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Multiple Myeloma an incurable disease, but I have spent the last 25 years in remission using a blend of conventional oncology and evidence-based nutrition, supplementation, and lifestyle therapies from peer-reviewed studies that your oncologist probably hasn't told you about.

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Myeloma Research?!

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Myeloma research? You were told that a multiple myeloma diagnosis meant that you could live 8-10  years. Consider thinking outside the conventional therapy box…

I received my myeloma diagnosis in early 1994. I have learned that myeloma (MM) patients, survivors, and caregivers trust their board-certified oncologist to prescribe therapies that are based on conventional cancer  research – thoroughly researched and tested therapies that they believe will treat their multiple myeloma diagnosis.

The challenges of myeloma research listed below question whether the trust that we myeloma patients put in conventional oncologists that give us a multiple myeloma diagnosis is trustworthy.

I am a long-term MM survivor and MM coach. When I was first received my multiple myeloma diagnosis I did what most cancer patients do. I followed the instructions of my oncologist. I underwent chemo regimen after chemo regimen.

After several years, three relapses and “we can do nothing more for you” I was forced from the world of traditional oncology. What went wrong?

Does conventional toxic chemotherapy save lives? It didn’t save my life. In fact, I now live with life-threatening side-effects from the very therapies that were supposed to help me.

To learn more about myeloma oncology- read the posts linked below-

Conventional myeloma research presents many challenges to the average MM patient, survivor and caregiver. It is in every MM patients’ interest to understand the challenges presented below.

David Emerson

  • MM Survivor
  • MM Cancer Coach
  • Director PeopleBeatingCancer

Recommended Reading-

To Learn More About Diagnostic Criteria for Multiple Myeloma Click Now

What is basic Cancer Research?

The vast majority of cancer nonprofits are talking about research into conventional therapies such as surgery, radiation therapy, chemotherapy, hormone therapy, Immunotherapy and combined treatment modalities such as chemo-radiotherapy.

Raising money for conventional cancer research sounds great. However, few people would donate to or raise money if they understood that conventional cancer research might not benefit MM survivors and caregivers. Most people want to know what their donations accomplish.  The articles below outline some of the challenges with conventional cancer research.

Challenge #1-

Can Most Cancer Research Be Trusted?

Despite the grand scope of the faked research, no one else at Duke was reviewed or cited by federal investigators in last week’s report.

Challenge #2-

“Cancer at the core of evidence-based medicine…Publication bias… Research misconduct and more.

Watch Dr. Ben Goldacher explain this wide-spread problem during his TED TALK.

Challenge #3

The politics of basic academic cancer research versus commercial interests. Do research dollars fund basic research or do they fund commercial projects? Do donations pay for drug companies to bring products to market? Why do the researchers discussed below care enough to quit ?

Cancer researchers resign in science v. commercialization flap

“A battle about balancing science and commercialization caused 33 scientists to leave a Texas cancer research institute, The Wall Street Journal reports.

The scientists left the Cancer Prevention and Research Institute of Texas to protest moves by an oversight committee appointed by state political leaders. Some of the departing scientists said the committee pushed to fund commercial projects regardless of whether they had been vetted by researchers, The Wall Street Journal writes….”

Lawmakers want answers from the cancer-fighting agency

“Two Republican state lawmakers who helped create Texas’ embattled $3 billion cancer-fighting effort are now demanding to know how it approved an $11 million grant to a biomedical company even though the proposal wasn’t reviewed.”

Challenge #4-

Today’s research will take years to translate into possible therapies.

Breast cancer research sometimes misunderstood

“As thousands of Canadians walk and run to raise funds for breast cancer research this weekend, the reality is that much of the advances in scientific understanding will have little immediate impact on patients.”

Challenge #5

Clinical trials do not portray the real world of everyday cancer. Cancer patients may be older, may have other health problems, may be negatively affected by side effects- in short, controlled clinical trials are just that- controlled. Chances are pretty good that your experience will be less favorable than clinical trial results.

