people who have been diagnosed with a serious disease, and one where while there is no current solution, substantial research is being done and trials conducted. My skill is uncovering crucial, difficult-to-get information through interviews and AI. I’m offering to help those of you dealing with a dire diagnosis by finding who is doing the most promising research relevant to your condition. I’m also here, should you want it, to help you with advice on diet, sleep, exercise and other important lifestyle considerations. Cancer can be a lonely journey. I’ve been through it twice so I know. I am offering to be good company, a shoulder to lean on, a good listener, on what is a difficult journey.

Thirty-four years ago, in my mid-thirties, I was diagnosed with non-Hodgkin’s Lymphoma (stage 4a which means it was in my bone marrow, 52 tumors throughout my body including one in my mesentery that was 15 x 22cm). It was considered incurable. In fact, I was told by my oncologist that of the thousands of people diagnosed every year with the form of lymphoma I had, there was only one documented case of survival that he was aware of. It was in the hospital getting experimental treatment for lymphoma that I taught myself how to paint. And five years or so ago I was diagnosed with prostate cancer. That was successfully resolved by radio implants after an experimental treatment with a modified virus developed in Japan proved helpful but ultimately unsuccessful.

I’ve mentioned my diagnosis from time to time in Heron Dance over the last three decades and readers have frequently been in touch to tell me of their recent diagnosis. Lately this has become more and more common. Some months it occurs several times. I’m often asked for any advice I might have. I’ve put many, many hours over the years into sharing how I survived and forwarding research that might be helpful.

Now, as I look for ways to generate revenue to keep Heron Dance going while I work on books of my art and the ancient poetry of Zen and Taoist hermit monks, I’ve decided to offer my experience and research skills to no more than two readers considering or undergoing treatment for a potentially life-threatening diagnosis. I also plan to publish a free Substack on subjects related to cancer and using AI to research emerging treatments. I’ll publish on anything with any real potential to be helpful.

Though I use the word cancer, these research techniques apply equally to other life-threatening diseases such as Alzheimer's, ALS, etc. If you have one of these diseases and want to talk, please reach out. For those who are diagnosed and want to be made aware of options, I offer the following consulting and research services:

Research Into Survival Rates By Those Undergoing The Prevailing Standard of Care

What are the overall survival rates? What are the differentiating characteristics of those who survive long term and those who don’t, including treatments received, age, co-morbidities, exercise regimen, diet, etc.? An often surprising amount of this data can be found in the research at the National Institute of Health and in university studies.

Research Into Emerging Treatments

There are hundreds of trials of new drugs and new approaches to surgery and radiation going on around the country, including the use of modified viruses that can stimulate the production of protective anti-bodies. There is research, often cited in the press but rarely available to patients, on the genetic analysis of a particular cancer and individualized treatment protocols most likely to defeat that particular disease. Research using artificial intelligence can help find where these options are available.

Interviews of Leading Researchers

When I worked on Wall Street, I did pre-offer due diligence for corporate acquirers. Mostly I looked for hidden problems — where the bodies were buried and the skeletons hidden in potential acquisition candidates. In other words, what acquisitions might lead to disaster. I researched asset values, emerging competitor technologies and customer viewpoints. I found that if you approach a hundred people for information, you might get crucial insights from one or two and helpful collaboration from four or five more. When addressing my two cancer diagnoses I followed the same practice — finding out who was doing groundbreaking research and asking them for an interview. Few responded but those who did provided valuable information. Sometimes they would point me towards others they particularly respected or who had special knowledge. This research led to me enrolling in two trials — one at the NIH in Bethesda, Maryland (for lymphoma) which did not help and one at the Brigham and Women's in Boston (for prostate cancer) that did. Ultimately, I found a drug developed by Fritz Kuehne, a chemist who headed the Red Cross in Germany. It was originally developed to treat physicians who returned from Chernobyl with sublethal radiation exposure. That drug — WF10 — had a dramatic, positive impact on my health. It allowed me to survive until Rituxan was developed and available. The combination of Rituxan and WF10 saved my life, I believe. Before that, I had been enrolled in an experimental bone marrow transplant program at the Dana Farber. I was removed from that program (luckily) when my blood counts deteriorated as a result of chemo. I was anemic and a borderline hemophiliac.

Cancer is a maze of conflicting information and rapidly changing science. Oncologists and surgeons who practice in the area are often too busy with their caseload to keep on top of latest developments. For patients, it can be a difficult landscape of conflicting opinions, of treatment results that are favorable one month and adverse the next, of emotions and vague half-answers that sometimes make no sense. It is my intent to use what I’ve learned to be on the side of a few patients navigating these difficult waters.

Research Into Alternative Treatments

I am not a big fan of most alternative treatments, including those espoused by naturopaths and by clinics in Mexico and South America. I will never suggest a cancer patient ignore modern medicine and focus solely on these alternatives. Pursuing them in addition to modern medicine is fine. I’m happy to find out what I can about the actual supporting (or contradictory) data, with an open mind. My experience though, and I do have substantial experience with alternatives, including injecting 714-X into my lower abdomen, is not good. Nor is it good among those readers who rejected modern medicine and instead relied solely on homeopathy, naturopathy, on clinics in foreign countries or other alternatives. All I’ve known have ultimately died of the disease they were diagnosed with. In my case, the alternatives I tried — macrobiotics, uncooked fruits and vegetables, 714-X mentioned above, and a number of others — had no discernible positive result. These alone, or in combination, may be helpful for some. I don’t know. But many of these alternatives are offered without verifiable data. If I was running an alternative cancer treatment clinic in Mexico, I’d certainly publish the data if it was favorable.

On the other hand, there are drugs that are not part of modern American medicine that have substantial data to back them up. I am a believer, for instance, in Beta-Glucan, a drug widely used in Europe but that is not patentable and therefore not marketed to US physicians by US drug companies. I interviewed a researcher at Biothera, a Beta-Glucan manufacturer, years ago who told me that he was giving it to his mother who had non-Hogkin’s Lymphoma with favorable results, and that the US government had stockpiled it to treat soldiers in the event they became exposed to radiation. This has some significance since the side effects of radiation can have a severe impact on one’s immune system and thus leave us exposed to other pathogens and cancers. And, as I mentioned, the drug that may have saved my life also had properties that countered the negative effects of radiation. Both dramatically boost the production of macrophages.

Fasting, Diet, Exercise

Lifestyle has a major effect on whether or not we get cancer. It probably has an impact on Alzheimer's (sleep habits, oral hygiene). After diagnosis however, while certainly helpful and worth doing, lifestyle modification has the problem faced by many cancer treatments. The cells that are susceptible to the treatment die and those that are not replicate. I’ve known people who tried to deal with cancer solely through healthier choices. All died. I’ve read about survivors — for instance in books about Macrobiotics — but not ever encountered an actual survivor. I note that the primary advocate of Macrobiotics in the United States, Michio Kushi, his wife and his daughter all died of cancer. Michio was 88 at the time of his death, which undoubtedly was a primary factor, but nevertheless one should treat alternative treatments with skepticism unless backed by data.

Patient Advocate

I can’t offer medical advice because I’m not a doctor but I can find experts who may offer a potential solution. If you want me to find a second opinion, I’ll try to find a physician who is respected by his or her colleagues for their insight, compassion and experience with a particular focus on pre-eminent speakers at physician conferences. While, as a non-relative, I’m generally not allowed in patient/physician meetings, I’m available to discuss what was said and to research any options that might emerge from these meetings.

The Use of AI

AI will totally transform medical diagnosis and treatment over the next several years. Diseases will be much more accurately diagnosed by inputing blood test results and other data into computer systems. Outcomes of different treatment regimens — what’s working and what isn’t — will be constantly fed into AI systems, and updated minute by minute based on millions of incoming data points. Treatment protocols will be adjusted frequently, perhaps daily. For now, the main use of AI to cancer patients is in identifying experimental treatment options and leading experts in each cancer or disease niche.

I use four platforms — Google Gemini, Anthropic/Claude, Perplexity and Grok — to research the options available and as the basis of discussion with cancer patients in identifying which might be worthwhile pursuing.

Who I Can’t Help

There are four categories of patients not well suited to the approach I take:

• If you’ve been diagnosed with cancer or other disease which modern medicine can treat with a 80% or higher success rate, take advantage of that. Read my articles, be obsessive about self-care, rest, good diet and be in touch if your prognosis deteriorates. In a follow-up post, I’ll provide signup details on the Substack currently in the planning stages.

• Patients who do not want to consider options or alternatives other than those suggested by their oncologist. When your prognosis is dire, my suggestion is to listen to anyone who has experience in cancer treatment and who has verifiable data to back up their opinions. But if you are not open to other perspectives, you and I are not a good match.

• Patients who are not open to modern medicine and want to just focus on alternative medicine. Modern medicine isn’t perfect but it has a lot to offer. For one thing, even when modern medicine doesn’t have a solution, practitioners are highly knowledgeable about the characteristics of a particular disease. I have found it absolutely crucial to listen them, or to anyone, who has a view based on data and knowledge. You never know when you will come across that crucial little insight that leads you in a worthwhile, potentially life-saving, direction.

• Patients without health insurance. If you have been diagnosed with a potentially fatal cancer, and don’t have health insurance, get it. Not having health insurance will lead to unwise decisions about crucial options. Many, perhaps all, experimental cancer treatment trials require health insurance because providers can get reimbursement for that portion of the regimen that is considered standard care — blood tests, etc. If you can’t afford health insurance, investigate Medicaid. You may qualify. The quality of care you get under Medicaid is no different from that you’d receive with insurance.

Longevity Versus Quality of Life

Modern medicine will often suggest courses of treatment that have a major adverse impact on quality of life with no real prospect of success. These are treatment protocols that the oncologist himself or herself would refuse if they were diagnosed with the particular terminal disease. I assume they do this because they want to offer the patient and loved ones some hope even if not founded on realism. Or they believe that life must be prolonged regardless of the pain and suffering caused.

I’m here to try and find options that may result in improved quality of life and that may succeed. If none are available, I am unfortunately of very little use.

Cost

First, before we begin, an extensive interview so we can both try to determine if we are suitable for working together with a reasonable prospect of a favorable outcome. There’s no charge for that initial interview.

If we both want to go ahead, the cost of this research service is $5000 a month. I commit to spending 10-15 hours a week per consulting client and will report at least weekly on what I’m finding — more often if I come across something significant and potentially time-sensitive. I’m also available to consulting clients 24/7. To start, while I continue to work on Heron Dance projects, I can take on no more than two research clients. If ultimately there is demand for this service, I’ll offer a sliding scale to those not able to afford $5000 a month.

How To Reach Me

Please email me at rod@herondance.org. Tell me about your diagnosis. If I think that there is any possibility I might be helpful, I’ll send a link to my appointment calendar. If I don’t think I can be helpful, I’ll let you know right away.