ASCO: Cancer Survival Lower in Real World

“CHICAGO — Older patients with advanced cancers treated in the community had survival that fell short of that for patients who received the same regimens in clinical trials, analysis of a large government database showed…Patients in the community had a median survival of 16.1 months, which was 30% lower than that of patients treated with the same regimen in a cooperative-group randomized clinical trial…”
Challenge #6-
 I call this the HeLa problem.  The very first human cancer cells came from a woman who died of ovarian cancer in the fifties.  Her name was Henrietta Lacks. The Immortal Life of Henrietta Lacks is one of the best non-fiction books I have ever read. As the article below states, as much as a third of all cancer research were mistakenly identified.

Lab Mistakes Hobble Cancer Studies But Scientists Slow to Take Remedies

“Last year, cancer researcher Robert Mandic got news no scientist wants to hear. After publishing a paper on a rare head-and-neck cancer, he learned the cells he had been studying were instead cervical cancer. He notified the journal Oral Oncology, which retracted the article…”

Cancer experts seeking to solve the problem have found that a fifth to a third or more of cancer cell lines tested were mistakenly identified—with researchers unwittingly studying the wrong cancers, slowing progress toward new treatments and wasting precious time and money. In hundreds of documented cases that undermine a broad swath of research, cancer samples that were supposed to be one type of tumor have turned out to be another, through either careless laboratory handling, mislabeling or other mistakes

It is a problem hiding in plain sight. Warnings to properly test cancer cell lines have sounded since the 1960s, a decade after scientists started making human cancer cell lines.

More HeLa problems: For decades, a widely used bladder cancer line hasn’t been what scientists thought

“About a year ago, we wrote about the retraction of a paper in Oral Oncology that highlighted a big issue in oncology research: Widespread contamination of cancer cell lines by other lines, making findings difficult to interpret…”

Challenge #7-

Study results are biased by the study’s sponsors. The vast majority of all cancer research is paid for by for-profit companies.

Sponsoring by the Pharmaceutical Industry Can Bias the Results of Drug Studies, Study Suggests

“Drug studies financed by pharmaceutical companies frequently show positive results in favor of the sponsor...The authors conclude that pharmaceutical companies exploit a wide variety of possibilities of manipulating study results. Apart from financing the study, financial links to the authors, such as payments for lectures, may tend to make the results of the study more favorable for the company. Not only the results themselves but also their interpretation, are significantly more often in accordance with the wishes of the sponsor.”

Challenge #8-

“Clinical Trials” are… difficult.  This last one is complicated. I will outline the issues below but my point is that the Food and Drug Administration (FDA) mandates controlled clinical trials with lots and lots of problems associated with them.

Living With Cancer: The Trials of Cancer Trials

“Am I crazy? Maybe, yet without such evidence of cancer’s return, I won’t be eligible for a trial that can offer me an experimental drug not yet approved by the Food and Drug Administration but potentially useful at keeping my (multiple myeloma diagnosis) cancer at bay for a bit longer. “At bay.”
 
Topol: Get Rid of the Randomized Trial; Here’s a Better Way

“But one of the things that have been missed along the way is that how we do clinical research will be radically affected as well. We have this big thing about evidence-based medicine and, of course, the sanctimonious randomized, placebo-controlled clinical trial. Well, that’s great if one can do that, but often we’re talking about needing thousands, if not tens of thousands, of patients for these types of clinical trials. And things are changing so fast with respect to medicine and, for example, genomically guided interventions that it’s going to become increasingly difficult to justify these very large clinical trials.”

Challenge #9-

Plain old-fashioned scientific fraud. Faked data that leads to false outcomes. And patients put at risk. 

Huge Cancer Research Fraud, But Only One Doc Blamed

“Despite the grand scope of the faked research, no one else at Duke was reviewed or cited by federal investigators in last week’s report…

“Even more worrisome than the extensive and persistent behavior of one investigator is the institutional oversight of the research and patient treatment,” they write.”

Challenge #10-

Exaggeration…

Mayo Clinic: 1 in 3 early clinical trials on new drugs and medical devices exaggerate the treatment’s effect on patients

“Indeed, more than a third of early clinical trials for drugs and devices in the study showed positive results that turned out to be substantially inflated when compared with the results from subsequent trials…”

 

 

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